It was a shocking reveal. One key comment jumped out for those who follow health policy: Retton said she was uninsured, blaming that lack of coverage on 30 orthopedic surgeries that count as “preexisting conditions,” a divorce, and her poor finances.

“I just couldn’t afford it,” Retton told host Hoda Kotb, who did not challenge the assertion.

Retton, who after winning the gold medal in 1984 became a well-known figure — “America’s sweetheart,” appearing on Wheaties boxes and claiming a variety of other endorsements — did not provide details of her income, the illness, the hospital where she was treated, or the type of insurance she was seeking, so it’s hard to nail down specifics.

Nonetheless, her situation can be informative because the reasons she cited for not buying coverage — preexisting conditions and cost — are among the things the Affordable Care Act directly addresses.

Under the law, which has offered coverage through state and federal marketplaces since 2014, insurers are barred from rejecting people with preexisting conditions and cannot charge higher premiums for them, either. This is one of the law’s most popular provisions, according to opinion surveys.

The ACA also includes subsidies that offset all or part of the premium costs for the majority of low- to moderate-income people who seek to buy their own insurance. An estimated “four out of five people can find a plan for $10 or less a month after subsidies on HealthCare.gov,” Health and Human Services Secretary Xavier Becerra said in a written statement when kicking off the annual open enrollment period in November.

Subsidies are set on a sliding scale based on household income with a sizable portion going to those who make less than twice the federal poverty level, which this year is $29,160 for an individual, or $60,000 for a family of four. Premium costs for consumers are capped at 8.5% of household income.

Still, “we know from surveys and other data that, even 10 years on, a lot of people are unaware there are premium subsidies available through ACA marketplaces,” said Sabrina Corlette, co-director of the Center on Health Insurance Reform at Georgetown University.

Those subsidies are one of the reasons cited for record enrollment in 2024 plans, with more than 20 million people signing up so far.

To be sure, there are also many Americans whose share of the premium cost is still a stretch, especially those who might be higher on the sliding subsidy scale. Looking at the KFF subsidy calculator, a 60-year-old with a $100,000 income, for example, would get a $300 monthly subsidy but still have to pay $708 a month toward their premium, on average, nationally. Without a subsidy, the monthly cost would be $1,013.

And even with insurance, many U.S. residents struggle to afford the deductibles, copayments, or out-of-network fees included in some ACA or job-based insurance plans. The ACA does offer subsidies to offset deductible costs for people on the lower end of the income scale. For those with very low incomes, the law expanded eligibility for Medicaid, which is a state-federal program. However, 10 states, including Texas, where Retton lives, have chosen not to expand coverage, meaning some people in this category cannot get either Medicaid or ACA subsidies.

“If her income was below poverty, she could have been caught in the coverage gap,” said Larry Levitt, executive vice president for health policy at KFF. 

Attempts to reach a representative for Retton were not immediately successful.

One last point — ACA enrollment generally must occur during the annual open enrollment, which for 2024 plans opened Nov. 1 and runs until Jan. 16 in most states. But Retton provided no details on what kind of health insurance she shopped for, or when. And there are types of plans and coverage, for example, that fall outside of the ACA rules.

Those include short-term plans, which offer temporary coverage for people between jobs, for example. There are also coverage efforts dubbed “health care sharing ministries,” in which people pool money and pay one another’s medical bills. Neither is considered comprehensive insurance because they generally offer limited benefits, and both can exclude people with preexisting conditions.

If she was considering insurance during a time of year that wasn’t during the open enrollment period, Retton might have still been able to sign up for an ACA plan if she met requirements for a “special enrollment.” Qualifying reasons include a residential move, loss of other coverage, marriage, divorce, and other specific situations.

Retton excelled in landing difficult moves as a gymnast, but she may have missed the bar when it came to buying insurance coverage.

“You can be a very successful person in your other life and not understand American health care and get into a situation that maybe you could have prevented,” said Joseph Antos, a senior fellow at the American Enterprise Institute.

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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As this election year begins in earnest, making it harder for Congress to pass bills, lawmakers on Capitol Hill are still struggling to fund the government for the fiscal year that began last October. And many health priorities hang in the balance.

Meanwhile, the Supreme Court is again wading into the abortion debate, accepting a case out of Idaho that pits a federal law requiring emergency care, including for pregnant women, against the state’s strict abortion ban.

This week’s panelists are Julie Rovner of KFF Health News, Sarah Karlin-Smith of the Pink Sheet, Tami Luhby of CNN, and Alice Miranda Ollstein of Politico.

