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Julie Rovner
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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.

Supporters of abortion rights again scored big at the polls in several states’ off-year elections Nov. 7, including in some Republican-dominated states like Ohio and Kentucky. The biggest prize came in Ohio, where voters approved a ballot measure writing the right to an abortion into the state constitution, despite strong opposition from the governor and other top elected state officials.

Meanwhile, the Senate approved the nomination of Monica Bertagnolli to become the new director of the National Institutes of Health by a bipartisan 62-36 vote. Bertagnolli — previously director of the National Cancer Institute, a large NIH component — had seen her nomination held up for weeks by Sen. Bernie Sanders (I-Vt.) over a mostly unrelated fight with the Biden administration about prescription drug prices.

This week’s panelists are Julie Rovner of KFF Health News, Tami Luhby of CNN, Alice Miranda Ollstein of Politico, and Sandhya Raman of CQ Roll.

Panelists

Tami Luhby
CNN

@Luhby

Read Tami's stories

Alice Miranda Ollstein
Politico

@AliceOllstein

Read Alice's stories

Sandhya Raman
CQ Roll Call

@SandhyaWrites

Read Sandhya's stories

Among the takeaways from this week’s episode:

• Election night 2023 was a very good night for abortion rights supporters generally and, specifically, in Ohio, Kentucky, Virginia, Pennsylvania, and New Jersey. Republican governors and state leaders invested significant political capital to defeat abortion rights ballot questions and candidates, and lost. Some anti-abortion leaders’ embrace of a 15-week abortion ban as a potential compromise didn’t seem to help their cause.
• Abortion rights supporters’ winning streak raises a broader point about ballot initiatives. State legislatures in some red-leaning states have not only enacted abortion restrictions but also fought off Democratic-backed issues like Medicaid expansion only to have the state’s voters reverse them through ballot questions. As a result, conservative leaders are pushing states to make it harder to get referendums on state ballots.
• On Capitol Hill, lawmakers are once again facing a potential government shutdown Nov. 17, with the expiration of the last “continuing resolution” to keep government spending going. But House Republicans are not making much progress on passing individual spending bills, as several measures have been pulled from the House floor because they lacked the votes to pass.
• The Federal Trade Commission this week announced it is challenging more than 100 patents on brand-name medicines. Although mind-numbingly complex, the action, which could open the door to more generic options for some commonly used medicines such as asthma inhalers, could lead to lowering drug costs.
• “This Week in Medical Misinformation” highlights a study from the Ohio State University that found much of the information available to gynecologic cancer patients on TikTok is inaccurate or of little value.

Also this week, Rovner interviews KFF Health News’s Julie Appleby, who reported and wrote the latest “Bill of the Month” feature, about a woman who got billed for what should have been a no-cost physical exam. If you have an outrageous or baffling medical bill you’d like to share with us, you can do that here.

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

Julie Rovner: ProPublica’s “Find Out Why Your Health Insurer Denied Your Claim.”

Alice Miranda Ollstein: Politico’s “Congenital Syphilis Jumped Tenfold Over the Last Decade,” by Alice Miranda Ollstein.

Sandhya Raman: The Texas Tribune’s “Sex Trafficking, Drugs and Assault: Texas Foster Kids and Caseworkers Face Chaos in Rental Houses and Hotels,” by Karen Brooks Harper.

Tami Luhby: ProPublica’s “Big Insurance Met Its Match When It Turned Down a Top Trial Lawyer’s Request for Cancer Treatment,” by T. Christian Miller.

Also mentioned in this week’s episode:

The Journal of Gynecologic Oncology’s “‘More Than a Song and Dance’: Exploration of Patient Perspectives and Educational Quality of Gynecologic Cancer Content on TikTok,” by Molly Morton et al.

Click to open the transcript

Transcript: A Very Good Night for Abortion Rights Backers

[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, Nov. 9, 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: Tami Luhby of CNN.

Tami Luhby: Hello.

Rovner: And Sandhya Raman of CQ Roll Call.

Sandhya Raman: Hello, everyone.

Rovner: Later in this episode, we’ll have my interview with my colleague Julie Appleby, who wrote the latest KFF Health News-NPR “Bill of the Month.” This month’s patient had a very small bill, but it violated an important principle. But first, this week’s news, and there is more than enough.

Election night 2023 has come and gone, and it was a very good night for abortion rights supporters in Ohio, Kentucky, Virginia, Pennsylvania, and New Jersey. Alice, catch us up here.

Ollstein: Yeah, so this was a really striking example that I think undermined some of the talking points from the anti-abortion side after the 2022 midterms, where they also did worse than they expected. The narrative after that was that they lose when Republican candidates shy away from the abortion issue and don’t forcefully campaign on it. And the results this week sort of undermined that because, in Ohio, the Republican state officials went all in. I was at rallies where they were speaking, they cut ads saying, “Vote no on this abortion rights amendment.” They really put political capital into it.

An even stronger example is in Virginia, where Gov. Glenn Youngkin went all in on promoting his 15-week ban, wanting to flip the state legislature in order to advance that. He put a lot of his own money into this, et cetera. And it just …

Rovner: And the state legislature did flip, just not his way.

Ollstein: Exactly. It flipped the other way. So it really flopped in both places. And so now you have another round of finger-pointing on the right and disagreements over why they lost and what they need to do better. And so you have some people staying on that same narrative from last year saying, “Oh, they need to campaign even harder on restricting abortion.” And then you have other people saying, “Look, this is clearly a loser for us. We need to talk about other topics.”

But what was really striking, you mentioned New Jersey, and that’s sort of a counter-example because there, the Republican candidates tried to sidestep the abortion issue and say, “Look, this is settled. Abortion is legal in our state. This is not something we’re going to touch.” And they still lost. So it’s like, they lose on abortion when they campaign hard on it, they lose on abortion when they don’t campaign hard on it. And you have people arguing over what sort of magic words to use to connect with voters, but it really seems that it’s not really about the words; it’s about the policy itself.

Rovner: I want to dig a little harder into the whole 15-week-ban thing, and in Ohio it was just a straight up or down, are we going to enshrine abortion rights in the state constitution? And voters said yes, which did surprise a lot of people in a red state, although it’s, what, the fifth red state to do this?

But in Virginia, it was a little more subtle. The governor was trying to push a 15-week and they were calling it a limit, not a ban. And that’s apparently been the talking point for national Republicans, too, on federal, that this could be a compromise to have only a 15-week limit. Not working so well, right?

