If he lived in any of the 50 states, Medicare would have provided coverage for his medical needs. But because he lived in Puerto Rico, Medicare is far less useful to him.

Read the rest…

Last year alone, David Mitchell paid $16,525 for 12 little bottles of Pomalyst, one of the pricey medications that treat his multiple myeloma, a blood cancer he was diagnosed with in 2010.

The drugs have kept his cancer at bay. But their rapidly increasing costs so infuriated Mitchell that he was inspired to create an advocacy movement.

Patients for Affordable Drugs, which he founded in 2016, was instrumental in getting drug price reforms into the 2022 Inflation Reduction Act. Those changes are kicking in now, and Mitchell, 73, is an early beneficiary.

In January, he plunked down $3,308 for a Pomalyst refill “and that’s it,” he said. Under the law, he has no further responsibility for his drug costs this year — a savings of more than $13,000.

The law caps out-of-pocket spending on brand-name drugs for Medicare beneficiaries at about $3,500 in 2024. The patient cap for all drugs drops to $2,000 next year.

“From a selfish perspective, I feel great about it,” he said. But the payment cap will be “truly life-changing” for hundreds of thousands of other Medicare patients, Mitchell said.

President Joe Biden’s battle against high drug prices is mostly embodied in the IRA, as the law is known — a grab bag of measures intended to give Medicare patients immediate relief and, in the long term, to impose government controls on what pharmaceutical companies charge for their products. The law represents the most significant overhaul for the U.S. drug marketplace in decades.

With Election Day on the horizon, the president is trying to make sure voters know who was responsible. This month, the White House began a campaign to get the word out to seniors.

“The days where Americans pay two to three times what they pay for prescription drugs in other countries are ending,” Biden said in a Feb. 1 statement.

KFF polling indicates Biden has work to do. Just a quarter of adults were aware that the IRA includes provisions on drug prices in July, nearly a year after the president signed it. He isn’t helped by the name of the law, the “Inflation Reduction Act,” which says nothing about health care or drug costs.

Biden’s own estimate of drug price inflation is quite conservative: U.S. patients sometimes pay more than 10 times as much for their drugs compared with people in other countries. The popular weight loss drug Wegovy lists for $936 a month in the U.S., for example — and $83 in France.

Additional sections of the law provide free vaccines and $35-a-month insulin and federal subsidies to patients earning up to 150% of the federal poverty level, and require drugmakers to pay the government rebates for medicines whose prices rise faster than inflation. But the most controversial provision enables Medicare to negotiate prices for certain expensive drugs that have been on the market for at least nine years. It’s key to Biden’s attempt to weaken the drug industry’s grip.

Responding to Pressure

The impact of Medicare’s bargaining over drug prices for privately insured Americans remains unclear. States have taken additional steps, such as cutting copays for insulin for the privately insured.

However, insurers are increasing premiums in response to their higher costs under the IRA. Monthly premiums on traditional Medicare drug plans jumped to $48 from $40 this year, on average.

On Feb. 1, the Centers for Medicare & Medicaid Services sent pharmaceutical makers opening bids for the first 10 expensive drugs it selected for negotiation. The companies are responding to the bids — while filing nine lawsuits that aim to kill the negotiations altogether, arguing that limiting their profits will strangle the pipeline of lifesaving drugs. A federal court in Texas dismissed one of the suits on Feb. 12, without taking up the substantive legal issue over constitutionality.

The nonpartisan Congressional Budget Office predicted the IRA’s drug pricing elements would save the federal government $237 billion over 10 years while reducing the number of drugs coming to market in that period by about two.

If the government prevails in the courts, new prices for those 10 drugs will be announced by September and take effect in 2026. The government will negotiate an additional 15 drugs for 2027, another 15 for 2028, and 20 more each year thereafter. CMS has been mum about the size of its offers, but AstraZeneca CEO Pascal Soriot on Feb. 8 called the opening bid for his company’s drug Farxiga (which earned $2.8 billion in U.S. sales in fiscal year 2023) “relatively encouraging.”

Related Biden administration efforts, as well as legislation with bipartisan support, could complement the Inflation Reduction Act’s swing at drug prices.

The House and Senate have passed bills that require greater transparency and less self-serving behavior by pharmacy benefit managers, the secretive intermediaries that decide which drugs go on patients’ formularies, the lists detailing which prescriptions are available to health plan enrollees. The Federal Trade Commission is investigating anti-competitive action by leading PBMs, as well as drug company patenting tricks that slow the entry of cheaper drugs to the market.

‘Sending a Message’

Months after drug companies began suing to stop price negotiations, the Biden administration released a framework describing when it could “march in” and essentially seize drugs created through research funded by the National Institutes of Health if they are unreasonably priced.

The timing of the march-in announcement “suggests that it’s about sending a message” to the drug industry, said Robin Feldman, who leads the Center for Innovation at the University of California Law-San Francisco. And so, in a way, does the Inflation Reduction Act itself, she said.

“I have always thought that the IRA would reverberate well beyond the unlucky 10 and others that get pulled into the net later,” Feldman said. “Companies are likely to try to moderate their behavior to stay out of negotiations. I think of all the things going on as attempts to corral the market into more reasonable pathways.”

The IRA issues did not appear to be top of mind to most executives and investors as they gathered to make deals at the annual J.P. Morgan Healthcare Conference in San Francisco last month.

“I think the industry is navigating its way beyond this,” said Matthew Price, chief operating officer of Promontory Therapeutics, a cancer drug startup, in an interview there. The drugs up for negotiation “look to be assets that were already nearing the end of their patent life. So maybe the impact on revenues is less than feared. There’s alarm around this, but it was probably inevitable that a negotiation mechanism of some kind would have to come in.”

Investors generally appear sanguine about the impact of the law. A recent S&P Global report suggests “healthy revenue growth through 2027” for the pharmaceutical industry.

Back in Washington, many of the changes await action by the courts and Congress and could be shelved depending on the results of the fall election.

The restructuring of Medicare Part D, which covers most retail prescription drugs, is already lowering costs for many Medicare patients who spent more than $3,500 a year on their Part D drugs. In 2020 that was about 1.3 million patients, 200,000 of whom spent $5,000 or more out-of-pocket, according to KFF research.

“That’s real savings,” said Tricia Neuman, executive director of KFF’s Medicare policy program, “and it’s targeted to people who are really sick.”

Although the drug industry is spending millions to fight the IRA, the Part D portion of the bill could end up boosting their sales. While it forces the industry to further discount the highest-grossing drugs, the bill makes it easier for Medicare patients to pick up their medicines because they’ll be able to afford them, said Stacie Dusetzina, a Vanderbilt University School of Medicine researcher. She was the lead author of a 2022 study showing that cancer patients who didn’t get income subsidies were about half as likely to fill prescriptions.

States and foundations that help patients pay for their drugs will save money, enabling them to procure more drugs for more patients, said Gina Upchurch, the executive director of Senior PharmAssist, a Durham, North Carolina-based drug assistance program, and a member of the Medicare Payment Advisory Commission. “This is good news for the drug companies,” she said.

Relief for Patients

Lynn Scarfuto, 73, a retired nurse who lives on a fixed income in upstate New York, spent $1,157 for drugs last year, while most of her share of the $205,000 annual cost for the leukemia drug Imbruvica was paid by a charity, the Patient Access Network Foundation. This year, through the IRA, she’ll pay nothing because the foundation’s first monthly Imbruvica payment covered her entire responsibility. Imbruvica, marketed jointly by AbbVie and Janssen, a subsidiary of Johnson & Johnson, is one of the 10 drugs subject to Medicare negotiations.

“For Medicare patients, the Inflation Reduction Act is a great, wonderful thing,” Scarfuto said. “I hope the negotiation continues as they have promised, adding more drugs every year.”

Mitchell, a PR specialist who had worked with such clients as the Campaign for Tobacco-Free Kids and pharmaceutical giant J&J, went to an emergency room with severe back pain in November 2010 and discovered he had a cancer that had broken a vertebra and five ribs and left holes in his pelvis, skull, and forearm bones. He responded well to surgery and treatment but was shocked at the price of his drugs.

His Patients for Affordable Drugs group has become a powerful voice in Washington, engaging tens of thousands of patients, including Scarfuto, to tell their stories and lobby legislatures. The work is supported in part by millions in grants from Arnold Ventures, a philanthropy that has supported health care policies like lower drug prices, access to contraception, and solutions to the opioid epidemic.

“What got the IRA over the finish line in part was angry people who said we want something done with this,” Mitchell said. “Our patients gave voice to that.”

Arnold Ventures has provided funding for KFF Health News.

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).

By some measures, private equity investment lagged in 2023, a year marked by growing distress and high-profile downfalls among private equity-backed health care companies.

Even so, three sectors still managed to see strong deal flow and prices: med spa, cardiology, and clinical trial sites, according to a new PitchBook report analyzing private equity investments in health care services in 2023. Each of the three niches continue to generate buzz among investors, even as other areas fizzle.

It’s not that those three industries are perfect fits for private equity, it’s that the more obvious areas like autism therapists and physician practices are struggling with high interest rates and regulatory scrutiny, said Rebecca Springer, PitchBook’s lead health care analyst.

Continue to STAT+ to read the full story…

In September 2022, Elyse Greenblatt of Queens returned home from a trip to Rwanda with a rather unwelcome-back gift: persistent congestion.

She felt a pain in her sinuses and sought a quick resolution.

Covid-19 couldn’t be ruled out, so rather than risk passing on an unknown infection to others in a waiting room, the New Yorker booked a telehealth visit through her usual health system, Mount Sinai — a perennial on best-hospitals lists.

That proved an expensive decision. She remembers the visit as taking barely any time. The doctor decided it was likely a sinus infection, not covid, and prescribed her fluticasone, a nasal spray that relieves congestion, and an antibiotic, Keflex. (The Centers for Disease Control and Prevention says antibiotics “are not needed for many sinus infections, but your doctor can decide if you need” one.)

Then the bill came.

The Patient: Elyse Greenblatt, now 38, had insurance coverage through Empire BlueCross BlueShield, a New York-based insurer.

Medical Services: A telehealth urgent care visit through Mount Sinai’s personal record app. Greenblatt was connected with an urgent care doctor through the luck of the draw. She was diagnosed with sinusitis, prescribed an antibiotic and Flonase, and told to come back if there was no improvement.

All this meant a big bill. The insurer said the telehealth visit was deemed an out-of-network service — a charge Greenblatt said the digital service didn’t do a great job of warning her about. It came as a surprise. “In my mind, if all my doctors are ‘in-insurance,’ why would they pair me with someone who was ‘out-of-insurance’?” she asked. And the hospital system tried its best to make contesting the charge difficult, she said.

Service Provider: The doctor was affiliated with Mount Sinai’s health system, though where the bill came from was unclear: Was it from one of the system’s hospitals or another unit?

Total Bill: $660 for what was billed as a 45- to 59-minute visit. The insurer paid nothing, ruling it out of network.

What Gives: The bill was puzzling on multiple levels. Most notably: How could this be an out-of-network service? Generally, urgent care visits delivered via video are a competitive part of the health care economy, and they’re not typically terribly expensive.

Mount Sinai’s telehealth booking process is at pains to assure bookers they’re getting a low price. After receiving the bill, Greenblatt went back to the app to recreate her steps — and she took a screenshot of one particular part of the app: the details. She got an estimated wait time of 10 minutes, for a cost of $60. “Cost may be less based on insurance,” the app said; this information, Mount Sinai spokesperson Lucia Lee said, is “for the patient’s benefit,” and the “cost may differ depending on the patient’s insurance.”

A $60 fee would be in line with, if not a bit cheaper than, many other telehealth services. Doctor on Demand, for example, offers visits from a clinician for $79 for a 15-minute visit, assuming the customer’s insurance doesn’t cover it. Amazon’s new clinic service, offering telehealth care for a wide range of conditions, advertises that charges start at $30 for a sinus infection.

The Health Care Cost Institute, an organization that analyzes health care claims data, told KFF Health News its data shows an urgent care telehealth visit runs, on average, $120 in total costs — but only $14 in out-of-pocket charges.

So how did this visit end up costing astronomically so much more than the average? After all, one of the selling points of telemedicine is not only convenience but cost savings.

First, there was the length of the visit. The doctor’s bill described it as moderately lengthy. But Greenblatt recalled the visit as simple and straightforward; she described her symptoms and got an antibiotic prescription — not a moderately complex visit requiring the better part of an hour to resolve.

The choice of description is a somewhat wonky part of health care billing that plays a big part in how expensive care can get. The more complex the case, and the longer it takes to diagnose and treat, the more providers can charge patients and insurers.

Greenblatt’s doctor billed her at a moderate level of care — curious, given her memory of the visit as quick, almost perfunctory. “I think it was five minutes,” she recalled. “I said it was a sinus infection; she told me I was right. ‘Take some meds, you’ll be fine.’”

Ishani Ganguli, a doctor at Brigham and Women’s Hospital in Boston who studies telehealth, said she didn’t know the exact circumstances of care but was “a bit surprised that it was not billed at a lower level” if it was indeed a quick visit.

That leaves the out-of-network aspect of the bill, allowing the insurer to pay nothing for the care. (Stephanie DuBois, a spokesperson for Empire BlueCross BlueShield, Greenblatt’s insurer, said the payer covers virtual visits through two services, or through in-network doctors. The Mount Sinai doctor fit neither criteria.) Still, why did Mount Sinai, Greenblatt’s usual health care system, assign her an out-of-network doctor?

“If one gets their care from the Mount Sinai system and the care is within network, I don’t think it is reasonable for the patients to expect or understand that one of the Mount Sinai clinicians is suddenly going to be out of network,” said Ateev Mehrotra, a hospitalist and telehealth researcher at Beth Israel Deaconess Medical Center.

It struck the doctors specializing in telehealth research whom KFF Health News consulted as an unusual situation, especially since the doctor who provided the care was employed by the prestigious health system.

The doctor in question may have been in network for no insurers whatsoever: A review of the doctor’s Mount Sinai profile page — archived in November 2022 — does not list any accepted insurance. (That’s in contrast to other doctors in the system.)

Lee, Mount Sinai’s spokesperson, said the doctor did take at least some insurance. When asked about the doctor’s webpage not showing any accepted plans, she responded the site “instructs patients to contact her office for the most up-to-date information.”

Attempting to solve this billing puzzle turned into a major league headache for Greenblatt. Deepening the mystery: After calling Mount Sinai’s billing department, she was told the case had been routed to disputes and marked as “urgent.”

But the doctor’s office would seemingly not respond. “In most other professions, you can’t just ignore a message for a year,” she observed.

The bill would disappear on her patient portal, then come back again. Another call revealed a new twist: She was told by a staffer that she’d signed a form consenting to the out-of-network charge. But “when I asked to get a copy of the form I signed, she asked if she could fax it,” Greenblatt said. Greenblatt said no. The billing department then asked whether they could put the form in her patient portal, for which Greenblatt gave permission. No form materialized.

When KFF Health News asked Mount Sinai about the case in mid-October of this year, Lee, the system’s spokesperson, forwarded a copy of the three-page form — which Greenblatt didn’t remember signing. Lee said the forms are presented as part of the flow of the check-in process and “intended to be obvious to the patient as required by law.” Lee said on average, a patient signs two to four forms before checking into the visit.

But, according to the time stamp on the forms, Greenblatt’s visit concluded before she signed. Lee said it is “not standard” to sign forms after the visit has concluded, and said that once informed, patients “may contact the office and reschedule with an ‘in-network provider.’”

“If it was provided after the service was rendered, that is an exception and situational,” she concluded.

The business with the forms — their timing and their obviousness — is potentially a vital distinction. In December 2020, Congress enacted the No Surprises Act, designed to crack down on so-called surprise medical bills that arise when patients think their care is covered by insurance but actually isn’t. Allie Shalom, a lawyer with Foley & Lardner, said the law requires notice to be given to patients, and consent obtained in advance.

More from Bill of the Month

• Out for Blood? For Routine Lab Work, the Hospital Billed Her $2,400

  Nov 21, 2023

• When That Supposedly Free Annual Physical Generates a Bill

  Oct 30, 2023

• She Received Chemo in Two States. Why Did It Cost So Much More in Alaska?