Panelists

Among the takeaways from this week’s episode:

• In Washington, lawmakers have reportedly reached a deal that could pave the way for passing necessary government spending bills. But it is unlikely they will pass a full package before the current extensions end, leaving many federal health programs hanging. And ahead of next week’s Iowa caucuses, it bears asking what Republicans would do in health if the party reclaims the White House.
• The Supreme Court is again stepping into the fray over abortion rights, choosing to review the conflict between Idaho’s abortion ban and a federal law requiring emergency medical care. It is notable that justices did not have to take this case and, by swooping in now, are setting up another major abortion ruling before the 2024 election.
• The Biden administration announced it will scale back so-called conscience protections for health providers that the Trump administration sought to beef up. The back-and-forth over the policy — which was created during the George W. Bush administration — reinforces the importance of pressing presidential candidates about what they would do administratively on abortion policy, rather than asking what bills they might sign into law.
• News out of Florida this week: Newly introduced legislation there would, among other things, classify abortion as a felony and penalize those outside the state involved in the sale or distribution of abortion pills if they are “likely to be used in Florida” — a concerning example of a state effort to regulate access to abortion nationwide.
• And the FDA approved Florida’s request to import drugs from Canada, a change for which Republican Gov. Ron DeSantis is taking credit — though both President Joe Biden and former president Donald Trump could also claim some of that credit. But there are a lot of hurdles left before the state receives its first shipments, and due to the way the policy will be implemented, it may not save the state much money anyway.

“This Week in Health Misinformation” highlights Olympic gold medalist and medical crowdfunding beneficiary Mary Lou Retton, who said this week she could not afford health insurance before her headline-grabbing bout of pneumonia because her preexisting conditions made having insurance too expensive. But a decade into the existence of the Affordable Care Act, the fact is that patients can no longer be penalized on the insurance market for preexisting conditions — and, as the record 20 million Americans who enrolled in ACA coverage this year may attest, there are plenty of federal subsidies available to help afford insurance, too.

Also this week, Rovner interviews American Medical Association President Jesse Ehrenfeld, whose focus is helping the nation’s physicians navigate a rapidly changing health care system.

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

Julie Rovner: CNN’s “Bottled Water Contains Thousands of Nanoplastics So Small They Can Invade the Body’s Cells, Study Says,” by Sandee LaMotte. Also, ScienceAlert’s “It Turns Out Paper Straws Might Pose a Serious Problem Too,” by Carly Cassella. Also, The Washington Post’s “How Plastic Hides in Supposedly Eco-Friendly Laundry Products,” by Michael J. Coren.

Tami Luhby: KFF Health News’ “Most People Dropped in Medicaid ‘Unwinding’ Never Tried to Renew Coverage, Utah Finds,” by Phil Galewitz.

Alice Miranda Ollstein: Stat’s “Texas Taxpayers Wanted to Help the Poor Get Health Care. Instead They’re Funding a Medical School at a Wealthy University,” by Rachel Cohrs.

Sarah Karlin-Smith: The New York Times’ “The F.D.A. Warned an Asthma Drug Could Induce Despair. Many Were Never Told,” by Christina Jewett and Benjamin Mueller.

KFF Health News’ ‘What the Health?’Episode Title: 329Episode Number: All About the (Government) FundingPublished: Jan. 11, 2024

[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, Jan. 11, at 10 a.m. As always, news happens fast, and things might have changed by the time you hear this, so here we go. We are joined today via video conference by Alice Miranda Ollstein of Politico.

Alice Miranda Ollstein: Hello.

Rovner: Sarah Karlin-Smith of the Pink Sheet.

Sarah Karlin-Smith: Hi, everybody.

Rovner: And Tami Luhby of CNN.

Tami Luhby: Good morning.

Rovner: Later in this episode, we’ll have my interview with Jesse Ehrenfeld, this year’s president of the American Medical Association. It’s a bumpy time to be a doctor, and the AMA is more relevant than it’s been for quite a few years. But first, this week’s news. So we heard over the weekend that House and Senate negotiators reached a deal on top-line spending ceilings for defense and non-defense discretionary spending.

Actually, they were kind of the top lines, I believe, that they agreed to last summer, and then the House Republicans tried to change. That is all well and good, and it is definitely a prerequisite for passing full-year appropriations bills, but that’s not going to happen between now and Jan. 19, when the first of two temporary spending bills expires. So what do we expect to happen?