Ollstein: That’s right. I mean, that goes to what I was saying about you can sort of rebrand all you want. There’s been talk about rebranding “ban” to “limit.” There’s been talking about rebranding the term “pro-life,” but, ultimately, because of the events of the last several years, people associate Republicans with wanting to ban abortion. And that’s true whether it’s a total ban or a 15-week ban. It’s true whether you call it a ban or a limit or a restriction or whatever. And, like I said, it’s true when Republicans talk about it and when they don’t talk about it.

Most people, the country is still quite divided on this, but most people, a majority, enough to sway these elections, are saying that they would rather not have these kinds of imposed restrictions. And that’s really been galvanized by the overturning of Roe [v. Wade]. A lot of people were bringing up what Justice [Samuel] Alito wrote in his opinion overturning Roe saying, “Women are not without political power.” And people are saying, “Hey, look, that’s quite true. Thank you, Justice Alito.”

Rovner: So the other big political event obviously this week was the third Republican presidential candidate debate, this time with only five candidates on the stage, none of them named Trump.

As popular as abortion is turning out to be as a voting issue, President [Joe] Biden is not popular. In fact, I’ve seen many, many of these charts that showed that support for abortion rights is running 10 or 15 points better than President Biden. So these Republicans, who are hoping that something happens to Donald Trump, did finally talk about abortion, and most of them still seem to be in the “I’m proudly pro-life” stage. I mean, is there any way to walk this tightrope for them?

Ollstein: I think what was fascinating about the debate was you’re not really seeing a shift in reaction to this electoral shellacking that they got. The candidates who were for national bans and restrictions are still for national bans and restrictions. The candidates who want the states to decide say, “I want the states to decide.”

And it’s interesting that Nikki Haley is getting a lot of praise for her position, which she came out and said, “Yes, I’ll sign whatever Congress is able to pass that restricts abortion, but we should be upfront with voters and say that it is highly unlikely that anything will be able to pass the Senate.” It’s interesting that that seems to be appealing to people because …

Rovner: It’s true.

Ollstein: It is true, but it pisses off multiple groups. Democrats are zeroing in and hammering her on saying, “I will sign whatever ban Congress is able to pass” as evidence that she is still a threat to abortion access. Meanwhile, folks on the right, conservatives, anti-abortion people, they want her to champion a ban. They don’t want her to sort of downplay its likelihood. They want her to say, “Look, this might be very hard to get done, but I will be your champion for it.” And so she’s sort of not appealing to the left or the right with that stance, but it seems like there are some she is appealing to.

Rovner: Yeah. If anybody has ever succeeded in straddling the middle, she’s certainly making the effort.

I want to go back to the states for a minute. I think it was in your story that I read that one of the anti-abortion groups was talking about “the tyranny of the majority,” which took me a minute to think about, trying to get some of these states that could still put abortion constitutional amendments on their ballots, trying to get that stopped. Is that basically the next battleground we’re going to see?

Ollstein: Oh, yes. And it’s already started, but what really struck me is how open they’re being about it. So over the past year, a lot of states have quietly moved with legislation and through other means to try to make it harder or impossible to put an up-or-down question about abortion before voters, raising the threshold, raising the signature limit, mandating that people get signatures from this many counties and this and that and the other thing, making it more difficult. Mississippi is trying to make a carve-out so you can do a ballot measure on anything but abortion. We’ll see where that goes.

And so this has been going on, but the statements after Tuesday’s election from anti-abortion groups openly saying, “This is the tyranny of the majority and the human rights of babies should not be subject to a popular vote,” just completely going down this anti-Democratic road and being explicit about it. So I think it’s definitely something to keep an eye on.

Luhby: And this started with expanding Medicaid also because there’ve been multiple states now that have expanded Medicaid through ballot measures, multiple red states, and several states, including states that eventually passed that, have been trying to limit the ability of voters to pass it.

Rovner: Yes, we’ve got all these sort of Republican-dominated legislatures, but when the voters actually go to these single topics, they don’t necessarily agree with the legislators that they have elected.

Raman: Last year, one of the ones that abortion rights supporters had really championed was Michigan as the first citizen-led constitutional amendment to codify abortion rights. And then this week, we had a lawsuit brought against to invalidate that passing last year, and it’s unclear how that’ll go and play out in the courts, but it really seems like they’ve been slowly ramping up the strategies to see what sticks to be able to claw back some of this stuff.

Rovner: They, the anti-abortion force.

Raman: Yes, yes. And I was also going to say that when we’re talking about Mississippi, that is probably one of the one places where I think abortion opponents really had their win in that we had Lynn Fitch, their attorney general, who was the one that litigated the Dobbs decision that is making this such a big topic now, who pretty handily won reelection. And her opponent was pretty vocally an abortion rights supporter, Greta Kemp Martin. So that is one …

Rovner: The Republican governor also won in Mississippi.

Raman: Yes, yeah.

Rovner: It kind of prevented it from being a clean sweep for Democrats.

All right, well, I want to go back to the debate for a minute because they also talked mostly about foreign policy, but they did talk about entitlement reform, which had not come up, I don’t think, before. Talk about trying to straddle the middle. Here, Donald Trump has come out and vowed not to cut Social Security and Medicare, and yet we know that both programs need to have some kind of change or else they’re going to run out of money.

So how are these candidates trying to separate themselves on this thorny problem, Tami? They all seemed to say as much as they could without really saying anything.

Luhby: Exactly. I’m not sure there’s a lot of separation there, other than just saying, “We’ll look at it and we’ll see it.” But I mean, to some extent they’re right. The moderators were really trying to press them on what’s the age? What are you going to raise the age to? It’s now, the full retirement age is being ramped up to 67. The early retirement age has stayed at 62, and the moderators were like … they wanted a number.

And the candidates were sort of right in saying that they can’t just give a number because there are multiple things that can be done. I mean, a little bit more than I think what Nikki Haley said, or one of them had said it was three things that can be done. There’s more levers than that, but the age will ultimately depend on what they do with the formula, what they do with COLA, what they do with taxes. So there’s multiple things that can be done.

But what is definitely true is you can’t say that discussions are off the table because, according to the latest Trustees Report, Social Security will not be able to pay full benefits after 2034. At that time, it’ll only be able to pay about 80%. Medicare Part A can only pay full-schedule benefits till 2031. After that, it’ll only be able to cover 89%. And the new [House] speaker, Mike Johnson, has called for a debt commission and he says he wants to address Medicare and Social Security’s insolvency as part of the debt commission, which has really scared a lot of Social Security and Medicare advocates because of his Republican Study Committee background.

