The Host

Julie Rovner
KFF Health News

@jrovner

Read Julie's stories.

Julie Rovner is chief Washington correspondent and host of KFF Health News’ weekly health policy news podcast, “What the Health?” A noted expert on health policy issues, Julie is the author of the critically praised reference book “Health Care Politics and Policy A to Z,” now in its third edition.

The Supreme Court this week agreed to hear a case that could further restrict abortion — even in states where it remains legal. The case to determine the fate of the abortion pill mifepristone is the first major abortion case to come before the court since its overturn of Roe v. Wade in 2022. It could also set a precedent for judges to second-guess scientific rulings by the FDA.

Meanwhile, legislation is finally moving in the House and Senate to renew a long list of health programs that technically expired at the end of the last fiscal year, on Sept. 30. But the bills to fund community health centers and build on programs to fight the opioid epidemic are unlikely to become law until January, at the soonest.

This week’s panelists are Julie Rovner of KFF Health News, Riley Griffin of Bloomberg News, Alice Miranda Ollstein of Politico, and Lauren Weber of The Washington Post.

Panelists

Riley Griffin
Bloomberg

@rileyraygriffin

Read Riley's stories

Alice Miranda Ollstein
Politico

@AliceOllstein

Read Alice's stories

Lauren Weber
The Washington Post

@LaurenWeberHP

Read Lauren's stories

Among the takeaways from this week’s episode:

• The Supreme Court will consider a case challenging access to mifepristone, opting to review FDA decisions in recent years governing the loosening some requirements for distribution and use of the so-called abortion pill — such as the agency’s call allowing pregnant people to obtain the drug without a doctor’s visit. While the drug’s overall approval is not in question in this case, the drug industry argues undermining the FDA’s authority could open the floodgates for challenges to other pharmaceuticals and have a chilling effect on drug development.
• Legal experts say the Texas high court’s ruling blocking the abortion of a pregnant woman whose fetus has a fatal condition calls into question whether doctors are able to identify any medically necessary circumstance under existing legal exceptions. And, in other court news, the Supreme Court will let stand a Washington state law banning conversion therapy.
• On Capitol Hill, lawmakers are bundling an assortment of bipartisan, generally unrelated health measures so they can be approved, possibly as part of a government spending package in January. But can this Congress — which has proved unproductive even by recent standards — finish its work in a presidential election year?
• One piece of legislation under consideration would address the opioid epidemic, renewing grants for state efforts to prevent and treat opioid use disorder. The epidemic has taken a toll, but it is not the only problem contributing to a troubling drop in U.S. life expectancy.
• And cyberattacks are on the upswing in health care, with new revelations about an attack that targeted the Department of Health and Human Services at the onset of the pandemic.

Also this week, Rovner interviews University of Maryland professor and social media superstar Jen Golbeck about her new book, “The Purest Bond,” which lays out the science of the human-canine relationship.

Plus, for “extra credit,” the panelists suggest health policy stories they read this week that they think you should read, too:

Julie Rovner: The Washington Post’s “They Watched Their Husbands Win the Heisman — Then Lost Them to CTE,” by Kent Babb.

Alice Miranda Ollstein: Politico’s “A Deadly Delivery Highlights ‘Falsified’ Heat Records at USPS,” by Ariel Wittenberg.

Lauren Weber: The Washington Post’s “Applesauce Lead Cases in Kids Surge Amid Questions on FDA Oversight,” by Amanda Morris, Teddy Amenabar, Laura Reiley, and Jenna Portnoy.

Riley Griffin: Bloomberg News’ “The Next Blockbuster Drug Might Be Made in Space,” by Robert Langreth.

Also mentioned in this week’s episode:

• The American Prospect’s “The Life-and-Death Cost of Conservative Power,” by Paul Starr.
• Bloomberg Businessweek’s “The Untold Story of a Massive Hack at HHS in Covid’s Early Days,” by Jordan Robertson and Riley Griffin.

click to open the transcript

Transcript: Abortion and SCOTUS, Together Again

KFF Health News’ ‘What the Health?’Episode Title: Abortion and SCOTUS, Together AgainEpisode Number: 326Published: Dec. 14, 2023

[Editor’s note: This transcript was generated using both transcription software and a human’s light touch. It has been edited for style and clarity.]

Julie Rovner: Hello, and welcome back to “What the Health?” I’m Julie Rovner, chief Washington correspondent for KFF Health News, and I’m joined by some of the best and smartest health reporters in Washington. We’re taping this week on Thursday, Dec. 14, at 10 a.m. As always, news happens fast, and things might’ve changed by the time you hear this. So here we go. We are joined today via video conference by Alice Miranda Ollstein of Politico.

Alice Miranda Ollstein: Good morning.

Rovner: Lauren Weber of The Washington Post.

Lauren Weber: Hello, hello.

Rovner: And we welcome to the podcast for the first time Riley Griffin of Bloomberg News.

Riley Griffin: Thanks for having me.

Rovner: Later in this episode, we’ll have my interview with University of Maryland professor Jen Golbeck, who is probably better known to anyone on social media as “GR Mom,” the woman who takes in half a dozen special-needs golden retrievers at a time. She’s co-author of a new book called “The Purest Bond” that explains why our love for dogs is not just all in our heads. But first, this week’s news.

We will start with abortion this week. In news, Alice, that you anticipated last week, the Supreme Court has decided to hear a case out of Texas regarding the abortion pill mifepristone. Depending on how the court rules, it could make abortion less available even in states where it remains legal. But Alice, this might not be as consequential as it looks at first blush because they didn’t take the case that could have impacted the overall approval of the drug, right?

Ollstein: That’s right. So they’re basically taking up what the 5th Circuit decided, not what the district court decided. The district court, as we remember very dramatically, decided that FDA approval of mifepristone decades ago was done incorrectly and would have moved to effectively ban the drug nationwide. What’s at issue before the Supreme Court are subsequent FDA decisions to make the pill more easily accessible, but those are really important and sweeping. I mean, I feel like the mail delivery piece is getting a lot of attention, but it’s not just that.

These are decisions that, one, approved a generic version of the pill, which made it cheaper and more accessible all over the country. It expanded its use from just the first seven weeks of pregnancy to the first 10 weeks of pregnancy. Those crucial weeks are when a lot of people realize they’re pregnant and make a decision about that. And more recently, allowing retail pharmacies to dispense the pills and, crucially, not requiring an in-person doctor visit to obtain them.

So the companies that make the pills say that if the Supreme Court were to side with the groups challenging these rules, it would be a de facto ban, at least temporarily, while they have to go through relabeling and retooling and everything. And that could take a while. So I think while abortion rights groups are celebrating that the overall approval of the pills is not in question, this is still very, very consequential, and it’s going to be decided just months before the presidential election, keeping this really front and center in people’s minds.

Rovner: Just to confirm though, the Supreme Court has already weighed in and put even what the 5th Circuit did on hold, right?

Ollstein: Yes.

Rovner: So nothing has changed at the moment from what’s originally available.

Ollstein: That’s right. And so in states that have their own bans, the bills are still banned. In states where they’re protected, they’re still protected, and that will continue until the high court hears and rules on the case.

Rovner: But even though, I mean, the court is not going to take up the case where the lower-court judge said that the FDA shouldn’t have approved this in the first place, this could still be the Supreme Court basically overruling FDA’s judgment about what’s safe and effective, which could have big implications for drugs way beyond mifepristone, right?

Ollstein: That’s what the companies that make the pills and other unrelated pharmaceutical companies have been arguing. They say that this could open the floodgates for anyone with a grievance against any drug to try to challenge it. People are worried about contraception. People are worried about covid shots. Anything that’s generated any level of pushback and controversy, that would greenlight this strategy for them.

And the pharmaceutical industry has also argued that it could put a chilling effect on companies even submitting new drugs for approval, saying, if they don’t have the confidence that a court could come in later and yank away the approval, why would they feel confident in putting this out on the market? So this has the potential to be really disruptive. And I would note it comes at a time when the Supreme Court is overall really questioning deference to federal agency decisions across the board, anything from the Commerce Department to … there was a case about phishing regulations. And so, overall, it’s this “war on the administrative state” effort and this is definitely a piece of it, and it could affect health care in a lot of ways.

Rovner: Riley, you watch the drug industry. First, they were staying out of it, and then they finally decided, oh, we should get a little bit exercise because this could be important. Where are they these days?

Griffin: I think what’s been so novel for me situated here in D.C. is to watch industry lobby conservatives on this agenda. To say, this is about business interests. And if you break this house of cards, what else is going to come crashing down? So Alice made that point, and it’s a really important one. The implications here are far-reaching. And in questioning the FDA’s authority in this space, you are really going so much further, and it calls into question other drugs.

Rovner: So great, we’ll have something to talk about for weeks and weeks to come. Well, still in Texas — why does it seem that all the abortion news comes out of Texas? Last week we talked about Kate Cox, a 31-year-old mom of two, whose fetus was diagnosed at 20 weeks with a birth defect incompatible with life.

When we left off taping last Thursday morning, her lawyers were asking a Texas state judge for permission for her to have an abortion because her doctor said continuing the pregnancy could threaten her health and/or her ability to have more children in the future. Alice, a whole bunch of things happened after that. Catch us up.

Ollstein: People are really seizing on this case because it really calls the question on a lot of the assumptions of our post-Roe legal and health care landscape. And so a lower court ruled in her favor and said she should be able to get an abortion to protect her health and her ability to have another child. They said that the state should be barred from bringing criminal charges against the doctor performing the procedure. So that was all set to go forward.

And then the Texas Attorney General Ken Paxton, who recently survived an impeachment attempt, I should note, moved to intervene and moved to ask the Texas Supreme Court to stop this abortion from happening. He argued that the woman should not qualify for a medical exemption, and the Texas Supreme Court put a hold on the lower-court ruling and said it needed a little more time to think about it. And then they came back and ruled against the woman and said she should not be allowed to get an abortion. But it was moot in terms of her specific situation because of the threats to her health. She had already been to the emergency room several times at this point, and so she decided to go out of state for the procedure.

When I wrote about this, I tried to look into what are the bigger implications here. And a legal expert said something that really struck me, which is that the entire Dobbs premise is that you could ban so-called elective abortions, but maintain access to medically necessary ones. Sometimes they’re called therapeutic abortions. There’s a lot of weird terminology. And this really calls that question, can you always distinguish between those two?

Who’s to say? Here, the doctor’s interpretation of which was which clashed with the state’s interpretation of which was which. A lot of states have these so-called “life of the mother” exemptions, and this really shows that they are very difficult to use in practice.

Rovner: I’ve covered this for so many years at the federal level with little wording changes to the Hyde Amendment, and the big fight has always been between exceptions for the life of the mother and for the health of the mother. And the anti-abortion movement has always said, you can’t have a health exception because that would include mental health and it would just include anyone who said she doesn’t want to be pregnant.

So the phrase is always “It’s a loophole you can drive a truck through.” But then you get to these cases where it clearly is women whose water breaks at 20 weeks, it will eventually be life-threatening, but is immediately health-threatening. But a lot of these states don’t have health exceptions because they say that they could be used too broadly, and that’s kind of where they get stuck, right?

Weber: Yeah. I just wanted to chime in and say that I think what’s interesting about this case is this is the first time I’ve heard a lot from folks that aren’t in the media at all, don’t read the media every day, don’t see the flood of stories that this podcast group and folks, probably many of the listeners to this podcast, have seen about abortion coverage. It’s the first time I got a wave of phone calls being like, “Hey, can you explain this to me? What does this mean?” So I think that this story out of Texas, this reality, this lawsuit, has broken through to the rest of the country.

I mean, granted, this is an anecdotal sample size of my family and friends that live in the heart of the country, but I do think this has broken through in a way that many of the other stories that we’ve all written here have not. And so I’m very curious to see how this continues to play out because I do think this is gaining a lot more awareness with these lawsuits. We have this one, and then I know there’s one in Kentucky that I think we’ll see play out in the next couple weeks and months, obviously.

Rovner: Yeah, and I think one of the things that’s really important about this is that we know her name and we know what she looks like because she’s been brave enough to come forward in the middle of this medical crisis and allow them to use her name and do TV interviews. And Alice, I interrupted you.

Ollstein: Oh, yes. A couple things. We haven’t mentioned that this was a non-viable pregnancy. Her fetus was diagnosed with a almost certainly fatal condition. So I think that’s another key piece of it. Other states have an exemption for fetal diagnoses like this where someone can get an abortion. Texas does not. And I talked to some Texas anti-abortion groups who were insistent that she should not be granted an exception and that the “compassionate” thing to do would be to force her to give birth and then watch the child die and mourn it. They were very explicit about that.

And so I think that is also capturing a lot of people’s attention, like Lauren was saying, where they’re fighting for a potential life that is very potential at this point. And you’re hearing a lot of rhetoric from conservatives right now that are insisting that allowing exemption for fatal fetal conditions is akin to eugenics. They say that these fetuses should be given every chance at life, even if that life is very brief and sometimes painful. So I think this is a debate we’ll continue to see play out.

Rovner: Yeah, I was surprised. I mean, Kellyanne Conway, of all people, who’s not just the former Trump aide, a prominent Republican pollster, actually had a tweet this week that suggested this is not great for Republicans. What’s happening to this woman? The fact that it’s so public. Riley, you wanted to say something?

Griffin: Yeah, just another point Alice mentioned, “this potential life,” but the attorneys have also mentioned the potential for future lives … that this woman, it’s not just her health being impacted, but it also could decrease her ability to have children in the future, which is another part of this story that I think is really tugging at people’s heartstrings. And just that the ruling came hours after she made the announcement that she’d left the state to get the procedure. I mean, all of these things combined make for such a poignant story.

And I want to bring in some research that has also recently been published, which suggests she’s not alone. Nearly 1 in 5 people seeking an abortion have traveled out of state, according to the Guttmacher Institute, citing data from the first half of 2023. And experts are saying this is probably an underestimate. And when you do get to those states in places where abortion remains legal, wait times are increasingly long.

So there are so many dynamics at play. It’s not just the states where access is limited and we’re seeing these very difficult rulings come down, but what are the consequences in the places where access remains available? But that flood of folks trying to get these procedures have to make that travel. Sorry, I jumbled my words there, but you understand what I’m saying, or I can try again.

Rovner: The other piece of that, if you play that all the way out, where women are having to travel and they often have other kids, so they have to get someone to watch their kids and they have to get time off of work, and they have trouble getting appointments in other states, and that means that these abortions are happening later in pregnancy, which is, I know, not what the anti-abortion movement wants. And also the later in pregnancy you get, the more risks there are and the more expensive the whole thing gets.

So it’s just the whole thing is piling on each other. But I think, Riley, something you said that I think I keep highlighting and want to keep highlighting, most of the women we’ve been talking about individually are women who got pregnant because they wanted to have a baby. These are not women who weren’t using birth control and like, oops, I got pregnant. Kate Cox wants to have more children. This was a very wanted pregnancy. … I think one of the things we’re discovering through all of this is that more pregnancies go wrong than people realize. It’s just that when pregnancies go wrong, people tend not to want to talk about it. It’s painful and awful, and it’s not like having your appendix out. So I think we’re kind of, as a population, discovering that pregnancy is fairly fraught. For every baby that’s born happy and healthy, there are a lot of pregnancies that just don’t work the way they’re supposed to.

Ollstein: And I also have seen a lot of chatter saying, “This is the new frontier. We’re going to see this wave of individual women suing for the right to have an abortion.” And I don’t think that’s true. Kate Cox’s lawyers don’t think that’s true. Most women in this circumstance can’t do this or are not willing to be the public face of a lawsuit and get all kinds of threats and harassment.

And a lot of people aren’t able physically to wait for a court to rule. Even Kate Cox wasn’t. And so the idea that there’s going to be so many people who are actively pregnant and seeking an abortion and have the resources to find an attorney willing to represent them and are willing to go through this, I think I’m hearing that that is not likely at all, that this is somewhat of an outlier.

Rovner: While we were talking about asking permission for courts, the Supreme Court this week declined to review a challenge to a Washington state law that banned so-called conversion therapy. I’m still having trouble wrapping my head around this because it’s like a quadruple negative, but what is conversion therapy and where are we now that the appeals court ruling is being allowed to stand?

Weber: I think a lot of people don’t realize this, but there was actually a report that just came out from The Trevor Project. Conversion therapy is a process in which people try to, they call it, convert LGBTQ folks to have heterosexual relationships, and there could be a wide array of what that means. It involves sometimes psychological therapy, sometimes physical therapy, all kinds of things. Many, many states have banned this because science has shown it is not an effective treatment and can lead to mental health effects.

But I think why this ruling is important is that, as I was saying, The Trevor Project has identified there’s over 1,300 practitioners of conversion therapies across the country. Even though this is banned in so many states, this is a practice that goes on and on and on, despite what seems to be a lot of negative health impacts of it. So the fact that the Supreme Court decided not to take this up at all is considered very much a win for the LGBTQ community, especially considering the fact that this does still go on in many, many states.

Rovner: At least … that’s one thing that’s off the table, at least for the very moment. Well, let us go back to Capitol Hill, where lawmakers are actually passing stuff, albeit so late in the session that these policies are unlikely to make it over the finish line until 2024.

The House Monday night passed a bill that includes a bunch of things we’ve been talking about all year: site-neutral payments in Medicare to prevent hospital outpatient departments from charging multiples more to Medicare than non-hospital affiliated facilities; banning some pricing practices by pharmacy benefit managers; clarifying and extending some price transparency rules for hospitals and insurers, particularly those not making their prices public even though it is now required by law; funding community health centers; and stopping some scheduled cuts to hospitals that serve a high proportion of low-income patients.

Yes, that’s a whole lot of things that don’t necessarily go together, but this is how Congress works. All of these things were supposed to happen before the start of the new fiscal year, Oct. 1. Now, let me check, it is the second week of December. These are pretty bipartisan policies, most of them. What the heck took them until December to get this through?

Ollstein: This has been, even by Congress’ standards, a historically unproductive Congress. We spent a lot of the year battling over who should be the House speaker, for instance. That took up a lot of time. They took a really long summer recess, and there’s been all kinds of back and forth over just keeping the government funded. So that has not left a lot of room for basic policymaking. And there’s the fear that heading into next year — a lot of this stuff is getting punted into next year — that only gets harder in an election year. They’re in session less time. There’s less of an incentive to compromise. People are really retreating into their corners. And so it’s not a great outlook, even for things that really are popular on both sides of the aisle.