  Sep 29, 2023

More from the Series

But the legislation provides an exception. It applies only to hospitals, hospital outpatient facilities, critical access hospitals, and ambulatory surgery centers. Greenblatt’s medical bill variously presents her visit as “Office/Outpatient” or “Episodic Telehealth,” making it hard to “tell the exact entity that provided the services,” Shalom said.

That, in turn, makes its status under the No Surprises Act unclear. The rules apply when an out-of-network provider charges a patient for care received at an in-network facility. But Shalom couldn’t be sure what entity charged Greenblatt, and, therefore, whether that entity was in network.

As for Mount Sinai, Lee said asking for consent post-visit does not comply with the No Surprises Act, though she said the system needed more time to research whether Greenblatt was billed by the hospital or another entity.

The Resolution: Greenblatt’s bill is unpaid and unresolved.

The Takeaway: Unfortunately, patients need to be on guard to protect their wallets.

If you want to be a smart shopper, consider timing the length of your visit. The “Bill of the Month” team regularly receives submissions from patients who were billed for a visit significantly longer than what took place. You shouldn’t, for example, be charged for time sitting in a virtual waiting room.

Most important, even when you seek care at an in-network hospital, whose doctors are typically in network, always ask if a particular physician you’ve not seen before is in your network. Many practices and hospitals offer providers in both categories (even if that logically feels unfair to patients). Providers are supposed to inform you that the care being rendered is out of network. But that “informed consent” is often buried in a pile of consent forms that you auto-sign, in rapid fire. And the language is often a blanket statement, such as “I understand that some of my care may be provided by caregivers not in my insurance network” or “I agree to pay for services not covered by my insurance.”

To a patient trying to quickly book care, that may not feel like “informed consent” at all.

“It’s problematic to expect patients to read the fine print, especially when they feel unwell,” Ganguli said.

Emily Siner reported the audio story.

Bill of the Month is a crowdsourced investigation by KFF Health News and NPR that dissects and explains medical bills. Do you have an interesting medical bill you want to share with us? Tell us about it!

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.

USE OUR CONTENT

This story can be republished for free (details).

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.

Former president and current 2024 Republican front-runner Donald Trump is aiming to put a repeal of the Affordable Care Act back on the political agenda, much to the delight of Democrats, who point to the health law’s growing popularity.

Meanwhile, in Texas, the all-Republican state Supreme Court this week took up a lawsuit filed by more than two dozen women who said their lives were endangered when they experienced pregnancy complications due to the vague wording of the state’s near-total abortion ban.

This week’s panelists are Julie Rovner of KFF Health News, Joanne Kenen of Johns Hopkins University and Politico Magazine, Victoria Knight of Axios, and Sarah Karlin-Smith of the Pink Sheet.

Panelists

Joanne Kenen
Johns Hopkins Bloomberg School of Public Health and Politico

@JoanneKenen

Read Joanne's stories

Victoria Knight
Axios

@victoriaregisk

Read Victoria's stories

Sarah Karlin-Smith
Pink Sheet

@SarahKarlin

Read Sarah's stories

Among the takeaways from this week’s episode:

• The FDA recently approved another promising weight loss drug, offering another option to meet the huge demand for such drugs that promise notable health benefits. But Medicare and private insurers remain wary of paying the tab for these very expensive drugs.
• Speaking of expensive drugs, the courts are weighing in on the use of so-called copay accumulators offered by drug companies and others to reduce the cost of pricey pharmaceuticals for patients. The latest ruling called the federal government’s rules on the subject inconsistent and tied the use of copay accumulators to the availability of cheaper, generic alternatives.
• Congress will revisit government spending in January, but that isn’t soon enough to address the end-of-the-year policy changes for some health programs, such as pending cuts to Medicare payments for doctors.
• “This Week in Medical Misinformation” highlights a guide by the staff of Stat to help lay people decipher whether clinical study results truly represent a “breakthrough” or not.

Also this week, Rovner interviews KFF Health News’ Rachana Pradhan, who reported and wrote the latest “Bill of the Month” feature, about a woman who visited a hospital lab for basic prenatal tests and ended up owing almost $2,400. 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: KFF Health News’ “Medicaid ‘Unwinding’ Makes Other Public Assistance Harder to Get,” by Katheryn Houghton, Rachana Pradhan, and Samantha Liss.

Joanne Kenen: KFF Health News’ “She Once Advised the President on Aging Issues. Now, She’s Battling Serious Disability and Depression,” by Judith Graham.  

Victoria Knight: Business Insider’s “Washington’s Secret Weapon Is a Beloved Gen Z Energy Drink With More Caffeine Than God,” by Lauren Vespoli.

Sarah Karlin-Smith: ProPublica’s “Insurance Executives Refused to Pay for the Cancer Treatment That Could Have Saved Him. This Is How They Did It,” by Maya Miller and Robin Fields.

Also mentioned in this week’s episode:

• KFF Health News’ “Progressive and Anti-Abortion? New Group Plays Fast and Loose to Make Points,” by Darius Tahir.
• ProPublica’s “Some Republicans Were Willing to Compromise on Abortion Ban Exceptions. Activists Made Sure They Didn’t,” by Kavitha Surana.

click to open the transcript

Transcript: Trump Puts Obamacare Repeal Back on Agenda

KFF Health News’ ‘What the Health?’Episode Title: Trump Puts Obamacare Repeal Back on AgendaEpisode Number: 324Published: Nov. 30, 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, Nov. 30, 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 Sarah Karlin-Smith of the Pink Sheet.

Sarah Karlin-Smith: Hi, Julie.

Rovner: Victoria Knight of Axios News.

Victoria Knight: Hello, everyone.

Rovner: And Joanne Kenen of the Johns Hopkins University and Politico Magazine.

Joanne Kenen: Hi, everybody.

Rovner: Later in this episode we’ll have my interview with my colleague Rachana Pradhan about the latest KFF Health News-NPR “Bill of the Month.” This month’s patient fell into an all-too-common trap of using a lab suggested by her doctor’s office for routine bloodwork without realizing she might be left on the hook for thousands of dollars. But first, this week’s news — and last week’s, too, because we were off.

Because nothing is ever gone for good, the effort to repeal and replace Obamacare is back in the news, and it’s coming primarily from the likely Republican presidential nominee, Donald Trump. Just to remind you, in case you’ve forgotten, Trump, during his presidency, even in the two years that Republicans controlled the House and the Senate, was unable to engineer a repeal of the Affordable Care Act, nor did his administration even manage to unveil an alternative. So what possible reason could he have for thinking that this is going to help him politically now?

Knight: My takeaway is that I think it’s a personal grudge that former President Trump still has, that he failed at this. And I think, when you talk to people, he’s still mad that Sen. John McCain did his famous thumbs-down when the rest of the Republican Party was on board. So I’m not sure that there is much political strategy besides wanting to just make it happen finally, because upset it didn’t happen.

Rovner: Is this part of his revenge tour?

Knight: I mean, I think somewhat. Because if you ask House Freedom Caucus people, they will say, “Yeah, we should repeal it.” But if you ask some more moderate Republican members, they’re like, “We’ve already been through that. We don’t want to do it again.” So I don’t think the Republican Party on the Hill has an appetite to do that, even if Congress goes to Republicans in both chambers.

Kenen: Trump never came up with a health plan and repeal died in the Senate, but remember, it was a struggle to even get anything through the House, and what the House Republicans finally voted for, they didn’t even like. So I don’t know if you call this a revenge tour, but it’s checking a box. But I think it’s important to remember that if you look closely at what Republican policies are, they don’t call it repeal, they don’t say, “We are going to repeal it.” That didn’t go so well for them, and it probably cost them an election.

But they still do have a lot of policy ideas that would water down or de facto repeal many key provisions of Obamacare. So they haven’t tried to go that route, and I’m not sure they would ever try a full-out repeal, but there are lots of other things they could do, some of which would have technical names: community rating and things like that, that voters might not quite understand what they were doing, that could really undermine the protections of Obamacare.

Rovner: Yeah, I mean, I was going to say the Republican Party, in general, this has been the running joke since they started “repeal and replace” in 2010, is that they haven’t had the “replace” part of “repeal and replace” at all. Trump kept saying he was going to have a great plan, it’s coming in two weeks, and, of course, now he’s saying he’s going to have a great plan. We’ve never seen this great plan because the Republicans have never been able to agree on what should come next. Aside from, as Joanne says, tinkering around with the Affordable Care Act.

Kenen: Some of that tinkering would be significant.

Rovner: It could be.

Kenen: I mean there are things that they could tinker that wouldn’t be called repeal, but would actually really make the ACA not work very well.

Rovner: But most of the things that the Republicans wanted to do to the ACA have already been done, like repealing the individual mandate, getting rid of a lot of the industry-specific taxes that they didn’t like.

Kenen: Right. So they ended up getting rid of the spinach and they end up with the stuff that even Republicans, they might not say they like the ACA, but they’re being protected by it. And the individual mandate was the single-most unpopular, contentious part of the law and even a lot of Democrats didn’t like it. And so that target of the animus is gone. So by killing part of it, they also made it harder to do things in the future. They could do damage, though.

Rovner: Yeah. Or they could take on entitlements which, of course, is where the real money is. But we’ll get to that in a minute. Sarah, we have not seen you in a while, so we need to catch up on a bunch of things that are FDA-related. First, a couple of payment items since you were last here. The FDA has, as expected, approved a weight loss version of the diabetes drug Mounjaro that appears to be even more effective than the weight loss version of Ozempic. But insurers are still very reluctant to pay for these drugs, which are not only very expensive, they appear to need to be consumed very long-term, if not forever. Medicare has so far resisted calls to cover the drugs, despite some pressure from members of Congress, but that might be about to change.

Karlin-Smith: I think Medicare is getting a lot of pressure. They’re going to have to probably re-look at it at some point. What I found interesting is recently CMS [the Centers for Medicare and Medicaid Services] regulates other types of health plans as well, and in the ACA space they seem to be pushing for coverage of these obesity drugs. And I think they’re thinking around that. They note that the non-coverage allowance for these ACA plans was based on … they were following what Medicare was doing and there’s some acknowledgment that maybe the non-Medicare population is different from the Medicare population. But I think it’s also worth thinking about some of their other reasoning for coverage there, including that these drugs are different than some of the older weight loss drugs that provided more minimal weight loss, had worse side effects, and it came at a time when weight loss was seen as more of a cosmetic issue. So if that ACA provision rule goes through, I think that does help the case for people pushing for coverage in Medicare Part D of these drugs.

Rovner: Yeah, I mean this seems to be one of these “between a rock and a hard place” … that the demand for these drugs is huge. The evidence suggests that they work very well and that they work not just to help people lose weight, but perhaps when they lose weight to be less likely to have heart attacks and strokes and all that other stuff that you don’t want people to have. On the other hand, at the moment, they are super expensive and would bankrupt insurance companies and Medicare.

Karlin-Smith: Right. I mean, we’ve seen this before where people worry there’s a new class of expensive drugs that a lot of people seem like they will need and it’s going to bankrupt the country, and oftentimes that doesn’t happen even whether it is, in theory, more coverage to some extent. We saw that with hep C. There was a new class of cholesterol drugs that came out a few years ago that just haven’t taken off in the way people worried they would. Some of these obesity drugs, they do work really well, not everybody really tolerates them as well as you would think. So there’s questions about whether that demand is really there. Sen. [Bill] Cassidy [R-La.] has made some interesting points about “Is there a way to use these drugs initially for people and then come up with something more for weight maintenance that wouldn’t be as expensive?”

Rovner: We should point out that Sen. Cassidy is a medical doctor.

Karlin-Smith: But I think the pressure is coming on the government. Recently, I got to hear the head of OPM [Office of Personnel Management], who deals with the insurance coverage for federal government employees, and they have a really permissible coverage of obesity drugs. Basically, they require all their health insurance plans to cover one of these GLP-1 drugs, and they have some really interesting language I’ve seen used by pharmaceutical companies to say, “Look, this part of the federal government has said obesity is a disease. It needs to be treated,” and so forth. So I don’t think the federal government is going to be able to use this argument of, “This is not a medical condition, and these are expensive, we’re not going to cover it.” But there’s definitely going to be tensions there in terms of costs.

Rovner: Well, definitely more to come here. Meanwhile, CMS is also looking at changing the rules, again, for some pharmacy copay assistance programs, which claim to assist patients but more often seem to enrich drug companies and payers. What is this one about? And can you explain it in English? Because I’m not sure I understand it.

Karlin-Smith: So most people, when you get a prescription for a drug, have some amount of copay, so your insurance company pays the bulk of the cost and you pay maybe $10, $20, $30 when you pick up your prescription. For really high-cost drugs, pharmaceutical companies and sometimes third-party charities often offer copay support, where they will actually pay your copay for you.

The criticism of these charities and pharma support is that it lets the companies keep the prices higher. Because once you take away the patient feeling the burden of the price, they can still keep that higher percentage that goes to your health plan and into your premiums that you don’t think about. And so health insurance companies have said, “OK, well we’re not going to actually count this coupon money towards your copay, your out-of-pocket max for the year, because you’re not actually paying it.”

So that doesn’t end up doing the patient much good in the end because, while you might get the drug for free the first part of the year, eventually you end up having to pay the money. The courts have weighed in, and the latest ruling was that the effect of it was essentially telling CMS, “You need to re-look at your rules. We don’t think your logic is consistent,” and they seem to potentially suggest that CMS should only allow copay accumulators if there’s a cheaper drug a patient could take.

So, basically, they’re saying it’s unfair to put this burden on patients and not let them benefit from the coupons if this is the only drug they can take. But if there’s a generic drug they should be taking, that’s the equivalent then, OK, insurance company, you can penalize them there. But interestingly, CMS has basically pushed back on the court ruling. They’re asking them for basically more information about what they’re exactly directing them to do and signaling that they want to keep their broader interpretation of the law.

It’s a tricky situation, I think, policy-wise, because there’s this tension of, yes, the drug prices are really high. The insurance companies have a point of how these coupons create these perverse incentives in the system, and, on the other hand, the person that gets stuck in the middle, the patient is not really the fair pawn in this game. And when talking about a similar topic with somebody recently, they brought up what happened with surprise billing and they made this parallel of we need to think about it as, OK, you big corporate entities need to figure out how to duke out this problem, but stop putting the patient in the middle because they’re the one that gets hurt. And that’s what happened in surprise billing. I’m not sure if there’s quite that solution of how you could do that in this pharmaceutical space though.

Rovner: I was just going to say that this sounds exactly like surprise billing, but for prescription drugs. Well, while we are talking about Capitol Hill, let’s turn to Capitol Hill, where the big news of the week is that House Republican conservatives, the so-called Freedom Caucus, have apparently agreed to abide by the deal they agreed to abide by earlier this year. At least that’s when it comes to the overall total for the annual spending bills. Then-Speaker [Kevin] McCarthy’s attempt to adhere to that deal is one of the things that led to his ouster. The conservatives had wanted to cut spending much more deeply than the deal that was cut, I think it was in May. Although I feel compelled to add: Cutting the appropriations bills, which is what we’re talking about here, doesn’t really do very much to help the federal budget deficit. Most of the money that the federal government spends doesn’t go through the appropriations process. It’s automatic, like Social Security and Medicare.

But I digress. Victoria, what prompted the Freedom Caucus to change their minds and what does that portend for actually getting some of these spending bills done before the next cutoff deadline, which is mid-January?

Knight: I mean, I think it’s the Freedom Caucus just facing reality and that it’s really hard to do budget cuts, and a lot of these bills, the cuts are very deep. For the Labor-HHS bill, which is the bill that funds the Department of Health and Human Services, the cut is 18%. To the CDC [Centers for Disease Control and Prevention], 12% to the department itself. Those are really big cuts. And all the bills, you look at them, they all have really deep cuts.

The agriculture bill has deep cuts to the Department of Agriculture that some moderate Republicans don’t like. So all of the bills have these issues, and so I think they’re realizing it is just not possible to get what they want. Some of them didn’t vote for the Fiscal Responsibility Act, which was the deal that former Speaker McCarthy did with the debt limit that set funding levels. So they’re not necessarily going back on something that they voted for.

Rovner: They’re going back on something that the House voted for.