Rovner: Of actually wanting to cut Social Security and Medicare.

Luhby: Right. And do a lot of the things, although not raise taxes, but do a lot of things that the advocates don’t like. But yeah, there wasn’t really a lot to take away from the debate on Social Security and Medicare, other than them saying they wanted to do something, which they need to do.

Rovner: I was amused, though, that Nikki Haley said she wanted to expand Medicare Advantage without pointing out that Medicare … as if that was a way to save money because, as we’ve talked about many, many, many times, Medicare Advantage actually costs more than traditional Medicare at the moment. That’s one of the things that’s hastening the demise of Medicare’s trust fund in other places.

While we are on the subject of Washington and spending, we have yet another funding deadline coming up, this one Nov. 17, which is a week from Friday. We’ll obviously talk more about this next week, but Sandhya, how is it looking to keep the lights on?

Raman: I think we could just put a big question mark and that would be evergreen, but we’re still not close to a consensus, either short-term or long-term. So ideally, in the next several days, we’re going to get some sort of short-term selection, solution, and that it would get the votes. And those are big maybes.

Speaker Mike Johnson has said that he would come up with kind of a stopgap plan by the weekend, but this is all allegedly, and if that is something that would also be appeasable to the senators. And so a lot of that is still a question mark, but the House is still going ahead on trying to get HHS funding. So they recently released a revised version of their Labor, HHS, and Education bill. It’s still all the same topline spending, but it has additional …

Rovner: Which is lower than was agreed to. Right?

Raman: Yes, yeah.

Rovner: I mean, this bill’s having trouble … because of the magnitude of the cuts that it would make.

Raman: Yeah. They didn’t do any additional cuts to that, but they did add several more social policy riders. So the revised version would prevent funding from going to a hospital that requires abortion training or funding from athletic programs in schools that allow trans children to participate, which is something the House has passed legislation on earlier this year, calls for barring … calling for a public health emergency related to guns, a lot of just social issues that they’ve been messaging on.

So if this were to pass, this is also going to make it even more difficult to come to an agreement with the Senate. So the next thing to watch is that Monday, the House Rules Committee is going to meet and see the path to get it to the floor. And then even there, if it gets past the Rules Committee, it’s a will-or-will-not pass there. Because if you look at some of the other spending bills that have been going through, a lot of them have been getting pulled or not getting votes or getting pulled and repulled and all sorts of things.

Rovner: Pulled from the House floor?

Raman: Yes.

Rovner: Pulled like … they put them on the House floor and they don’t have the votes and they say, “Oops,” so they pull them back.

Raman: Yeah. So it’s all very tenuous. And I think one other interesting thing is that we didn’t have a full committee markup of this bill, which is something that the House has traditionally done and the Senate has not done in a few years. But the Senate did have their full markup. They did have a bipartisan consensus on it. And so we’ve kind of flipped roles, at least for now, in terms of how the regular order of Congress is going.

Rovner: Yeah, that’s right. Again, because the cuts were so big that the HHS bill couldn’t get through the Appropriations Committee.

Raman: Yeah. A lot of this is to be determined in the next few days.

Rovner: And this whole “laddered CR” that the speaker was talking about that nobody seems to quite understand except it would create different deadlines for different programs, that doesn’t seem to be on the table anymore or is it?

Raman: It also further complicates something that when they all have the same deadline, we’re still already struggling to get that done. So changing the dates is going to make it even more complicated to get to that point, but so much has really been in flux that I don’t think that that’s really on the table right now.

Rovner: Maybe he was hoping that having a partial shutdown would not be as disruptive or look as bad as having a full shutdown. I mean, I kept trying to figure out why he would try to do this because it just seemed, as you say, way more complicated.

Raman: If you look at the letter that he sent to other members of the House before he was elected as speaker, he did have a plan of outlining when he intends to get various bills done. And if you look at Labor, HHS, and Education, that one was one of the later ones kind of pegged to getting a deal for fiscal 2024 in April or so as the deadline, versus we’re still in November and the deadline was technically the end of September. There’s so many loose-hanging threads that hopefully they will come together with some sort of short-term solution over the next few days.

Rovner: They will, obviously, we shall see. Well, the House, as we say, is not getting a lot done, but the Senate is sort of.

The National Institutes of Health has a new director, former Cancer Institute director Monica Bertagnolli, whose nomination was approved on a bipartisan vote of 62 to 36 after being held up for months by Democrats who were upset that she wouldn’t, in the words of Senate Health, Education, Labor, and Pensions Committee Chairman Bernie Sanders, “take on Big Pharma enough.”

So when did controlling drug prices become part of the NIH portfolio? That’s not something that I was aware necessarily went together.

Ollstein: I think it was just that her nomination was the one that was up, so you got to sort of dance with the partner you can find. Obviously, other agencies and other official positions would have made more sense and had more direct power over drug prices. But this was the open seat, and so this was the leverage they thought they could use, and whether what they got out of it made it worth it, that’s up for debate. But yeah, it is very unusual to see somebody going against a president with whom they are largely aligned.

So this was eventually cleared, but Bernie Sanders wasn’t the only one. There were some other Democratic senators who were asking for ethics pledges and other things around this nomination, but it did ultimately go through.

Rovner: Yeah, there was a statement from John Fetterman. He said, “I’m not going to vote for her because she’s not going to be tough enough on the drug industry.” It’s like, I’m pretty sure that’s not her job as the head of NIH.

I mean, before people start to complain, I know that there are some levers that NIH can pull in deciding how to do some of their clinical trials. They can have sort of a secondary effect on drug prices, but it’s certainly not …

Ollstein: Not as direct.

Rovner: … their main role in the federal bureaucracy.

Well, meanwhile, there was some actual real stuff on drug prices this week. The Federal Trade Commission, which the last time I checked was in charge of unfair pricing practices, is officially challenging 100 drug industry patent listings charging that the listings are inaccurate. And because those listings help prevent cheaper generics from entering the market, that’s not fair. This is one of those things that’s kind of mind-numbingly complex, but it can have a real impact, right? If some of these patents get disallowed or delisted, I guess, from the Orange Book, the official listing of patents for drugs?

Luhby: If that happens, it does clear the pathway for us to get generics and cheaper drugs that way. So there definitely is that that could lower the prices of some of these, and some of the ones listed are pretty commonly used things that people use on a regular basis like inhalers, that kind of stuff.

Rovner: So if there was a generic, it could have a big impact because a lot of people would end up using it.