I will say, on the site-neutral payments piece, that’s been a long-time goal for a lot of people. And what’s being debated now is seen by some as inadequate, way not enough. It’s only a narrow set of drugs within Medicare. People would like this to be implemented way more broadly.

But you also have the hospital industry really mobilizing against it and saying, “You know all those rural hospitals that are closing down and going out of business? That’s going to get worse if you do this.” And as we know, hospitals are often the biggest employer in a lot of congressional districts, and so that could make this hard to pass as well.

Rovner: The same thing with the PBM [pharmacy benefit manager] reforms, and you’ve got the drug industry and you’ve got the hospital industry. So even though these things are “bipartisan,” that doesn’t mean that there isn’t plenty of opposition out there, which I guess kind of answers my question of why this took so long. I imagine we expect this — now that it’s in a package — to go on the next government funding bill, which should be in January, right? That’s what we’re looking for?

Weber: Yes, it should go in the next government possible spending bill, but who knows? Are we headed towards another shutdown when that happens? I mean, we’ll have to see. And I just want to echo what Alice said. I mean, not doing a lot of lawmaking this year does have real consequences. I mean, when we talk about these site-neutral payments — I’ll never forget when I was at KHN [KFF Health News], I wrote a story about a seamstress who had rheumatoid arthritis, and she went to the same doctor’s office every time to get arthritis shots. Very normal treatment, right? Her doctor’s office moved up one floor and her bill went up 10 times. Her shots went from $30 to $300 because they were then considered an in-hospital facility. So when we talk about things like site-neutral payments, which are jargony words, they disguise what happens to everyday Americans and the actual cost — literal cost, physical and emotional and financial — of legislation like this not making it through.

Rovner: And I think the biggest irony is that when you look at public opinion polls, Democrats and Republicans are so divided on so many things, but one of the things that they are not divided on at all is that health care costs too much and the Congress should be doing things to make health care cost less. So these are things that, if they can get them over the finish line, would actually be popular.

Well, speaking of things Congress was supposed to do before the start of the fiscal year, Riley, you’re watching the progress of another bill we’ve been following, the SUPPORT [Substance Use Disorder Prevention that Promotes Opioid Recovery and Treatment for Patients and Communities] Act, that authorized programs to fight the opioid epidemic. Remember the opioid epidemic? What’s the status of that bill?

Griffin: Yeah, great question. So more than two months ago, provisions from a major 2018 opioid law, the SUPPORT Act, which provides grants for states to pay prevention, treatment, and recovery services for people with opioid use disorders, expired. But on Tuesday, the House and Senate HELP Committee advanced that legislation in an effort to expand treatment for opioid use disorder amid the ongoing epidemic. And, as you’d mentioned, this is known as the Support for Patients and Communities Reauthorization Act and the Modernizing Opioid Treatment Access Act.

And we saw the House overwhelmingly vote to reauthorize the law. And, meanwhile, the Senate HELP Committee also approved its version of the bill, setting up consideration by the full Senate and likely enactment of a new law quite soon. Sen. Bernie Sanders of Vermont said that passing this $4.3 billion piece of legislation to reauthorize and expand the SUPPORT Act would be a huge success and will do a lot to increase the number of substance abuse counselors and mental health professionals.

Rovner: But again, not likely before the end of the year, this bill that should have been done before Oct. 1.

Griffin: Precisely. But again, also a place where you see that bipartisan support. I mean, the opioid epidemic is something that is coming up on the debate stage. Fentanyl is a buzzword that is being used by Democrats and Republicans alike. And not just to talk about the state of affairs here in the United States, where more than 100,000 people die every year of overdose-related deaths, but also to talk about immigration reform and China, right? These topics have all become a swirling part of the discourse on the opioid epidemic, and it’s something to watch going into the 2024 election.

Rovner: Yes. Something else that is linked to the whole opioid epidemic is this concern about life expectancy. We’ve had some new statistics on life expectancy, which is creeping back up now that deaths from covid are falling off, but not as fast as in many other industrialized countries. Women’s life expectancy is still substantially longer than men’s. What is up with this and what is holding the U.S. back? Why is our life expectancy still so much worse than people across the pond?

Weber: I think there’s a lot of things at play in the U.S. and a lot of it has to do … right now, we’re seeing it creep up because of the covid numbers. But what covid exposed was an absolute failure of primary care across the United States, an absolute failure of public health, an absolute failure to confront the fact that the vast majority of the reason that our life expectancy is so much worse than other countries is because of our chronic disease problem that is not getting dealt with.

And frankly, post-covid, it’s not like we’ve seen some sort of ginormous wake-up call overhaul either. I mean, this is the reality that we’re continuing to live in. So while it is heartening to see that the life expectancy numbers are changing a little bit because the covid death rates have gone down, I think the U.S. still has to grapple with the fact that we live in a country that is not addressing these issues. And I mean, I’ve talked about this on this podcast, but to reiterate again, politics does play into this.

As you see, there are … red states’ life expectancies are typically lower than blue states’ life expectancies. And that’s due in part to the fact that in the 1980s, Reagan and Congress allowed the states to decide how they were going to spend their public health and safety-net dollars in different ways, and we’ve seen that play out in this grand experiment over the last couple decades. And, again, doesn’t seem to be much reckoning with that either. So I think these life expectancy trends, where the U.S. lags behind other countries, are going to continue.

Rovner: Yeah, I wanted to actually call out a piece that Paul Starr at Princeton wrote about these red state-blue state differences because a lot of them we had talked about. Red states had earlier death rates because of the opioid epidemic and fentanyl and these deaths of despair.

But, actually, what the research that Paul Starr looked at was more what you’re saying, Lauren, which is that the states that enrolled children in Medicaid earlier are having better outcomes now, 30, 40, 50 years later, than the states that didn’t. And, also, the states that had restrictive gun laws are having longer life expectancies than states that didn’t. Riley, you’re nodding your head.

Griffin: It’s an amazingly unique American paradox to see greater spending on health care and yet shorter lives compared to other countries. Wealthy nations which spend half per person on health care compared to the United States are seeing their citizens outlive Americans by an average of more than five years. I mean, that data when you put it together is just so jarring. And it, as Lauren has been saying, has been cementing itself before the covid pandemic, which obviously had such a devastating toll.

But as we start to see that trend shift, where in 2022 life expectancy at birth was 77.5 years compared to 76.4 the year prior, that change is largely due to a decrease in covid deaths. We’re still seeing deaths from flu, pneumonia, fetal and infant conditions continue to rise. So the infectious disease front doesn’t look good in other spaces. And as you mentioned, Lauren, these chronic diseases that really set the U.S. apart from its peers, GDP-size-wise, is just so jarring.

Rovner: Finally, this week, because there isn’t already enough for us to worry about with the health system, cyberattacks appear on the upswing. Every week we hear about hospital IT systems literally being held for ransom and hacks into databases with our very most sensitive personal information, like 23andMe. Riley, you have a story about a hack at HHS [the Department of Health and Human Services] that was more serious than we thought.

Griffin: Yeah, thank you for allowing me to speak about this story. So my colleague Jordan Robertson and I investigated a cyberattack that hit HHS at the very outset of the pandemic. And at the time, we found that it was downplayed by department leadership. So only years later, it’s three-plus years down the road, we’ve learned through on-record interviews and other discussions that it was actually quite an unusual and rather concerning case. Some of the officials described the attack as an attempt by a nation-state to break into the department managing the U.S. covid response just as HHS’ IT staff were temporarily loosening security to its more than 80,000 employees so that they could log in remotely. They used a common technique, which is called a DDoS, or a distributed denial-of-service attack, where hackers disrupt a computer network by flooding it with traffic.

Now, typically when people think of this kind of attack, it’s meant to overwhelm and then shut down the system. But what we learned through interviews with these officials is that it was more of an act of espionage. Rather than shutting down the system, it was intended to map HHS’ network. So a pretty concerning story to say the least. And another novel part of this is that the officials, the Chief Information Officer Jose Arrieta and Chief Information Security Officer Janet Vogel, said the attack began ramping up as early as October of 2019.

So a lot of strange pieces at play. Those two officials attribute the attack to China, though HHS has said it did not come to that conclusion. And the Office of Inspector General complicated the picture further by saying that they actually found it was connected to a person, an entity in Ukraine. So not all the questions are yet answered, but I think the takeaway from this story is that when a cyberattack hits, not everything is as it seems.

Rovner: Yeah, OK. All right, one more thing that we will consider on our watch list. All right, well, that is this week’s news. Now we will play my interview with Jen Golbeck about her book on the science of dog love, and then we’ll come back and do our extra credits.

I am so excited to welcome to the podcast Jen Golbeck, a computer science professor at the University of Maryland who studies the internet for a living. She does serious research about some pretty grim corners of the online community, which we will talk about in a moment. But she’s probably better known on social media as “GR Mom,” head wrangler of The Golden Ratio media universe that brings the joy of her ever-changing pack of special-needs golden retrievers to her hundreds of thousands of followers every day, myself included, I have to say. Jen, thanks so much for being here.

Jen Golbeck: My pleasure. Thank you.

Rovner: So we’ll get to your new book, “The Purest Bond,” in a moment. But first, I know you spent a lot of time tracking the behavior of some of the most unpleasant and reprehensible people online. Is that part of why you started your little social media corner of happiness?

Golbeck: Yes. So I am very on social media. I’m a computer scientist by training. And after [President Donald] Trump got elected, everybody was angry online. Regardless of who you voted for, everyone was angry. And I just found myself needing an escape from that and I couldn’t really find it. And at the time, I had four golden retrievers and I was like, you know what? That can’t get much happier, so let’s just start putting pictures of them up.

So it was as much therapy for me as anything else, but it really ended up resonating with people and bringing together this wonderful community of people. And anybody who’s not nice, we block and keep them out of there. Things have not necessarily gotten better, but different, since 2016, 2017, and people still need that escape, including me. So yeah, it’s been a real balm in contrast to my regular research work to do that.

Rovner: Which is, you should say, looking at how hate spreads online. Is that a lot of what you do?

Golbeck: That’s pretty close, yeah. I think my technical term I use is malicious online behaviors. So we look at hate speech and extremism, misinformation, conspiracy theories, all that kind of stuff. So dogs are a really nice antidote to that.

Rovner: So with all the terrible things that go on online, I’m fascinated by the devotion of little groups of people who share interests and love to interact with each other. I still obviously have to be on Twitter, or whatever it’s called now, for my job. And I remember when I first met Matt Nelson, actually at your live show, who’s the creator of WeRateDogs (dogrates), I thanked him for making the online hellscape just a little bit less hellish. Do we underestimate how much online relationships can benefit people as much as cause mischief?

Golbeck: Yeah. The research on this is so interesting. Because since Facebook became a thing, we’ve been really interested in what’s the impact, the psychological impact, of social media? And the answer is always it’s super mixed, which is a kind of an academic cop-out answer, but totally true. There’s all kinds of ways that, obviously, the internet can harm people, and we see that now especially with Instagram and girls with eating disorders and body image issues. We know that generally people who spend a lot of time on social media are less happy than people who don’t.

So there are unquestionably some negative impacts, but it’s a little bit easy to forget, and some people weren’t even alive, when we didn’t have access to communities online and how profoundly isolating life could be and how difficult it was to get access to anything, especially social support. So now you can be in a very rural isolated space and very different from what the social mores of your community would dictate you should be. And that’s something where, in the 1990s, you probably would’ve ended up very lonely and depressed and totally unsupported. And with the internet, you’re not. You can find all kinds of people in exactly the same position as you and get that social support. And that’s an extreme example of what we find, which is you can form real relationships online. And that’s why I tend to resist this distinction between the real world and online. The real world absolutely exists online, and I’ve found lots of real friends who I’ve met offline, but also just keep up relationships with online, and it’s so important.

Rovner: So you and your husband, Ingo, don’t just take in rescue golden retrievers, you take in rescue golden retrievers that are often older and sicker and who have been the most neglected and the most mistreated. Was that something intentional or did it just happen?

Golbeck: It a little bit evolved that way. I got to say, I am always drawn to the seniors, and when I started fostering really wanted to get some seniors. That’s not most of the dogs that come into rescue, actually. It’s usually young dogs who people got and weren’t prepared for, and we fostered 20 of those dogs, too. But, eventually, we did get a pair of seniors. I always thought three dogs was too many, so we would have three with a foster. But I was like, I’ll never actually have three dogs. And then we got this bonded pair. Both were seniors, and so there were four dogs. And as soon as they showed up at my house, I was like, oh, they have always lived here. Now I have four dogs. What am I going to do? And it was great, of course. And about a year later, the rescue was like, “We have this 13-year-old and her people don’t want her. Will you take her?” And I asked my husband, I’m like, “What do you think about five dogs?” And he said, “What’s the difference between four and five? It’s fine.” So then we had five kind of old dogs, or old rescues, three of them were old rescues.

And I think, eventually, the rescue group started realizing that I’d just say yes to whatever they would give me. And so the dogs that they were having a hard time finding someone to take, I’d be like, “Yeah, sure, send them over.” It’s been so rewarding, though, to take these dogs who need a lot of love and attention and care and who haven’t been getting it and being able to give them the love and support and medical care that they need. It’s really rewarding. So I was interested, and then we stumbled our way into something that’s turned into a mission for both of us.

Rovner: So I know a lot has been written over the years about the science of how pets can improve human health and vice versa. I actually looked it up. I wrote my first pet therapy story in 1982. I was 5. No, seriously, it was my first job out of college. But you’ve done something with this book that I haven’t really seen before. You’ve merged a lot of the scientific study with some actual practical advice for pet owners. I assume that was very much on purpose.

Golbeck: Yeah. We didn’t want this to be a self-help book or a dog-training book. At the same time, there’s a lot of things that people want to know as they’re discovering the science of how they bond with their dogs. And so we try to work a little bit of tips in there, along with a lot of science and then stories from people who have really seen those benefits in their everyday relationship with their dogs.

Rovner: What’s been the response?

Golbeck: It’s interesting. I was like, I don’t know that all of this is super surprising. There are some surprising results in there. At the same time, what we’re basically saying is that dogs make us feel good and they love us back and we love them a whole lot. And I think anybody who has a dog knows that that’s true. And the response has been consistently people saying, “I was so excited to see my experience reflected in there.”

So we have, for example, a chapter about dogs in the community and how if you have a dog, you meet everybody in your neighborhood by walking your dog. And you don’t even know their names. You maybe know their dogs’ names. And people are like, “Oh yeah, that’s totally it.” But they also feel really validated because we have these feelings about our relationship with our dogs, and some people tell us that we’re crazy. Some people say that we’re making it up. And what people are finding in the book is that there’s actually a ton of really rigorous scientific research to support them having those feelings that they already have. So it’s this great way of being like, “Yes, I’m not crazy. My dog really does love me back. This really is as deep as I feel like it is.” So that’s been a great response that I wasn’t necessarily expecting that’s what it would be.

Rovner: Well, good. Well, Jen Golbeck, thank you for the book. Thank you for all you do. Thank you for what you do for golden retrievers and for the rest of us dog lovers out in the community.

Golbeck: My pleasure. Thanks for having me.

Rovner: OK, we are back and it’s time for our extra-credit segment. That’s when we each recommend a story we read this week we think you should read, too. As always, don’t worry if you miss it. We will post the links on the podcast page at kffhealthnews.org and in our show notes on your phone or other mobile device. Alice, why don’t you go first this week?

Ollstein: Yes. I chose a really upsetting and important investigation by my colleague Ariel Wittenberg. It hits at the intersection of health, labor, climate. It’s about mail carriers around the country who are dying from heat exposure. This is actually killing more male carriers than car crashes or dog bites or any of the things you think of being the hazards of that job. And not only is this happening amid soaring temperatures in the summers in a lot of places in the South, but the Postal Service is not following its own rules for training workers on how to notice the signs of dangerous heat exposure and take steps to protect themselves. And not only are they lying, according to these documents she obtained about having done these trainings, they are pressuring these workers to move faster, to not take breaks because of the competition from other private delivery services like Amazon. So really, really important piece.

Rovner: Yeah, and I think also important for everybody who works outside, with climate change. Riley, why don’t you go next?

Griffin: Yes, my colleague Robert Langreth also has a story in this week’s Bloomberg Businessweek issue, and it is titled “The Next Blockbuster Drug Might Be Made in Space.” It’s a fun one. It describes how companies, including Big Pharma names like Eli Lilly, are using microgravity to develop drugs and improve formulations of existing blockbusters. So it’s a fun read. You can find it in print or online.

Rovner: Not everything in tech is bad. Lauren.

Griffin: Not everything is bad.

Weber: I’m continuing the trend of shouting-out my colleagues this week. So a bunch of my colleagues had an investigation titled “Applesauce Lead Cases in Kids Surge Amid Questions on FDA Oversight.” And so we’ve all heard about these applesauce packets for toddlers and babies that were contaminated with lead, but the official FDA numbers say it’s only like 60-something cases, but my colleagues called around the state health departments and they believe it’s at least suspected in over 118 cases, potentially more, which leads to the question of how widespread is all of this.

It lends itself to the questions of: Is the FDA’s oversight enough, especially when it comes to baby food? This is not the first baby food issue we’ve obviously had in the last couple years. It really is just a horror story for everyone. I mean, you’re just trying to feed your kids stuff that they like and then they’re sucking on something that could damage their brain development and hurt them for years to come. Really heart-rending storyline, and my colleagues did a great job showing that this is much further-reaching than has been previously disclosed.

Rovner: So another continuing theme of this year, the FDA’s regulation of food as opposed to the FDA’s regulation of drugs and how that sometimes falls by the wayside. Well, my story is also from The Washington Post, by Kent Babb. It’s called “They Watched Their Husbands Win the Heisman — Then Lost Them to CTE.” And it’s a really wrenching story about how the very best players in college football have something else in common besides athletic talent: That, over the years, more and more have joined the not-so-exclusive club of ex-players with brain injuries and related behavioral … excuse me. Over the years, more and more have joined the not-so-exclusive club of ex-players with brain injuries and related behavioral issues.