Knight: Yeah. So yeah, I think they’re just realizing the appropriations process, it’s difficult to make these deep spending cuts. I’ve also heard rumors that there might still be a big omnibus spending bill in January. Despite all this talk of doing the individual appropriations bills, I’ve heard that it may end up, despite all the efforts of the Republican Caucus, it may end where they have to just do a big bill because this is the easiest thing to do and then move on to the rest of the business of Congress for the next year. So we’ll see if that happens. But I have heard some rumors already swirling around that.

Rovner: I mean the idea they have now “agreed” to a spending limit that should have been done in the budget in April, which would’ve given them several months to work on the appropriations bills coming in under that level. And, of course, now we’re almost three months into the new fiscal year, so I mean they’re going to be late starting next year unless they resolve this pretty soon. But in the meantime, one thing that won’t happen is that we won’t get a big omnibus bill before Christmas because the deadline is now not until January, and that’s important for a bunch of health issues because we have a lot of policies that are going to end at the end of the year. Things like putting off cuts in Medicare payments to doctors, which a lot of people care about, including, obviously, all the doctors. Is there a chance that some of these “extender provisions” will find their way onto something else, maybe the defense authorization bill that I think they do want to finish before Christmas?

Knight: Yeah, I think that’s definitely possible. I’ve also heard they can retroactively do that, so even if they miss the deadline, it will probably be fixed. So it doesn’t seem like too big a worry,

Rovner: Although those doctor cuts, I mean, what happens is that CMS pens the claims, they don’t pay the claims until it’s been fixed retroactively. They have done it before, it’s a mess.

Kenen: And it’s bad for the doctors because they don’t get paid. It takes even longer to get paid because they’re put in a hold pile, which gets rather large.

Rovner: It does. Not that the defense bill doesn’t have its own issues around defense, but while we’re on the subject of defense, it looks like Alabama Republican Sen. Tommy Tuberville might be ready to throw in the towel now on the more than 400 military promotions he’s been blocking to protest the Biden administration’s policy allowing members of active-duty military and their dependents to travel to other states for an abortion if it’s banned where they are stationed. This has been going on since February. My impression is that it’s his fellow Republicans who are getting worried about this.

Kenen: Yeah. They’re as fed up as the Democrats are now. Not 100% of them are, but there’s a number who’ve come out in public and basically told him to cut it out. And then there are others who aren’t saying it in public, but there are clearly signs that they’re not crazy about this either. But we keep hearing it’s about to break. We’ve been hearing for several weeks it’s about to be resolved, and until it’s resolved, it’s not resolved. So I think clearly there’s movement because the pressure has ramped up from his fellow Republicans.

Rovner: Well, to get really technical, I think that the Senate Rules Committee passed a resolution that could get around this whole thing-

Kenen: But they don’t really want to, I mean the Republicans would rather not confront him through a vote. They’d rather just stare him down and get him to pretend that he won and move on. And that’s what we’re waiting to see. Is it a formal action by the Senate or is there some negotiated way to move forward with at least a large number of these held-up nominations.

Rovner: It’s the George Santos-Bob Menendez health issue. In other words, they would like him to step down himself rather than have to vote to take it down, but they would definitely like him to back off.

Kenen: I mean, not confusing anybody but they’re not talking about expelling her from the Senate. They’re [inaudible] talking about “Cut this out and let these people get their promotions,” because some of them are very serious. These are major positions that are unfilled.

Rovner: Yes, I mean it’s backing up the entire military system because people can’t move on to where they’re supposed to go and the people who are going to take their place can’t move on to where they’re supposed to go, and it’s not great for the Department of Defense. All right, well, while we are on the subject of abortion, at least tangentially, the Texas Supreme Court this week heard that case filed by women who had serious pregnancy complications for which they were unable to get medical care because their doctors were afraid that Texas’ abortion ban would be used to take their medical licenses and/or put them in jail.

Kenen: For 99 years!

Rovner: Yeah, the Texas officials defending against the lawsuit say the women shouldn’t be suing the state. They should be suing their doctors. So what do we expect to happen here? This hearing isn’t even really on the merits. It’s just on whether the exceptions the lower court came up with will be allowed to take effect, which at the moment they’re not.

Kenen: The exception-by-exception policy, where things get written in, is problematic because it’s hard to write a law allowing every possible medical situation that could arise and then that would open it to all other litigation because people would disagree about is this close to death or not? So the plaintiffs want a broader, clearer exception where it’s up to the doctors to do what they think is correct for their patients’ health, all sorts of things can go wrong with people’s bodies.

It’s hard to legislate, which is OK and which isn’t. So the idea of suing your doctor, I mean, that’s just not going to go anywhere. I mean, the court is either going to clarify it or not clarify it. Either way, it’ll get appealed. These issues are not going away. There’s many, many, many documented cases of people not being able to get standard of care. Pregnancy complications are rare, but they’re serious and the state legislatures have been really resistant so far to broadening these exemptions.

Rovner: It’s not just Texas. ProPublica published an investigation this week that found that none of the dozen states with the strictest abortion bans broadened exceptions even after women and their doctors complained that they were being put at grave risk, as Joanne just pointed out. When we look at elections and polls, it feels like the abortion rights side very much has the upper hand, but the reverse seems to be the case in actual state legislatures. I mean, it looks like the anti-abortion forces who want as few exceptions as possible are still getting their way. At least that’s what ProPublica found.

Kenen: Right. One of the other points that the ProPublica piece made was many of these laws were trigger laws. They were written before Roe was toppled. They were written as just in case, if the Supreme Court lets us do this, we’ll do it. So they were symbolic and they were not necessarily written with a lot of medical input. And they were written by activists, not physicians or obstetricians.

And the resistance to changing them is coming from the same interest groups that want no abortions, who say it’s just not ever medically necessary or so rarely medically necessary, and it is medically necessary at times. I mean, there are people who, and this line saying, “Well, if you’re in trouble, you can’t have an abortion. But if you’re close to death you can,” that can happen in split seconds. You can be in trouble and then really be in real trouble. You can’t predict the course of an individual, and it’s tying the hands for physicians to do what needs to be done until it might be too late.

Knight: I think a lot of them don’t realize, until it starts happening, how many times it is sometimes medically necessary. It’s not even that a woman necessarily wants to get an abortion, it’s just something happens, and it’s safer for her to do that in order to save her life.

Karlin-Smith: And you’ve seen in some of these states, sometimes Republican women prominently coming out and pushing for this and trying to explain why it’s necessary. In some cases, they also have made the argument, too, that sometimes to preserve a woman’s fertility, these procedures are necessary given the current situations they face.

Kenen: There was a quote in that ProPublica story, and it’s not necessarily everybody on the anti-abortion rights side, but this individual was quoted as saying that the baby’s life is more important than the mother’s life. So that’s a judgment that a politician or activist is making. Plus, if the mother dies, the fetus can die too. So it doesn’t even make sense. It’s not even choosing one. I mean, in many cases if the pregnant person dies, the fetus will die.

Rovner: Well, finally this week, I want to give a shout-out to a story by my KFF Health News colleague Darius Tahir, who, by the way, became a father this week. Congratulations, Darius. The story’s about a group called the Progressive Anti-Abortion Uprising that purports to be both anti-abortion and progressively leftist and feminist. One of its goals appears to be to get courts to overturn the federal law that restricts protests in front of abortion clinics. The Freedom of Access to Clinic Entrances Act, known as FACE, is I think the only explicitly abortion rights legislation that became law in the entire 1990s, which makes you wonder if this group is really as leftist and feminist as it says it is, or if it’s just a front to try and go after this particular law.

Kenen: It sets limits of where people can be and tries to police it somewhat. But in Darius’ story, his reporting showed that they did, at least some of them, had ties to right-wing groups. So that they’re calling themselves leftist and progressive … it’s not so clear how accurate that is for everybody involved.

Rovner: Yeah, it was an interesting story that we will link to in the show notes. All right, now it is time for “This Week in Health Misinformation,” and it’s good news for a change. I chose a story from Stat News called “How to Spot When Drug Companies Spin Clinical Trial Results.” It’s actually an update of a 2020 guide that STAT did to interpret clinical trial results, and it’s basically a glossary to help understand company jargon and red flags, particularly in press releases, to help determine if that new medical “breakthrough” really is or not. It is really super helpful if you’re a layperson trying to make sense of this.

OK that is this week’s news, and I now will play my “Bill of the Month” interview with Rachana Pradhan, and then we will come back with our extra credits.

I am pleased to welcome back to the podcast my colleague Rachana Pradhan, who reported and wrote the latest KFF Health News-NPR “Bill of the Month” installment. Always great to see you, Rachana.

Rachana Pradhan: Thanks for having me, Julie.

Rovner: So this month’s patient fell into what’s an all-too-common trap. She went to a lab for routine bloodwork suggested by her doctor without realizing she could be subjected to thousands of dollars in bills she’s expected to pay. Tell us who she is and how she managed to rack up such a big bill for things that should not have cost that much.

Pradhan: So our patient is Reesha Ahmed. She lives in Texas, just in a suburb of the Dallas-Fort Worth area, and what happened to Reesha is she found out she was pregnant and she went to a doctor’s office that she had never gone to before for a standard prenatal checkup, and she also had health insurance. I want to underscore that that is an important detail in this story. So the nurse recommended that Reesha get routine blood tests just down the hall in a lab that was in the adjoining hospital. And it was routine. There was nothing unusual about the blood tests that Reesha received. So what she was advised to do is after her checkup, she was told, “Well, here’s the bloodwork you need, and just go down the hallway here, into the hospital,” to get her blood drawn.

Rovner: How convenient, they have their own lab.

Pradhan: Exactly. And Reesha did what she was told. She got bloodwork done. And then, soon after that, she started getting bills. And they first were small amounts, like there was a bill for $17, and she thought, “OK, well that’s not so bad.” Then she got a bill for over $300 and thought, “That’s unusual. Why would I get billed this?” Then came the huge one. It was over $2,000. In total, Reesha’s overall lab work bills were close to $2,400 for, again, standard bloodwork that every pregnant woman gets when they find out that they’re pregnant. And so she, needless to say, was shocked and immediately actually started trying to investigate herself as to how it was possible for her to get billed such astronomical amounts.

Rovner: And so what did she manage to find out?

Pradhan: She tried taking it up with the hospital and her insurance company. And she just got passed around over and over again. She appealed to her insurance. They denied her appeal saying that, “Well, this bloodwork was diagnostic and not preventive, so it was coded correctly based on the claim that was submitted to us,” and the hospital even sent her to collections for this bloodwork. Unfortunately for Reesha, this pregnancy ended in a miscarriage, and so it was particularly difficult. She was dealing with all the emotional, physical ramifications of that, and then on top of that, having to deal with this billing nightmare is just a lot for any one person to handle. It’s too much, honestly.

Rovner: So we, the experts in this, what did we discover about why she got billed so much?

Pradhan: You can get bloodwork at multiple places in our health system. You could get it maybe within a lab just in your doctor’s office. You can go to an outside lab, like an independent commercial one, to get bloodwork done and you can sometimes get labs within a hospital building. They may not look any different when you’re actually in there, but there’s a huge difference as to how much they will charge you.

Research has shown that if a patient is getting blood tests done, things that are relatively routine and just as a standalone service, hospital outpatient department labs charge much, much more. There’s research that we cite in the story about Reesha that … she lives in Texas … bloodwork in Texas, if it’s done in a hospital outpatient department is at least six times as expensive compared to if you get those same tests in a doctor’s office or in an independent commercial lab.

Rovner: To be clear, I would say it’s not just bloodwork. It’s any routine tests that you get in a hospital outpatient department.

Pradhan: That research, in particular, was looking at blood tests actually, in particular, just any lab work that you might get done. So the conclusion of that is really that there’s no meaningful quality difference. There’s really no difference at all when you get them in a doctor’s office versus a hospital or a lab, and yet the prices you pay will vary dramatically.

Rovner: Yeah, there should be a big sign on the door that says: “This may be more convenient, but if you go somewhere else, you might pay a lot less and so will your insurance.” What eventually happened with Reesha’s bill?

Pradhan: Well, eventually, the charges were waived and zeroed out and she was told that she would not have to pay anything and all the accounts would be zeroed out to nothing.

Rovner: Eventually, after we started asking questions?

Pradhan: Yes. It was a day after I had sent a litany of questions about her billing that they gave her a call and said, “You now won’t have to pay anything.” So it’s a big relief for her.

Rovner: Obviously this was not her fault. She did what was recommended by the nurse in her doctor’s office, but there are efforts to make this more transparent.

Pradhan: Yeah. I think in health care policy world, the issue that she experienced is a reflection of something called site-neutral payment, which essentially means if payment is site-neutral for a health care provider, it means that you get a service and regardless of where you get that service, there is no difference in the amount that you are paying. There are efforts in Congress and even in state legislatures to institute site-neutral pay for certain services.

Bloodwork is one that is not necessarily being targeted, at least in Congress. But I will say, I think one of the big takeaways about what patients can do is if they do get paperwork from your doctor’s office saying, “OK, you need to get some blood tests done,” you can always take that bloodwork request and get it done at an independent lab where the charges will be far, far less than in a hospital-based lab, to avoid these charges.

Rovner: Think of it like a prescription.

Pradhan: Exactly. It might not be as convenient in that moment. You might have to drive somewhere, you can’t just walk down a hallway and get your blood tests and labs done, but I think you will potentially avoid exorbitant costs, especially for bloodwork that is very standard and is not costly.

Rovner: Yet another cautionary tale. Rachana Pradhan, thank you very much.

Pradhan: Thanks for having me, Julie.

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. Sarah, you offered up the first extra credit this week. Why don’t you go first?

Karlin-Smith: Sure. I took a look at a ProPublica piece by Maya Miller and Robin Fields, “Insurance Executives Refused to Pay for the Cancer Treatment That Could Have Saved Him. This Is How They Did It.” And it tells the story of a Michigan man who had cancer, and the last resort treatment for him was CAR-T, which is a cellular therapy where they basically take some of your cells, reengineer them, and put them back into your body, and it is quite expensive and it can come with a lot of expensive side effects as well.

FDA considers it a drug, and Michigan state law requires cancer drugs be covered. The insurance company of this man, basically on a technicality, denied it, describing it as a gene therapy, and he did die before he was able to fully push this battle with the insurance company and get access to the treatment and so forth. But I think the piece raises these broader issues about [how] few states are able to proactively monitor whether insurance plans are properly implementing the laws around what is supposed to be covered and not covered.

Few people really have the knowledge or skill set, particularly when you’re dealing with devastating diseases like cancer, which are just taking all of your energy just to go through the treatment, to figure out how to fight the system. And it really demonstrates the huge power imbalances people face in getting health care, even if there are laws that, in theory, seem like they’re supposed to be protected.

I also thought there’s some really interesting statistics in the story about, yes, even though the price tag for these products are really expensive, that the health insurance company actually crunched the numbers and found that if they shifted the cost to premiums in their policyholders, it would lead to, like, 17 cents a month per premium. So I thought that was interesting, as well, because it gives you a sense of, again, where their motivation is coming from when you boil it down to how the costs actually add up.

Rovner: And we will, I promise, talk about the growing backlash against insurance company behavior next week. Victoria.

Knight: So my extra-credit article is a Business Insider story in which I’m quoted, but the title is “Washington’s Secret Weapon Is a Beloved Gen Z Energy Drink With More Caffeine Than God.” And it basically talks about the phenomenon of Celsius popping up around the Hill. So it’s an energy drink that contains 200 milligrams of caffeine. It tastes like sparkling water, it’s fruity, but it’s not like Monster or Red Bull. It tastes way better than them, which I think is partly why it’s become so popular.

But anyways, I’ve only been on the Hill reporting for about a year and in the past couple months it has really popped up everywhere. It’s all around in the different little stores within the Capitol complex, there’s machines devoted to it. So it talks about how that happened. And I personally drink almost one Celsius a day. I’m trying to be better about it, but the Hill is a hard place to work, and you’re running around all the time, and it just gets you as much caffeine as you need in a quick hit. But the FDA does recommend about 400 milligrams a day. So if you drink two, then you’re not going over the recommendation.

Rovner: Well, you can’t drink anything else with caffeine if you drink two.

Knight: That’s true. And I do drink coffee in the morning, but it has some funny quotes to our members of Congress and chiefs of staff and reporters about how we all rely on this energy drink to get through working on the Hill.