Finally, this week the Biden administration — remember the Biden administration? — issued a rule that would crack down on some marketing tactics by Medicare Advantage plans. Meanwhile, the Senate Finance Committee approved a health “extenders” bill that extends programs that would otherwise expire, and it includes, among lots of Medicare and Medicaid odds and ends, a requirement that Medicare Advantage plans keep a more timely list of the providers that are in and out of network, which I think might be the most frustrating thing about most managed-care plans, not just Medicare Advantage.

Both the administration’s proposed rule and the finance bill are smallish, but they represent stuff that keeps these programs up to date. I mean, Tami, there’s some significant stuff here, isn’t there?

Luhby: Yeah. Medicare Advantage is getting more attention because it’s getting larger. I think this is the first year that it’s crossed the 50% threshold and it’s expected to just continue growing as younger baby boomers coming in who are used to employer health insurance want to keep that. And there are a lot of pros and cons about Medicare Advantage for the consumer, and the administration is making sure … or is trying incrementally to make sure that people understand what they’re getting into.

I’ve seen a couple, now that it’s open enrollment time, I’ve seen a couple of the ads, which interestingly do seem to be targeted towards older women, not necessarily baby boomers coming in, but they’re kind of crazy and they can be very misleading. And the administration, in this latest effort, is trying to limit commissions of brokers because there are additional incentives that companies and insurers can provide to brokers beyond just the fees. So they’re trying to rein that in. Previously, they were working on Medicare Advantage marketing, so there’s a lot that they’re trying to do to just make sure that people are aware of what they can do.

This proposed rule would require that these supplemental benefits, which are one of the attractive features of Medicare Advantage, because Medicare doesn’t cover vision, dental, hearing, et cetera, but the administration wants to make sure that people actually know about these benefits and are using them and it’s not just a sweetener that the insurers are dangling at open enrollment time.

Rovner: To get people to sign up.

Luhby: They’re incremental, but they’re trying to make it a little more transparent.

Rovner: Yeah, I think it’s just important to remember that the incessant marketing, and boy, it is incessant, suggests that these companies are making a lot of money on Medicare Advantage.

Luhby: Oh, yeah.

Rovner: They would not be spending all of this money to advertise if this were not a very profitable line of business for them.

Luhby: And a growing line, of course, because more and more people are going to be eligible.

Rovner: Yeah. So we will watch that space too.

Well, before we get to our “Bill of the Month” interview, it’s time for “This Week in Medical Misinformation.” I chose this week a study from the Ohio State University of health advice related to gynecologic cancers that was most popular on TikTok. The study found at least 73% of content was inaccurate and of poor educational quality and that it furthered already existing racial disparities in cancer care. We will link to the study in the notes, but at least we know that there are people trying to quantify the amount of misinformation that’s out there, if not figure out what to do about it.

OK. That is this week’s news. Now we will play my interview with my colleague Julie Appleby, then we will come back with our extra credits.

I am pleased to welcome back to the podcast my colleague Julie Appleby, who reported and wrote the latest KFF Health News-NPR “Bill of the Month” installment. Julie, thanks for joining us again.

Julie Appleby: Thanks for having me.

Rovner: So this month’s patient had a very small bill compared to most of them, but likely the kind that affects millions of patients. Tell us who she is and what brought her to our attention.

Appleby: Yes, exactly. Her name is Christine Rogers and she lives in Wake Forest, North Carolina. And like a lot of us, she went in for an exam with her doctor, sort of an annual-type exam. And while she was in the waiting room, they handed her a screening form for depression and for other mental health concerns, and she filled it out, and then went and saw her doctor.

During the discussion with her doctor, her doctor asked her about depression and her general mood, and Rogers had lost her mother that year, and so she told her doctor, “Yeah, it’s been a horrible year. I lost my mom.” So they had some discussion about that, and Rogers estimates it was about a five-minute discussion about depression, and then the visit wrapped up. Her doctor didn’t recommend any treatment or refer her for counseling or anything like that. It was just a discussion.

So Rogers was a little surprised when, later, she got a bill for that visit because, as you’ll remember, under the Affordable Care Act, preventive services, including depression screening, is supposed to be covered without a copay or a deductible. So she was a little surprised, and yeah, it wasn’t much. It was $67. That was her share of the visit. So she was just curious, why is this happening and what’s going on?

Rovner: So she calls the doctor’s office and said, “This is supposed to be free.” And what did they say?

Appleby: Right. She said that, and they explained to her that she had a discussion above and beyond just preventive, and so she was billed for a separate visit, basically, a 20- to 29-minute visit, specifically for the discussion treatment and that’s why she owed the money. So really, it wasn’t part of the wellness exam. It was part of a separate exam even though she was in the same office at the same time.

Rovner: But when I go for an annual physical, they give you a questionnaire. It’s not just about mental health. It’s about a lot of things, and it includes mental health. If you had a discussion about any of them, would that be billed separately? Could it be billed separately?

Appleby: Well, here’s where the nuance kicks in. So, as I said, under the Affordable Care Act, there’s a lot of preventive services that are covered without a copay. Things like certain cancer tests, certain vaccines, and yes, depression screening, but if you bring up something else during your wellness visit, they can indeed bill you for that.

So let’s say, for example, you mentioned to your doctor, “My shoulder’s really been killing me ever since I started playing pickleball,” and so then the doctor did some more exam of your shoulder. That could potentially be billed separately because it’s not part of the wellness visit. And in this case, initially, the doctor’s office coded it as two separate visits because it went above and beyond just a quick discussion of the questionnaire or just filling out the questionnaire.

Rovner: She goes to the doctor, the doctor says, “No, this is correct.” Then what happens?

Appleby: So then after we started calling around, we did talk to the insurer, Cigna, and the doctor’s practice, which is owned by WakeMed Physician Practices. And initially, they said the bill was coded correctly from the doctor’s office because it was a separate discussion. But after Cigna got involved, eventually after we talked to them, Rogers got a new explanation of benefits that zeroed out the visit. And a Cigna spokesperson said that the wellness visit was initially billed incorrectly with these two separate visit codes, basically, and that they had fixed that.

And so Christine Rogers did get her $67 back. But I think this does illustrate the issue of not all preventive services are covered without a copay if it goes beyond what they consider preventive. And that can be challenging. And many people that I spoke with for this article said Rogers did the exact right thing. She talked to her doctor honestly, and everybody emphasized that people should not avoid discussing health concerns with their doctors at a wellness visit for fear of getting a bill because, really, you’re there to get health care.