It’s the serious dark side of a sport that is so beloved in the United States, including by me, and that deserves not just a hard look but action to prevent some of these horrendous aftereffects.

OK, that is our show. As always, if you enjoy the podcast, you can subscribe wherever you get your podcasts. We’d appreciate it if you left us a review; that helps other people find us, too. Special thanks, as always, to Francis Ying for his technical expertise and amazing patience. As always, you can email us your comments or questions. We’re at whatthehealth@kff.org, or you can still find me at X, @jrovner, or @julierovner at Bluesky and Threads. Alice.

Ollstein: I’m @AliceOllstein on X and @alicemiranda on Bluesky.

Rovner: Lauren.

Weber: I’m @LaurenWeberHP on X and clearly need to improve the rest of my social media profiles.

Rovner: Riley.

Griffin: You can find me on Threads and X @rileyraygriffin.

Rovner: We will be back in your feed next week. Until then, be healthy.

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Guyana’s Minister of Health, Dr Frank Anthony and the Ministry of Health on Saturday hailed the contributions of former Director of the Pan American Health Organization (PAHO) and World Health Organization (WHO) Regional Director for the Americas, Dr Carissa Etienne who passed away suddenly on Friday. “The Minister of Health, Dr Frank Anthony is saddened ...

“Surprisingly fine,” said Conway-Anderson, a 36-year-old agroforestry professor at the University of Missouri. There was an 11-millimeter precancerous polyp that the doctors had discovered, but they’d snipped it out of her colon and recommended surveillance every three years. “Obviously, it’s big news to hear, but grateful this seems to be manageable. I’ll do it,” she said. “Then the bill came.”

She was being charged nearly $12,000 for the procedure after insurance. Conway-Anderson’s head spun. She couldn’t understand how it could cost so much, especially when she thought the colonoscopy was preventative for cancer and thus covered. “I was floored,” she said. “I was like I can’t pay this. I don’t know what you want me to do.”

Continue to STAT+ to read the full story…

At 19, Velasquez Lopez knows a lot about ammunition because many of his friends own guns, he said. They carry to defend themselves in East Oakland, where metal bars protect shop windows and churches stand behind tall, chain-link fences.

Some people even hide AR-15-style assault weapons down their pants legs, he said.

“It doesn’t feel safe. Wherever you’re at, you’re always anxious,” said Velasquez Lopez, who dreams of leaving the city where he was born. “You’re always wondering what’s going to happen.”

Last year, two gunmen in ski masks stormed his high school, killing a school district carpenter and injuring five other adults, including two students.

Oakland won acclaim just a few years ago as a national model for gun violence prevention, in part by bringing police and community groups together to target the small number of people suspected of driving the gun violence.

Then, in 2020, the covid-19 pandemic shut down schools, businesses, and critical social services nationwide, leaving many low-income people isolated and desperate — facing the loss of their jobs, homes, or both. The same year, police murdered George Floyd, a Black man in Minneapolis, which released pent-up fury over racial discrimination by law enforcement, education, and other institutions — sparking nationwide protests and calls to cut police funding.

In the midst of this racial reckoning and facing the threats of an unknown and deadly virus, Americans bought even more guns, forcing some cities, such as Raleigh, North Carolina; Chicago; New York City; and Oakland, to confront a new wave of violent crime.

“There was emotional damage. There was physical damage,” said James Jackson, CEO of Alameda Health System, whose Wilma Chan Highland Hospital Campus, a regional trauma center in Oakland, treated 502 gunshot victims last year, compared with 283 in 2019. “And I think some of this violence that we’re seeing is a manifestation of the damage that people experienced.”

Jackson is among a growing chorus of health experts who describe gun violence as a public health crisis that disproportionately affects Black and Hispanic residents in poor neighborhoods, the very people who disproportionately struggle with Type 2 diabetes and other preventable health conditions. Covid further eviscerated these communities, Jackson added.

While the pandemic has retreated, gun violence has not. Oaklanders, many of whom take pride in the ethnic diversity of their city, are overwhelmingly upset about the rise in violent crime — the shootings, thefts, and other street crimes. At town halls, City Council meetings, and protests, a broad cross-section of residents say they no longer feel safe.

Programs that worked a few years ago don’t seem to be making a dent now. City leaders are spending millions to hire more police officers and fund dozens of community initiatives, such as placing violence prevention teams at high schools to steer kids away from guns and crime.

Yet gun ownership in America is at a historic high, even in California, which gun control advocates say has the strictest gun laws in the country. More than 1 million Californians bought a gun during the first year of the pandemic, according to the latest data from the state attorney general.

As Alameda County District Attorney Pamela Price told an audience at a September town hall in East Oakland: “We are in a unique, crazy time where everybody in this community has a gun.”

The Streets of Oakland

Oakland’s flatlands southeast of downtown are the backdrop of most of the city’s shootings and murders.

The area stands in stark contrast to the extreme wealth of the millionaire homes that dot the Oakland Hills and the immaculate, flower-lined streets of downtown. The city’s revived waterfront, named after famed author and local hero Jack London, draws tourists to trendy restaurants.

On a Saturday night in August, Shawn Upshaw drove through the flatlands along International Boulevard, past the prostitutes who gather on nearly every corner for at least a mile, and into “hot spots,” where someone is shot nearly every weekend, he said.

“When I grew up, women and kids would get a pass. They wouldn’t get caught in the crossfire,” said Upshaw, 52, who was born and raised in Oakland. “But now women and kids get it, too.”

Upshaw works as a violence interrupter for the city’s Department of Violence Prevention, which coordinates with the police department and community organizations in a program called Ceasefire.

When there’s a shooting, the police department alerts Upshaw on his phone and he heads to the scene. He doesn’t wear a police uniform. He’s a civilian in street clothes: jeans and a black zip-up jacket. It makes him more approachable, he said, and he’s not there to place blame, but rather to offer help and services to survivors and bystanders.

The goal, he said, is to stop a retaliatory shooting by a rival gang or grieving family member.

Police also use crime data to approach people with gang affiliations or long criminal records who are likely to use a gun in a crime — or be shot. Community groups follow up with offers of job training, education, meals, and more.

“We tell them they’re on our radar and try to get them to recognize there are alternatives to street violence,” said Oakland Police Department Capt. Trevelyon Jones, head of Ceasefire. “We give them a safe way of backing out of a conflict while maintaining their street honor.”

Every Thursday at police headquarters, officers convene a “shooting review.” They team up with representatives from community groups to make house calls to victims and their relatives.

After the program launched in 2012, Oakland’s homicides plummeted and were down 39% in 2019, according to a report commissioned by the Oakland Police Department.

Then covid hit.

“You had primary care that became an issue. You had housing that became an issue. You had employment that became an issue,” said Maury Nation, an associate professor at Vanderbilt University. “It created a surplus of the people who fit that highest risk group, and that overwhelms something like Ceasefire.”

With ever-rising housing prices in Oakland and across California, homeless encampments have multiplied on sidewalks and under freeway bypasses. The city is also bracing for the loss of jobs and civic pride if the Oakland Athletics baseball team relocates after April 2024, following departures by the NBA’s Golden State Warriors in 2019 and the NFL’s Raiders in 2020.

“Housing, food insecurity, not having jobs that pay wages for folks, all can lead to violence and mental health issues,” said Sabrina Valadez-Rios, who works at the Freedom Community Clinic in Oakland and teaches a high school class for students who have experienced gun violence. Her father was fatally shot outside their Oakland home when she was a child. “We need to teach kids how to deal with trauma. Violence is not going to stop in Oakland.”

Shared with permission from The Trace.

Homicides in Oakland climbed to 123 people in 2021, police reports show, dipping slightly to 120 last year. Police have tallied 108 homicides as of Nov. 12 this year. Neither the police department nor the city provided statistics on how many of those killings involved firearms, despite repeated requests from KFF Health News.

Experts also blame the rise in killings in Oakland and other American cities on the prevalence of gun ownership in the U.S., which has more guns than people. For all the pandemic disruption worldwide, homicide rates didn’t go up in countries with strict gun laws, said Thomas Abt, director of the Center for the Study and Practice of Violence Reduction at the University of Maryland.

“We saw gun violence, homicides, shootings spike up all around the country. And interestingly, it did not happen internationally,” Abt said. “The pandemic did not lead to more violence in other nations.”

Unrest in Oakland

Oakland residents are angry. One by one, business owners, community organizers, church leaders, and teenagers have stood at town halls and City Council meetings this year with an alarming message: They no longer feel safe anywhere in their city — at any time.

“It’s not just a small number of people in the evening or nighttime. This is all hours, day and night,” said Noha Aboelata, founder of the Roots Community Health Center in Oakland. “Someone’s over here pushing a stroller and someone’s getting shot right next to them.”

One morning in early April, automatic gunfire erupted outside a Roots clinic. Patients and staff members dropped to the ground and took cover. After the shooting stopped, medical assistants and a doctor gave first aid to a man in his 20s who had been shot six times.

Everyone is blaming someone or something else for the bloodshed.

Business owners have had enough. In September, Target announced it would close nine stores in four states, including in Oakland because of organized retail theft; the famed Vietnamese restaurant Le Cheval shut its doors after 38 years, partly blaming car break-ins and other criminal activity for depressing its business; and more than 200 business owners staged an hours-long strike to protest the rise in crime.

The leadership of the local NAACP, the nation’s oldest civil rights organization, made headlines this summer when it said Oakland was seeing a “heyday” for criminals, and pointed to the area’s “failed leadership” and “movement to defund the police.”

“It feels like there’s a dark cloud over Oakland,” said Cynthia Adams, head of the local chapter, which has called on the city to hire 250 more police officers.

Price, a progressive elected last year, already faces a recall effort, in part because she rejects blanket enhanced sentences for gangs and weapons charges, and has declined to charge youths as adults.

The new mayor, Sheng Thao, was criticized for firing the police chief for misconduct and breaking a campaign promise to double funding at the city’s Department of Violence Prevention. In her first State of the City address last month, Thao described the surge in crime as “totally and completely unacceptable,” and acknowledged that Oaklanders are hurting and scared. She said the city has expanded police foot patrols and funded six new police academies, as well as boosted funding for violence prevention and affordable housing.

“Not a day goes by where I don’t wish I could just wave a magic wand and silence the gunfire,” Thao said.

Many in the community, including Valadez-Rios, advocate for broader investment in Oakland’s poorest neighborhoods over more law enforcement.

City councils, states, and the federal government are putting their faith in violence prevention programs, in some cases bankrolling them from nontraditional sources, such as the state-federal Medicaid health insurance program for low-income people.

Last month, California’s Democratic Gov. Gavin Newsom approved an 11% state tax on guns and ammunition, and $75 million of the revenue annually is expected to go to violence prevention programs.

Although these programs are growing in popularity, it is unclear how successful they are. In some cases, proven programs that involve law enforcement, such as Ceasefire, were cut back or shelved after George Floyd was murdered, said Abt, the Maryland researcher.

“The intense opposition to law enforcement means that the city was unwilling to use a portion of the tools that have been proven,” Abt said. “It’s good to work on preventing youth violence, but the vast majority of serious violence is perpetrated by adults.”

Not a day goes by where I don’t wish I could just wave a magic wand and silence the gunfire.

Oakland Mayor Sheng Thao

A Focus on Schools

Kentrell Killens, interim chief at the Oakland Department of Violence Prevention, acknowledges that young adults drive Oakland’s gun violence, not high school kids. But, he said, shootings on the streets affect children. Of the 171 homicides in 2019 and 2020, 4% of victims were 17 or under, while 59% were ages 18 to 34, according to the Oakland Police Department.

The number of children injured in nonfatal shootings is also worrisome, he said. Roughly 6% of victims and 14% of suspects in nonfatal shootings were 17 or younger in 2019 and 2020.

“We’ve seen the impact of violence on young people and how they have to make decisions around what roles they want to play,” said Killens, who spent a decade as a case manager working with schoolkids.

By being in the schools, “we can deal with the conflicts” that could spill into the community, he added.

At Fremont High School, Principal Nidya Baez has welcomed a three-person team to her campus to confront gun violence. One caseworker focuses on gun violence and another on sexual assaults and healthy relationships. The third is a social worker who connects students and their families to services.

They are part of a $2 million city pilot program created after the Oakland School Board eliminated school-based police in 2020 — about one month after George Floyd was killed and after a nine-year push by community activists to kick police out of schools.

“We’ve been at a lot of funerals, unfortunately, for gang-related stuff or targeting of kids, wrong-place-wrong-time kind of thing,” said Baez, whose father was shot and injured on his ice cream truck when she was a child.

When Francisco “Cisco” Cisneros, a violence interrupter from the nonprofit group Communities United for Restorative Youth Justice, arrived at Fremont in January, students were wary, he said. Many still are. Students are hard-wired not to share information — not to be a “snitch” — or open up about themselves or their home life, especially to an adult, Cisneros said. And they don’t want to talk to fellow students from another network, group, or gang.

“If we catch them at an early age, right now, we can change that mindset,” said Cisneros, who was born and raised in Oakland.

Cisneros pulls from his past to build a rapport with students. This summer, for example, when he overheard a student chatting on the phone to an uncle in jail, Cisneros asked about him. It turns out Cisneros and the boy’s uncle had grown up in the same neighborhood.

That was enough to begin a relationship between Cisneros and the student, “J,” who declined to be identified by his full name for fear of retribution. The 16-year-old credits Cisneros, whom he describes as “like a dad,” with keeping him engaged in school and employed with summer jobs — away from trouble. Still, he regularly worries about making a wrong move.

“You could do one thing and you could end up in a situation where your life is at risk,” J said in Cisneros’ office. “You go from being in school one day to being in a very bad, sticky situation.”

The program is underway in seven high schools, and Cisneros believes he has helped prevent a handful of conflicts from escalating into gun violence.

A Better Life

After his school counselor was shot at Rudsdale High School in September 2022, Velasquez Lopez heard that the man and other victims were treated at nearby Highland Hospital.

“Seeing him get hurt, he obviously needed medical attention,” Velasquez Lopez said. “That made it obvious I could help my community if I were to be a nurse to help people that live around my area.”

When a recruiter from the Alameda Health System came to campus to promote a six-week internship at Highland Hospital, Velasquez Lopez applied. It was, he said, a dramatic step for a student who had never cared about school or sought vocational training.

Over the summer, he volunteered in the emergency room, learned how to take a patient’s vitals, watched blood transfusions, and translated for Spanish-speaking patients.

Velasquez Lopez, who graduated this year, is now looking for ways to get a nursing degree. The cost of college is out of reach at the moment, but he knows he doesn’t want to stay in a city where you can easily buy a gun for $1,000 — or half that, if it’s been used in a crime.

Velasquez Lopez said he has bigger goals for himself.

Young people in East Oakland “always feel like we’re trapped in that community, and we can’t get out,” he said. “But I feel like we still have a chance to change our lives.”

This article was produced by KFF Health News, which publishes California Healthline, an editorially independent service of the California Health Care Foundation. 

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.

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This story can be republished for free (details).

Hannah Fegley of Silver Spring, Md., says she spent seven hours on the phone last month — the eighth month of her pregnancy — with insurers, pharmacy benefit managers and half a dozen pharmacies trying to obtain Pfizer’s new RSV shot, called Abrysvo.

The Health 202 is a coproduction of The Washington Post and KFF Health News.

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Respiratory syncytial virus puts up to 2 percent of babies in the hospital each year because their tiny airways don’t tolerate the inflammation. While most recover with supportive care, as many as 300 kids under 5 years old die each year and the majority of them are under 1. A bad case of RSV in infancy can mean a lifetime of asthma.  

Fegley says two of her friends saw their babies land in intensive care last year, a bad one for RSV. So she was eager to get the shot; she has a 4-year-old in preschool who, she says, “brings home every virus.” 

One of KFF Health News’ signature projects is the Bill of the Month, where readers and listeners send us stories about how the U.S. health system is failing them. Often, the problems they encounter connect directly to holes in government policy. Fegley’s story shows how regulators’ recommendations trickle down into a fragmented health system — leaving patients in the lurch.   

The Pfizer vaccine (list price: about $300), confers immunity to the fetus through the mother. As an alternative, the Advisory Committee on Immunization Practices also recommended AstraZeneca’s Beyfortus (about $500), a monoclonal antibody against the virus to administer to babies after birth. Fegley’s obstetrician didn’t carry the vaccine. So she gave Fegley a prescription to get it at a pharmacy, predicting (correctly) that many pediatricians wouldn’t stock Beyfortus.

Pharmacies typically stock RSV vaccines because the CDC also recommends them for people over 60 — a large and lucrative market, even though scientists and public health authorities agree the more obvious use is in infants. There are two different RSV vaccines approved for older Americans: the Pfizer shot, which is also approved for pregnant women, and a GlaxoSmithKline shot that is not. 

Fegley’s insurer uses CVS-Caremark as its pharmacy benefits manager, which of course uses CVS Pharmacy. (Both are part of CVS Health Corp.) And CVS, she discovered, only stocks the GSK vaccine. 

(Is your head spinning yet? Hers was. And she is health-care literate —  a social worker whose husband is a doctor. “We’re told we have choice, but we really do not,” she said.) 

After a phone complaint, a Caremark representative granted Fegley an “override” allowing her to try other pharmacies. She called them, but many said they’d only give the Pfizer shot to people 60 and over.

“We’re currently completing the final steps needed to offer the maternal RSV vaccine and hope to make it available at our pharmacies soon,” said Matt Blanchette, a CVS Health spokesman representing Caremark and the pharmacy. “Patients should check with their insurer to confirm if the vaccine is covered by their individual plan.”

One smaller pharmacy said by phone it had a dose for Fegley, but when they checked her insurance at the counter, it was denied. She filled out forms to get a shot at both Costco and Walgreens. Denied. 

She didn’t want to pay $300 or more for the shot out-of-pocket because she knew that under Obamacare, most insurers must cover all ACIP-recommended vaccines free of charge. So how can it be so hard to obtain a shot that the FDA and CDC say can save babies’ lives? Let us count the ways.