Ollstein: I was up on the Hill yesterday, and it’s a very “what they’re saying vs. what they’re doing” situation. They’re talking a lot about, “We got this top line. We’re moving forward. People are somewhat warming to the idea of another short-term CR [continuing resolution] to give them a little breathing room to get this done.” But then Republicans who were pissed about the entire process voted down an unrelated rule on an unrelated bill just to say, “We’re mad.” So that’s obviously not a good sign for getting big things done quickly in the next few weeks.

An issue I’m tracking is also conservatives who are disgruntled about the level of spending being higher than they wanted, saying, “Well, if we’re going to agree to this, we might as well get some policy wins out of it.” And they’re digging in harder on some of these anti-abortion provisions, other culture war things. I think the health care ones are being somewhat overshadowed right now by the immigration border stuff, but the health care things are still in the mix, for sure.

Rovner: Yeah. The CR that expires first also includes continuing authorizations for a bunch of health programs like community health centers and a delay of a bunch of scheduled Medicare payment cuts. Tami, you’re following WIC [Women, Infants, and Children nutrition program], I know, and food stamps. Do we have any idea what the fate is going to be of these things that will also expire when that first CR expires? Do we expect they’ll continue until Congress decides what to do?

Luhby: Well, actually things are looking a little better for WIC participants in terms of a shutdown, not necessarily in terms of full-year funding. But if the government had shut down in October, the USDA warned that it actually only had a few days left of money to provide for WIC. But if the government does shut down next week, then the USDA has told me that SNAP participants, food stamp participants, and WIC participants can expect to continue to get their benefits for food stamps January and February and for WIC January, February, March.

But separate from that, one of the issues that WIC participants have — and WIC, by the way, is the program that provides funding for pregnant women, new moms, infants, and young children to buy groceries. The WIC program is underfunded because there’s actually a big growth in enrollment. And so, even though the Senate provided some more money in their initial bill, they actually need more than a billion dollars more to continue the program at the current participation levels.

And a lot of folks are warning that if Congress doesn’t provide more money, there could actually be waiting lists for the first time in decades. So it’s a big issue that’s continuing because, as we know, the Republicans are not looking to add more money to nutrition assistance.

Rovner: Jumping ahead, it’s a little bit to the abortion debate. This is the argument that if you’re basically going to force women to have babies, you’re going to need to help support them if the women otherwise would’ve had an abortion because they couldn’t afford it. I think where we are with WIC, I think, is sort of the leading edge of this.

Luhby: And WIC is actually very important to that because it also provides breastfeeding assistance and guidance as well as other supports for new moms.

Rovner: So there were things, though, that didn’t even make it into the CR. One of them is the 3.4% cut in Medicare doctor pay. That took effect Jan. 1. Doctors I know would like to get that rolled back. There’s other things that are hoping to catch a ride on whatever the next vehicle is, right?

Karlin-Smith: I mean, one thing I had been watching is PBM [pharmacy benefit manager] reform. There seemed like there was some bipartisan and bicameral momentum to try and tack that on to the next big moving package. And one positive thing for that is that it does offer some amount of savings that then could be applied to other areas like spending, including potentially helping maybe with some of the Medicare cuts. So that’s something in the mix to look for.

Rovner: Yeah. Something that actually is proceeding on a separate track, right? We don’t expect that to be folded into the appropriations — unless we do. My impression was that was proceeding on its own, at least for the moment.

Karlin-Smith: I think it was proceeding on its own, but there’s been talk of could they fold it into any deal that struck to fund the government, because I think the likelihood that it really does fully clear both the House and Senate on their own is small.

Rovner: Yes, it is an election year. It is harder for Congress to get anything done. Speaking of which, on the campaign trail, the Iowa caucus is next week. Boy, that sort of snuck up on us. Former President [Donald] Trump still seems very likely to win, and he’s once again vowing to undo the Affordable Care Act, which, by the way, hit an all-time enrollment record of 20 million this week. And open enrollment isn’t even quite over. Tami, do we know what Trump would do instead? That seems to be the part. He doesn’t ever say.

Luhby: No. It’s pretty much the same plan that he probably has from 2016 and 2017, which we never really fully learned about. So, no, it’s just going to be replaced with a “better plan” because, in his view, Obamacare is failing, and as we know, [Florida Gov.] Ron DeSantis also jumped on the same bandwagon, saying that he would actually also come up with a better plan, but he needs a few months to think about it.