So what they do suggest is if after one of these wellness visits, if you do get a bill, you should ask about it, ask for an explanation of benefits, ask for an itemized billing statement. And if something seems off, question that. But keep in mind that some things, if they go beyond the preventive care guidelines, that you might get a separate bill even during what you might otherwise think would be a no-cost wellness visit.

Rovner: And if your shoulder’s bothering you after you take up pickleball, you probably should let a doctor look at it.

Appleby: You probably should.

Rovner: And I know that this was a fairly small bill, certainly in the scope of the bills that we usually look at, but this happened a lot with colonoscopies, that people would go in for the preventive colonoscopy that was paid for, but then if they found a polyp and took it off, suddenly they’d be charged for the surgery having the polyp removed. And that’s a lot more than $67.

Appleby: Right. And that has since been fixed. There’s been some clarification issued by CMS and others that that is not supposed to happen. So again, you go in for a screening colonoscopy, and that is supposed to be covered whether they find a polyp or not.

Now, if you go in because you have symptoms and there’s some other kind of problem, that’s where it can get more complicated. And we’ve seen that with other screenings too, such as mammograms. A screening mammogram is covered under the preventive services guidelines, but if you find a lump, there may be some questions to whether it’s gone from a screening mammogram to a diagnostic mammogram, which is covered under different guidelines.

Rovner: Bottom line, you should always look at your bill even if it’s for something small.

Appleby: Yes, that’s always a good rule of thumb. And if you have any questions, certainly contact your physician’s office and start there and ask about that. And you may also want to ask your insurer.

Rovner: Great. Julie Appleby, thanks for joining us.

OK, we’re back. 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.

Sandhya, why don’t you go first this week?

Raman: So my extra credit is called “Sex Trafficking, Drugs and Assault: Texas Foster Kids and Caseworkers Face Chaos in Rental Houses and Hotels,” and it’s by Karen Brooks Harper at the Texas Tribune.

Her story examines a report that looks at the Texas Department of Family and Protective Services that was done by some court-appointed watchdogs to report about some of the efforts to improve the foster care system. And they found a lot of overworked case workers that didn’t have training and no round-the-clock security. And it’s just a really important story about what’s trying to be done and what needs to be done for caring for some very vulnerable kids. Many of them, as the title suggests, are sex trafficking victims or from psychiatric facilities, and it’s just an unsafe environment for both the workers and the kids. So check that out.

Rovner: Alice?

Ollstein: So I picked a piece I did this week that sort of fell through the cracks in the news, but people should really be paying attention to this. It was a pretty scary report out of the Centers for Disease Control [and Prevention] about congenital syphilis. This is syphilis in pregnant people that is passed to infants in birth. And when not treated, it can be really deadly. It can cause stillbirths, it can cause birth defects, it can cause all kinds of issues, infertility in the parent, et cetera. And this has jumped tenfold over the last decade. It is killing hundreds of infants.

This is really scary. They sound that … so many people are just getting no prenatal care at all. And even when they are, they’re not getting tested for syphilis. And even when they’re getting tested and even when it’s detected, they’re not getting the treatment. And so people are really falling through the cracks. And, hopefully, this gets some more attention on this, but it’s also coming at a time when Congress is debating cutting these kinds of sexual health programs and services even more, not expanding them, which is what the report says is needed.

Rovner: That’s right. These are some of the things that would be cut in the proposed HHS spending bill that’s still kicking around in the House. Tami?

Luhby: So I looked at a ProPublica story. ProPublica has done several excellent deep dives into health insurers’ rejections of policyholders’ claims. These are very hard stories to do. They really are good at pulling back the curtain on these decisions that most people know very little about. So the latest story is by T. Christian Miller. It’s titled, “Big Insurance Met Its Match When It Turned Down a Top Trial Lawyer’s Request for Cancer Treatment.” It’s a long story, but it’s a piece about Robert Salim, I think, a litigator who was diagnosed with stage 4 throat cancer in 2018. His doctor recommended proton therapy, which specifically would minimize the damage to the surrounding tissues. Some of the side effects could be loss of hearing, damage to the sense of taste and smell, brain issues, memory loss. But the insurer, Blue Cross Blue Shield of Louisiana, refused to pay for it, saying it was not medically necessary. So Salim was able to pay the nearly $100,000 cost of treatment because he didn’t want to do these additional therapies first, which could leave him with hearing loss and all these other problems.

Rovner: Yeah, because he’s a rich trial lawyer, so he could afford it.

Luhby: Right, so he could afford it and he didn’t want to waste the time. But he also decided to battle Blue Cross and Blue Shield because, as he put it, he’s paid them $100,000 in premiums for him and for his employees at his law firm. And he’s just like, “Now that I need it, they’re not there.” So the story goes into the lengths that Salim had to go to, including his doctor sending in a 225-page request to Blue Cross to do an independent medical review. But what was interesting was that multiple doctors that were hired by the insurer to battle Salim’s appeal kept referring to guidelines that are created by this company called AIM Specialty Health, which is actually part of Anthem. So Salim, who has now been cancer-free for nearly five years, the appeal didn’t work, so he ended up taking Blue Cross to court and he actually won, but he’s still waiting to get his reimbursement. So read the story. It has a lot of twists and turns and shows that even someone with means and expertise, the battle is still so difficult. How can people who don’t have the resources, both financially and legally to do this … he had to hire a friend of his to take them to court, like a childhood friend or a college friend, because it was such a difficult case to put before the courts. It’s a good story.

Rovner: Yeah, it’s the juicy story of the week.

Luhby: It’s a scary story.

Rovner: Scary and juicy. Well, my story actually builds on Tami’s story. It’s also from ProPublica. It also builds on our “Bill of the Month” project. It is a new tool that can help patients file the paperwork to find out why their insurer denied a claim. As we have pointed out so many times, most people simply don’t bother to argue with their health care providers or insurers because they don’t know how, and it is not easy. They make it difficult on purpose. This tool actually walks you through a key part of the process: how to ask for the information that the insurance company used to deny the claim. It’s super helpful and it’s a good place to go rather than doing the sort of one at a time, “I have this bill, will you look at it, journalist?” Here’s a way where people can at least start to do their own digging. As Tami says, it gets harder, but many people are being denied care that they are, in fact, eligible to. So here’s a way to at least start to try and get that care.

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 our tireless engineer, Francis Ying.

Also, 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. Sandhya?

Raman: @SandhyaWrites.

Rovner: Tami?