Rovner: I just loved this story because, forever, people wonder how these things happen in the middle of the night. It’s not the members, it’s the staff who are going 16 and 20 hours a day, and they’ve always had to rely on something. So, at least now, it’s something that tastes better.

Knight: It does taste better.

Rovner: That’s why it amused me, because it’s been ever thus that you cannot work the way Capitol Hill works without some artificial help, shall we say. Joanne.

Kenen: We used to just count how many pizza boxes were being delivered to know how long a night it was going to be. I guess now you count how many empty cans of Celsius.

Knight: Exactly.

Rovner: I personally ran more on sugar than caffeine.

Kenen: OK. This is a piece by Judy Graham of KFF Health News, and the headline is “A Life-Changing Injury Transformed an Expert’s View on Disability Services.” And it’s about a woman many of us know, actually Julie and I both know: Nora Super. I’ve known her for a long time. She’s an expert on aging. She ran one of the White House aging conferences. She worked at Milken for a long time. She worked at AARP for a while.

She’s in her late 50s now, and in midlife, she started having really severe episodes of depression, and she became very open about it, she became an advocate. Last summer, she had another episode and she couldn’t get an appointment for the treatment she needed quickly enough. And while she was waiting, which is the story of American health care right now, and while she was waiting for it, she did try to take her own life. She survived, but she now has no sensation from the waist down.

And her husband is a health economist, and I should disclose, my former boss at one point, I worked for and with Len for two years, Len Nichols. So this is a story about how she has now become an advocate for disability. And this is a couple with a lot of resources. I mean both knowledge, connections, and they’re not gazillionaires, but they have resources, and how hard it has been for them even with their resources and connections. And so now Nora who, when she’s well, she’s this effervescent force of nature, and this is how she is turning — her prognosis, it could get better, they don’t know yet — but clearly an extraordinarily difficult time. And she has now taken this opportunity to become not just an advocate for the aging and not just an advocate for people with severe depression, but now an advocate for people with severe disability.

Rovner: Yeah, I mean, it’s everything that’s wrong with the American health care system, and I will say that a lot of what I’ve learned about health policy over very many years came from both Len Nichols and Nora, his wife. So they do know a lot. And I think what shocked me about the story is just how expensive some of the things are that they need. And, again, this is a couple who should be well enough off to support themselves, but these are costs that basically nobody could or should have to bear.

Kenen: Even … it was just a lift to get her into their car, just that alone was $6,500. And there are many, many, many things like that. And then another thing that they pointed out in the article is that most physicians don’t have a way of getting somebody from a wheelchair onto the examining table other than having her 70-year-old husband hoist her. So that was one of the many small revelations in this story. Obviously, it’s heartbreaking because I know and like her, but it’s also another indictment of why we just don’t do things right.

Rovner: Yes. Where we are. Well, my story is yet another indictment of not doing things right. It’s by my colleagues Katheryn Houghton, Rachana Pradhan, who you just heard, and Samantha Liss, and it’s called “Medicaid ‘Unwinding’ Makes Other Public Assistance Harder to Get.” And it’s just an infuriating story pointing out that everything we’ve talked about all year with state reviews of Medicaid eligibility, the endless waits on hold with call centers, lost applications, and other bureaucratic holdups, goes for more than just health insurance. The same overworked and under-resourced people who determine Medicaid eligibility are also the gatekeepers for other programs like food stamps and cash welfare assistance, and people who are eligible for those programs are also getting wrongly denied benefits.

Among the people quoted in the story was DeAnna Marchand of Missoula, Montana, who is trying to recertify herself and her grandson for both Medicaid and SNAP (food stamps), but wasn’t sure what she needed to present to prove that eligibility. So she waited to speak to someone and picking up from the story, “After half an hour, she followed prompts to schedule a callback, but an automated voice announced slots were full and instructed her to wait on hold again. An hour later, the call was dropped.” It’s not really the fault of these workers. They cannot possibly do what needs to be done, and, once again, it’s the patients who are paying the price.

All right, 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 this week to Zach Dyer for filling in as our technical guru while Francis [Ying] takes some much-deserved time off. Also, as always, you can email us your questions or comments. We are at whatthehealth@kff.org. Or you can still find me at X, for now, @jrovner, or @julierovner at Bluesky and Threads. Joanne.

Kenen: I’m mostly at Threads, @joannekenen1. Occasionally I’m still on X, but not very often, that’s @JoanneKenen.

Rovner: Sarah.

Karlin-Smith: I am @SarahKarlin, or @sarahkarlin-smith, depending on the platform.

Rovner: Victoria.

Knight: I am @victoriaregisk [on X and Threads]. Still mostly on X, but also on Threads at the same name.

Rovner: We’re all trying to branch out. We will be back in your feed next week. Until then, be healthy.

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“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…

For her and millions of other Americans, that’s the most common cause of hypothyroidism, a condition in which the thyroid, a butterfly-shaped gland in the neck, doesn’t produce enough of the hormones needed for the body to regulate metabolism.

There’s no cure for Hashimoto’s or hypothyroidism. But VanOrden, who lives in Athens, Texas, started taking levothyroxine, a much-prescribed synthetic thyroid hormone used to treat common symptoms, like fatigue, weight gain, hair loss, and sensitivity to cold.

Most patients do well on levothyroxine and their symptoms resolve. Yet for others, like VanOrden, the drug is not as effective.

For her, that meant floating from doctor to doctor, test to test, and treatment to treatment, spending about $5,000 a year.

“I look and act like a pretty energetic person,” said VanOrden, 38, explaining that her symptoms are not visible. “But there is a hole in my gas tank,” she said. And “stress makes the hole bigger.”

Autoimmune diseases occur when the immune system mistakenly attacks and damages healthy cells and tissues. Other common examples include rheumatoid arthritis, lupus, celiac disease, and inflammatory bowel disease. There are more than 80 such diseases, affecting up to an estimated 50 million Americans, disproportionately women. Overall, the cost of treating autoimmune diseases is estimated at more than $100 billion annually in the U.S.

Despite their frequency, finding help for many autoimmune diseases can prove frustrating and expensive. Getting diagnosed can be a major hurdle because the range of symptoms looks a lot like those of other medical conditions, and there are often no definitive identifying tests, said Sam Lim, clinical director of the Division of Rheumatology at Emory University School of Medicine in Atlanta. In addition, some patients feel they have to fight to be believed, even by a clinician. And after a diagnosis, many autoimmune patients rack up big bills as they explore treatment options.

“They’re often upset. Patients feel dismissed,” Elizabeth McAninch, an endocrinologist and thyroid expert at Stanford University, said of some patients who come to her for help.

Insufficient medical education and lack of investment in new research are two factors that hinder overall understanding of hypothyroidism, according to Antonio Bianco, a University of Chicago endocrinologist and leading expert on the condition.

Some patients become angry when their symptoms don’t respond to standard treatments, either levothyroxine or that drug in combination with another hormone, said Douglas Ross, an endocrinologist at Massachusetts General Hospital in Boston. “We will have to remain open to the possibility that we’re missing something here,” he said.

Jennifer Ryan, 42, said she has spent “thousands of dollars out-of-pocket” looking for answers. Doctors did not recommend thyroid hormone medication for the Huntsville, Alabama, resident — diagnosed with Hashimoto’s after years of fatigue and weight gain — because her levels appeared normal. She recently switched doctors and hopes for the best.

“You don’t walk around hurting all day long and have nothing wrong,” Ryan said.

And health insurers typically deny coverage of novel hypothyroidism treatments, said Brittany Henderson, an endocrinologist and founder of the Charleston Thyroid Center in South Carolina, which sees patients from all 50 states. “Insurance companies want you to use the generics even though many patients don’t do well with these treatments,” she said.

Meanwhile, the extent of Americans’ thyroid problems can be seen in drug sales. Levothyroxine is among the five most prescribed medications in the U.S. every year. Yet research points to some overprescribing of the drug for those with mild hypothyroidism.

A recent study, paid for by AbbVie — maker of Synthroid, a brand-name version of levothyroxine — said a medical and pharmacy claims database showed that the prevalence of hypothyroidism, including milder forms, rose from 9.5% of Americans in 2012 to 11.7% in 2019.

The number of people diagnosed will rise as the population ages, said McAninch. Endocrine disruptors — natural or synthetic chemicals that can affect hormones — could account for some of that increase, she said.

In their search for answers, patients sometimes connect on social media, where they ask questions and describe their thyroid hormone levels, drug regimens, and symptoms. Some online platforms offer information that’s dubious at best, but overall, social media outlets have increased patients’ understanding of hard-to-resolve symptoms, Bianco said.

They also offer one another encouragement.

VanOrden, who has been active on Reddit, has this advice for other patients: “Don’t give up. Continue to advocate for yourself. Somewhere out there is a doctor who will listen to you.” She has started an alternative treatment — desiccated thyroid medication, an option not approved by the FDA — plus a low dose of the addiction drug naltrexone, though the data is limited. She’s feeling better now.

Research of autoimmune thyroid disease gets little funding, so the underlying causes of immune dysfunction are not well studied, Henderson said. The medical establishment hasn’t fully recognized hard-to-treat hypothyroid patients, but increased acknowledgment of them and their symptoms would help fund research, Bianco said.

“I would like a very clear, solid acknowledgment that these patients exist,” he said. “These people are real.”

For an illustrated version of this article, click here.

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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Mary Agnes Carey
KFF Health News

@maryagnescarey

Read Mary Agnes' stories

Partnerships Editor and Senior Correspondent, oversees placement of KFF Health News content in publications nationwide and covers health reform and federal health policy. Before joining KFF Health News, Mary Agnes was associate editor of CQ HealthBeat, Capitol Hill Bureau Chief for Congressional Quarterly, and a reporter with Dow Jones Newswires. A frequent radio and television commentator, she has appeared on CNN, C-SPAN, the PBS NewsHour, and on NPR affiliates nationwide. Her stories have appeared in The Washington Post, USA Today, TheAtlantic.com, Time.com, Money.com, and The Daily Beast, among other publications. She worked for newspapers in Connecticut and Pennsylvania, and has a master’s degree in journalism from Columbia University.

In most states, open enrollment for plans on the Affordable Care Act exchange — also known as Obamacare — began Nov. 1 and lasts until Dec. 15, though some states go longer. With premiums expected to increase by a median of 6%, consumers who get their health coverage through the federal or state ACA marketplaces are encouraged to shop around. Because of enhanced subsidies and cost-sharing assistance, they might save money by switching plans.

Meanwhile, Ohio is yet again an election-year battleground state. A ballot issue that would provide constitutional protection to reproductive health decisions has become a flashpoint for misinformation and message testing.

This week’s panelists are Mary Agnes Carey of KFF Health News, Jessie Hellmann of CQ Roll Call, Joanne Kenen of the Johns Hopkins Bloomberg School of Public Health and Politico, and Rachana Pradhan of KFF Health News.

Panelists

Jessie Hellmann
CQ Roll Call

@jessiehellmann

Read Jessie's stories

Joanne Kenen
Johns Hopkins Bloomberg School of Public Health and Politico

@JoanneKenen

Read Joanne's stories

Rachana Pradhan
KFF Health News

@rachanadpradhan

Read Rachana's stories

Among the takeaways from this week’s episode:

• Open enrollment for most plans on the Affordable Care Act exchange — also known as Obamacare — began Nov. 1 and lasts until Dec. 15, though enrollment lasts longer in some states. With premiums expected to increase by a median of 6%, consumers are advised to shop around. Enhanced subsidies are still in place post-pandemic, and enhanced cost-sharing assistance is available to those who qualify. Many people who have lost health coverage may be eligible for subsidies.
• In Ohio, voters will consider a ballot issue that would protect abortion rights under the state constitution. This closely watched contest is viewed by anti-abortion advocates as a testing ground for messaging on the issue. Abortion is also key in other races, such as for Pennsylvania’s Supreme Court and Virginia’s state assembly, where the entire legislature is up for election.
• Earlier this week, President Joe Biden issued an executive order that calls on federal agencies, including the Department of Health and Human Services, to step into the artificial intelligence arena. AI is a buzzword at every health care conference or panel these days, and the technologies are already in use in health care, with insurers using AI to help make coverage decisions. There is also the recurring question, after many hearings and much discussion: Why hasn’t Congress acted to regulate AI yet?
• Our health care system — in particular the doctors, nurses, and other medical personnel — hasn’t recovered from the pandemic. Workers are still burned out, and some have participated in work stoppages to make the point that they can’t take much more. Will this be the next area for organized labor, fresh from successful strikes against automakers, to grow union membership? Take pharmacy workers, for instance, who are beginning to stage walkouts to push for improvements.
• And, of course, for the next installment of the new podcast feature, “This Week in Medical Misinformation:” The official government website of the Republican-controlled Ohio Senate is attacking the proposed abortion amendment in what some experts have said is a highly unusual and misleading manner. Headlines on its “On The Record” blog include “Abortion Is Killing the Black Community” and say the ballot measure would cause “unimaginable atrocities.” The Associated Press termed the blog’s language “inflammatory.”

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

Mary Agnes Carey: Stat News’ “The Health Care Issue Democrats Can’t Solve: Hospital Reform,” by Rachel Cohrs.

Jessie Hellmann: The Washington Post’s “Drugstore Closures Are Leaving Millions Without Easy Access to a Pharmacy,” by Aaron Gregg and Jaclyn Peiser.

Joanne Kenen: The Washington Post’s “Older Americans Are Dominating Like Never Before, but What Comes Next?” by Marc Fisher.

Rachana Pradhan: The New York Times’ “How a Lucrative Surgery Took Off Online and Disfigured Patients,” by Sarah Kliff and Katie Thomas.

Click to open the Transcript

Transcript: For ACA Plans, It’s Time to Shop Around

[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.]

Mary Agnes Carey: Hello, and welcome back to “What the Health?” I’m Mary Agnes Carey, partnerships editor for KFF Health News, filling in this week for Julie Rovner. I’m joined by some of the best and smartest health reporters in Washington. We’re taping this week on Thursday, Nov. 2, at 10 a.m. ET. As always, news happens fast, and things might’ve changed by the time you hear this.

We are joined today via video conference by Joanne Kenen of the Johns Hopkins Bloomberg School of Public Health and Politico.

Joanne Kenen: Hi, everybody.

Carey: Jessie Hellmann, of CQ Roll Call.

Jessie Hellmann: Hey there.

Carey: And my KFF Health News colleague Rachana Pradhan.

Rachana Pradhan: Thanks for having me.

Carey: It’s great to have you here. It’s great to have all of you here. Let’s start today with the Affordable Care Act. If you’re interested in enrolling in an ACA plan for coverage that begins Jan. 1, it’s time for you to sign up. The ACA’s open enrollment period began Nov. 1 and lasts through Dec. 15 for plans offered on the federal exchange, but some state-based ACA exchanges have longer enrollment periods. Consumers can go online, call an 800 number, get help from an insurance broker or from other ACA navigators and others who are trained to help you research your coverage options, help you find out if you qualify for a subsidy, or if you should consider changing your ACA plan.

What can consumers expect this year during open enrollment? Are there more or fewer choices? Are premiums increasing?

Hellmann: So, I saw the average premium will increase about 6%. So people are definitely going to want to shop around and might not necessarily just want to stick with the same plan that they had last year. And we’re also going to continue seeing the enhanced premiums, subsidies, that Congress passed last year that they kind of stuck with after the pandemic. So subsidies might be more affordable for people — I’m sorry, premiums might be more affordable for people. There’s also some enhanced cost-sharing assistance.

Carey: So it kind of underscores the idea that if you’re on the ACA exchange, you really should go back and take a look, right? Because there might be a different deal out there waiting.

Kenen: I think the wrinkle — this may be what you were just about to ask — but the wrinkle this year is the Medicaid disenroll, the unwinding. There are approximately 10 million, 10 million people, who’ve been disenrolled from Medicaid. Many of them are eligible for Medicaid, and at some point hopefully they’ll figure out how to get them back on. But some of those who are no longer eligible for Medicaid will probably be eligible for heavily subsidized ACA plans if they understand that and go look for it.

This population has been hard to reach and hard to communicate with for a number of reasons, some caused by the health system, not the people, or the Medicaid system, the states. They do have a fallback; they have some extra options. But a lot of those people should click and see what they’re eligible for.