• One: The Affordable Care Act gives insurers more than a year after a new vaccine wins ACIP’s stamp of approval to start covering it. 
• Two: To keep costs down, pharmacies try to get deals on similar products by contracting with just one drugmaker. GSK didn’t finish its application to the FDA for approval to give its shot to pregnant women.
• Three: Many pharmacies don’t like giving pregnant women shots, fearing liability.
• Four: Both obstetricians (for the Pfizer shot) and pediatricians (the monoclonal antibody) have a hard time stocking such expensive medicines  — particularly with insurance reimbursement uncertain.

“Cost is the big issue,” said Steven Abelowitz of Coastal Kids, a big California group practice. “For us, it was a tough, risky decision: We’ve spent millions to order batches and we don’t know if we’ll get reimbursed,” he said. “Smaller practices just don’t have the money.”

There’s a happy-ish ending: This month, a Caremark representative left Fegley a voice mail saying she had an override to get the Pfizer vaccine at Costco for $105 out of pocket. If she wanted it free, the rep added, she should contact her husband’s employer. 

With some resentment, she says, she paid for the shot.

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The WHO officially declared smallpox eradicated in 1980, and it remains the only human infectious disease ever to have been eradicated.

Among infectious-disease doctors like me, Banu is famous as a symbol of the power of science and modern medicine.

And yet, beyond that distinction, Banu has largely been forgotten by the public. That fate is a reminder that, well after a global pandemic recedes from headlines in wealthy countries, its survivors have needs that go unmet. Although Banu survived smallpox, she’s been sickly her whole life. She was once bedridden for three months with fevers and vomiting, but she couldn’t afford to see a good doctor. The doctor she could afford, she recalled, prescribed her cooked fish heads. Banu also complains of poor vision: “I cannot thread a needle, because I cannot see clearly,” she told me, via a translator, during an interview in Digholdi, the village where she lives.

“I cannot examine the lice on my son’s head and cannot read the Quran well because of my vision,” she said.

In the years following smallpox eradication, journalists from all over the world traveled to interview Banu, but they petered out years ago. “Mother is so famous, but they do not take any follow-up of Mom to know whether she is in a good or bad state,” her middle daughter, Nazma Begum, told me.

Banu and her family are proud of her place in history, but their role in the eradication of smallpox speaks to the limits of merely fighting diseases. In his biography of the doctor and philanthropist Paul Farmer, author Tracy Kidder recorded a Haitian saying: “Giving people medicine for TB and not giving them food is like washing your hands and drying them in the dirt.”

After Banu and her family survived smallpox, the rest of the world dried its hands in the dirt — just as it did for the poorest victims of covid-19 and later the most marginalized people with mpox, formerly known as monkeypox.

I traveled to South Asia to speak with aging public health workers and smallpox survivors in South Asia for the audio-documentary podcast “Epidemic: Eradicating Smallpox.”

To meet Banu, I flew 14 hours to Delhi and another two hours the next day to Dhaka, then took a five-hour drive to Barishal, followed the next day by a 90-minute ferry ride and a two-hour drive to arrive in Digholdi. Banu and her family — her husband, their three daughters, and their son — share a one-room bamboo-and-corrugated-metal home with a mud floor. The home, which lacks indoor plumbing, is divided down the middle by a screen and a curtain. Water leaks in through the roof, soaking their beds. A bare bulb hangs from a wire overhead. Her in-laws used to live with them, too, but they have passed away.

Women in rural Bangladesh rarely work outside the home. Banu’s husband, Rafiqul Islam, pedals a rickshaw. Some days he earns nothing. On a good day, he might make 500 taka (not quite $5). Although the World Health Organization arranged for a plot of land in her name, Banu said, the family has nowhere to cultivate. “They gave me the land, but the river consumes that. Some of it is in the river,” she said. Cyclones and rising sea levels have led to coastal erosion and saltwater intrusion, and there have also been land disputes.

Begum, now 23, completed a year of college but then dropped out. Banu and her husband couldn’t afford the fees. Instead, they arranged for her to marry. Her mother’s fame “did not help me in any way in my studies or financially,” Begum told me.

The family’s financial life is precarious. Five hundred taka used to buy a 10-kilogram bag of rice and vegetables. During my visit in 2022, the instability of the Russia-Ukraine war created fluctuating oil prices, and Banu said that amount was enough to pay only for the rice.

Banu is well aware that thanks to vaccination, millions of people no longer die of smallpox and other infectious diseases. By one estimate, the eradication of smallpox has prevented at least 5 million deaths around the world each year. Vaccines remain one of the most cost-effective and lifesaving gifts of modern medicine. The Centers for Disease Control and Prevention estimates that the U.S. saves 10 times what it spends on childhood vaccination. But all this is cold comfort to Banu when she and her family are struggling to survive.

Every public health crisis leaves people behind. When I worked as an Ebola aid worker in Guinea in 2015, residents asked why I cared so much about Ebola when local women were hemorrhaging in childbirth and didn’t have enough to eat. They were right not to trust our efforts. Why should they upend their lives to help us defeat Ebola? They knew their lives wouldn’t be materially better when we declared victory and left, as we had done so many times before as soon as our own interests were protected. Their prediction was correct.

As the coronavirus pandemic winds down in the United States, Banu’s life is a reminder that illness has a long tail of consequences and doesn’t end with a single shot. The world’s most powerful nation hasn’t ensured equitable access for its own citizens to health care and lifesaving tools such as covid vaccines, Paxlovid, and monoclonal antibodies. The resulting disparities will get worse as the federal government finishes turning America’s emergency covid response over to the routine health care system. Many Americans can’t afford to stay home when they or their children are sick. Families lack support to care for young or elder family members or people with medical illnesses or disabilities. Many say their biggest worry is paying for groceries or gas to get to work.

Their plight is less extreme than Banu’s, but their suffering is real — and it is magnified worldwide. As long as vulnerable communities are deprived of holistic, comprehensive responses to mpox, covid, Ebola, or other public health emergencies to come, these people will have a reason to be suspicious, and enlisting their help to fight the next crisis will be that much harder.

A version of this article first appeared in The Atlantic in August 2022.

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The world is entering a new era of vaccines. Following the success of covid-19 mRNA shots, scientists have a far greater capacity to tailor shots to a virus’s structure, putting a host of new vaccines on the horizon.

The most recent arrivals — as anyone on the airwaves or social media knows — are several new immunizations against respiratory syncytial virus, or RSV.

These shots are welcome since RSV can be dangerous, even deadly, in the very old and very young. But the shots are also expensive — about $300 for those directed at adults, and up to $1,000 for one of the shots, a monoclonal antibody rather than a traditional vaccine, intended for babies. Many older vaccines cost pennies.

So their advent is forcing the United States to face anew questions it has long sidestepped: How much should an immunization that will possibly be given — maybe yearly — to millions of Americans cost to be truly valuable? Also, given the U.S. is one of two countries that permit direct advertising to consumers: How can we ensure the shots get into the arms of people who will truly benefit and not be given, at great expense, to those who will not?

Already, ads on televisions and social media show active retirees playing pickleball or going to art galleries whose lives are “cut short by RSV.” This explains the lines for the shot at my local pharmacy.

But indiscriminate use of expensive shots could strain both public and private insurers’ already tight budgets.

Other developed countries have deliberate strategies for deciding which vulnerable groups need a particular vaccine and how much to pay for it. The U.S. does not, and as specialized vaccines proliferate, public programs and private insurers will need to grapple with how to use and finance shots that can be hugely beneficial for some but will waste precious health dollars if taken by all.

A seasonal viral illness, RSV can cause hospitalization or, in rare cases, death in babies and in people age 75 or older, as well as those with serious underlying medical conditions such as heart disease or cancer. For most people who get RSV, it plays out as a cold; you’ve likely had RSV without knowing it.

But RSV puts about 2% of babies under age 1 in the hospital and kills between 100 and 300 of those under 6 months, because their immune systems are immature and their airways too narrow to tolerate the inflammation. Merely having a bad case of RSV in young childhood increases the risk of long-term asthma.

That’s why Barney Graham, the scientist who spent decades at the government’s National Institutes for Health perfecting the basic science that led to the current shots, said: “The most obvious use is in infants,” not adults.

That’s also why European countries trying to figure out how best to use these vaccines without breaking the bank focused first on babies and determining a sensible price. Though more of the very old may die of RSV, the years of life lost are much greater for the very young. (Babies can get the monoclonal antibody shot or gain protection through a traditional vaccine given to the mother near the end of pregnancy, conferring immunity through the womb.)

A consortium of European experts led by Philippe Beutels, a professor in health economics at the University of Antwerp in Belgium, calculated that the shots would only be “worth it” in terms of the lives saved and hospitalizations averted in infants if the price were under about $80, he said in a phone interview. That’s because almost all babies make it through RSV with supportive care.

The calculation will be used by countries such as Belgium, England, Denmark, Finland, and the Netherlands to negotiate a set price for the two infant shots, followed by decisions on which version should be offered, depending partly on which is more affordable.

They have not yet considered how to distribute the vaccines to adults — considered less pressing — because studies show that RSV rarely causes severe disease in adults who live outside of care settings, such as a nursing home.

Why did the United States and Europe approach the problem from opposite directions?

In the U.S., there was a financial incentive: Roughly 3.7 million babies are born each year, while there are about 75 million Americans age 60 and older — the group for whom the two adult vaccines were approved. And about half of children get their vaccines through the Vaccines for Children program, which negotiates discounted prices.

Also, babies can get vaccinated only by their clinicians. Adults can walk into pharmacies for vaccinations, and pharmacies are only too happy to have the business.

But which older adults truly benefit from the shot? The two manufacturers of the adult vaccines, GSK and Pfizer, conducted their studies presented to the FDA for approval in a population of generally healthy people 60 and older, so that’s the group to whom they may be marketed. And marketed they are, even though the studies didn’t show the shots staved off hospitalization or death in people ages 60 to 75.

That led to what some have called a “narrow” endorsement from the Centers for Disease Control and Prevention’s Advisory Committee on Immunization Practices for people 60 to 75: Patients in that age range could get the shot after “shared clinical decision-making” with a health provider.

It is likely that because of this fuzzy recommendation, some Americans 60 and over with commercial insurance are finding that their insurers won’t cover it. Under Obamacare, insurers are generally required to cover at no cost vaccines that are recommended by the ACIP; however, if a provider recommends vaccination, then it must be covered by insurance.

(In late September, the ACIP recommended immunization of all babies with either the antibody or the maternal vaccine. Insurers have a year to commence coverage and many have been dragging their feet because of the high price.)

There are better and more equitable ways to steer the shots into the arms of those who need it, rather than simply administering it to those who have the “right” insurance or, swayed by advertising, can pay. For example, insurers, including Medicare, could be required to cover only those ages 60 to 75 who have a prescription from a doctor, indicating shared decision-making has occurred.

Finally, during the pandemic emergency, the federal government purchased all covid-19 vaccines in bulk at a negotiated price, initially below $20 a shot, and distributed them nationally. If, to protect public health, we want vaccines to get into the arms of all who benefit, that’s a more cohesive strategy than the patchwork one used now.

Vaccines are miraculous, and it’s great news that they now exist to prevent serious illness and death from RSV. But using such novel vaccines wisely — directing them to the people who need them at a price they can afford — will be key. Otherwise, the cost to the health system, and to patients, could undermine this big medical win.

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.

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In Episode 7 of “Eradicating Smallpox,” Shohrab, a man who was displaced by the 1970 Bhola cyclone, shares his story. After fleeing the storm, he and his family settled in a makeshift community in Dhaka known as the Bhola basti. Smallpox was circulating there, but the deadly virus was not top of mind for Shohrab. “I wasn’t thinking about that. I was more focused on issues like where would I work, what would I eat,” he said in Bengali. 

When people’s basic needs — like food and housing — aren’t met, it’s harder to reach public health goals, said Bangladeshi smallpox eradication worker Shahidul Haq Khan. 

He encountered that obstacle frequently as he traveled from community to community in southern Bangladesh. 

He said people asked him: “There’s no rice in people’s stomachs, so what is a vaccine going to do?” 

To conclude this episode, host Céline Gounder speaks with Sam Tsemberis, president and CEO of Pathways Housing First Institute. 

He said when public health meets people’s basic needs first, it gives them the best shot at health. 

The Host:

Céline Gounder
Senior Fellow & Editor-at-Large for Public Health, KFF Health News

@celinegounder

Read Céline's stories

Céline is senior fellow and editor-at-large for public health with KFF Health News. She is an infectious diseases physician and epidemiologist. She was an assistant commissioner of health in New York City. Between 1998 and 2012, she studied tuberculosis and HIV in South Africa, Lesotho, Malawi, Ethiopia, and Brazil. Gounder also served on the Biden-Harris Transition COVID-19 Advisory Board. 

In Conversation With Céline Gounder:

Sam Tsemberis
Founder, president, and CEO of Pathways Housing First Institute

@SamTsemberis

Voices From the Episode:

Shohrab
Resident of the Bhola basti in Dhaka

Iftekhar Iqbal
Associate professor of history at the Universiti Brunei Darussalam

Shahidul Haq Khan
Former World Health Organization smallpox eradication program worker in Bangladesh

Click to open the transcript

Transcript: What Good Is a Vaccine When There Is No Rice?

Podcast Transcript 

Epidemic: “Eradicating Smallpox” 

Season 2, Episode 7: What Good Is a Vaccine When There Is No Rice? 

Air date: Oct 24, 2023 

Editor’s note: If you are able, we encourage you to listen to the audio of “Epidemic,” which includes emotion and emphasis not found in the transcript. This transcript, generated using transcription software, has been edited for style and clarity. Please use the transcript as a tool but check the corresponding audio before quoting the podcast. 

[Ambient sounds from a ferry play softly.] 

Céline Gounder: I’m on a boat in southern Bangladesh, headed toward Bhola, the country’s largest island. 

We’re traveling by ferry on calm waters. But my head spins — and my stomach roils just a bit — as I imagine how these same waters nearly destroyed Bhola Island. 

[Tense instrumental music begins playing.] 

It was 1970. 

In November, under an almost-full moon and unusually high tides. 

The island was hit by one of the most destructive tropical storms in modern history: the Bhola cyclone. 

[Shohrab speaking in Bengali fades under English translation.] 

Shohrab: There were floods. Back then there weren’t any embankments to stop the water from rising. 

Céline Gounder: Counterclockwise winds, torrential rains, and treacherous waves swept entire villages into the sea. People held onto whatever they could to keep their heads above water. 

[Shohrab speaking in Bengali fades under English translation.] 

Shohrab: I remember at that time the water level rose so high that people ended up on top of trees. The water had so much force. Many people died. 

Céline Gounder: The Bhola cyclone killed some 300,000 people. And for those who survived, there wasn’t much left to return to. Hundreds of thousands of people lost their homes, their farms, and their access to food. 

The man whose voice you’ve been hearing was one of the survivors. 

[Shohrab speaking in Bengali fades under English translation.] 

Shohrab: My name is Shohrab. I am 70 years old. 

Céline Gounder: Shohrab was a teenager when the cyclone hit. And in the days and weeks after the storm, he and his family joined a mass migration of people who fled southern Bangladesh. 

They traveled about a hundred miles north from Bhola Island to the streets of Dhaka, the busy capital of Bangladesh. 

There, they settled in a makeshift community, a kind of unsanctioned encampment dubbed the Bhola basti. 

In Bengali that word,“basti,” means settlement — or “slum,” in some translations. 

The residents forged a community, but soon, the poor people there — and what they built — would be seen as a threat to the effort to keep smallpox in check. 

Not just in South Asia — but around the world. 

I’m Dr. Céline Gounder. This is “Epidemic.” 

[“Epidemic” theme music plays.] 

[Ambient sounds from the Bhola basti, including voices of people speaking Bengali, play softly.] 

Céline Gounder: More than 50 years after the cyclone, Shohrab lives in the same area in Dhaka. 

I interviewed him at a tea stall near his home. It’s the kind of place where men gather to gossip and share stories over hot drinks. 

Inside there’s a colorful display of snacks and sweets hanging from the ceiling. Just outside we sat on well-worn wooden benches. 

And as we sip our tea, he tells me about life in the encampment in the 1970s … 

[Sparse music plays softly.] 

[Shohrab speaking in Bengali fades under English translation.] 

Shohrab: I used to rent a place there. Five or six of us used to live in one room. Sometimes it was eight people in a room. 

Céline Gounder: To cover his portion of the rent he worked as a day laborer, doing odd jobs here and there. Over time the basti became home. 

But Shohrab’s new home was likely seen as an eyesore by outsiders — and by the Bangladeshi government. 

Such settlements often lack running water, or electricity, or access to proper sanitation. Those conditions spotlight suffering — and for local leaders that spotlight can be uncomfortable. 

But, public health experts had a different concern: that the settlement of Bhola migrants in Dhaka would become a deadly stronghold for smallopox. Cramped and unsanitary living conditions put the residents at high risk. 

I ask Shohrab if he remembers seeing or hearing about people with smallpox when he first arrived. 

[Shohrab speaking in Bengali fades under English translation.] 

Shohrab: I wasn’t thinking about that. I was more focused on issues like where would I work, what would I eat, etc. 

Céline Gounder: As he tried to rebuild his life, other things — like food and shelter — were more urgent. 

[Music fades to silence.] 

Widening beyond that one migrant encampment in Dhaka, researchers say the picture was similar in cities and villages all across the country. 

Bangladesh was hit with a series of crises. Environmental historian Iftekhar Iqbal says each brought human suffering — and that each was a blow to the smallpox eradication effort. 

Iftekhar Iqbal: Seventies was really a time when, the coming of the smallpox couldn’t come at a, at a more unfortunate time. 

Céline Gounder: In 1970 the Bhola cyclone hit. In 1971, just four months later, the country fought a bloody liberation war. Then, in 1974, heavy rain and flooding triggered a famine. And in 1975 there was a military coup. 

Iftekhar Iqbal: The 1970s was the deadliest decade in the history of Bangladesh. 

Céline Gounder: This period is when the country became Bangladesh — winning its independence from Pakistan in the liberation war. But residents of the young nation faced cascading upheaval and turmoil. And too much death. 

[Instrumental music plays softly.] 

On the global stage stopping smallpox was important, but many in Bangladesh were just trying to make it to the next day. 

Daniel Tarantola: No. 1 priority is food and food and food. And the second priority is food and food and food. 

This was an area where survival was always in question. 