Luhby: Well, I’m at @Luhby, but it’s not really worth looking at it.

Rovner: Alice?

Ollstein: @AliceOllstein.

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

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In 2019, emergency medicine physician and historian Luke Messac was working as a medical resident. He had heard about hospitals suing their own patients over unpaid medical bills, so he decided to investigate whether the hospitals where he worked were doing the same.

It turns out they were.

“The care I was delivering to patients was resulting in them showing up in court, or having their wages garnished, or signing up for a payment plan that they would be paying for the better part of a decade,” said Messac.

In this episode of “An Arm and a Leg,” host Dan Weissmann speaks with Messac about his book, “Your Money or Your Life: Debt Collection in American Medicine,” and how people working in health care can try to reform these practices.

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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Click to open the Transcript

Transcript: ‘Your Money or Your Life’: This Doctor Wrote the Book on Medical Debt

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 couple years ago, I got in touch with a guy who’d been posting about this show on Twitter.

Luke Messac: Hi, yeah, my name is Luke Messac.

Dan: Luke is a doctor. He’s an instructor of emergency medicine at Harvard. And he’s a Ph.D. historian.

He told me he was writing a history of something we cover a lot on this show. Medical debt.

Luke Messac: It’s a problem I couldn’t avoid and therefore couldn’t avoid writing about.

Dan: And now that book is out. It’s called Your Money or Your Life. It tells the story of how the collection of medical debt in the US became so aggressive, the real impact it has on patients and – especially important for us – a different way to do things.

This is An Arm and a Leg, a show about why healthcare 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, it’s to take one of the most enraging, terrifying, depressing parts of American life and bring you something entertaining, empowering, and useful.

Dan: Luke Messac says his journey begins with this guy.

Paul Farmer: It’s not intellectually shallow to have hope. That’s a profound thing, you know…

Dan: That’s Paul Farmer – and YES, you may have heard me mention him recently, like when we talked about the writer John Green. Paul Farmer was a doctor who founded an amazing global health organization called Partners in Health.

He’s the subject of a book called Mountains Beyond Mountains, which focuses a lot on his work in Haiti, and which, I’m gonna say again here: When we start a book club on this show, that’s my vote for our first read.

Anyway, Luke started watching Paul Farmer’s videos as a kid. And ended up as

his student.

Luke Messac: I knew I wanted to be in medicine. I knew I wanted to be a doctor. When I first got into Harvard as a 17 year old kid, I, I think YouTube was just starting at that point. I’m going to date myself. And I saw some of his lectures and this was right around the time when Mountains Beyond Mountains came out. And I started to learn more about his work. My father was born in Haiti and I’ve always had a special affinity for the country. And, and so I, I heard about him. I really lucked out. In that one year, he was teaching a freshman seminar, uh, for 12 kids and I, ended up taking this class with him as freshmen and then kind of clung for dear life to, to work with the organization, uh, after that, because we were hooked.

Dan: Yeah, I mean, what an incredible opportunity. And, you know, I’ve only, I only know him right through his kind of public persona and mostly through reading that book, which is now like 20 years old, I think, um but you know, he seems like such an incredibly inspiring person who doesn’t accept half measures.

Luke Messac: Yeah, he, he insisted on a few things, and one of them was that the poor patient shouldn’t get care any less, uh, decent than the care that anyone else would expect, that the care that we deliver at Brigham and Women’s Hospital, where he also worked, should be the standard of care that should be delivered everywhere, including rural Haiti, including rural Rwanda. And he would call that an aspirational goal sometimes, but it’s one that he was extremely serious about and devoted. This guy did not stop working. Uh, you couldn’t keep up with him, but he also made space for students, especially younger students, people who weren’t even in their medical training yet. He made so much time for me. So much time for us. He’d always respond to our emails and text messages.

Dan: So did you, like, apply to MD PhD programs, like, at the same time, like you’re, like, finishing undergrad and you’re like, okay, uh, all right, here’s the, here’s the plan for the next 15 years. Or did, things evolve? Like, how did that work?

Luke Messac: Yeah, essentially. I mean, I’m somewhat loathe to give up a little secret, which is that the MD PhD programs in the United States are paid for by the federal government. At least that still remains the case. And so if you want to get a medical degree in the United States, most of the time you’re going to come out unless you’re independently wealthy with six figures in debt. And I’m not talking low six figures. If you want to get an MD-PhD in the United States, that is still funded by the federal government. So you’re going to graduate with 0 in debt from medical school or graduate school, and you’ll get a stipend on top of that. So it is a long road, but it is one that comes with some benefits and doesn’t leave you tremendously in the hole when you come out feeling like you can’t do anything but try to pay back that debt.

Dan: That is really, really wild. It’s really interesting that it’s, I mean, There’s something very poetic about you entering this program that allows you to, uh, emerge from it without debt, and then using that resource to build an understanding of and campaign against debt.

So, it’s fall 2019 and this is your story. This is how you arrived here. You are yourself basically debt free, and you’ve been following a path. And you note that you had been reading about, medical debt lawsuits.

Luke Messac: Yeah, I’d seen it in ProPublica, Kaiser Family Foundation, um, and in various newspapers across the country. And I had friends in training at Johns Hopkins hospitals, in Baltimore, and I saw them post pictures of their protests against their own hospitals, practice of suing patients, oftentimes their own low paid employees for medical debts they couldn’t afford to pay. Their work was really an inspiration to me to find out if this kind of thing was going on elsewhere. I thought it didn’t. I thought it was very anomalous practice. I didn’t think I’d find too much, uh, in the way of it happening in my neck of the woods, but I was, I was wrong about that.

Dan: So in the book, you tell the story that you went to the courthouse in Providence, Rhode Island, where you were working as a medical resident to look up medical debt lawsuits, And you’re still imagining this as like, well, this is some kind of outlier thing. I’m not going to find it. But you’re like, you’re just a little curious?

Luke Messac: Being a historian is a very solitary and quiet existence. And that is something that you cannot say of the emergency department, neither solitary nor quiet ever. And so I was I had a day off. I wanted to relive my days in the archive. And I wanted to answer this question, and I went to the courthouse. And I asked to be led into the court records. And so basically they let you into this back room, uh, looks like, uh, an office from office space, like the movie, uh, a lot of UV light and white walls. And a very old computer that looks like it came out of the late 1990s, early 2000s, and you pull up the database, also a very clunky looking old database, and you can type in your hospital or type in your business or type in an individual and see if they’ve ever been involved in the court system. And so I did that, I looked up, uh, my hospital system, other hospital systems in the state, and some of the lawsuits were what you’d expect.