Pradhan: One thing, kind of piggybacking on what Joanne said, that I’m really interested in: Of course, right now is a time when people can actively sign up for ACA plans. But the people who lost Medicaid, or are losing Medicaid — technically, the state Medicaid agency, if they think that a person might qualify for an ACA plan, they’re supposed to automatically transfer those people’s applications to their marketplace, whether it’s healthcare.gov or a state-based exchange. But the data we have so far shows really low enrollment rates into ACA plans from those batches of people that are being automatically transferred. So I’m really curious about whether that’s going to improve and what does enrollment look like in a few months to see if those rates actually increase.

Carey: I’m also wondering what you’re all picking up on the issue of the provider networks. How many doctors and hospitals and other providers are included in these plans? Are they likely to be smaller for 2024? Are they getting bigger? Is there a particular trend you can point to?

I know that sometimes insurers might reduce the number of providers, narrow that network, for example to lower costs. So I guess that remains to be seen here.

Kenen: I haven’t seen data on the ACA plans, and maybe one of the other podcasters has. I haven’t seen that. But we do know that in certain cities, including the one we all live in [Washington, D.C.], many doctors are stopping, are no longer taking insurance. I mean, it’s not most, but the number of people who are dropping being in-network in some of the major networks that we are used to, I think we have all encountered that in our own lives and our friends’ and families’ lives. There are doctors opting out, or they’re in but their practices are closed; they’re not taking more patients, they’re full.

I don’t want to pretend I know how much worse it is or isn’t in ACA plans, but we do know that this is a trend for multiple years. In some parts of the country, it’s getting worse.

Hellmann: Yeah, the Biden administration has been doing some stuff to try to address some of these problems. Last year there were some rules requiring health plans have enough in-network providers that meet specific driving time and distance requirements. So, they are trying to address this, but I wouldn’t be surprised if some of these plans’ networks are still pretty narrow.

Pradhan: Yeah. I mean, I think the concern for a while now with ACA plans is because insurance companies can’t do the things that they did a decade ago to limit premium increases, etc., one of the ways they can keep their costs down is to curtail the number of available providers for someone who signs up for one of these plans. So, like Jessie, I’m curious about how those new rules from last year will affect whether people see meaningful differences in the availability of in-network providers under specific plans.

Carey: That and many other trends are worth watching as we head into the open enrollment season. But right now, I’d like to turn to another topic in the news, and that’s abortion. “What the Health?” listeners know that last week your host, Julie Rovner, created a new segment that she’s calling “This Week in Health Care Misinformation.” Here’s this week’s entry.

A measure before Ohio voters next Tuesday, that’s Nov. 7, would amend Ohio’s constitution to guarantee the right to reproductive health care decisions, including abortion. Abortion rights opponents say the measure is crafted too broadly and should not be approved. The official government website of the Republican-controlled Ohio Senate is attacking the proposed abortion amendment in what some experts have said is a highly unusual and misleading manner. Headlines on the “On The Record” blog — and that’s what it’s called, “On The Record”; this is on the Ohio state website — it makes several claims about the measure that legal and medical experts have told The Associated Press were false or misleading. Headlines on this site include, and I’m quoting here, “Abortion Is Killing the Black Community” and that the proposal would cause, again, another quote, “unimaginable atrocities.” Isn’t it unusual for an official government website to operate in this manner?

Pradhan: I think yes, as far as we know, and that’s really scary. It’s hard enough these days to sort out what is legitimate and what isn’t. We’ve seen AI [artificial intelligence] used in other political campaign materials in the forms of altered videos, photographs, etc. But now this is a really terrifying prospect, I think, that you could provide misinformation to voters — particularly in close races, I would say, that you could really swing an outcome based on what people are being told.

Kenen: The other thing that’s being said in Ohio by the Republicans is that the measure would allow, quote, “partial-birth abortions,” which is a particular — it’s a phrase used to describe a particular type of late-term abortion that’s illegal. Congress passed legislation, I think it’s 15 to 20 years ago now, and it went through the courts and it’s been upheld by the courts. This measure in Ohio does not undo federal law in the state of Ohio or anywhere else. So that’s not true. And that’s another thing circulating.

Carey: This discussion is very important. And to Rachana’s point, how voters perceive this is very important because Ohio is serving as a testing ground for political messaging headed into the presidential race next year. And abortion groups are trying to qualify initiatives in more states in 2024, potentially including Arizona. So even if you haven’t followed this story closely, I mean, how do you think this tactic may influence voters? Again, you’re talking about something — when you hit a news tab on an official state website, you come to this blog. Do you think voters will reject it? Could it possibly influence them — as you were talking about earlier, tip the results?

Kenen: Well, I don’t think we know how it’s going to tip, because I don’t know how many people actually read the state legislature blog.

Carey: Yeah, that could be an issue.

Kenen: Although, and the coverage of it, one would hope, in the state media would point out that some of these claims are untrue. But I mean, it’s taking — you know, the Republicans have lost every single state ballot initiative on abortion, and it’s been a winning issue for the Democrats and they’re trying to reframe it a little bit, because while polls have shown — not just polls, but voting behavior has shown — many Americans want abortion to remain legal, they aren’t as comfortable with late-term abortions, with abortions in the final weeks or months of pregnancy. So this is trying to shift it from a general debate over banning abortion, which is not popular in the U.S., to an area where there’s softer support for abortions later during pregnancy.

And polls have shown really strong support for abortion rights. But this is an area that is not as strong, or a little bit more open to maybe moving people. And if the Republicans succeed in portraying this as falsely allowing a procedure that the country has decided to ban, I think that’s part of what’s going on, is to shift the definition, shift the terms of debate.

Carey: As we know, Ohio is not the only state where abortion is taking center stage. For example, in Pennsylvania, abortion is a key issue in the state Supreme Court justice election, and it’s a test case of political fallout from the Supreme Court, the United States Supreme Court’s decision last summer to overrule Roe v. Wade. In Texas, the state is accusing Planned Parenthood of defrauding the Republican-led state’s Medicaid health insurance program. And in Kansas, in a victory for abortion rights advocates, a judge put a new state law on medication abortions on hold and blocked other restrictions governing the use and distribution of these medications and imposed waiting periods.

And of course, abortion remains a huge issue on Capitol Hill, with House Republicans inserting language into many spending bills to restrict abortion access, to block funding for HIV prevention, contraception, global health programs, and so on. So, which of these cases, or others maybe that you are watching, do you think will be the strongest indicators of how the abortion battle will shake out for the rest of this year and into 2024?

Pradhan: I’m actually going to make a plug for another one that we didn’t mention, which is for our local, D.C.-area listeners, Virginia next week has a state legislative election. So, Gov. [Glenn] Youngkin of course is still — he’s not up for reelection; he’ll sit one single four-year term, but the entire Virginia General Assembly is up for election. So currently Gov. Youngkin says that he wants to institute a 15-week abortion ban, but Republicans would need to control every branch of government, which they do not currently, but it is possible that they will after next week. So that would be a big change as you see abortion restrictions that have proliferated, especially throughout the South and the Midwest. But now Virginia so far has not, in the wake of last year’s Dobbs [v. Jackson Women’s Health Organization] decision, has not imposed greater restrictions on access to abortion.

But I think the 15-week limit also provides kind of a test case, I think, for whether Republicans might be able to coalesce around that standard as opposed to something more aggressive like, say, a total ban or a six-week ban that’s obviously been instituted in certain states but I think at a national level right now is a nonstarter. I’m pretty interested in seeing what happens even in a lot of our own backyard.

Kenen: Because Virginia’s really tightly divided. I mean, the last few elections. This was a traditional Republican state that has become a purple state. And the last few state legislature elections, didn’t they once decide by drawing lots? It was so close. I mean it’s flipped back. It’s really, really, really tiny margins in both houses. I think Rachana lives there and knows the details better than I do. But it’s razor-thin, and it was Republican-controlled for a long time and Democrats, what, have one-seat-in-the-Senate control? Something like that, a very narrow margin. And they may or may not keep it.

Pradhan: Joanne, your memory’s so good, because they had —

Kenen: Because I edited your stories.

Pradhan: You did. I know. And they had to draw names out of a bowl that was— it was in a museum. It was something that a Virginia potter had made and they had to take it out of a museum exhibit. I mean, it was the most — it’s really fascinating what democracy can look like in this country when it comes down to it. It was such a bizarre situation to decide control of the state House. So you’re very right, so it’s very close.

Kenen: It’s also worth pointing out, as we have in prior weeks, that 15 weeks is now being offered as this sort of moderate position, when 15 weeks — a year ago, that’s what the Supreme Court case was really about, the case we know as Dobbs. It was about a law in Mississippi that was a 15-week ban. And what happened is once the courts gave the states the go-ahead, they went way further than 15 weeks. I don’t know how many states have a 15-week ban, not many. The anti-abortion states now have sort of six weeks-ish or less. North Carolina has 12, with some conditions. So 15 weeks is now Youngkin saying, “Here’s the middle ground.” I mean, even when Congress was trying to do a ban, it was 20, so — when they had those symbolic votes, I think it was always 20. He’s changed the parameters of what we’re talking about politically.

Carey: Jessie, how do you see the abortion riders on these appropriations bills, particularly in the House. House Republicans have put a lot of this abortion language into the approps bills. How do you see that shaking out, resolving itself, as we look forward?

Hellmann: It is hard to see how some of these riders could become law, like the one in the FDA-Ag approps bill that would basically ban mailing of mifepristone, which can be used for abortions. Even some moderate Republicans who are really against that rider — I mean just a handful, but it’s enough where it should just be a nonstarter. So I’m just not sure how I can see a compromise on that right now. And I definitely don’t see how that could pass the Senate. So it’s just everything has become so much more contentious since the Roe decision. And things that weren’t contentious before, like the PEPFAR [The United States President’s Emergency Plan for AIDS Relief] reauthorization, are now being bogged down in abortion politics. It’s hard to see how the two sides can come to an agreement at this point.

Carey: Yes, contentious issues are everywhere. So, let’s switch from abortion to AI. Earlier this week, President Biden issued an executive order that calls on several federal agencies, including the Department of Health and Human Services, to create regulations governing the use of AI, including in health care. What uses of AI now in health care, or even future uses, are causing the greatest concern and might be the greatest focus of this executive order? And I’m thinking of things that work well in AI or are accepted, and things that maybe aren’t accepted at this point or people are concerned about.

Kenen: I think that none of us on the panel are super AI experts.

Carey: Nor am I, nor am I.

Kenen: But we are all following it and learning about it the way everybody else is. I think this is something that Vice President Harris pointed out in a summit in London on AI yesterday. There’s a lot of focus on the existential, cosmic scary stuff, like: Is it going to kill us all? But there’s also practical things right now, particularly in health care, like using algorithms to deny people care. And there’s been some exposés of insurance doing batch denials based on an AI formula. There’s concerns about — since AI is based on the data we have and the data, that’s the foundation, that’s the edifice. So the data we have is flawed, there’s racial bias in the data we have. So how do you make sure the algorithms in the future don’t bake in the inequities we already have? And there’s questions too about AI is already being used clinically, and how well does it really work? How reliable are the studies and the data? What do we know or not know before we start?

I mean, it has huge potential. There are risks, but it also has huge potential. So how do we make sure that we don’t have exaggerated happy-go-lucky mistrust in technology before we actually understand what it can and cannot do and what kind of safeguards the government —and the European governments as well; it’s not just us, and they may do a better job — are going to be in place so that we have the good without … The goal is sort of, to be really simplistic about it, is let’s have the good without the bad, but doing it is challenging.

Carey: Oh, Rachana, please.

Pradhan: Well, all I was going to say was nowadays you cannot go to a health care conference or a panel discussion without there being some session about AI. I guess it demonstrates the level of interest. It kind of reminds me of every few years there’s a new health care unicorn. So there was ACOs [accountable care organizations] for a long time; that’s all people would talk about. Or value-based care, like every conference you went to. And then with covid, and for other reasons, everyone is really big on equity, equity, equity for a long time. And now it’s like AI is everywhere.

So like Joanne said, I mean, we have everything from a chatbot that pops up on your screen to answer even benign questions about insurance. That’s AI. It’s a form of AI. It’s not generative AI, but it is. And yeah, I mean, insurance companies use all sorts of algorithms and data to make decisions about what claims they’re going to pay and not pay. So yeah, I think we all just have to exercise some skepticism when we’re trying to examine how this might be used for good or bad.

Kenen: I just want a robot to clean my kitchen. Why doesn’t anyone just handle the … Silicon Valley does the really important stuff.

Carey: That would be a use for good in your house, in my house, in all our houses.

Kenen: Yeah.

Carey: So, while we’re understandably and admittedly not AI experts, we are experts on Congress here. And the president did say in his announcement earlier this week that Congress still needs to act on this issue. Why haven’t they done it yet? They’ve had all these hearings and all this conversation about crafting rules around privacy, online safety, and emerging technologies. Why no action so far? And any bets on whether it may or may not happen in the near future?

Hellmann: I think they don’t know what to do. We’ve only, as a country, started really talking about AI at kitchen tables, to use a cliche, this year. And so Congress is always behind the eight ball on these issues. And even if they are having these member meetings and talking about it, I think it could take a long time for them to actually pass any meaningful legislation that isn’t just directing an agency to do a study or directing an agency to issue regulations or something that could have a really big impact.

Carey: Excellent. Thank you. So let’s touch briefly — before we wrap, I really do want to get to this point and some of the stuff we continue to see in the news about health care workers under fire. It’s certainly not easy to be a health care worker these days. New findings published by the Centers for Disease Control and Prevention show that, in 2022, 13.4% of health workers said they had been harassed at work. That’s up from 6.4% in 2018. That’s more than double the rate of workplace harassment compared to pre-pandemic times, the CDC found.

We’ve talked about this before. It’s worth revisiting again. What is going on with our health care workforce? And what do these kind of findings mean for keeping talented people in the workforce, attracting new people to join?

Hellmann: Has anyone actually caught a break after the pandemic?

Carey: That’s a good point.

Hellmann: I mean, covid is still out there, but I don’t think that our health care system has really recovered from that. People have left the workforce because they’re burned out. People still feel burned out who stuck around, and I don’t know if they really got any breaks or the support that they needed. There’s just kind of this recognition of people being burned out. But I don’t know how much action there is to address the issue.

I feel like sometimes that leads to more burnout, when you see executives and leaders acknowledging the problem but then not really doing much to address it.

Carey: Well, that’s certainly been the complaint by pharmacy staff and others and pharmacists at some of the large drugstore chains, retail chains, that have gone out on strike. They’ve had these two- and three-day strikes recently. So, I’m assuming that will continue, unfortunately, for all the reasons that Jessie just laid out.

Pradhan: Actually, kind of going back to the strikes from pharmacists, I was thinking about this earlier because we’ve seen recently, I think separately in the news when it comes to labor unions, and maybe this will have some bearing, maybe not, but the United Auto Workers strike — I mean, they extracted some of the largest concessions from automakers as far as pay increases. And people are seeing, they really got a victory after striking for weeks. And I think people, at least the coverage that I’ve seen has talked about how that union win might not just catalyze greater labor union involvement, not just in the auto industry but in other parts of the country and other sectors.

And so, I’m not sure what percentage of pharmacists are part of labor unions, but I think people have sort of said more recently that organized labor is having a moment, or has been, that it has not in a while. And so, I’ll be fascinated to see whether there’s a greater appetite among pharmacists to actually be part of a labor union and sort of whether that results in greater demands of some of these corporate chains. As we know — we can talk about this I think in a little bit — but the corporate chains have really taken over pharmacies in America, and rural pharmacies are really dying off. And so that has a lot of important implications for the country.

Kenen: I think the problems with the health care workforce are not all things that labor unions can address, because some of it is how many hours you work and what kind of shifts you have and how often they change and things that — yeah, I mean, labor is having a moment, Rachana’s right. But they’re also tied to larger demographic trends, with an aging society. It’s tied to, our whole system is geared toward the, like dean of nursing at [Johns] Hopkins Sarah Szanton is always talking about, it’s not so much not having enough nurses; we’ve got them in the wrong places. If we did more preventive care and community care and chronic disease management in the community, you wouldn’t have so many people in the hospital in the first place where the workforce crisis is.