Céline Gounder: That’s Daniel Tarantola. 

He’s from France and arrived in the region with the mission of helping to eradicate smallpox, but he says the people in front of him needed help with many other things. 

Besides hunger, some of the villages he visited were dealing with two epidemics: smallpox and cholera. 

Daniel Tarantola: And we were not equipped to do anything but smallpox containment and smallpox eradication. By design or by necessity, we didn’t have the means to do anything much more than that. 

Céline Gounder: Over the course of this season we’ve talked about big, complicated issues — like stigma and bias, distrust, or First World arrogance — that threatened to derail the smallpox eradication campaign. We’ve documented the public health workers who found a way around those roadblocks. 

But sometimes the need is so big, so entrenched, that your inability to meet it can be demoralizing. I sometimes felt that during my own fieldwork: battling HIV and tuberculosis in Brazil and southern Africa, and during an Ebola outbreak in Guinea, West Africa. 

Daniel Tarantola says in South Asia the best he could do was focus on the task at hand. 

Daniel Tarantola: Meaning that you had to set up a program to eradicate smallpox or at least eliminate it from Bangladesh and at the same time not get … if I can use the word distracted, um, by other issues that prevailed in Bangladesh. 

[Music fades out.] 

Céline Gounder: Those were tough emotional realities for health workers and the people they wanted to care for. 

But … 

Daniel Tarantola: The level of resilience of this population is absolutely incredible given the number of challenges that they have had to survive. 

Céline Gounder: One of the main ways people survived the upheaval in Bangladesh was by picking up and moving away from the things trying to kill them. 

Remember how Shohrab fled to Dhaka after the cyclone? 

Well, mass migration is a survival strategy — but one that can worsen disease. 

When the cyclone refugees from Bhola landed in that under-resourced basti in Dhaka, all smallpox needed was an opportunity to spread. 

[Solemn music begins playing.] 

That opportunity came in 1975 when the Bangladeshi government decided to bulldoze the Bhola basti. 

Daniel Tarantola says it was a bad idea. 

Daniel Tarantola: We knew there was smallpox transmission in this particular area and therefore they should wait until the outbreak subsides before dismantling the shanties. 

Céline Gounder: Government officials did not wait for the outbreak to subside. They bulldozed the basti anyway. 

Daniel Tarantola: That resulted in a wide spread of smallpox. 

Céline Gounder: Here’s environmental historian Iftekhar Iqbal again. 

Iftekhar Iqbal: This eviction is considered one of the policy errors that led to the second wave of postwar smallpox. 

Céline Gounder: In the wake of that eviction in 1975, thousands of people scattered. Some surely returned back home to Bhola. 

[Music fades out.] 

Céline Gounder: Public health’s failure — the government’s failure — to meet the basic need for safety, for food and housing, delayed the goal to stop the virus. 

Shahidul Haq Khan, the Bangladeshi public health worker and granddad we met in Episode 4, says he learned that lesson over and over as he urged people to accept the smallpox vaccination. 

Their frustration with him — and by extension public health — was clear. 

[Shahidul speaking in Bengali fades under English translation.] 

Shahidul Haq Khan: There was no rice in people’s stomachs, so what is a vaccine going to do? “You couldn’t bring rice? Why did you bring all this stuff?” That was the type of situation we had to deal with. 

[Atmospheric music begins playing.] 

Céline Gounder: What good is a vaccine when there is no rice? 

Next up, I speak with Sam Tsemberis, founder of Pathways Housing First Institute. It’s an organization that advocates for meeting people’s basic needs first, so they’ll have the best shot at health. 

But in the beginning, he found out convincing institutions was easier said than done: 

Sam Tsemberis: I try to explain this rationale that I’m telling you, like people need housing first and then services. The hospital is like, “No, no, we’re in the hospital business. We’re not in the housing business.” 

Céline Gounder: That’s after the break. 

[Music fades to silence.] 

Céline Gounder: One of my mentors was Dr. Paul Farmer, the legendary doctor and anthropologist whose work in Haiti was documented by Tracy Kidder in the book “Mountains Beyond Mountains.” Paul always pushed us to look beyond the symptoms to root causes. It’s a lesson we keep having to learn in public health again and again. 

Sam Tsemberis is one of the first to apply it to homelessness. He’s the CEO of a nonprofit called the Pathways Housing First Institute. The organization promotes a model of addressing homelessness that begins with putting people into housing. 

That idea seems pretty obvious. But back when Sam first started working on homelessness — in New York City in the 1980s — the prevailing model was more like a staircase. People had to work their way up to show they were ready for, or even worthy of, housing. 

Sam Tsemberis: If you showed up applying for housing, you had to acknowledge you had a mental illness, you had to demonstrate that you were taking medication, and that you understood why you were taking medication. And you also had to have — if you had any history of alcohol or substance use, you also had to demonstrate a period of sobriety. 

It was a very tough regimen to get into housing. 

Céline Gounder: Sam said he quickly realized that wasn’t working, even though it was the only approach at the time. 

Sam Tsemberis: I was working very hard to help people navigate that. I was doing street outreach. So, “Come come to the shelter, come to the hospital, come to a treatment program, a drop-in center,” hoping that they would engage and successfully make it up the stairs and get housing eventually. 

And what began to emerge was that even if people were willing to take the first step — let’s say go to detox or go to the hospital — far too many people ended up returning to the street, which was, which was a signal that, you know, something was wrong with this system. It’s like, why are people falling back? 

And the stories on the street were compelling. You know, people would say, “No, I don’t need to go to detox. What I need is a safe place to stay.” 

Or, “Yeah, I’ve been diagnosed with schizophrenia, but … you know, and I still hear voices, but I don’t pay attention to them. Right now, I’m just cold, I’m tired, I’m hungry, I need a place to be safe. I need to go inside. That’s what I need first.” 

And the repeated pleas for safety, security, a place to call home, from people that had tried and failed and tried and failed that staircase system is what compelled me to, you know, try something different, because what we were doing wasn’t working. And that’s when we started this housing-first approach. 

Céline Gounder: Can you explain: What is that, and what’s its impact? 

Sam Tsemberis: Housing-first is the answer to a question that we ask people. “OK, what is it that you want?” And people would inevitably say, “I want a place to live, isn’t it obvious?” 

So our job as providers, then, was to figure out a way to have a program that we can get money for rent, and money for case management services, and give people who had previously no opportunity to get into housing on their own terms, and also offer the kind of clinical or social or emotional support that’s needed after people get housed. 

Céline Gounder: So how did you pilot or how did you jump-start this effort? What did that look like? 

Sam Tsemberis: So we ended up having to start our own nonprofit agency, apply for a grant, and we, with fingers crossed, we started to take people that were actively using and in some cases actively symptomatic and put them into apartments of their own and visit them a lot, not knowing how it would turn out. 

What we found, much to our shock and surprise, very pleasant surprise, is that 85% of the people we housed, even in that first year, remained housed. And we thought, well, you know, we’re onto something here. 

Céline Gounder: So instead of insisting that people be treated for addiction and mental health issues before they got into housing, you gave them housing first. And that was really sort of the measure of success. 

Sam Tsemberis: Yes. 

Céline Gounder: How successful was the program in treating addiction and mental health? 

Sam Tsemberis: The addiction and mental health treatment outcomes were modestly better for the housing-first group that didn’t require to be in treatment. But you know, their treatment was no worse and a little better than the group that required treatment and sobriety. 

And there, a measure called the overall quality of life, you know, like, how happy are you with living in the community, with your contacts with relatives, and so on. The group that went into housing first had a significantly higher quality of life than the treatment-first group. 

Céline Gounder: So I know there are people out there who will say, Well, you didn’t solve their addiction issue or their mental health issue; how is that a success? How would you respond to that criticism? 

Sam Tsemberis: This was never advertised as a program that cures addiction or cures mental illness. Recovery, in some ways, is not abstinence. Recovery, at least in the mental health business, is having a life in spite of your diagnosis. 

The main thing is you’re no longer homeless. You know, you don’t have to be on the street until you’ve cured your illness. Because if that was the case, people would likely die on the street before they cured their illness because we don’t have cures for some of these illnesses. 

Céline Gounder: So, Sam, Dr. Paul Farmer was a mentor of mine, actually, over the course of my training. And in Tracy Kidder’s biography of Paul, there’s a quote of one of Paul’s colleagues, Haitian colleagues, who says that, “Giving people medicine for tuberculosis and not giving them food is like washing your hands and drying them in the dirt.” 

Sam Tsemberis: That is so on target for what all of these issues are about. I think of homelessness, actually, as a poorly named term for all of the systemic failures that people have faced in order to end up homeless. 

We need to get, you know, take care of the emergency, put everyone in housing, but that’s sort of the beginning of the job. Then the real work starts to address the root causes that contribute and continue to increase the problem as opposed to just dealing with the symptom all the time. 

[“Epidemic” theme music begins playing.] 

Céline Gounder: Next time, on the series finale of “Epidemic: Eradicating Smallpox” … 

Rahima Banu. 

Redwan Ahmed: Rahima Banu. 

Daniel Tarantola: Rahima Banu. 

Iftekhar Iqbal: Rahima Banu. 

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Why is treating drug-resistant tuberculosis so expensive?

Pharmaceutical giant Johnson & Johnson’s patents on a drug called bedaquiline have a lot to do with it.

In this episode of “An Arm and a Leg,” host Dan Weissmann speaks with writer and YouTube star John Green about how he mobilized his massive online community of “nerdfighters” to change the company’s policy and help make the drug more accessible.

But not every lifesaving drug has a champion with a platform as big as Green’s. Drug companies’ patents limit access to affordable treatments as well.

Weissmann also speaks with drug-patent expert Tahir Amin about how companies keep their drugs under patent for so long and the legal challenges that have been made to these policies around the world.

Dan Weissmann

@danweissmann

Host and producer of "An Arm and a Leg." Previously, Dan was a staff reporter for Marketplace and Chicago's WBEZ. His work also appears on All Things Considered, Marketplace, the BBC, 99 Percent Invisible, and Reveal, from the Center for Investigative Reporting.

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Transcript: John Green vs. Johnson & Johnson (Part 1)

Note: “An Arm and a Leg” uses speech-recognition software to generate transcripts, which may contain errors. Please use the transcript as a tool but check the corresponding audio before quoting the podcast.

Dan: Hey there — A little while ago, I got to talk with this widely-beloved dude. 

John Green: My name is John Green, and I’m a writer and YouTuber.

Dan: John Green, writer, may be the most likely to ring a bell. His best-known book, “The Fault in Our Stars,” sold millions of copies and became a movie.

But before he was such a big deal as a writer, he and his brother Hank were a big deal on YouTube. And they still are. We’ll get into the details a little bit later.

But for now the thing to know is: Pretty recently, John Green got on the main YouTube channel he and his brother share, and started talking to hundreds of thousands of people about how the drug-maker Johnson & Johnson was using legalistic drug patent games to deny access to life saving tuberculosis medicine to millions of people in poor countries. And John Green wanted anybody listening to stand up and do something about it.

John Green: Tell your friends about this injustice, tell your family, tell the internet, because the only reason Johnson Johnson executives think they can get away with this is that they think we aren’t paying attention in the part of the world where they sell most of their products, their Band Aids, their Tylenol, their Listerine.

Dan: And a lot of the people who watch John Green’s videos– the community calls themselves “nerdfighters” — made a fair amount of noise.

And a few days later, Johnson & Johnson seemed to blink. The company issued a statement saying it would allow a cheaper generic version of that TB drug to be more widely distributed. Here’s John’s brother Hank from their next YouTube video.

Hank Green: And this happened in a week, John, you made a video on Tuesday, “it’s Friday right now! I’m really proud to be a part of this community I’m really proud to be your brother…”

Dan: I mean, that’s a super-fun story that we’re gonna get into: How a self-proclaimed nerd raised an internet posse to influence a global pharma giant to do something pretty decent-sounding.

We are definitely going to tell that story.

… But that story is just a first impression, because the whole thing is bigger and way more complicated.

As John Green would tell you –as he told me – he was adding his bit to a global movement — to advocates and lawyers in places like India, for instance, that have been doing the heavy, heavy lifting, for years.

And, of course, to understand any of this, we are going to have to get into how pharma companies use drug patents. And what it means.

And that is part of where this story comes home.

As John Green mentioned in his video, the story of this tuberculosis drug wouldn’t normally draw a lot of attention in the U.S. TB isn’t one of our top health issues.

But … the mechanisms at play with this tuberculosis drug – the patent games – are some of the same mechanisms that make so many drugs here so expensive: Drugs like Humira, and insulin, and pretty much everything else.

And here’s what’s actually the most interesting part:

Behind the first impression version of this story – nerds in the U.S. and their online posse for people in what’s called the Global South –

There’s a story about people and ideas from the Global South coming here to save the U.S. from our own messed-up drug patent system.

Because they’ve figured out that unless we save ourselves, they’re screwed too. That’s a LOT! And it’s gonna take us two episodes to connect all the dots. 

You ready? Here we go…

This is An Arm and a Leg. A show about why health care costs so freaking much, and what we can maybe do about it. I’m Dan Weissmann. I’m a reporter, and I like a challenge. So our job on this show is to take one of the most enraging, terrifying, depressing parts of American life, and to bring you something entertaining, empowering, and useful.

And so, let’s start with John Green — YouTuber.

John and his brother Hank were among the people who invented the idea of being a professional quote-unquote “creator” on the internet – maybe kind of by accident, at first. But they were hugely successful at it.

In 2007, they started posting video messages to each other on this still-kinda-new website called YouTube. They thought a few hundred people might be interested, if they kept it up for a year.

Then Hank posted a song about waiting for the last Harry Potter book to come out.

Hank Green: [Singing] … I’m getting kind of petrified. What would Ron do if Hermione died or if Voldemort killed Hedwig, Just for yucks? …

Dan: It got a million views– which, early YouTube? That was huge. And they were off. Today, that original YouTube channel has more than three and a half million subscribers. Hank now manages more than a hundred full-time employees and a whole bunch of contractors.

And, you know, it’s impossible to sum up the thousands of videos they’ve shared.

Hank Green: Good morning, John. Today we’re gonna be making cinnamon toast two different ways.

John Green: Good morning, Hank, it’s Tuesday. So I need your help with the thing I’m working on. I need to learn some jokes, but not just any jokes.

Dan: But it’s fair to say digressive, ranty arguments are kind of a staple.

John Green: Good morning Hank, it’s Tuesday. I kind of hate Batman.

Hank Green: Good morning, John, you pretty much got Batman entirely wrong.

John Green: Batman is just a rich guy with an affinity for bats who’s playing out his insane fantasy of single-handedly ridding Gotham of crime. How is that heroic?

Hank Green: Of course, I know that Your video on Tuesday wasn’t really about Batman, it was just using Batman as a tool to say something.

Dan: The arguing may have something to do with why they call their community nerd-fighters.

But the idea is more that this is a community of nerds fighting for something. As they put it: fighting to ‘reduce the amount of suck in the world.’

Partly by producing things that can be amusing and sweet and thoughtful – but also by giving money to worthy causes and encouraging others to do the same.

Every year, since the beginning, they have hosted a kind of online telethon called the Project for Awesome.

John Green: Good morning, Hank. It’s Thursday, December 17th, 2009. Time for the Project for Awesome! Hooray! Oh! [crashing sound] Ow! Whoa! I got too excited about the awesome.

Dan: It is SUPER-interactive: People upload videos pitching their favorite charities, they vote, they give. They’ve raised more than 30 million dollars. And a lot of it has gone to an organization called Partners in Health, which provides incredibly effective health services in places like Haiti and Sierra Leone.

And just to indulge my own tendency to nerdy digression here: A book about Partners in Health and its founder, Paul Farmer, is one of my favorite books of all time.

It’s called Mountains Beyond Mountains, and when we finally do start a book club – and I haven’t forgotten making that suggestion here – I want to nominate it as one of our first picks.

Anyway, the Green brothers are huge supporters of Partners in Health. And then, three years ago, John started one of his weekly videos this way.

John Green: Good morning, Hank, it’s Tuesday. So over the next five years, our families are donating six and a half million dollars to Partners in Health Sierra Leone. Also we need your help…

Dan: And here’s where we get to tuberculosis. In the run up to that commitment, John Green visited Sierra Leone with his wife Sarah, and met some of the folks there from Partners in Health.

Here’s how he told the story to me. I’m not gonna interrupt:

John Green: On the last day, two of the physicians from Partners in Health, who we were visiting with said, “Hey, if it’s not a big deal to you, we’d really like to stop by this TB hospital on the way back to the capitol because we have a case we’re really concerned about.” And I said, “Yeah, of course, I’m not going to get in the way of actual doctoring.” So … But I, you know, I didn’t think much of it at the time.

So we get to this TB hospital. And immediately upon arriving, the doctors go off to do doctor stuff. And Sarah and I are just sort of sitting there in this little nine year old boy who tells me his name is Henry, which is my son’s name, at the time, my son was nine, kind of grabs me by the shirt and starts walking me around. And he takes me to the lab, shows me how to look into the microscope to see if a specimen has tuberculosis, introduces me to the lab technician, he takes me to the patient wards, he takes me to the kitchen where they make the food, he takes me all over the hospital, and then eventually I end up in the room with where the doctors are, and, uh, and the, and the kid has departed and I said, you know, “I just spent 30 minutes with an extraordinary child named Henry and he gave me a tour of the whole facility and I have no idea who he is. Is he somebody’s kid? Is he a doctor’s kid?” And one of the doctors said, “you know, that’s what I thought when I first got here, uh, about Henry because he does seem like that. And actually he’s the case that we’re so concerned about that we, um, needed to come here.” And he wasn’t nine. He was 16. He was just really stunted and emaciated by tuberculosis. 

And, um, even though he was feeling pretty good at the time, the doctors knew that his treatment for multidrug resistant TB was failing, and that he needed access to a new cocktail that included bedaquiline, this drug that’s been around in the U.S. since 2013, but was, was at the time totally unavailable in Sierra Leone. And so, that was my introduction to TB and we were on our way to the airport and I said, “what’s gonna, what’s gonna happen to that kid?” And they were like, “it’s going to be a difficult path for him um, if we can’t get, if we can’t get the new treatment cocktail to him, he has a very low chance of survival.”