Dan: Like medical malpractice suits. And run of the mill employment disputes. But he also saw lawsuits against the hospital’s patients. A lot of lawsuits.

Luke: And when they were filed, oftentimes they would get a response from the defendant, and these responses would show me that some of the defendants were single mothers. Some of the defendants were living on social security disability. Some of the defendants were recent immigrants who had trouble responding in English and so wrote back in their native languages, pleading for leniency. And when they asked for such, they would get some in the form of usually a payment plan. Maybe they would be asked to pay some amount every month for the next five years, six years, seven years to cover the cost of a single visit. And if they signed up for those payment plans, then they would be told that if they missed any payments, that they would be charged double digit interest rates. And if they didn’t respond, as many didn’t, then they would lose the case by default. And oftentimes have their wages garnished, have 25% of their wages taken from them every month. And so these were really punitive measures being taken against really vulnerable patients. The vast majority of lawsuits in the state were filed by the hospitals in which I worked,. And this was really disturbing to me. I always comforted my patients who worried about the cost of their care when they came in and said, oh boy, am I going to be able to afford this? Um, you know, should I have come in at all? And I always tried to comfort them and say, oh, don’t worry about it. Even if you’re uninsured, we have financial assistance. You’ll, you know, we don’t, we don’t go after people. And I was wrong. I was dead wrong about that. And that made me feel, uh, pretty awful.

Dan: In the book, you say you felt shame.

Luke Messac: Yeah, it was a mixture of anger and surprise and shame, because I always knew that our healthcare system was full of injustice, that so many people can’t afford insurance, even those who do, aren’t always able to afford their care, that the distribution of resources runs along steep gradients of inequality. But I didn’t realize that I was such a direct participant in that injustice, that the care I was delivering to patients was resulting in them showing up in court or having their wages garnished or signing up for a payment plan that they would be paying for the better part of a decade. So that was really the source of my shame.

Dan: And what did you do? Like, I know eventually you took lots of actions, but like, what did you do immediately?

Luke Messac: Yeah, I talked to my friends. I talked to some mentors. I talked to my wife, who is also in medicine, but was working elsewhere. And all of us shared the same sense of shock and anger and shame, because none of us wanted to be doing that to our patients. We all kind of shared the same sense of shock but. I didn’t know what to do at first. I didn’t know where to turn.

Dan: At first you tried Twitter, right? Or Facebook or…

Luke Messac: uh, yeah, I did. I just started using Twitter the year before I put out a couple of, you know, impotently angry tweets about it and said, someone’s got to do something about this. This shouldn’t exist. And, uh, didn’t get much of a response. You know, a few friends of mine said, right on. But, you know, it, it wasn’t, it wasn’t making much of a dent.

Dan: So he wrote an op ed. Submitted everywhere he could think of – New York Times, Wall Street Journal, Washington Post, even his hometown paper, the Providence Journal.

Luke Messac: No one was interested. No bites. And then there was a small, uh, lefty blog run by this guy, Steve Alquist, a real muckraking crusader here in Providence. And I sent it to him and he said, this is really interesting. Absolutely., I’ll run it. I didn’t know if it would make any difference whether this blog post on Uprise Rhode Island, uh, uh, you know, would, would cause any waves, but sure enough, the morning it went up, I got a call from my superiors of the hospital saying they definitely wanted to meet. So it had, it had something of its desired effect. Although, uh, I won’t recommend the approach to everybody because it, it, it did imperil my job.

Dan: Because that first meeting was not set up as a friendly chat. The message also said he could face public correction or worse, dot dot dot.

Luke Messac: So I wondered what that or worse could be.

Dan: You met with a top administrator who was like, you’re just wrong buddy, we don’t do that, that never happens, I would know.

Luke Messac: Yeah, they did tell me that they didn’t sue patients, that I was wrong. And to be honest, it raised a couple other questions in my mind, saying… Is this guy just lying to me or does he literally not know? And so when I was able to prove to the folks who I was meeting with that were indeed suing patients, in fact, some of these lawsuits were filed in the last few weeks, they quickly changed course, they severed their relationship with the debt collector who was filing the lawsuits on their behalf and dismissed the remainder of the cases. So that was a, that was a sanguine outcome from that one thing, but it did make me realize a few things. One was that, you know, I’d really only started to understand what on earth was going on and how so many patients were being sued and how it was being done in a way that, uh, most of us who were involved in delivering care and even a lot of the people who were involved in running the hospital didn’t seem to know that this was happening.

Dan: So Luke Messac, the doctor, now knew that hospitals, including his, were suing patients to collect debt. Luke Messac, the historian, wanted to figure out when this practice started and why. That’s after this…

This episode of An Arm and a Leg is produced in partnership with KFF Health News. That’s a nonprofit newsroom covering health care in America. Their work is terrific. Wins all kinds of awards every year. So proud to work with them.

Luke writes: “Medical debts have long spurred people to desperate acts: theft, suicide, plane hijacking,” And yes, the story of the hijacking is in the book. But, he also writes quote: “the modern era of pay-up-or-else health financing and aggressive debt collection began in earnest during the last two decades of the twentieth century, as threats to their own survival made hospitals less financially forgiving toward their patients.” Unquote. He writes about the eighties, how changes to Medicare and Medicaid left hospitals strapped for cash. And how they tried to make up the difference by charging higher prices to private insurers– which meant higher prices for the

uninsured too. And how in the nineties, private insurers started pushing back hard on how much they’d pay, and what they’d pay for. And that hit hospitals in the pocketbook hard.

Luke Messac: And really the question is when those cost pressures start, who’s going to make up the difference? And for a lot of places, it was patients. It was patients paying in the form of higher deductibles, higher copays, or for the uninsured, more aggressive debt collection measures. And so a lot of hospitals would leave debts on the books for years, even decades, until this time when they started saying, we’re done waiting for our money. Literally, we’re done waiting for our money was the line. And so they turned to third party debt collectors to whom they would either assign debts or sell debts, and those debt collectors really introduced a whole new series of tactics that involved the court system that involved, uh, wage garnishment and reporting debt to credit bureaus and placing liens on property and foreclosing on homes and sometimes even seeking the arrest of patients who didn’t show up to hearings. So this was a really brave new world of medical debt collection that we continue to live with today.