So some of these larger issues of how do we have a better health care system; labor negotiations can address aspects of it. Nursing ratios are controversial, but that’s a labor issue. It’s a regulatory issue as well. But our whole system’s so screwed up now that Jessie’s right, nobody recovered from the strains of the pandemic in many sectors, probably all sectors of society, but obviously particularly brutal on the health care workforce. We didn’t get to hit pause and say, OK, nobody get sick for six months while we all recover. The unmet psychiatric needs. I mean, it’s just tons of stuff is wrong, and it’s manifesting itself in a workforce crisis. So maybe if you don’t have anyone to take care of you, maybe people will pay attention to the larger underlying reasons for that.

Carey: That’s an issue I’m sure we will talk more about in the future because it’s just not going anywhere. But for now, we’re going to turn to our extra credit segment. That’s when we each recommend a story we read this week and 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.

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

Kenen: Well, speaking of which, after we just talked about, there’s a piece in The Washington Post by Marc Fisher. It has a long headline: “Older Americans Are Dominating Like Never Before, but What Comes Next?” And basically it’s talking about not so much the nursing and physician workforce, although that’s part of it, just the workforce in general. We have more people working longer, and in areas where there’s shortages, there’s nothing wrong with having old people. A lot of communities have shortages of school bus drivers. So if you have a lot of older school bus drivers and they’re safe and like kids and like driving the bus, more power to them. If you’re 55 and you can drive a school bus full of nine-year-olds, middle schoolers, so much more.

Carey: Good luck with that one.

Kenen: But some of the physician specialties — one of the people in the story is a palliative care physician who retired and isn’t happy retired and wants to go back to work. And that’s another area where we need more people. But it’s a cultural shift, like, who’s doing what when, and how does it affect the younger generation? Although there was a reference to Angelina Jolie being on the old side at 48. I guess for an actress that might be old. But that wasn’t the gist of it. But we have this shift toward older people in many places, not just Trump and Biden. It’s sort of the whole workforce.

Carey: Got it. Jessie.

Hellmann: My extra credit is also a story from The Washington Post. It’s called “Drugstore Closures Are Leaving Millions Without Easy Access to a Pharmacy.” Focused specifically on some of the big national chains like CVS and Walgreens and Rite Aid, which have really kind of dominated the drugstore space over the past few decades. But now they are dealing with the repercussions from all these lawsuits that are being filed alleging they had a role in the opioid epidemic. And the story just kind of looks at the consequences of that.

These aren’t just places people get prescriptions. They rely on them for food, for medical advice, especially in rural and underserved areas. So yeah, I just thought it was a really interesting look at that issue.

Carey: Rachana?

Pradhan: So my extra credit is a story in The New York Times called “How a Lucrative Surgery Took Off Online and Disfigured Patients.” It’s horrifying. It’s a story about surgeons who are performing a complex type of hernia surgery and evidently are learning their techniques, or at least a large share of them are learning their techniques, by watching videos on social media. And the techniques that are demonstrated there are not exactly high quality. So the story digs into resulting harm to patients.

Kenen: And it’s unnecessary surgery in the first place — for many, not all. But it’s a more complicated procedure than they even need in a large portion of these patients.

Carey: My extra credit is written by Rachel Cohrs of Stat, and she’s a frequent guest on this program. Her story is called “The Health Care Issue Democrats Can’t Solve: Hospital Reform.” While Democrats have seized on lowering health care costs as a politically winning issue — they’ve taken on insurers and the drug industry, for example — Rachel writes that hospitals may be a health care giant they’re unable to confront alone, and they being the Democrats. As we know, hospitals are major employers in many congressional districts. There’s been a lot of consolidation in the industry in recent years. And hospital industry lobbyists have worked hard to preserve the image that they are the good guys in the health care industry, Rachel writes, while others, like pharma, are not.

Well, that’s 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 others find us too. Special thanks, as always, to our engineer, Francis Ying. Also, as always, you can email us your comments or questions. We’re at whatthehealth@kff.org, or you could still find me on X. I am @maryagnescarey. Rachana?

Pradhan: I am @rachanadpradhan on X.

Carey: Jessie.

Hellmann: @jessiehellmann.

Carey: And Joanne.

Kenen: I’m occasionally on X, @JoanneKenen, and I’m trying to get more on Threads, @joannekenen1.

Carey: We’ll be back in your feed next week, and until then, be healthy.

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A 48 horas de su nacimiento en un hospital del área de Seattle en 2021, Layla Babayev fue sometida a una cirugía por una obstrucción intestinal. Dos semanas después, tuvo otra cirugía de emergencia. Luego desarrolló meningitis.

Layla pasó más de un mes en terapia intensiva neonatal en tres hospitales mientras los médicos buscaban la causa de su enfermedad.

Sus padres la inscribieron en un ensayo clínico para buscar una condición genética. A diferencia de las pruebas genéticas centradas en algunas variantes causantes de enfermedades, que pueden tardar meses en producir resultados, el estudio en el Hospital de Niños de Seattle secuenciaría todo el genoma de Layla, buscando una amplia gama de anomalías, con la posibilidad de ofrecer respuestas en menos de una semana.

La prueba reveló que Layla tenía un trastorno genético raro que causaba defectos gastrointestinales y comprometía su sistema inmunológico. Su padre, Dmitry Babayev contó que, por este hallazgo, sus médicos la aislaron, comenzaron administrarle infusiones semanales de antibióticos, y se pusieron en contacto con otros hospitales que habían tratado la misma condición.

Hoy en día, Babayev atribuye a la prueba, conocida como secuenciación rápida de todo el genoma, la vida de su hija. “Es por eso que creemos que Layla todavía está con nosotros hoy”, dijo.

Sin embargo, la experiencia de Layla con su trastorno es rara. Pocos bebés hospitalizados con una enfermedad sin diagnosticar se someten a la secuenciación rápida de todo el genoma, una herramienta de diagnóstico que permite a los científicos identificar rápidamente trastornos genéticos y guiar las decisiones de tratamiento de los médicos al analizar todo el ADN del paciente.

Esto se debe en gran parte a que muchos seguros de salud, públicos y privados, no cubren el costo que oscila entre $4,000 y $8,000.

Pero una alianza de empresas de pruebas genéticas, farmacéuticas, hospitales infantiles y médicos ha presionado a los estados para aumentar la cobertura bajo Medicaid, y estos esfuerzos han comenzado a dar resultados.

Desde 2021, programas de Medicaid en ocho estados han agregado la secuenciación rápida de todo el genoma a su cobertura o la cubrirán pronto, según GeneDX, un proveedor de la prueba. Esto incluye a Florida, donde la legislatura controlada por los republicanos ha resistido la expansión de Medicaid bajo la Ley de Cuidado de Salud a Bajo Precio (ACA).

Georgia, Massachusetts, Nueva York y Carolina del Norte también están considerando cubrirla, según el Rady Children’s Institute for Genomic Medicine, otro importante proveedor de la prueba.

Que Medicaid cubra la prueba puede expandir significativamente el acceso para los bebés; el programa de salud federal gerenciado por los estados que asegura a las familias de bajos ingresos y que cubre a más del 40% de los niños en su primer año de vida.

“Esta es una prueba extraordinaria y poderosa que puede cambiar el curso de las enfermedades de estos niños y nuestra propia comprensión”, dijo Jill Maron, jefa de pediatría en el Women & Infants Hospital en Providence, Rhode Island, quien ha investigado sobre este test.

“Lo único que está interfiriendo con un uso más generalizado es el pago del seguro”, agregó.

Los defensores de la secuenciación de todo el genoma, que ha estado comercialmente disponible por alrededor de seis años, dicen que puede ayudar a los bebés enfermos con enfermedades potencialmente raras a evitar una odisea de pruebas y hospitalizaciones de meses o años sin un diagnóstico claro, y aumentar la supervivencia.

También señalan estudios que muestran que las pruebas rápidas de todo el genoma pueden reducir los costos generales de salud al disminuir las hospitalizaciones, pruebas y atención innecesarias.

Pero la prueba puede tener sus limitaciones. Aunque es mejor para identificar trastornos raros que las pruebas genéticas antiguas, la secuenciación de todo el genoma detecta una mutación solo alrededor de la mitad de las veces, ya sea porque la prueba no detecta algo o porque el paciente no tiene un trastorno genético en absoluto.

Además, plantea preguntas éticas porque también puede revelar que los bebés, y sus padres, tienen genes que los colocan en mayor riesgo de condiciones que se desarrollan en la adultez, como el cáncer de mama y ovario.

Aun así, algunos médicos dicen que la secuenciación ofrece la mejor oportunidad para hacer un diagnóstico cuando las pruebas de rutina no ofrecen respuestas. Pankaj Agrawal, jefe de neonatología en la Escuela de Medicina Miller de la Universidad de Miami, dijo que solo alrededor del 10% de los bebés que podrían beneficiarse de la secuenciación de todo el genoma la están recibiendo.

“Es súper frustrante tener bebés enfermos y no tener una explicación de qué está causando sus síntomas”, dijo.

Ahora, algunos seguros privados cubren la prueba con ciertas limitaciones, incluidos UnitedHealthcare y Cigna, pero otros no. Incluso en los estados que han adoptado la prueba, la cobertura varía. Florida agregará el beneficio a Medicaid más adelante este año para pacientes de hasta 20 años que estén en terapias intensivas.

Adam Anderson, representante estatal de Florida, un republicano cuyo hijo de 4 años murió en 2019 después de ser diagnosticado con la enfermedad de Tay-Sachs, un trastorno genético raro, lideró la campaña para que Medicaid cubriera la secuenciación. El nuevo beneficio de Medicaid estatal lleva el nombre de su hijo, Andrew.

Anderson dijo que persuadir a sus colegas republicanos fue un desafío, dado que generalmente se oponen a cualquier aumento en el gasto de Medicaid.

“Tan pronto como escucharon el término ‘mandato de Medicaid’, se cerraron”, dijo. “Como estado, somos fiscalmente conservadores, y nuestro programa de Medicaid ya es enorme, y queremos ver Medicaid más pequeño”.

Anderson dijo que a los médicos les llevó más de un año diagnosticar a su hijo, un momento emocionalmente difícil para la familia mientras Andrew soportaba numerosas pruebas y viajes para ver a distintos especialistas en varios estados.

“Sé lo que es no obtener esas respuestas mientras los médicos intentan descubrir qué está mal, y sin pruebas genéticas, es casi imposible”, dijo.

Un análisis de la Cámara de Representantes de Florida estimó que si el 5% de los bebés en las terapias intensivas neonatales del estado se sometieran a la prueba cada año, costaría al programa de Medicaid alrededor de $3.3 millones anuales.

Los líderes legislativos de Florida se persuadieron en parte por un estudio de 2020 llamado Proyecto Baby Manatee, en el cual el Hospital de Niños Nicklaus en Miami secuenció los genomas de 50 pacientes. Como resultado, 20 pacientes, aproximadamente el 40%, recibieron un diagnóstico, lo que llevó a cambios en el cuidado de 19 de ellos.

El ahorro estimado superó los $3.7 millones, con un retorno de inversión de casi $2.9 millones, después del costo de las pruebas, según el informe final.

“Hemos demostrado que podemos justificar esto como una buena inversión”, dijo Parul Jayakar, directora de la División de Genética Clínica y Metabolismo del hospital, quien trabajó en el estudio.

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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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.

Autumn is for pumpkins and raking leaves — and open enrollment for health plans. Medicare’s annual open enrollment began Oct. 1 and runs through Dec. 7. It will be followed shortly by the Affordable Care Act’s annual open enrollment, which starts Nov. 1 and runs until Jan. 15 in most states. But what used to be a fairly simple annual task — renewing an existing health plan or choosing a new one — has become a confusing, time-consuming mess for many, due to our convoluted health care system.

Meanwhile, Ohio will be the next state where voters will decide whether to protect abortion rights. Those on both sides of the debate are gearing up for the November vote, with anti-abortion forces hoping to break a losing streak of state ballot measures related to abortion since the 2022 overturn of Roe v. Wade.

This week’s panelists are Julie Rovner of KFF Health News, Joanne Kenen of the Johns Hopkins Bloomberg School of Public Health and Politico, Alice Miranda Ollstein of Politico, and Lauren Weber of The Washington Post.

Panelists

Joanne Kenen
Johns Hopkins Bloomberg School of Public Health and Politico

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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 U.S. House of Representatives has been without an elected speaker since Oct. 4. That means lawmakers cannot conduct any legislative business, with several important health bills pending — including renewal of the popular international HIV/AIDS program, PEPFAR.
• Open enrollment is not just for people looking to change health insurance plans. Plans themselves change, and those who do nothing risk continuing in a plan that no longer meets their needs.
• A new round of lawsuits has sprung up related to “abortion reversals,” a controversial practice in which a patient, having taken the first dose of a two-dose abortion medication regimen, takes a high dose of the hormone progesterone rather than the second medication that completes the abortion. In Colorado, a Catholic-affiliated health clinic says a state law banning the practice violates its religious rights, while in California, the state attorney general is suing two faith-based chains that operate pregnancy “crisis centers,” alleging that by advertising the procedure they are making “fraudulent and misleading” claims.
• The latest survey of employer health insurance by KFF shows annual family premiums are again escalating rapidly — up an average of 7% from 2022 to 2023, with even larger increases expected for 2024. It’s not clear whether the already high cost of providing insurance to workers — an annual family policy now averages just under $24,000 — will dampen companies’ enthusiasm for providing the benefit.

Also this week, Rovner interviews KFF Health News’ Arielle Zionts, who reported and wrote the latest KFF Health News-NPR “Bill of the Month” feature about the wide cost variation of chemotherapy from state to state. If you have an outrageous or inscrutable medical you’d like to send us, you can do that here.

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

Julie Rovner: NPR’s “How Gas Utilities Used Tobacco Tactics to Avoid Gas Stove Regulations,” by Jeff Brady.

Lauren Weber: KFF Health News’ “Doctors Abandon a Diagnosis Used to Justify Police Custody Deaths. It Might Live On, Anyway,” by Markian Hawryluk and Renuka Rayasam.

Joanne Kenen: The Washington Post’s “How Lunchables Ended Up on School Lunch Trays,” by Lenny Bernstein, Lauren Weber, and Dan Keating.

Alice Miranda Ollstein: KFF Health News’ “Pregnant and Addicted: Homeless Women See Hope in Street Medicine,” by Angela Hart.

Also mentioned in this week’s episode:

• The Washington Post’s “The Post Spent the Past Year Examining U.S. Life Expectancy. Here’s What We Found,” by The Washington Post staff.
• The Washington Post’s “Primary Care Saves Lives. Here’s Why It’s Failing Americans,” by Frances Stead Sellers.
• Vox’s “Vox Launches New Guide to Open Enrollment,” by Vox Communications.
• Politico Magazine’s “How Dobbs Triggered a ‘Vasectomy Revolution,’” by Jesús A. Rodríguez.

Click to open the transcript

Transcript: The Open Enrollment Mixing Bowl

KFF Health News’ ‘What the Health?’Episode Title: The Open Enrollment Mixing BowlEpisode Number: 319Published: Oct. 19, 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, Oct. 19, at 10 a.m. As always, news happens fast, and things might have changed by the time you hear this. So here we go. Today, we are joined via video conference by Alice Ollstein of Politico.

Alice Miranda Ollstein: Good morning,

Rovner: Lauren Weber of The Washington Post.

Lauren Weber: Hello, hello.

Rovner: And Joanne Kenen of the Johns Hopkins Bloomberg School of Public Health and Politico.

Joanne Kenen: Hi, everybody.

Rovner: Later in this episode, we’ll have my interview with Arielle Zionts, who reported and wrote the latest KFF Health News-NPR “Bill of the Month” about how chemotherapy can cost five times more in one state than in another. But first this week’s news. So, it’s Oct. 19, the House of Representatives is still without a speaker. That’s 2½ weeks now. That means legislation can’t move. Are there health care items that are starting to stack up? And what would it mean if the House ends up with an anti-federal government conservative like Rep. Jim Jordan, who, at least as of this moment, is not yet the speaker and does not yet look like he has the votes?