So that’s the beginning of the story for me, is meeting Henry.

Dan: I’m going to skip to the end of this part of the story: Henry’s OK. He’s alive, because he did get the drug cocktail that included Bedaquiline.

But, after that visit, John Green did not know that, and he started obsessing a bit about tuberculosis. Reading about it, thinking about it. And over the last year or so, he started occasionally sharing, making videos about TB. Some of them were fun, short, nerdy explainers.

John Green: What if I told you that tuberculosis gave us the cowboy hat? 

John Green: How did TB reinvigorate women’s shoe fashions?

John Green: How did tuberculosis help New Mexico become a state? I’m so glad you asked.

Dan: But he also dug into the deeper reason he’d become obsessed with TB. Because it’s a surprisingly big deal, still.

John Green: It’s almost certain that in the last 2, 000 years, more people died just from tuberculosis than died from all wars combined.

And before you think like, oh, but that’s ancient history. No, more people died last year from tuberculosis than died in war, and every year going back to World War II

Dan: We fact checked that. He’s actually understating things. By a lot.

TB is a growing problem. In the middle of the 20th Century, new medicines took TB off the list of diseases that most people in the rich parts of the world had to worry about. But it never got wiped out.

And in less-rich parts of the world, where access to the best treatments was spottier, drug-resistant strains of TB developed and developed. But no new drugs came out– no drugs for drug-resistant TB.

Until bedaquiline, produced by Johnson & Johnson. The drug that did eventually help save Henry, the kid that John Green met in Sierra Leone.

But bedaquiline is expensive. So people in less-rich parts of the world often can’t get it. One study estimated that eight out of nine people who needed treatment with a drug like bedaquiline weren’t getting it.

And of course medicines stay expensive when they’re under patent protection: Once the patent on a drug expires, anybody can make and sell a generic version of the drug. Which, you know, competition, usually allows prices to fall.

And in one way, as John Green started making tuberculosis videos in 2022, it might have seemed like there was hope coming up:

Bedaquiline was patented in 2003. Patents last twenty years. By 2023, that patent would expire.

Except, not really. Because it turns out, patents on drugs have ways of living for way more than twenty years.

That’s next.

MIDROLL: This episode of An Arm and a Leg is produced in partnership with KFF Health News. That’s a nonprofit newsroom that covers health care in America. KFF Health News are amazing journalists – their work wins all kinds of awards every year – and I’m honored to work with them. We’ll have a little more information about KFF at the end of this episode.

Dan: So, let’s talk about drug patents and how they work– and why they don’t just last 20 years. And this is something my colleague Emily Pisacreta has been interested in for a long time.

Emily: It’s true. As I’ve said before on the show, I’m an insulin-dependent diabetic. If I can’t get insulin, I’m literally dead. And, insulin is super expensive. And insulins have became so expensive in part because of the kinds of patents on them – even though those patents are way more than twenty years old! ..

Dan: Right, so you’ve got a big interest in this question: How can a patent last more than twenty years?

Emily: And Dan, my answer to that question is a riddle: When is a patent not a patent?

Dan: OK, I give up. When is a patent not a patent. 

Emily: When it’s 74 patents.

Dan: Yeah, this riddle is going to need some explaining.

Emily: Right. So, for a while I used an insulin called Lantus.It’s a once-a-day, long acting insulin made by the French company Sanofi. Sanofi first patented Lantus in 1994. So, that should mean it’s out of patent protection by 2014, right?

Dan: Uh-huh

Emily: Except, according to a report from a few years back, Sanofi actually filed for 74 patents on Lantus. And a lot of those patents were filed WAY after 1994. So, ONE patent from 1994 would’ve lasted till 2014. 74 patents could’ve lasted until 2031.

Dan: Ah, hence the very-specific answer for your riddle. I mean, I knew the principle – these insulin products have multiple patents on them, but 74 is … more than I’d imagined. What are 74 things you even COULD patent?

Emily: I mean, for Lantus, there are patents on formulations to improve stability. Like, all right … But there are also patents on the pen cartridge that Lantus comes in. And inside of that, a whole bunch of patents on the drive mechanisms, like the little plastic piston that lets you pick the right dose. These kinds of things.

Dan: OK. Now, I notice you said, those 74 patents COULD’ve lasted until 2031?

Emily: That’s right. As it turns out, in the case of Lantus, another drug maker actually did fight some of Sanofi’s later patents and won. But more often – and I mean a lot more often — simply filing for a patent is enough to keep generic makers away.

Dan: Sure. Who wants to spend money fighting a patent lawsuit when you could just y’know, manufacture some other drug?

Emily: Right. And of course this is not just insulin.

Tahir Amin: Oh, this is the standard practice. This happens with every drug.

Emily: That’s Tahir Amin – one of the big global experts on drug patents. Tahir the CEO and cofounder of a non-profit called I-MAK, which stands for …

Tahir Amin: The Initiative for Medicines Access and Knowledge. We work on building a more just and equitable access to medicine system.

Emily: The report that documented 74 patents on Lantus, that one insulinI used to use? Tahir’s group wrote it. And Tahir says this is business as usual, because it means big money.

Tahir Amin: Particularly when you’re talking about some of the drugs that you see in the US market, like for rheumatoid arthritis, these are worth billions of dollars.

Emily: Tahir’s group did a study on the 12 best-selling drugs in the U.S. They had an average of 131 patents each. If all the patents stick, that’s an average of 38 years of patent protection.

Dan: So maybe we can update your riddle: 

When is a patent not a patent? 

When it’s 131 patents.

Emily: Yeah, activists and experts call this kind of thing “patent thicketing” or “evergreening.”

Dan: I’ve been reading up on this too. Drug companies have their own name for this practice. They call it  “life-cycle management.”

Emily: What a term of art. And actually bedaquiline, the TB drug,is a great example. In 2014, Tahir did what they call a “patent landscape” on bedaquiline, mapping all the different patents J&J filed around the world.

Tahir Amin: We all knew that with the advent of multiple drug resistance TB, we needed to know how we’re gonna get these drugs to the communities and the countries that need them most.

Emily: He identified a long list of patents J&J filed. And the most important being the original formula for the drug, set to expire in 2023, and the second most important patent was on something called the salt formulation for the drug.

Dan: Salt formulation.

Emily: Yep, and it’s kind of worth getting into the weeds here just for a second. Because this sort of thing is at the absolute heart of these drug patent games. When you develop a drug, the first step is finding a molecule that works in a test tube, that does the thing you want, like kills the germ. That gonna be the first patent, that molecule. But the molecule isn’t medicine.

Tahir Amin: You have to develop it, formulate it so that it’s actually more bioavailable, that it can get into the bloodstream and, and do whatever biological activity that it does. And this is classic organic chemistry stuff that is routine.

Emily: It’s routine. SO what he’s saying here, and other experts agree, by the way, identifying a salt formulation that can work as medicine isn’t where the innovation is. And most importantly, it doesn’t have to take a long time. But J&J didn’t apply for their secondary patent on it until a full four years after their initial patent.

Dan: I’ve started reading about “lifecycle management,” you know, what the pharma industry calls all this. And this is literally the playbook. One lawyer has advice about when to file this kind of secondary patent, here’s what he says, quote:

“You want to do this as late as possible, but before clinical trials. If Company X can hold off filing for two or three years during the drug discovery phase, it will buy more time on the back end of the patent’s term.”

Emily: Yep, and J & J waited four years. A little extra.

Dan: And we asked Johnson & Johnson: Hey, did you put off filing this secondary patent on the salt formulation to stretch out your patent rights? We haven’t heard back.

So: TB advocates kind of had their eye on July 2023. Because in July 2023 the original patent that Johnson & Johnson had on bedaquiline was set to expire. And the secondary patent, this sort of basic add on, was to become the next big obstacle.

So, back to John Green. He’s learning all this stuff about TB – including about how the secondary patent on bedaquiline is gonna keep clamping down access.

And he’s making all these TB videos, but it’s not like he has some kind of big plan:

John Green: But the, for me, You know, this is all I was thinking about. It was the first thing I thought about in the morning and the last thing I thought about before I went to sleep, is how did we end up in a world where the world’s deadliest infectious disease is largely ignored in the richest parts of the world?

Dan: And he was getting kind of discouraged.

John Green: I felt powerless before it. And this is one of the real lessons for me is that I felt like, well, what … what are we going to do? It’s not like Johnson & Johnson is going to abandon the idea of secondary patents, right?

Dan: He knew: secondary patents can be worth billions of dollars.

John Green: And so they’re not going to abandon these attempts to make their patents last longer than they should because they’re a for profit company. And I felt really … Yeah, I just felt powerless.

Dan: And then, earlier this year, something changed. It was not something that John Green, or an army of nerds could have done, or could’ve done anything about.

It was done by India’s patent office – responding to a legal challenge brought by two young women who had survived tuberculosis – one from India and one from South Africa.

It was based on legal work that our new pal Tahir Amin and others did in India almost twenty years ago.

And gave John Green an idea of how an army of nerdfighters could join this battle.

That’s next time, on An Arm and a Leg. Till then, take care of yourself.

This episode of An Arm and a Leg was produced by me, Dan Weissmann, and Emily Pisacreta – with help from Bella Cjazkowski, and edited by Ellen Weiss.

Daisy Rosario is our consulting managing producer. 

Adam Raymonda is our audio wizard. 

Our music is by Dave Winer and Blue Dot Sessions.

Gabrielle Healy is our managing editor for audience. She edits the First Aid Kit Newsletter.

Bea Bosco is our consulting director of operations. 

Sarah Ballema is our operations manager.

An Arm and a Leg is produced in partnership with KFF Health News–formerly known as Kaiser Health News. That’s a national newsroom producing in-depth journalism about health care in America, and a core program at KFF — an independent source of health policy research, polling, and journalism.

And yes, you did hear the name Kaiser in there, and no: KFF isn’t affiliated with the health care giant Kaiser Permanente. You can learn more about KFF Health News at armandalegshow.com/KFF.

Zach Dyer is senior audio producer at KFF Health News. He is editorial liaison to this show.

Thanks to Public Narrative — that’s a Chicago-based group that helps journalists and nonprofits tell better stories — for serving as our fiscal sponsor, allowing us to accept tax-exempt donations. You can learn more about Public Narrative at www.publicnarrative.org.

And thanks to everybody who supports this show financially.

If you haven’t yet, we’d love for you to join us. The place for that is armandalegshow.com/support. That’s armandalegshow.com/support. 

It helps us out a lot, so thanks for pitching in if you can! And thanks for listening!

“An Arm and a Leg” is a co-production of KFF Health News and Public Road Productions.

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KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.

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The Host

Julie Rovner
KFF Health News

@jrovner

Read Julie's stories.

Julie Rovner is chief Washington correspondent and host of KFF Health News’ weekly health policy news podcast, “What the Health?” A noted expert on health policy issues, Julie is the author of the critically praised reference book “Health Care Politics and Policy A to Z,” now in its third edition.

This week, while KFF Health News’ “What the Health?” takes a break, here’s an encore of a favorite episode this year: Host and chief Washington correspondent Julie Rovner leads a rare conversation with the current and two former secretaries of Health and Human Services. Taped in June before a live audience at Aspen Ideas: Health, part of the Aspen Ideas Festival, in Aspen, Colorado, Secretary Xavier Becerra and two of his predecessors, Kathleen Sebelius and Alex Azar, talk candidly about what it takes to run a department with more than 80,000 employees and a budget larger than those of many countries.

Among the takeaways from this week’s episode, originally aired in June:

• The Department of Health and Human Services is much more than a domestic agency. It also plays a key role in national security, the three HHS secretaries explained, describing the importance of the “soft diplomacy” of building and supporting health systems abroad.
• Each HHS secretary — Sebelius, who served under former President Barack Obama; Azar, who served under former President Donald Trump; and Becerra, the current secretary, under President Joe Biden — offered frank, sobering, and even funny stories about interacting with the White House. “Anything you thought you were going to do during the day often got blown up by the White House,” Sebelius said. Asked what he was unprepared for when he started the job, Azar quipped: “The Trump administration.”
• Identifying their proudest accomplishments as the nation’s top health official, Azar and Becerra both cited their work responding to the covid-19 pandemic, specifically Operation Warp Speed, the interagency effort to develop and disseminate vaccines, and H-CORE, which Becerra described as a quiet successor to Warp Speed. They also each touted their respective administrations’ efforts to regulate tobacco.
• Having weathered recent debates over the separation of public policy and politics at the top health agency, the panel discussed how they’ve approached balancing the two in decision-making. For Becerra, the answer was unequivocal: “We use the facts and the science. We don’t do politics.”

Click to open the transcript

Transcript: An Encore: 3 HHS Secretaries on What the Job Is Really Like

[Editor’s note: This transcript, generated using transcription software, has been edited for style and clarity.]

Julie Rovner: Hello “What the Health?” listeners. We’re taking this week off from the news while KFF holds an all-staff retreat. We’ll be back next week, but in the meantime, here’s an encore of one of our favorite episodes of the year — a chat with three Health and Human Services Secretaries. We’ll be back next week with our regular news roundup.

Hello and welcome back to “What the Health?” I’m Julie Rovner, coming to you this week from the Aspen Ideas: Health conference in Aspen, Colorado. We have a cool special for you this week. For the first time, the current secretary of Health and Human Services sat down for a joint interview with two of his predecessors. This was taped before a live audience on Wednesday evening, June 21, in Aspen. So, as we like to say, here we go.

Hello. Good evening. Welcome to Aspen Ideas: Health. I’m Julie Rovner. I’m the chief Washington correspondent for KFF Health News and also host of KFF Health News’ health policy podcast, “What the Health?,” which you are now all the audience for, so thank you very much. I’m sure these people with me need no introduction, but I’m going to introduce them anyway because I think that’s required.

Immediately to my left, we are honored to welcome the current U.S. secretary of Health and Human Services, Xavier Becerra. Secretary Becerra is the first Latino to serve in this post. He was previously attorney general of the state of California. And before that, he served in the U.S. House of Representatives for nearly 25 years, where, as a member of the powerful Ways and Means Committee, he helped draft and pass what’s now the Affordable Care Act. Thank you for joining us.

Next to him, we have Kathleen Sebelius, who served as secretary during the Obama administration from 2009 to 2014, where she also helped pass and implement the Affordable Care Act. I first met Secretary Sebelius when she was Kansas’ state insurance commissioner, a post she was elected to twice. She went on to be elected twice as governor of the state, which is no small feat in a very red state for a Democrat. Today, she also consults on health policy and serves on several boards, including — full disclosure — that of my organization, KFF. Thank you so much for being here.

And on the end we have Alex Azar, who served as HHS secretary from 2018 to 2021 and had the decidedly mixed privilege of leading the department through the first two years of the covid pandemic, which I’m sure was not on his to-do list when he took the job. At least Secretary Azar came to the job with plenty of relevant experience. He’d served in the department previously as HHS deputy secretary and as general counsel during the George W. Bush administration and later as a top executive at U.S. drugmaker Eli Lilly. Today, he advises a health investment firm, teaches at the University of Miami Herbert Business School, and sits on several boards, including the Aspen Institute’s. So, thank you.

Former Secretary of Health and Human Services Alex Azar: Thank you.

Rovner: So I know you’re not here to listen to me, so we’re going to jump in with our first question. As I’m sure we will talk about in more detail, HHS is a vast agency that includes, just on the health side, agencies including the Food and Drug Administration, the National Institutes of Health, the Centers for Disease Control and Prevention, and the Centers for Medicare & Medicaid Services. The department has more than 80,000 employees around the country and throughout the world and oversees more than one and a half trillion dollars of federal funding each year. I want to ask each of you — I guess we’ll start with you — what is the one thing you wish the public understood about the department that you think they don’t really now?

Secretary of Health and Human Services Xavier Becerra: Given everything you just said, I wish people would understand that the Constitution left health care to the states. And so, as big as we are and as much as we do — Medicare, Medicaid, CHIP [Children’s Health Insurance Program], Obamacare — we still don’t control or drive health care. The only way we get in the game is when we put money into it. And that’s why people do Medicare, because we put money into it. States do Medicaid because we put money into it. And it became very obvious with covid that the federal government doesn’t manage health care. We don’t have a national system of health or public health. We have a nationwide system of public health where 50 different states determine what happens, and so one state may do better than another, and we’re out there trying to make it work evenhandedly for everyone in America. But it’s very tough because we don’t have a national system of public health.

Rovner: Secretary, what’s the thing that you wish people understood about HHS?

Former Secretary of Health and Human Services Kathleen Sebelius: Well, I agree with what Secretary Becerra has said, but it always made me unhappy that people don’t understand fully, I don’t think, the international role that HHS plays, and it is so essential to the safety and security and resilience of the United States. So we have employees across the world. CDC has employees in about 40 other countries, and helping to build health systems in various parts of the world, sharing information about how you stand up a health system, what a great hospital looks like. NIH does experiments and clinical trials all over the globe and is regarded as the gold standard. And we actually, I think, at HHS were able to do what they call soft diplomacy. And a lot of countries aren’t eager to have the State Department involved. They’re certainly not eager to see soldiers. Our trade policies make some people uncomfortable. But they welcome health professionals. They welcome the opportunity to learn from the United States. So it’s really a way often to get into countries and make friendships. And we need to monitor across the globe, as covid showed so well. When an outbreak happens someplace else in the world, we can’t wait for it to arrive on the border of the United States. Safety and security of American citizens really depends on global information exchange, a global surveillance exchange. The CDC has also trained epidemiologists in regions around the world so that they can be faster and share information. And I think too often in Congress, those line items for foreign trips, for offices elsewhere, people say, “Well, we don’t really need that. We should focus all our attention on America.” But I’ve always thought, if folks really understood how integral it is not just to our health security, but really national security, that we have these partnerships — and it’s, as I say, I think the best soft diplomacy and the cheapest soft diplomacy underway is to send health professionals all over the globe and to make those friendships.

Rovner: Do you think people understand that better since covid?

Sebelius: Maybe. You know, but some people reacted, unfortunately, to covid, saying, “Well, we put up bigger walls, and we” — I mean, no disease needs a passport, no wall stops things from coming across our borders. And I’m not sure that still is something that people take to heart.