Dan: So here’s what I don’t really get, um, this comes up whenever you see stories about hospitals sue patients over debts. It’s like how little money this actually generates for hospitals. And this is evident from like your very, your accounts of the very first sales of debts that hospitals are selling you know, these very large collections of debts for tiny, tiny amounts and like, so, what’s the point?

Luke Messac: That is the persisting mystery of all of this. I think I have a few reasons why this might’ve happened. One is that it is a revenue garnering tactic, even as small as it is, it puts you a little more in the black or a little less in the red. And if you are a hospital financial administrator who’s charged with making sure that you remain as much in the black as possible or less in the red, then you’re going to take every tool in your toolkit until someone tells you not to. And without doctors and nurses and healthcare professionals really being involved in the process or aware that the process is going on, there’s really nothing to stop them. And the only people who you’re hearing from are debt collectors themselves. They are selling their wares at your door. They are at all your conferences. They are promising you that they will help your situation so

why not? I mean, your billing and collections office doesn’t want to deal with these bills. Folks who work in hospital billing offices, they’re used to dealing with insurers. They don’t mind that at all, right? This trench warfare trying to get insurers to pay up and dealing with all of their rigmarole in the reimbursement process is something in which they are well trained. But very few people want to deal with what are called self pay patients. They don’t want to be on the phone with poor folks trying to get them to pay up. And so you’re taking a headache off their hands by handing it to a third party debt collector who’s telling you that they’ll bet they’re better at it anyway. So I think a lot of

that has to do with kind of just the, the headache saved and the promised resources, however small they are from turning to this tactic. It just is too easy to do at this point.

Dan: Luke’s book profiles some of the early trailblazers in this headache saving business.

A guy named Michael Barrist founded NCO Financial Systems. A company that bought so much medical debt that they became known as the Walmart of debt collection.

A salesman for the company named Charles Piola was so good at selling the company’s services to doctors offices and hospitals that Inc magazine dubbed him the king of cold calls.

Luke writes that the company’s tactics included contacting patients up to 50 times in four or five months, and finding them at their workplaces. And these were not folks whose training started with a hippocratic oath: Do no harm. That was not their context.

Luke Messac: Their reference points are really other forms of consumer debt. When people don’t pay for their cars, their cars get impounded. When people don’t pay their credit card bills, they get double digit interest rates too. When people don’t pay for their homes, those homes get foreclosed. So when people don’t pay their medical bills, then use the tools at your disposal, including the legal system. 

There was also some concern that if hospitals were too lenient on patients, that they might be running afoul of some Medicare rules about kickbacks. Um, and this is an interesting concern, one that I saw raised in some legal papers, but it’s one that, at least for the last 20 years, the Department of Health and Human Services has tried to allay. And some hospitals have forsworn the practice. There are hundreds of hospitals out there who just do not sue patients, will not sue patients, and will tell you straight out, we don’t do it, we won’t do it. And they’re not getting sued by the federal government for kickbacks, right? So it’s not necessary. You don’t have to do it. And yet hospitals still do.

Dan: Towards the end of the book, you talk about like, how do we reform this system and that this issue of these kind of aggressive debt collection practices kind of rouse the conscience of most everyone. When individual institutions get the spotlight shown on, they generally stop doing it. But it’s not enough. Like it still leaves people with so, so many people with so much debt, with so many bills they can’t pay.

Luke Messac: Yeah. I have a lot of sympathy for people who feel like this problem is just too big. Or that they have other things that they need to do. For patients, often the patients who face this problems, you know, they’re often dealing with their own illnesses and their own debts and their own problems and to ask them to solve the problem themselves doesn’t seem a reasonable solution. But then I also have sympathy for the people who work in hospitals, the doctors, the nurses, the respiratory technicians, the janitors, the administrators, even who feel like their work is harder than ever and that they have enough trouble trying to make sure their patients get decent care and that they’re able to keep their own heads above water while doing it and not burn out and ask them to really look upon a really ugly feature of the healthcare system. And not only imbibe it and make sense of it, but do something about it. That’s asking a lot. And I’m really cognizant of the fact that we’re already asking so much of healthcare workers around the country. But I do think it’s something we need to take on. The best efforts are really the collective ones. And so I would say any possibility of joining up with other like minded folks who are already doing this work is going to be so much more fun, so much more effective.

Dan: Find your people,

Luke Messac: Amen. And then look around and see what your own place is doing your own hospital system because I regret to inform you that some of them won’t be what you hoped, but they are susceptible to pressure. They are capable of shame. And so there is a lot you can do close to home to make sure that your own institution is doing right by patients. Find out if your institution is suing patients. Look up your own hospital’s financial assistance policy and see what sort of extraordinary collection actions they will take against patients. See how patients qualify for free and discounted care and ask yourself is that as much as the hospital system could be doing given their resources. So there’s a lot you could do. Some of it involves grand systemic change, and some of it involves just making sure that where you go to work every day, where you’re training, where you’re studying is a place that you can believe in.

Dan: Luke Messac’s book is “Your Money or Your Life: Debt Collection in American Medicine.” It is out NOW from Oxford University Press. And speaking of right now: NEWSMATCH– is in effect. This is where we raise the biggest piece of our budget for next year, with your help. And the NewsMatch program matches every dollar you give us. The place to go is arm and a leg show dot com, slash, support. 

Next time on “An Arm and a Leg:” For a lot of us, November is open enrollment for next year’s health insurance.

Last year around this time, Ellen Hahn was absolutely scrambling — super creatively.

Ellen Hahn: When I was a kid, I dreamed about being an actor. I didn’t dream about having health insurance. I just kind of thought I would have it.

Dan: She decided to make a short film and cast herself in it. And she raised the money by crowdsourcing online. The title: Ellen Needs Insurance.

Now, the movie’s out, We’ll hear all about it.

And: of course this year, she needs insurance all over again. Plus her union has

been on strike since May. Whoa. We’ll find out what she’s got planned.

That’s in two weeks. Meanwhile, I am saying please do take a minute to pitch in to help us make this show. Every dollar gets matched.

The place to do that is arm and a leg show, dot com, slash support.

That’s arm and a leg show dot com, slash: support

Thank you so much. Catch you in a couple weeks, with  “Ellen Needs Insurance.” Till then, take care of yourself.

This episode of “An Arm and a Leg” was produced by Emily Pisacreta and me, Dan Weissman 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.

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

And thanks to the Institute for Nonprofit News for serving as our fiscal sponsor, allowing us to accept tax-exempt donations. You can learn more about INN at INN.org

And, finally, thanks to everybody who supports this show financially.

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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.

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).

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