Ollstein: So in terms of unfinished health care business, the three big things we are tracking are things that actually lapsed at the end of September. Congress did manage to keep the government open, but they allowed three big health care things to fall by the wayside, and those are PEPFAR, the global HIV/AIDS program, the SUPPORT Act, the programs for opioids and addiction, and PAHPA, the public health, pandemics, biohazards big bill. And so those …

Rovner: I think one of those P’s stands for “preparedness,” right?

Ollstein: Exactly, yes. But it’s related to pandemics, and you would think after all we just went through that that would be more of a priority, but here we are. The reauthorization of all three of those is just dangling out there and it’s unclear if and when Congress can act on them. There is some level of bipartisan support for all of them, but that is what is stacking up, and nothing is really happening on those fronts, according to my conversations with sources on the Hill because everything has just ground to a halt because of the speaker mess.

Rovner: And, of course, we’re less than a month away from the current continuing resolution running out again, and we may go through — who knows? They may get a new speaker and then he may lose his job or her job once they try to keep the government open in November. It’s a mess. I’ve never seen anything like this …

Kenen: Also, in addition to those three very political … even public health and pandemics are now politics … that Alice correctly pointed out, these three huge ideological, how are we going to get them reauthorized in the next 30 days? But there’s also more routine things that are not controversial but are caught up in this such as community health center funding, which has bipartisan support, but they need their apropos and all that stuff. So in addition to these sort of red-blue fights, there’s just, how do we keep the doors open for people who need access to health care? That’s not the only program. There are many day-to-day programs that like everything else in the government are up in the air.

Rovner: I mean, we should point out this is unprecedented. The only other time the House has been without a speaker this long was one year when they didn’t come in at the beginning of the Congress until later in January. It’s literally the only time. There’s never been a mid-session speakerless House. So everything that happens from here is unprecedented. Well, meanwhile, if you have turned on a TV in the past week, you already know this, but Medicare open enrollment began last Sunday, Oct. 15. To be clear, when you first become eligible for Medicare, you can sign up anytime in the three months before or after your birthday. But if you enroll in a private Medicare Advantage plan or a private prescription drug plan, and most people are in one or the other or both, open enrollment is when you can add or change coverage. This used to be pretty straightforward, but it’s only gotten more confusing as private plans have proliferated. This year the Biden administration is trying to fight back against some of the misleading marketing efforts. Politico reports that the government has rejected some 300 different ads. Is that enough to quell the confusion? I’m already seeing ads and kind of look at it, like, “I don’t think that says what it means to say.”

Weber: Yeah, we see this every year. It’s a ton of ads. It’s a barrage of ads that all say, “Hey, this plan is going to get you X, Y, Z, and that’s better than traditional Medicare.” But you got to read the fine print, and I think that is the big thing for all the folks that are looking at this every time. Open enrollment is very confusing, and a lot of times people are trying to sell you things that are not what they appear. So it does appear that there has been more movement to crack down on those ads. But look, the family members I talked to are still confused, so I don’t know how much that’s proliferating down quite yet.

Kenen: And even if the ads were honest, our health system is so confusing. Even if you’re at an employer health system. All of us are employed, all of us get insurance at work, and none of us really know we have made the best choice. I mean, you need a crystal ball to know what illness you and your relatives are going to get that year, and what the copays and deductibles for that specific condition. I’ve never been sure. I have three choices. They’re all decent, whether it’s the best for me and my family, with all that I know about health care, I still don’t know I made the best choice ’cause I don’t have a crystal ball or not one that works.

Rovner: Right. I also have choices, and I did my mom’s Medicare for years, as Joanne remembers …

Kenen: You did a great piece on that one.

Rovner: … this is the way I remember it. I did do a piece on that. Long time ago, when they were first starting the prescription drug benefit and you had to sort of sign up via a computer, and in 2006, not that many seniors knew how to use computers. At least we’re sort of over that, but there’s still complaints about the official website Medicare.gov, which does a pretty good job. It’s just got an awful lot of steps. It’s one of those things, it’s like, “OK, set aside two hours,” and that’s if you know what you’re doing to do this. So meanwhile, if this isn’t all confusing enough, open enrollment for the Affordable Care Act opens in two weeks, and while Medicare open enrollment ends Dec. 7, ACA enrollment goes through Jan. 15 in most, but not every, state. In both cases, if you get your insurance through Medicare or through the ACA, you should look to see what changes your plan might be making. I should say also, if it’s open enrollment for your employer insurance, plans make changes pretty much every year. So you may end up, even if you’re in the same plan, with a plan that you don’t like or a plan that you don’t like as much as you like it now. This is insanely complicated, as you point out, for everybody with insurance. Is there any way to make it easier?

Kenen: There’s no politically palatable way to make it easier. And then things they’ve done to try to make it easier, like consistent claims forms, which most of us don’t have to fill out anymore. Most of that’s done online, but they’re not using consistent claim forms and there’s nothing simple and there’s nothing that’s getting simpler. And we’re all savvy …

Rovner: It’s what keeps our “Bill of the Month” project in business.

Kenen: Right. We’re all pretty savvy and none of us are smart enough to solve every health care problem of us and our family.

Rovner: It’s one of those things where compromise actually makes for complexity. When policymakers can’t do something they really want to do, they do something smaller and more incremental. And so what you end up with is this built on, in every which way, kind of health care system that nobody knows how it works.

Kenen: Like the year I hurt both a finger and a toe. And I had a deductible for the finger, but not for the toe. Explain that!

Rovner: I assume it was in and out of network or not even.

Kenen: No. They were both in network. All of my digits are in network.

Weber: I just got a covid test bill from 2020 that I had previously knocked down by calling, but they rebilled me again. And because I am a savvy health care reporter, I was like, “I’m not paying this. I know that I don’t have to pay this.” But it took probably 10 hours to resolve, I mean, and that’s not even picking insurance. So I’m just saying it’s an incredibly complex marketplace. Shout-out to Vox who had a really nice series that tried to make it easier for people to understand the differences between Medicare and Medicare Advantage, open enrollment, what that all means. If you haven’t seen that and you’re confused about your insurance options, I would highly recommend it.

Rovner: And I will link to the Vox series, which is really good, but it was kind of looking at it. I mean, they had to write six different stories. It’s like that’s how confusing things are, which is really kind of sad here, but we will move on because we’re not going to solve this one today. So speaking of things that are complicated and getting more so, let’s turn to reproductive health. Alice, the big event that people on both sides are waiting for — one of those events, at least — is a ballot measure in Ohio that would establish a state constitutional right to abortion. So far, every state ballot measure we’ve seen has gone in favor of the abortions rights side. How are abortion opponents trying to flip the script here?

Ollstein: So I was in Ohio a couple of weeks ago and was really focused on that very question, just what are they doing differently? How are they learning lessons from all of the losses last year? And why do they think Ohio will be any different? I will say, since my piece came out, there was the first poll I’ve seen of how people are approaching the November referendum, and it showed overwhelming support for the abortion rights side, just like in every other state. So have that color, what I’m about to say next, which is that the anti-abortion side thinks they can win because they have a lot of structural factors working in their favor. They have the governor of Ohio really actively campaigning against the amendment. So that’s in contrast to [Gov. Gretchen] Whitmer in Michigan last year, campaigning actively for it. When you have a fairly popular governor, that does have an impact, they’re a known trusted voice to many. Also …

Rovner: And the governor of Ohio is also a former senator and I mean a really well-known guy.

Ollstein: Yeah. Yeah, exactly. You just have the entire state structure working to defeat this amendment. They tried in a special election in August to change the rules. That didn’t work. Now, you just have all of these top officials using their bully pulpit and their platforms to try to steer the vote in the anti-abortion direction. Also, the actual campaign itself is trying to learn lessons from last year and doing a few things differently. They’re going really aggressively after the African American vote, particularly through Black churches. And so that’s not something I saw in the states I reported on last year, and they’re really aggressively going after the student vote. And I went to a student campus event at Ohio State that the anti-abortion side was holding, and it seemed pretty effective. There was a ton of confusion among the students. A lot of the students are like, “Wait, didn’t we just vote on this?” referring to the August special. They said, “Wait a minute, which side means yes, and which side means no?” There was just rampant confusion, and it wasn’t helped … I observed the anti-abortion side, telling people some misleading things about what the amendment would and wouldn’t do. And so all of that could definitely have an impact. But like I said, since my story came out, a poll came out showing really strong support for the abortion rights amendment, which would block the state’s six-week ban, which is now held up in court, but the court leans pretty far to the right. This would block that from going back into effect potentially.

Rovner: Ohio, the ultimate swing state, probably the reddest swing state in the country. But Ohio is not the only state having an off-year election next month. Virginia doesn’t have an abortion measure on the ballot, but its entire state House and Senate are up for reelection. And from almost every ad I’ve seen from Democrats, it mentions abortion, and there’s a lot of ads here in the Washington, D.C., area for some of the Virginia elections. Republican Gov. Glenn Youngkin, who’s not on the ballot this year, thinks he has a way of talking about abortion that might give his side the edge. What are we going to be able to tell from the ultimate makeup of the very narrowly divided Virginia Legislature when this is all said and done?

Kenen: It won’t be veto-proof. Unlike North Carolina now, even if it’s the Democrats hold the one chamber they have or win both of them, and it’s really close. These are very closely divided, so we really don’t know how it’s going to turn out. But I mean he …

Rovner: One year it was so close that they literally had to draw rocks out of a bowl.

Kenen: Yeah, right. There’s highly unlikely that there will be a scenario where there’s a really strongly Democratic legislature with a Republican governor. That’s not likely. What’s likely is a very narrowly divided, and we don’t know who has the edge in which chamber. So the governor can’t just do things unilaterally, but how it plays out. And Youngkin’s backing a 15-week ban with some exceptions after that for life and health. A year ago, that would’ve seemed like an extreme measure. And now it seems moderate, I mean compared to zero weeks and no exceptions. So Virginia’s a red state, it’s swung blue. It’s now reddish again, I mean, it’s not a swing state so much in presidential, but on the ground, it’s a swing state. And …

Rovner: But I guess that’s what I was getting at was Youngkin’s trying to sort of paint his support as something moderate …

Kenen: That’s how he’s been trying to thread this needle ’cause he comes across as moderate and then he comes across as more conservative. And on abortion, what’s moderate now? I mean, in the current landscape among Republican governors, you could say his is moderate, but Alice follows the politics more closely, but half the country doesn’t think that’s moderate.

Rovner: If the Democrats retain or win both houses of the legislature, I mean, will that send us a message about abortion or is that just going to send us a message about Virginia being a very narrowly divided state?

Ollstein: I think both. I think Joanne is right in that the polling and the voting record over the last year reflect that a lot of people are not buying the idea that 15 weeks is moderate. And a lot of polls show that when presented the choice between a total ban and total protections, even people who are uncomfortable with the idea of abortions later in pregnancy opt for total protections. And so you’ve seen that play out. At the same time, there’s a lot of people on the right who correctly argue that the vast majority of abortions happen before 15 weeks, and so 15 weeks is not going far enough. And they’re not in favor of that as so-called compromise or moderate policy. And so …

Rovner: There are no compromises in abortion.

Ollstein: Truly, truly.

Rovner: If we’ve learned anything, we’ve learned that.

Ollstein: And when you try to please everyone, sometimes you please no one, as we’ve seen with both candidates and policies that try to thread this needle. And so I think it will be a really interesting test because yes, right now the legislature is sort of the firewall between what the governor wants to do on abortion, and whether that will continue to be true is a really interesting question.

Rovner: Meanwhile, we have dueling abortion reversal lawsuits going on in both Colorado and California. Abortion reversal, for those who don’t follow all the jargon, is the concept of interrupting the two-medication regime for abortion by pill. And instead of taking the second medication, the pregnant person takes large doses of the hormone progesterone. The American College of Obstetricians and Gynecologists says there is no evidence that this works to reverse a medication abortion and that it’s unethical for doctors to prescribe it. But in Colorado, a Christian health clinic is charging that a state law that bans the practice offering abortion reversal violates their freedom of religion. In California, it’s actually the opposite. The state attorney general is suing a pregnancy crisis center for false advertising, promoting the practice. Alice, how big a deal could this fight over abortion reversal become? And that’s assuming that the pill remains widely available, which is going to be decided by yet another lawsuit.

Ollstein: Yeah, absolutely. Although it’ll be a long time before we know whether mifepristone is legally available on a federal basis. But I’ve been watching this bubble up for years, but it’s up till now been more of a rhetorical fight in terms of: “Abortion reversal is a thing.” “No, it’s not.” “Yes, it is.” “No, it’s not.” “Here’s my expert saying it is.” “Here’s my expert saying it’s not.” But this is really moving it into a more sort of concrete, legal realm, and not just rhetoric. And so it is an escalation, and it will be interesting to see. Mainstream health care organizations do not support this practice. There was a clinical trial of it going on that was actually called off because of the potential dangers involved and risks to participants …

Rovner: Of doing the abortion reversal method …

Ollstein: Exactly. Yes.

Rovner: … of trying to interrupt a medication abortion.

Ollstein: Yes. This is really on the cutting edge of where medicine and politics are clashing right now.

Rovner: Yeah, we’ll see how it, and, of course, if they end up in different places, this could be something else that ends up in front of the Supreme Court. And this is, I think, less of an argument about religious freedom than an argument about the ability of medical organizations to determine what is or isn’t standard of practice based on evidence. I mean, I guess in some ways it becomes the same thing as the broader mifepristone case, where it’s like, do you trust the FDA to determine what’s safe? And now, it’s like, do you trust ACOG and the AMA [American Medical Association] and other organizations of doctors to decide what should be allowed?

Kenen: I mean, progesterone has medical purposes, it’s used to prevent miscarriages, but it’s off-label. It goes into these other questions, which all of us have written about — ivermectin, and who gets legal substances, and how do you use them properly, and what’s the danger? And there’s a bunch of them.

Weber: I think the fight over standard of care has really become the next frontier in medical lawsuits. I mean, we’ve all written about this, but ivermectin, obviously, misinformation, prescribing hydroxychloroquine, all of these things are now getting into the legal field. Is that the standard of care? What is the standard of care and how does that play out? So I agree with you. I think this is going to end up by the Supreme Court and I think it has much broader implications than just for mifepristone and abortion drugs too.

Rovner: Yeah, I do too. Well, finally, in an update I did not have on my post-Roe Bingo card, it appears that vasectomies are up in some states, including Oregon, where abortion is still legal, and Oklahoma, where it’s not very widely available. Are men finally taking more responsibility for not getting the women they have sex with pregnant? That would be a big sea change.

Ollstein: Yeah, we’ve been hearing anecdotally that this has been the case definitely since Dobbs and even before that as abortion restrictions were mounting. Politico Magazine did a nice piece on this last year profiling vasectomy [in] a mobile van. And it’s also just fascinating and a lot of people have been highlighting just how few restrictions on vasectomies there are compared to more permanent sterilization for women: no waiting periods, no fighting about it. And so it does provide an interesting contrast there.

Rovner: I know there have been stories over the years about how the demand for vasectomies goes up right before the NCAA tournament in March and April because men figure that they can just recuperate while watching basketball.

Ollstein: I thought that was a myth then I looked it up and it’s absolutely true.

Rovner: It is absolutely true.

Kenen: I mean, it also seems to be more common among older men who’ve had a family and because it’s permanent, I mean usually permanent. It’s usually permanent and right, it’s one thing to decide after a certain point in your life when you’ve already had your kids. I mean, it’s not going to be an option for younger men who haven’t had children.

Rovner: It’s also reliable, it is one of those things that you don’t have to worry about.

Kenen: Even though I looked up the figures once, it’s a very, very low failure rate, but it’s not zero.

Rovner: True. We are moving on to what I call this week in declining life expectancy. I’m glad that Lauren is back with us because The Washington Post has published the next pieces of its deep dive into the U.S. population’s declining life expectancy. And we’re going to start with a story that was co-written by Lauren, but that is Joanne’s extra credit this week. So Joanne, you start, and then Lauren, you can chime in.

Kenen: OK. It’s “How Lunchables Ended Up on School Lunch Trays.” For those of you who have never been in a supermarket or who have closed your eyes in certain aisles, Lunchables are heavily processed, encased in plastic, small lunchboxes of a — it’s not even much of a meal or small — which you can buy in the supermarket. And now two of them have been modified so that they’re allowed in schools as healthy enough …

Rovner: They’re quote, unquote, “balanced” because it’s a little piece of meat and a little piece of cheese.