Rovner: Secretary Azar, you actually have the most — in terms of years — experience at the department. What is it that people don’t know that they should?

Azar: So I probably would have led with what Secretary Becerra said about just how highly decentralized the public health infrastructure and leadership and decision-making is in the United States. I mean, it really — all those calls are made, and it’s not even just the 50 states. It’s actually 62 public health jurisdictions, because we separately fund a whole series of cities. I’ll concur in that. I’d say the other thing that people probably don’t understand, and maybe this is too inside baseball, is the secretary of HHS is, on the one hand, probably the most powerful secretary in the Cabinet and, on the other hand, also quite weak. So literally every authority, almost every authority, in the thousands and thousands of pages of U.S. statute that empower programs at HHS, say, “The secretary shall …” So the FDA, the CDC, CMS, all of these programs really operate purely by delegation of the secretary, because Secretary Becerra allows them to make decisions or to run programs. They are his authorities. And so the media, then, when the secretary acts, will … [unintelligible] … “How dare you,” you know, “how dare you be involved in this issue or that issue?” Well, it is legally and constitutionally Secretary Becerra’s job. And, on the other hand, you are supervising — it’s like a university, because you’re also supervising operating divisions that are global household brands. It is really like being a university president, for all that’s good and evil of that. You have to lead by consensus. You have to lead by bringing people along. You are not a dictator, in spite of what the U.S. statutes say. It’s very, very similar to that — that you, the secretary, is both powerful, but also has to really lead a highly matrixed, consensus-based organization to get things done.

Rovner: You’re actually leading perfectly into my next question, which is, how do you juggle all the moving pieces of this department? Just putting the agency heads in one room could fill a room this size. So tell us what sort of an average day for each of you would look like as secretary, if there’s such a thing as an average day.

Azar: Well, first, not an average administration, so take with a grain of salt my average day. So, interspersed among the two to five phone calls with the president of the United States between 7 a.m. and midnight, you know, other than that, um — I started every day meeting with my — you know, as secretary, you’ve got to have a team around you that’s not just your operating divisions, but I would start every morning — we would have just a huddle with chief of staff, deputy chief of staff, my head of public affairs. Often my general counsel would join that, my legislative leader. Just what’s going to hit us in the face today? Like, what are we trying to do, and what’s going to hit us in the face today? Just a situational awareness, every morning at about 8 a.m., quick huddle on that, and then diving into really the rhythm of the day of — I tried to drive — I use a book that I helped actually do some of the work on called “The 4 Disciplines of Execution,” just a tool of how do you focus and drive change in very complex organizations? So I tried to focus on four key initiatives that I spent as much of my time as secretary on leading and pushing on, and so I tried to make sure as much of my time was doing that. But then it’s reactive. You’re having to go to White House meetings constantly. You have to sign off on every regulation at the department. And so you’re in meetings just getting briefed and deciding approve or disapprove, so that rhythm constantly, and then add travel in, add evening commitments, add speeches. I’d say the biggest challenge you have as a leader in HHS is that first point of, focus, because you could be like a bobber on the water, just going with whatever’s happening, if you don’t have a maniacally focused agenda of, “I’ve got a limited amount of time. I’m going to drive change here. And if I don’t spend time every day pushing the department on this issue, being basically a burr in the saddle to make it happen, it won’t.” And you’ve just got to constantly be on that.

Rovner: Secretary Sebelius, what did your average day look like?

Sebelius: Well, I’m not going to repeat what Alex has just said. A lot of that goes on in the daily routine. First of all, I think all of us would be sent home the night before with a binder of materials — briefings for what you’re going to do the next day. So you may have 10 meetings, but each of those has a 20-page brief behind it. And then what the issues are, what the questions might be. So that’s your homework often that you’re leaving with at 7 or 8 at night. I like to run in the morning, and I would get up, read my schedule, and then go out and run on the [National] Mall because it sort of cleared my head. I’m proud of having — some of the folks may still be here — none of the detail ran before I started running, and my deal with them was, “I’m much older than you are, you know. We’re all going to run.”

Azar: They still —

Sebelius: Oh, here we go.

Azar: They still talk about it.

Sebelius: Well, one of them got to be a great marathon runner, you know. Can’t hurt. One guy started riding a bike, and I was like, “What are you doing?” I mean, if I fall, what are you going to do with the bike? I mean, am I going to carry it, are you going to carry it? I mean, who — anyway, so I started that way. You’d go then into the office. And one of the things that was not mentioned is HHS has an amazing, camera-ready studio, TV studio, that lots of other Cabinet agencies used. It has a setting that looks like “The View.” It has a stool that you can look in cameras, but two or three days a week we would do what they call “Around the Country.” So you would sit in a stool, and I’d be doing updates on the ACA or a pitch to enrollment or something about a disease, and you would literally have a cue card up that would say “Minneapolis, Andrea.” And I would say, “Good morning, Andrea.” And we would do a two-second spot in Minneapolis and they’d have numbers for me and then the camera would switch and it would be Bob in St. Louis. “Hello, Bob. How are you?” So that was a morning start that’s a little bit different. Anything you thought you were going to do during the day often got blown up by the White House: somebody calling, saying, you know, “The president wants this meeting,” “the vice president’s calling this.” So then the day gets kind of rearranged. And I think the description of who the key staff are around, but 12 operating agencies — any one of them could be a much more than full-time job. So just getting to know the NIH or, you know, seeing what CDC in Atlanta does every day, but trying to keep the leadership in touch, in tune, and make sure that — one of the things that, having been a governor and working with Cabinet agencies, that I thought was really important, is everybody has some input on everything. These are the stars, the agency heads. They know much more about health and their agencies than I would ever know. But making sure that I have their input and their lens on every decision that was made. So we had regular meetings where the flatter the organization, the better, as far as I’m concerned. They were all there and they gave input into policy decisions. But it is not a boring job and it’s never done. You just had to say at the end of the day, with this giant book, “OK, that’s enough for today. I’ll start again tomorrow, and there’ll be another giant book and here we go.”

Rovner: And your day, since you’re doing it now?

Becerra: I don’t know if it’s the pleasure or the bane of starting off virtually. Almost everything we did was via Zoom. I didn’t meet many of my team until months into the term because we were in the midst of covid. So we would start the days usually pretty early in the morning with Zooms and it would go one Zoom after the other. Of course, once we started doing more in-person activities, schedulers still thought they could schedule you pretty much one right after the other, and so they pack in as much as they can. I think all of us would say we’re just blessed to have some of the most talented people. I see Commissioner Califf from the FDA over there in the room. I will tell you, it’s just a yes … [applause] … . It’s a blessing to get to serve with these folks. They are the best in their fields. And you’re talking about some pretty critical agencies, FDA, NIH, CDC, CMS. I mean, the breadth, the jurisdiction, of CMS is immense. They do fabulous work. They are so committed. And so it makes it a lot easier. And then, of course, we all — we each have had — I have my group of counselors who are essentially my captains of the different agencies, and they help manage, because without that it would be near-impossible. And these are people who are younger, but my God, they’re the folks that every CEO looks for to sort of help manage an agency, and they’re so committed to the task. And so I feel like a kid in a candy store because I’m doing some of the things that I worked on so long when I was a member of Congress and could never get over the finish line. Now I get to sort of nudge everything over the finish line, and it really is helpful, as Alex said, to remind people that the statute does say, “The secretary shall … ,” not someone else, “the secretary shall … .” And so, at the end of the day, you get to sort of weigh it. And so it’s a pleasure to work with very talented, committed people.

Sebelius: Julie, I want to throw in one more thing, because I think this is back to what people don’t know, but it’s also about our days. There’s an assumption, when administrations change, the whole agency changes, right? Washington all changes. In a department like HHS, 90,000 employees scattered in the country and around the world, there are about 900 total political appointees, and they are split among all the agencies and the secretary’s office there. So you’re really talking about this incredibly talented team of professionals who are running those agencies and have all the health expertise, with the few people across the top that may try to change directions and put — but I think there’s an assumption that sort of the whole group sweeps out and somebody else sweeps in, and that really is not the case.

Rovner: So, as I mentioned, all three of you had relevant government experience before you came to HHS. Secretary Sebelius, you were a governor, so you knew about running a large organization. I want to ask all three of you, did you really understand what you were getting into when you became secretary? And is there some way to grow up to become HHS secretary?

Azar: I mean, yeah, I — yeah, I have no excuse. My first day, right after getting sworn in — the secretary has a private elevator that goes directly up to the sixth floor where the suite is, the deputy secretary’s office to the right, secretary to the left — my first day, I’m up, headed up with my security detail, and I get off and I walk off to the right. “Mr. Secretary, no, no, no. It’s this way.” Literally, it was like — it had been 11 years, but it was like coming home to me. I was literally about to walk into my old office as deputy secretary, and they show me to the secretary’s office. And I think for the first three months, I kept thinking Tommy Thompson or Mike Leavitt was going to walk in and say, “Get the hell out of my office.” And no, so it, and it was the same people, as Secretary Sebelius said. I knew all the top career people. I’d worked with them over the course of — in and out of government — 20 years. So it was very much a “coming home” for me. And it was many of the same issues were still the same issues. Sustainable growth rate — I mean, whatever else, it was all the same things going on again, except the ACA was new. That was a new nice one you gave me to deal with also. So, yeah, thank you.

Sebelius: You’re welcome. We had to have something new.

Rovner: What were you unprepared for when you took on this job?

Azar: Well, for me, the Trump administration.

Rovner: Yeah, that’s fair.

Azar: I, you know, had come out of the Bush administration. You’re at Eli Lilly. I mean, you know, you’re used to certain processes and ways people interact. And, you know, it’s just — it was different.

Sebelius: I had a pretty different experience. The rhythm of being a governor and being a Cabinet secretary is pretty similar. Cabinet agencies, working with the legislative process, the budget. So I kind of had that sense. I had no [Capitol] Hill experience. I had not worked on the Hill or served on the Hill, so that was a whole new entity. You’re not by protocol even allowed in the department until you’re confirmed. So I had never even seen the inside of the office. I mean, Alex talked about being confused about which way to turn. I mean, I had no idea [about] anything on the sixth floor. I hadn’t ever been there. My way of entering the department — I was President [Barack] Obama’s second choice. [Former South Dakota Democratic Senator] Tom Daschle had been nominated to be HHS secretary. And that was fine with me. And I said, “I’m a governor. I’ve got two more years in my term. I’ll join you sometime.” And then when Sen. Daschle withdrew, the president came back to me and said, “OK, how about, would you take this job if you’re able to get it?” And I said, “Yes, that’s an agency that’s interesting and challenging.” So I still was a governor, so I was serving as governor, flying in and out of D.C. to get briefings so I could go through hearings on this department that I didn’t know a lot about and had never really worked with, and then would go back and do my day job in Kansas. And the day that the Senate confirmation hearing began, a call came to our office from the White House. And this staffer said, “This governor? “Yes.” “President Obama has a plane in the air. It’s going to land at Forbes Air Force Base at noon. We want you on the plane.” And I said, you know, “That’s really interesting, but I don’t have a job yet. And I actually have a job here in Kansas. And here’s my plan. You know, my plan is I’m going to wait until I get confirmed and then I’ll resign and then I’ll get on the plane and then I’ll come to D.C.” And they said, “The president has a plane in the air, and it will land. He wants you on the plane.” First boss I’d had in 20 years. And I thought, “Oh, oh, OK. That’s a new thing.” So I literally left. Secretary Azar has heard this story earlier, but I left an index card on my desk in Kansas that said, “In the event I am confirmed, I hereby resign as governor.” And it was notarized and left there because I thought, I’m not giving up this job, not knowing if I will have another job. But halfway across the country I was confirmed and they came back and said — so I land and I said, “Where am I going?” I, literally, where — I mean, I’m all by myself, you know, it’s like, where am I going? “You’re going to the White House. The president’s going to swear you in.” “Great.” Except he couldn’t swear me in. He didn’t have the statutory authority, it turns out, so he could hold the Bible and the Cabinet secretary could swear me in. And then I was taken to the Situation Room, with somebody leading the way because I’d never been to the Situation Room. And the head of the World Health Organization was on the phone, the health minister from Canada, the health minister from Mexico, luckily my friend Janet Napolitano, who was Department of Homeland Security secretary — because we were in the middle of the H1N1 outbreak, swine flu, nobody knew what was going on. It was, you know, an initial pandemic. And everybody met and talked for a couple of hours. And then they all got up and left the room and I thought, woo-hoo, I’m the Cabinet secretary, you know, and they left? And somebody said to me later, well, “Does the White House find you a place to live?” I said, “Absolutely not. Nobody even asked if I had a place to stay.” I mean, it was 11 o’clock at night. They were all like, “Good night,” “goodbye,” “see ya.” So I luckily had friends in D.C. who I called and said, “Are you up? Can I come over? I’d like somebody to say, ‘Yay,’ you know, ‘we’re here.’” So that’s how I began.

Rovner: So you are kind of between these two. You have at least a little more idea of what it entailed. But what were you unprepared for in taking on this job?

Becerra: Probably the magnitude. Having served in Congress, I knew most of the agencies within HHS. I had worked very closely with most of the bigger agencies at HHS. As AG — Alex, I apologize — I sued HHS quite a —

Azar: He sued me a lot.

Becerra: Quite a few times.

Azar: Becerra v. Azar, all over the place.

Becerra: But the magnitude. I thought running the largest department of justice in the land other than the U.S. Department of Justice was a pretty big deal. But then you land and you have this agency that just stretches everywhere. And I agree with everything that Kathleen said earlier about the role that we play internationally. We are some of the best ambassadors for this country in the world because everyone wants you to help them save lives. And so it really helps. So the magnitude — it just struck me. When President Biden came in, we lost the equivalent of about — what, 13 9/11 twin tower deaths one day. Every day we were losing 11 twin tower deaths. And it hits you: You’ve got to come up with the answer yesterday. And so the White House is not a patient place, and they want answers quickly. And so you’re just, you’re on task. And it really is — it’s on you. You really — it smothers you, because you can’t let it go. And whether it was covid at the beginning or monkeypox last year, all of a sudden we see monkeypox, mpox, starting to pop up across the country. And it was, could this become the next covid? And so right away you’ve got to smother it. And the intensity is immediate. Probably the thing that I wasn’t prepared for as well, along with the magnitude, was, as I said, the breadth. Came in doing all these Zooms virtually to try to deal with the pandemic. But probably the thing that I had to really zero in on even more, that the president was expecting us to zero in on more, was migrant kids at the border and how you deal with not having a child sleep on a cement floor with an aluminum blanket and just trying to deal with that. It won’t overwhelm you necessarily, but — and again, thank God you’ve got just people who are so committed to this, because at any hour of the day and night, you’re working on these things — but the immensity of the task, because it’s real. And other departments also have very important responsibilities — clearly, Department of Defense, Department of State. But really it truly is life-and-death at HHS. So the gravity, it hits you, and it’s nonstop.

Rovner: All three of you were secretary at a time when health was actually at the top of the national agenda — which is not true. I’ve been covering HHS since 1986, and there have been plenty of secretaries who sort of were in the back of the administration, if you will, but you all really were front and center in all of these things. I want to go to sort of down the line. What was the hardest decision you had to make as secretary?

Becerra: Um …

Rovner: You’re not finished yet. I should say so far.

Becerra: I mean, there have been a lot of tough decisions, but, you know, when your team essentially prepares them up and you have all this discussion, but by the time it gets to me, it really has been baked really, really well. And now it’s sort of, White House is looking at this, we are seeing some of this, we’ve got to make a call. And again, Dr. Califf could speak to this as well. At the end of the day, the decisions aren’t so much difficult. It’s that they’re just very consequential. Do you prepare for a large surge in omicron and therefore spend a lot of money right now getting ready? Or do you sort of wait and see a little bit longer, preserve some of your money so you can use some of that money to do the longer-term work that needs to be done to prepare for the next generation of the viruses that are coming? Because once you spend the dollar, you don’t have it anymore. So you got to make that call. Those are the things that you’re constantly dealing with. But again, it just really helps to have a great team.

Sebelius: So I would say I was totally fortunate that the pandemic we dealt with was relatively short-lived and luckily far, far milder than what consumed both the secretaries to my left and right, and that was fortunate. A lot of our big decision areas were under the rubric of the Affordable Care Act and both trying to get it passed and threading that needle but then implementation. And I — you know, thinking about that question, Julie, I would say one of the toughest decisions — just because it provided a real clash between me and some of the people in the White House; luckily, at the end of the day, not the president, but — was really about the contraception coverage. Reproductive health had been something I’d worked on as a legislator, as governor. I felt very strongly about it. We’d fought a lot of battles in Kansas around it, and part of the Affordable Care Act was a preventive services benefit around contraceptive care. And that was going to be life-changing for a lot of women. And how broad it should be, how many battles we were willing to take on, how that could be implemented became a clash. And I think there were people in the administration who were hopeful that you could avoid clashes. So just make a compromise, you know, eliminate this group or that group, who may get unhappy about it. And at the end of the day, I was helped not just by people in the department, but mobilized some of my women Cabinet friends and senior White House women friends. And we sort of had a little bit of a facedown. And as I say, the president ended up saying, “OK, we’ll go big. We’ll go as big as we possibly can.” But I look back on that as a — I mean, it was a consequential decision, and it was implementation — not passing the rag in the first place, but implementing it. And it had a big impact. A big impact. It’s not one I regret, but it got a little a little tense inside, but what would be friendly meetings.

Azar: I’d use the divide Secretary Becerra talked about, which is that consequential versus hard decisions, that a lot — I think one could have a Hamlet-like character. I don’t. And so making the call when it comes to you wasn’t a terribly difficult thing, even. These are life-and-death decisions, but still yourself, you know your thought processes, you think it through, it’s been baked very well, you’ve heard all sides. You just have to make that call. So I’d maybe pivot to probably it’s more of a process thing. The hardest aspect for me was just deciding when do you fight and when do you not fight with, say, the White House? What hills do you die on? And where do you say, “Yeah, not what I would do, but I just have to live to fight another day.” Those were probably the toughest ones to really wrestle with.

Rovner: Was there one where you really were ready to die on the hill?