Rovner: Because it’s always been right about to happen, of course.

Luhby: Well, as you may have heard, health care is complicated.

Rovner: And we’ll see something in two weeks.

Luhby: Right. Along with his block grant proposal for Medicaid that he mentioned at last night’s CNN debate.

Rovner: Yes. I was sort of taken by the comments of how they would fix health care in that debate, because Nikki Haley says, “We can fix it with tort reform and transparency.”

Luhby: Transparency. Yes.

Rovner: Right. Which are nice things, and as we say, almost every week, Congress is working on those things, but they are not going to solve what ails the health care system. All right, let us turn to abortion. Remember last week when I said we were still waiting to hear from the Supreme Court on the emergency petition from Idaho regarding the conflict between its state abortion ban and the federal Emergency Medical Treatment & Active Labor Act, EMTALA?

Well, on Friday, the court not only took the case, it overturned the stay of Idaho’s ban. So, at least for now, doctors cannot even provide abortions in medical emergencies unless the woman is at immediate risk of death. Alice, I assume that gives us a hint of where the court might be going with this case, and I imagine also that similar case out of Texas.

Ollstein: Yeah. So again, with the Supreme Court, you kind of have to read the tea leaves and make educated guesses. They’re obviously very secretive. But people who are following this case closely that I’ve spoken to, they think that both the stay of the lower-court ruling and the fact that they took this case at all is the sign that they’re really gunning for ruling on the side of the state abortion restrictions. Because this is really about the state-federal clash. When state abortion bans run into federal protections for patients in emergency circumstances, and which will prevail in that circumstance. So they didn’t have to take this case. The thinking was there is eventually going to be a circuit split on this issue between the 9th Circuit and the 5th Circuit. But the 9th Circuit hasn’t had a chance to rule yet. And so they could have waited, let this play out, allowed the 9th Circuit to hear the case and issue a decision, that would’ve probably punted this case until after the election. So it’s really interesting that they instead wanted to swoop in, allow Idaho to leapfrog the 9th Circuit, and also insert themselves into this really politically volatile case, and now they’re poised to issue a ruling right before the 2024 election that could have major implications for the whole country.

Rovner: They’re going to hear the mifepristone case before this summer too, right?

Ollstein: Absolutely. And so even people who had sort of assumed on the mifepristone case like, “Oh, the Supreme Court’s going to kind of punt. They’re going to dismiss on standing.” Now, because of how aggressive they’re being in this other case, I have experts telling me, “Well, now I’m not so sure about the mifepristone case. Maybe they don’t care about optics as much as they used to.”

Rovner: Well, also, I think this is this Supreme Court’s theme, of “let states do whatever they want.” Even though federal law is supposed to trump state law, they seem to be reversing that in a rather aggressive fashion.

Ollstein: Yes. A big theme is definitely skepticism of federal rulemaking power. This falls under that same category as well.

Rovner: Well, speaking of federal rulemaking power, those who follow abortion policy in D.C. know that every time an administration changes parties, the so-called Mexico City policy that bans funding to international groups that support abortion rights gets either canceled or restored, depending on which party is in power. Well, now we have another policy that seems to be flip-flopping every time an administration changes. It was a rule first issued at the end of the George W. Bush administration. The so-called conscience rule made it easier for medical professionals and others in health care to decline to provide care that violates their religious or moral beliefs. So not just abortion but transgender care, in some cases, just treating people with AIDS. The Obama administration scaled back the Bush rule, and then the Trump administration broadened it. Then it got blocked by the courts, and now the Biden administration has formally rolled back the Trump changes that never really took effect. Alice, where are we with this?

Ollstein: Like you said, this is a back-and-forth, and I think this is why a lot of the questions being asked of candidates on the campaign trail right now, related to abortion, are the wrong questions. They keep getting asked about what kind of bills they would sign. That’s not the question. The question is what would they do administratively, which they could do so much. They could undo this. They could reverse all kinds of things. I follow the Title X stuff. I follow the Mexico City policy on restrictions on international spending on reproductive health. There’s just so much, obviously — FDA regulation of abortion pills — but these are the things we should be focused [on], not a bill that Congress has shown itself unable to pass even with one-party control of Congress.

Rovner: Nikki Haley keeps correctly saying there aren’t 60 votes for anything in the Senate related to abortion.

Ollstein: Right. But then, she also is saying that to mean a future Republican president couldn’t really do much, and that part is not true. They could do a lot.