Kenen: They have so far just a turkey cheese option that qualifies for schools and a pizza that qualifies for schools. Not a whole pizza, a little … but the kid in the story, the second grader in the story, didn’t even know it was turkey. It has 14 ingredients. He thought it was ham. So I mean, that just sort of says it, but it’s beyond the lack of nutrition, it started out sort of like what is this child putting in his mouth and why is it called school lunch? But the story was deeper because it was a very long investigation by Lauren and Dan Keating on the relationship between the food industry, the trade group, and the government regulation. And just say, it leaves a lot to be desired. And you should all read the story only because you can click on the story of the oversized Cheez-It.

I mean, it’s a fake one, but the replica of this as big as the planet Mars. I mean, it’s just this huge Cheez-It. And it’s a really good story because it’s overprocessed food is really bad for us. And I mean, scientists have matched the rise of this overprocessed stuff that began as food and the rise of obesity in America. And it’s not just taking the salt out of it, which they’re doing, the sodium out of or adding a little calcium or something to these processed foods. They’re ultra-processed foods, and that’s not what our body needs.

Rovner: So, Lauren, I mean, how does this relate to the rest of this declining life expectancy project and what else is there to come?

Weber: This is our big tranche of stories. I mean, we should have some follows, but that’s it. And well, Joanne, thank you for the kind words on it. We really appreciate that. But I mean, I think the point that she made that I want to highlight for this in general is what was wild in investigating this story is pizza sauce is a vegetable in the U.S. when it comes to school lunch and french fries are also a vegetable. And that’s really all you need to sum up how the industry influence in Congress has resulted in what kids are having for their school lunch today. One of the things we got to do for the story is go to the national School Nutrition Association conference, which is where we saw the giant Cheez-It. And it’s this massive trade fair of all these companies where they throw parties for the school nutrition personnel to try all the different food. And it’s wild to see in real life. And what Joanne made a good point of about ultra-processed food and what the rules do right now is they don’t consider the integrity of the food. They set limits on calories and sodium, but they don’t consider what kids are actually eating. And so you end up with these ultra-processed foods that growing body of research suggests really have some negative health consequences for you. And so, as Joanne talked about, and as our series gets into, obesity is a real problem in this country, and obesity has huge, long-lasting, life-shortening impacts. One of the folks we talked to for the piece, Michael Moss, said, he worries that processed food is the new tobacco because he feels like smoking’s going down, but obesity’s going up. And something he said to me that didn’t make the piece, but I thought was really interesting is that at some point he thinks there’ll be some sort of class-action lawsuit against ultra-processed food, much like a cigarette lawsuit-

Rovner: Like with tobacco.

Weber: Like a tobacco lawsuit, like an opioid lawsuit. I think that’s kind of interesting to think about, but this was just one of the many life expectancy stories. I want to shout out my colleague Frances Stead Sellers’ story, which talked about how it compared is brilliant. It compared two sisters with rheumatoid arthritis, one who lives in the U.S. and one who lives in Portugal. They’re both from Portugal. The one in Portugal has all this fabulous primary health care. The doctors even call her on Christmas and they’re like, “We’re worried you’re going to have chocolate cherries with brandy that would interact with your medicine.” Whereas the one in the U.S. has to go to the ER all the time because she doesn’t have steady health care and she can’t seem to make it work, ends meet. She doesn’t have a primary health care system. She’s a disjointed doctor system. And the end of the story is the sister in the U.S. who has this severe health problem is moving to Portugal because it’s just so much better there for primary care. And I think that gets at a lot of what our stories on life expectancy have talked about, which is that primary care, preventative care in the U.S. is not a priority and it results in a lot of downstream consequences that are shortening America’s life expectancy.

Rovner: Well, I hope when this project is all published that you put all the stories together and send them to every school of public health in the United States. That would be fairly useful. I bet public health professors would appreciate it.

Weber: Thank you.

Rovner: So it is mid-October, that means it is time for the annual KFF survey of employer health insurance. And for the first time since the pandemic, most premiums are up markedly, an average of 7% from 2022 to 2023 with indications of even larger increases coming for 2024. Now, to people like me and Joanne, who’ve been doing this for a long time, lived through years of double-digit increases in the early 2000s, 7% doesn’t seem that big, but today, the average family health insurance premium is about the same as the cost of a small car. So is there a breaking point for the employer health system? I mean, one of the things — to go back to what we were talking about at the beginning — one of the compromised ways we’ve kept the system functional is by allowing these pieces to remain in pieces. Employers have wanted to offer health insurance. It’s an important fringe benefit to help attract workers. But you’re paying $25,000 a year for a family plan, unless you’re a really big company. And even if you are a really big company, that’s an awful lot of money.

Kenen: One of the things that struck me is, we’re at a point when we’ve had a lot of strikes and reactivated labor movement, but 20 years ago, the fights were about the cost of health care. The famous Verizon strike. They were big strikes that were about health care, the cost. And right now, I’m not really hearing that too much. I’m sure it’s part of the conversation, but it’s not the top. It’s not the headline of what these strikes are about. They’re about salaries mostly and working conditions with nurses and ratios and things like that. I’m not hearing health care costs, but I sort of think we will because, yes, we are being subsidized by our employers, most of us. But you said, “What’s the breaking point?” Well, apparently there isn’t one. We’ve asked ourselves that every single year. And when do we stop doing it? No one has a good answer for that. And related is to what Lauren was just talking about, life expectancy. The lack of primary care in this country, in addition to improving our health, it would probably bring down cost. We used to spend 6 cents on the dollar on primary care, 6 cents. Other countries spend a lot more. Now, we’re down to 4.5 cents. So the stuff that keeps you well and spots problems and has somebody who recognizes when something’s going wrong in you because you’re their patient as opposed to … there’s nothing. I don’t mean that urgent care doesn’t have a place. It does, but it’s not the same thing as somebody who gives you continuity of care. So these are all related. I’ll stop. It’s a mess. Someone else can say it’s a mess now.

Rovner: It’s definitely a mess and we are not going to fix it today, but we’ll keep trying.

Kenen: Maybe next week.

Rovner: All right. Yeah, maybe next week. That is this week’s news. Now, we will play my “Bill of the Month” interview with Arielle Zionts. And then we will come back and do our extra credits.

I am pleased to welcome to the podcast my KFF Health News colleague Arielle Zionts who reported and wrote the latest KFF Health News-NPR “Bill of the Month” installment. Arielle, welcome to the podcast.

Arielle Zionts: Thanks for having me.

Rovner: So this month’s patient is grappling with a grave cancer diagnosis, a toddler, and some inexplicable bills from hospitals in two different states. Tell us a little bit about her.

Zionts: Sure. So Emily Gebel is from Alaska and has a husband and two young kids. She home-schools them. She really likes the outdoors, reading, foraging, and she was diagnosed with breast cancer. Just something that makes me so sad is she found out when she was basically breastfeeding because she felt a lump. And then when she was diagnosed, her baby was asleep in her arms when she got that call. So it just really shows what it’s like to be a mom and to have cancer. She was living in Juneau at the time. Her friends who’ve had cancer suggested [they] wanted to go to a bigger city. Whether it’s true or not, the idea was, OK, bigger cities are going to have bigger care. Juneau is not a big city, and you cannot drive there. You have to take a ferry or you have to fly in, and this is the capital of Alaska. So that might …

Rovner: Yes, I’ve been there. It’s very picturesque and very small and very hard to get to.

Zionts: Yeah, so that might be surprising for some people. The closest major American city is Seattle. So she went there for her surgery and then she decided to have chemo, and she opted for this special type of chemo that uses lower dose, but more frequent doses. The idea is that it creates less of the side effects, and she went to this standalone clinic in Seattle, flying there every week. It’s not a quick flight. It can take up to two hours and 45 minutes. And that just got really tiring. I mean, physically …

Rovner: And she’s got kids at home.

Zionts: Yes, physically and mentally and just taking up time. So she decided to switch to the local hospital in Juneau. So they had bills from the first clinic in Seattle, and then they got some estimates from the one in Juneau and then finally got a bill from there as well.

Rovner: Yes, as we say, “Then the bill came.” And, boy, there was a big difference between the same chemotherapy in Seattle and in Juneau, Alaska, right?

Zionts: I compared two of Emily’s treatments that used a similar mix of drugs and also had overlapping non-drug charges, such as how much it costs for the first hour of treatment, subsequent hours. And in the Seattle clinic, one round cost about $1,600. And then in Juneau it cost more than $5,000, so more than three times higher. And we were able to look at specific charges. So that first hour of chemo was $1,000 in Juneau, which is more than twice the rate in the Seattle clinic. There was a drug that cost more than three times the price at the clinic. And then even the cheaper charges were more expensive. So the hospital charged $19.15 for Benadryl, which is about 22 times the price at the clinic, which was 87 cents.

Rovner: Now to be clear, the Gebel family seems to have pretty comprehensive insurance. So this case wasn’t as much about their out-of-pocket costs as some of the other Bills of the Month that we’ve covered, but they did want to know why there was such a big difference, and what did they, and we find out?

Zionts: Yeah. So we started the story for NPR, we basically started saying, “Hey, this is a little different than the other ones because the family has met their maximum out-of-pocket.”

Rovner: For the year?

Zionts: Yes. Once you pay a certain amount of money for the year, your insurance will cover everything, and that can be a high number. But if you have cancer, cancer’s expensive, so you will probably hit it at some point. By the time she switched her treatment to Juneau, she had met that, so she wouldn’t actually owe anything.

Rovner: But what did they find out nevertheless, about why it costs that much more in Juneau than it did in Seattle?

Zionts: Yes. So Jered, her husband, he is somewhat of a self-taught medical billing expert. He gained this knowledge by listening to “Bill of the Month” and then reading some books about this. I mean, at first, he thought maybe they would owe money, but then he learned they wouldn’t. But he still didn’t think it was fair. I mean, he didn’t think it was fair for the insurance companies. And he did catch two errors. One of them, an estimate, was wrong. The hospital said, “Oh, it looks like there was a computer error,” and that was lowered. And then when it came for the actual bill, there was a coding error. It made one of the drugs not covered when it should have been. So that would’ve actually left them out-of-pocket costs. So he was able to lower an estimate, lower the bill. But again, even with those changes, it was still so much more expensive. And that’s when I called some experts and someone’s gut reaction or initial hypothesis might be, “Well, of course, it’s more expensive in Alaska. Alaska is small, it’s remote. I mean, it’s just going to cost more to ship things there. You need to pay doctors more to entice them to live there.”

Rovner: And it costs more for doctors to live there anyway, right?

Zionts: Yes.

Rovner: The cost of living is high in Alaska.

Zionts: Yes. The expert I spoke with, an economist who has studied this issue. He said, “Yes, that is part of it.” Like you said, everything is more expensive in Alaska, but even when accounting for that, the prices are even higher. So the growth of cost in the health care sector in Alaska is higher than the growth of overall cost. And he listed some policies or trends that might explain that. There’s one that really stood out, which is something called the “80th percentile rule,” but it was meant to contain cost for when you’re seen by out-of-network providers. And it seems that it may have actually backfired, and the state is considering repealing that. But as Elisabeth Rosenthal, one of our editors at KFF Health News, and she’s written an entire book about this, as she said, “This is how our health system works. There’s no law saying, this is how much you can upcharge for some intrinsic value of a medicine or of a service. So hospitals can do what they want.” So …

Rovner: And we should point out, I mean, this is not a for-profit hospital, right? It’s owned by the city.

Zionts: Yes. This is a nonprofit hospital owned by the city, and they don’t get a ton of money from the city or state, which is interesting though. So they’re really getting their funding from the services they provide. And the hospital said they try to make it fair by comparing it to wholesale costs, what other hospitals in the region are charging. But they also said, “Yes, we do need to account for the higher costs.”

Rovner: So what’s the takeaway here? I mean, basically what it costs is going to depend on where you live?

Zionts: Basically, what we’ve learned from all these Bill of the Months is that it’s going to vary depending on what facility you go to. And that could be within one city, the prices could vary. And then you might see some more variation between states and especially in states where the cost of living is higher or it’s more remote.

Rovner: Of which Alaska is both.

Zionts: Yes. And actually, something to add is that the amount of money that this hospital has to spend to fly in doctors and nurses and also just staff, even nonmedical staff, they spent nearly $11 million last year to transport them and pay them because they don’t have enough local people. And the other takeaway, though, is that yes, this can be explained, but also, it’s unexplainable in the sense that our health care system doesn’t have some magic formula or some hard rules about what is, quote, “fair.”

Rovner: Yes, at least when it comes to Medicare, Congress has been trying to do that for, oh, I don’t know, about 50 years now. Still working on it. Arielle Zionts, thank you very much for joining us.

Zionts: Thank you 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. Joanne, you’ve already done yours. Alice, why don’t you go next?

Ollstein: I did a piece by my former colleague Angela Hart for KFF Health News, and it’s about street medicine. So teams of doctors working with unhoused people, and this is profiling mainly in Northern California, but it’s sort of discussing this across the country. And in addition to the really very moving personal stories that she found in her reporting, she also talked about some of the structural stuff that is supporting the expansion of this kind of health care. And so California was already putting a lot of money into health care services for the homeless, but in hospitals and in clinics, they were finding that people just aren’t able to come in. Whether it’s because they don’t want to leave all of their earthly possessions unguarded or because they can’t get the transportation or whatever. And so that money’s now being redirected into having the doctors go to them, which seems to be successful in some ways, but the depth of health care problems is just so deep. And …

Rovner: But also, really the importance of primary care.

Ollstein: Absolutely. And so what they’re finding is just a lot of pregnancies and problems with pregnancy in the homeless population. And so they’re doing more services around that and more offering contraception and prenatal care for the people who are already pregnant. It’s very sad, but somewhat hopeful. And the other more structural thing is changing rules so that doctors can get reimbursed at a decent rate for providing street medicine as opposed to in brick-and-mortar facilities.

Rovner: Thanks. Lauren?

Weber: So I also have a KFF special from my former colleagues, Markian [Hawryluk] and Renu [Rayasam]. It’s just a great piece. It’s called “Doctors Abandon a Diagnosis Used to Justify Police Custody Deaths. It Might Live On, Anyway.” So what the piece does is it interviews the doctor who helped debunk what excited delirium is for his medical organization, but it reveals that that may not help in terms of court cases that have already been decided and in terms of science in general. And I think it’s so fascinating because what this piece does is it gets at what happens when flawed science then is used for lawsuits and consequential things for many, many years to come. I think we’ve seen a lot of stories this year about flawed science and what the actual ramifications are after, and this is clearly horrible ramifications here. And it’s just kind of a fascinating question of how does that ever get made right and how do things slowly or ever go back to what they should be after flawed science is revealed? So really, really great work from the team.

Rovner: Yeah, it’s really good piece. Well, keeping with the theme of choosing stories by our former colleagues. Mine is from a former colleague at NPR, Jeff Brady, and it’s “How Gas Utilities Used Tobacco Tactics to Avoid Gas Stove Regulations.” And if you don’t know what that refers to, I have a book or several for you about the huge sums of money that the tobacco industry paid over many decades to have captive, scientific, quote-unquote, “experts” counterclaims that smoking is bad for your health. It turns out that the gas stove industry likewise knew that gas stoves were worse for your health than electric ones, and that those vent hoods don’t really take care of all the problems of the things that gas stoves emit. And that it also paid for studies intended to muddy the waters and confuse both customers and regulators. It’s a pretty damning story, and I say that as someone who is very much attached to my gas stove but am now having second thoughts.

OK, that is 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 us a review; that helps other people find us too. Special thanks as always to our amazing and patient 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 holding down the fort at X, I’m @jrovner or @julierovner at Bluesky and Threads. Joanne, where are you these days?

Kenen: I’m more on Threads, @joannekenen1. I still have a Twitter account, @JoanneKenen, where I’m not very active.

Rovner: Alice?

Ollstein: I am @AliceOllstein on X and @alicemiranda on Bluesky.

Rovner: Lauren?

Weber: I’m @LaurenWeberHP on X, the HP stands for health policy, as I like to tell people.

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

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