Azar: There were a lot. There were a lot. I mean, I’ll give you one example. I mean, I left a lot of blood on the field of battle just to try to outlaw pharmaceutical rebates, to try to push those through to the point of sale. I probably stayed to the end just to get that dag — because I, the opponents had left the administration and I finally got that daggone rule across the finish line right at the end. And that was something that I felt incredibly strongly that you could never actually change. I’ve lived inside that world. You could never change the dynamic of pharmaceutical drug pricing without passing through rebates to the point of sale. And I had so many opponents to get that done. It was a three-year constant daily battle that felt vindicated then to get it done. But that was a fight.

Rovner: And of course, I can’t help but notice that all of the things that you all are talking about are things that are still being debated today. None of them are completely resolved. Let’s turn this around a little bit. I wanted to ask you what you’re most proud of actually getting accomplished. Was it the rebate rule? That was a big deal.

Azar: For me, it has to be Operation Warp Speed. …[applause] … Yeah. Thank you. That was just — I mean, and I don’t want to take the credit. I mean, it was public-private. Mark Esper, this could not have happened without the partnership of the Defense Department, and it could not have happened without Mark Esper as secretary, because — I guarantee you, I’ve dealt with a lot of SecDefs in my career — and when the secretary of defense says to you, “Alex, you have the complete power and support of the Department of Defense. You just tell me what you need.” I haven’t heard those words before. And he was a partner and his whole team a partner throughout. And when you have the muscle of the U.S. military behind you to get something done, it is miraculous what happens. I mean, we were making hundreds of millions of doses of commercial-scale vaccine in June of 2020, when we were still in phase 2 clinical trials. We were just making it at risk. So we’re pumping this stuff out. And in one of the factories, a pump goes down. The pump is on the other side of the country on a train. The U.S. military shoots out a fighter jet, it gets out there, stops the train, pulls the train over, puts it on a helicopter, gets it on the jet, zips it off to the factory. We have colonels at every single manufacturing facility, and they get this installed. We’re up and running within 24 hours. It would have taken six to nine months under normal process. But the U.S. military got that done. So that for me was like just — the other two quick, one was banning flavored e-cigarettes. We got 25% reduction in youth use of tobacco in 12 months as a result of that. And then one of the great public health victories that this country had and the world had got ignored because it got concluded in June of 2020: We had the 11th Ebola outbreak. It was in the war zone in the eastern Democratic Republic of the Congo. This was the pandemic I was really, really worried about. One-hundred seventy-four warring groups in the war zone in the eastern Congo. Got [WHO Director-General] Tedros [Adhanom Ghebreyesus] and [then-Director of the National Institute of Allergy and Infectious Diseases Anthony] Fauci and [then-CDC Director Robert] Redfield, and we went over and we went on the ground and we got that. And by June of 2020, that one got out, which was a miracle of global public health. I’m with Kathleen on that one; I think global public health is a key instrument of American power projection humanity around the world. Sorry to go so long.

Rovner: It’s OK. Your turn.

Sebelius: I think proudest is the ability to participate in the Affordable Care Act and push that over the finish line. And for me, it was a really personal journey. My father was in Congress and was one of the votes for Medicare and Medicaid to be passed, so that chunk of the puzzle. I was the insurance commissioner in Kansas when the Republican governor asked me to do the implementation of the Children’s Health Insurance Program. So I helped with that piece. I was on President [Bill] Clinton’s patient protection commission and ended up with a lot of that package in the Affordable Care Act. And then finally to work for and support and watch a president who basically said when he announced for president, “This is my priority in my first term: I want to pass a major health care bill.” And a lot of people had made that pledge. But 15 months later, there was a bill on his desk and he signed it, and we got to implement it. So that was thrilling. Yeah. And, I should tell you, then-Congressman Becerra was one of the wingmen in the House who I worked with carefully, who — there was no better vote counter than Nancy Pelosi, but by her side was this guy, part of her delegation, named Xavier Becerra, who was whipping the votes into place. So he played a key role in making sure that crossed the finish line.

Becerra: So I’m still here, so you’re going to have to —

Rovner: You can change your answer later.

Becerra: I need a bit of grace here, because I’m going to start with Warp Speed, because I bet no one here knows there’s no longer a Operation Warp Speed. It’s now called H-CORE. And the reason I’m very proud of that is because you don’t know that it’s now H-CORE. And what makes it such a good thing is that the Department of Defense no longer has any role in the protection of the American people from covid. It’s all done in-house at HHS. Everything used to be done essentially under the auspices of the Department of Defense, because they are just the folks that can get things done in 24 hours. We do that now, and it’s the operations that were begun a while back. Kathleen had them, Alex had them. Our ASPR, that’s our Preparedness and Response team, they’re doing phenomenal work, but you don’t know it, and you don’t know that H-CORE took to flight in the first year of the Biden administration. By December of 2021, Department of Defense had transferred over all those responsibilities to us, and we’ve been doing it since. But if you ask me what am I most proud of, it’s, I mean, there are more Americans today than ever in the history of this country who have the ability to pay for their own health care because they have health insurance, more than 300 million. Part of that is Obamacare; a record number, 16 and a half million Americans, get their insurance through the marketplaces, and we haven’t stopped yet. There are close to 700 million shots of covid vaccine that have gone into the arms of Americans. That’s never been done in the history of this country. Some of you are probably familiar with three digits, 988, at a time when Americans are … [applause] … 9 in 10 Americans would tell you that America is experiencing a mental health crisis, especially with our youth. And Congress got wise and said, instead of having in different parts of the country, based on region, you could call a phone number for a suicide lifeline, if you didn’t know the 10-digit number or what part of the country you were in, you were out of luck — today, all you have to do is dial 988. But as I said before, federal government doesn’t run mental health. It’s all done by the states. But President Biden is very committed to mental health. His budgets have surpassed any type of investments that have been called for by any president in history for mental health. And he was very committed to 988 to make sure it launched right. And so we have, by exponential numbers, put money into 988 to make sure every state was ready to have it launch. And so by July of 2022, we launched 988, and it is working so well that people are actually calling — actually, not just calling. We now have a text feature and a chat feature because surprise, surprise, young people prefer not to call; they actually prefer to text. And we have increased the number of Americans who are reaching out by over 2 million, which is great, but it’s also not great because it shows you how much Americans are hurting. So there’s so many things I can tell you that I feel very good about that we’re doing. We’re not done. We’re moving beyond on tobacco where Alex left. We’re now moving to ban menthol in cigarettes. Menthol cigarettes are the most popular brand of cigarettes in America. They hook you because of the menthol, and we’re moving to extract menthol. We’re moving to ban flavored cigars and cigarillos. And we may be on course to try to see if we can move to extract as much nicotine out of tobacco as possible before it becomes a product on the market for folks to smoke. So we’re doing a whole lot of things there. And obviously on vaping, e-cigarettes as well — and Dr. Califf could mention that. But I’ll say the thing I’m probably most proud of is that, out of all the government agencies in America, federal government agencies, HHS ranks No. 2 as the best place to work. And I will tell you we’re No. 2, because if we had the capacity to tell our workforce, we will fly you to the moon and back the way NASA does, we’d be No. 1. So that’s what I think I’m most proud of, is that people, as hard as we work them, still say, “Come work at HHS.”

Rovner: So all of you have mentioned these things that were really hard to do because of politics. And you’ve all talked about how some of these decisions, when they get to you, have been baked by your staff and, you know, they vetted it with every side. But I think the public feels like politics determine everything. And I think you all would like to think that policy is what helps determine most things. So, what’s the balance? How much does politics determine what gets done, and how much is it just the idea that this would be the right policy for the American public?

Azar: Mike Leavitt, who was the secretary when I was deputy secretary, he had a phrase, and I’ll probably mangle it, but it was essentially, “Facts for science, and politics for policy.” And it’s important to remember this distinction. So, facts are facts. You gather data. We are especially a data-generating agency. But on top of that are policy overlays. And there are choices that are made about how do you use those facts? What do those facts mean? What are the implications? The United States Constitution vests under Article 2 in the president of the United States to make those choices and, as his delegee, the secretary and the other appointed leaders of the department. So there’s often this notion of politicizing science, but it’s, are there facts? Facts are facts. You generate facts. But what are the implications for policymaking? And I don’t think there’s anything illegitimate — I think is completely appropriate, whether a Democratic or Republican president — that you look and you consider all kinds of factors. Because for instance, for me, I’m going to look at things very much from a public health lens as I assess things. The secretary of the treasury, the secretary of commerce, may bring a completely and important different perspective to the table that I don’t bring. And it’s completely legitimate that that gets factored on top of whatever I or other agencies bring in as fact. So I think it takes some nuance and that we often, frankly, in public discourse don’t catch nuance. Interesting. We don’t do nuance well.

Rovner: We don’t do nuance.

Sebelius: Well, I would agree with the description of the facts versus the policy. And policy does often have political flavors. I was fortunate to work for a president who said, meant, and said it over and over and over again that he would follow the science. And he did. And I had interesting political debates with people around him, on his team, about what should be done, “rewrite the guidance on this,” “do that,” “this is going to upset this group of people.” And he was very resilient and very consistent, saying, “What does the science say? What do the scientists say? That’s where we’re going,” on those areas which were really defined as giving advice to the American public on health issues, doing a variety of things. I mean, he was totally focused on listening to the science. The politics came in, as I think Secretary Azar said well, in some decisions that were brought to him, which really involved often battles between Cabinet agencies, and both were very legitimate. Again, we had pretty ferocious battles on food labeling and calorie counts and how much sodium would, should manufacturers be allowed to put in all of our manufactured goods. I’m sure many of you are aware, but, you know, American sodium levels are just skyrocketing. And it doesn’t matter what kind of salt you use at your table; it’s already baked into every loaf of bread, every pat of butter, every can of soup. And a lot of European countries have done a great job just lowering that. So the goods that are manufactured that you pick up in an EU country — Kellogg’s Corn Flakes has a third of the sodium that the Kellogg’s Corn Flakes that you get in Aspen does, just because that was a choice that those governments made. That’s a way to keep people healthy. But we would come at that through a public health perspective and argue strenuously for various kinds of limits. The Department of Agriculture, promoting farm products, supporting goods it exports, you know, not wanting to rile people up, would come in very strongly opposing a lot of those public health measures. And the president would make that call. Now, is that politics? Is it policy? Is it, you know, listening to a different lens? But he made the call and some of those battles we would win and some we would lose. But again, it’s a very legitimate role for the president to make. He’s getting input from leaders who see things through a different lens, and then he’s the ultimate decider and he would make the decision.

Becerra: So um, I’ve done politics and policy much longer than I’ve done the secretary role. And I will tell you that there is a big difference. We do do some policy, but for the most part we execute. The policy has been given to us by Congress, and to some degree the White House will help shape that policy. We have some role in policymaking because we put out guidances, and the guidance may look like it’s political or policy-driven, or we decide how much sodium might be allowed in a particular product and so forth. But for the most part, we’re executing on a policy that’s been dictated to the agencies by Congress. And I love that, because when I became AG in California, it really hit you how important it is to be able to marshal facts. And in HHS, it’s not just facts; it’s scientific facts. It is such a treat, as an attorney, to get to rely on scientific facts to push things like masking policy in the face of some hostility that went throughout the country to the point that our CDC director had to have security detail because she was getting death threats for having policies that would urge society to have masking policies for adults, for children. We do rely principally on science and the facts at HHS. Maybe folks don’t believe it, but I can put those on the table for you to take a look at. And perhaps the best example I can give you, and I don’t know if I’ll have time to connect the dots for you, because it’s a little esoteric: Title 42, which many of you got to hear about all the time in the news. Title 42 was a policy that was put in place under the Trump administration when we were in the height of the covid pandemic. We didn’t know what was causing covid, so we were trying to make sure that we protected ourselves and our borders. And so therefore, for public health reasons, we sort of closed our borders to the degree that we could, except for those who proved that they had gone through steps and so forth to be able to come in. Title 42 was used under the Trump administration, under the Biden administration to stop people from coming through our southern border. And there reached a point where, as things got better, our team said Title 42, which is health-based — it’s to stop the spread of contagion — was no longer the appropriate tool to use at the border, because we were letting people in the northern border, by plane, and all the rest. You just had to go through protocols. And so they were saying for health care reasons you go through protocols. But Title 42 is probably not the blanket way to deal with this issue, because it’s no longer simply a health care issue. We pushed really hard on that within the administration to the point where, finally, the administration said, “We’re pulling down Title 42.” Then the politics and the policy came in, from Congress saying, “Oh, how dare you take down Title 42? How dare you do that and let the flood of people come into this country?” Well, look, if you want to deal with people coming into the country, whatever way, then deal with our country’s borders through our immigration laws, not through our health care laws. Don’t try to make health care experts be the reason why you’re stopping someone from coming into this country. Stop hiding behind their skirt. And that’s where we went. And the administration took that policy as well. They took the policy. We then got sued and a court said, “No, you will not take down Title 42.” Ultimately, we think we were going to prevail in court, but ultimately, because we pulled down the public health emergency, things got better under covid, we no longer needed Title 42. But just again, to be clear, the women and men at HHS, we execute; we use the facts and the science. We don’t do politics.

Rovner: So we’ve been very serious.

Becerra: Not everybody believed me on that one.

Rovner: I know, I know. We’ve been very serious here for 50-some minutes. I want to go down the line. What’s the most fun thing you got to do as secretary or the coolest thing that you got to do as secretary?

Azar: Probably for me, it was the trip to the Congo, you know, being in the DRC, going to Uganda, going to Rwanda, flying on MONUSCO [United Nations Organization Stabilization Mission in the Democratic Republic of the Congo] U.N. peacekeeping forces; there was a Russian gunboat taking Tedros and Fauci and Redfield and me there into this war zone. I mean, it’s a once-in-a-lifetime — it’s sort of crazy — but once-in-a-lifetime thing that had impact.

Rovner: I don’t know that most people would call that fun.

Azar: I mean, it’ll be one of those great memories for life. Yeah. Yeah.

Sebelius: There were certainly some great trips and memorable experiences around health results in various parts of the world. Some martinis on the presidential balcony and looking at the Washington Monument — that’s pretty cool at night. But my, I think, personally kind of fun thing. I raised my children on “Sesame Street,” and they loved “Sesame Street” and the characters, and that was sort of part of the family routine. And so I got to go to “Sesame Street” and make a public service commercial with Elmo. I got to see Oscar’s garbage can. I met Snuffleupagus. But the Elmo commercial was to teach kids how to sneeze because, again, we were trying to spread good health habits. And so the script said — I mean, Elmo is right here and I’m here — and the script said, “OK, Elmo, we need to practice how to sneeze. So put your arm up and bend your elbow and sneeze into your arm.” And the puppet answered, “Elmo has no elbow.” That wasn’t part of the script. It was like, really? “And if Elmo does that, it will go like this: Achoo!” OK, so we flipped the script and Elmo taught me to sneeze. But that was a very memorable day to finally be on “Sesame Street.” It was very cool.

Rovner: OK, beat that.

Becerra: My team has not yet scheduled me to go on “Sesame Street,” so it’s going to be tough.

Sebelius: But just remember, Elmo has no elbows, if you get to go.

Becerra: I think probably what I will think of most is that I had had a chance to be in the White House and meet with the president in the Oval Office and the rest as a of member of Congress and so forth. When I went in, and it was because things were kind of dire with the kids at the border, and I knew I was going to get a whiplash after the meeting — it wasn’t fun at the time, but walking out, you know, it’s the kind of thing you think of, you know, “West Wing” kind of thing. You actually got the — president sat at the table, I was the guy that sat across from him. Everybody else was to the sides. You know, for a kid who was the first in his family to go to college, Dad didn’t get past the sixth grade, Mom didn’t come here till she was 18, when she came from Guadalajara, Jalisco, Mexico. It was pretty cool.

Rovner: So I could go on all night, but I think we’re not supposed to. So I want to ask you all one last question, which is, regardless of party affiliation, what is one piece of advice you would give to a successor as HHS secretary? Why don’t you start?

Becerra: Gosh, don’t start with me because I’m still there, so —

Rovner: All right.

Azar: I’m going to plagiarize and I’m going to give you the advice I wish Donna Shalala had given me before I took the job. But I would give it to any successor, which: She told me, “Do not take the job unless you have authority over personnel. Refuse to take the job unless you have control over who’s working, because people is policy and you have to be able to control the ethics, the tone, the culture of the organization. And people are that, and you need to have that authority.” And ever really since the Reagan administration, the Office of Presidential Personnel has just been this vortex of power that controls all political appointees at Cabinet departments. And I think if the president really wants you, you need to strike a deal that says, at a minimum, I’ve got veto or firing rights.

Sebelius: I think my advice would be the advice you give to a lot of employees who work in the private sector or public sector is, Make sure you’re aligned with the mission of the CEO, so in this case the president. I mean, don’t take the job because it’s cool and you’ll be a Cabinet member, because then it will be miserable. And with HHS, recognize the incredible assets across this agency. It is the most dazzling workforce I’ve ever had an opportunity to be with — the brightest people of all shapes, sizes, backgrounds, who taught me so much every day — and just cherish and relish your opportunity to be there, even for a short period of time. It’s miraculous.

Becerra: So I’d agree with Alex: Assemble your team. And it really is, because Kathleen mentioned it, it’s a very small group that actually you get to bring in, or even the administration gets to bring in, because most of the folks are civil service, so it’s only a fraction of the people that are going to be new. But your inner circle, the team that’s going to sort of be there and guide you and tell you what’s truth, they’ve got to be your team, because someone’s got to have your back. But I’d also say, know your reach, because as Kathleen said, this is not the Azar administration or the Sebelius administration, the Becerra administration. It’s the administration of the guy who got elected. And at the end of the day, the president gets to make the call. So as much as you may want to do something, you’ve got to know your reach.

Rovner: Well, I want to thank you all. I hope the audience had half as much fun as I did doing this. Let’s do it again next year. Thank you, all. OK, that’s our show for this week. As always, if you enjoy the podcast, you can subscribe wherever you get your podcasts. We’d appreciate it if you left a review; that helps other people find us, too. Special thanks, as always, and particularly this week, to our producer, Francis Ying. Also as always, you can email us your comments or questions. We’re at whatthehealth@kff.org. Or you can tweet me. I’m @jrovner. We’ll be back in your feed from Washington next week. Until then, be healthy.

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