Rovner: Exactly. Well, moving on, it’s January, and state legislatures are coming back into session. And we’re seeing some pretty eye-popping bills introduced in Florida, where abortion rights supporters just secured enough signatures to get a referendum protecting abortion rights on the 2024 ballot. Republican state Rep. David Borrero introduced a bill that would not only ban abortion, it would classify it as a third-degree felony with penalties of up to 10 years in prison. It also seeks to reach anyone outside the state who makes, sells, or mails abortion pills if they are, quote, “likely to be used in Florida.” The bill also defines personhood as beginning at the moment of fertilization, which would, among other things, make most birth control illegal and give fetuses constitutional rights. Alice, this bill is obviously not likely to pass, but legislators are playing the long game here by trying to make these things look sort of not out of the ordinary, right?

Ollstein: Yeah, the pill one, I think, is more the one to watch there. I’m curious if other states try to do that as well. Obviously, that runs into legal concerns about regulating interstate commerce, et cetera. But I think that we’ve seen these sort of nation attempts to restrict the movement of both people and medications across state lines, since that is a huge way that people are managing to terminate pregnancies despite bans right now. And so I think there’s only going to be more and more activity in that area to try to close off those remaining outlets for people. But yes, on the personhood front, that’s something that states have been attempting to do for a long time now, obviously more recently. And I think there’s sort of a strategy of, “Let’s just put it in everything we can. Let’s throw it in everything we can. Let’s throw it in bills. Let’s throw it in amicus briefs.” And the hope is to eventually force this issue in court and to get a court to rule on whether the 14th Amendment covers fetuses, basically. Will that happen and when remains to be seen, but there’s definitely an effort to sort of seed it in the landscape.

Rovner: Sarah, this obviously — not so much the personhood part, although maybe that too — but trying to ban the movement of medication is something that clearly impacts the FDA. They seem to have been pretty quiet about this, but there’s an awful lot that seems to be sort of threatening the basic core procedures of what the FDA does. Are you hearing anybody whispering about this? Is there concern?

Karlin-Smith: I think the mifepristone case at the Supreme Court is a concern for people who watch FDA’s power and regulation, not just because of abortion but because it is seen as depending on how the court decides that case is something that really could touch on all of its regulatory authority as well. Certainly, this provision that Florida is trying to put in is really something where they seem like they’re effectively trying to regulate the abortion pill throughout the entire country and regulate manufacturers. So that would be concerning, again, if that somehow came to pass and was not struck down by courts, as Alice mentioned, for interstate commerce regulation, which is not some power that is usually given to the states, but so, in general, the abortion pill controversy makes anybody who’s impacted by the FDA regulation nervous.

Rovner: Well, meanwhile, the Federal Trade Commission has entered the chat. This week, it barred a tech company from selling data on people’s visits to medical centers and other health facilities. This was not affecting abortion. They were actually just trying to help people figure out where people are and help them sort of get through their medical undertakings. But this seems like kind of a big deal enforcing privacy post-Dobbs. It’s the first one of these I’ve seen. Have you seen any of these, Alice?

Ollstein: I’m in the same camp as you. Yeah. This is sort of the first I’ve seen of this. But as has been the trend over the last couple of years, it’s a very “throw things against the wall and see what sticks” kind of environment, and so you can’t dismiss the outliers because the outliers can very quickly become the norm.

Rovner: This obviously was not a company that was trying to get women’s menstrual data and figure out whether they’re pregnant and whether they’re going to have an abortion. But there is a lot of concern that because there’s so much medical data floating out now in the metaverse, shall we say, that it would not be that hard to do that. And I guess the FTC is trying to plant a flag and say, “Mm-mm, don’t even try.” Although I’m sure people will …

Ollstein: Again, circling back to our previous theme, like, who a presidential administration installs at places like the FTC that you might not think that has anything to do with health care and abortion, but it certainly does. It certainly can. Same with DOJ, Labor Department. A lot of these things touch on reproductive health in ways that aren’t always obvious.

Rovner: That’s right. Well, turning to prescription drug news, the FDA has approved Florida’s request to import cheaper drugs from Canada. But, Tami, you wrote about this. This comes with a long list of caveats, right? It’s not like they just opened the borders and said, “OK, buy what you want.”

Luhby: No, and Florida has also put forth a fairly restricted proposal. It’s only going to be for people in their public payer program, people like inmates and people who are cared for by the county health systems and, later, Medicaid. And it’s also a pretty small list of drugs, drugs for HIV/AIDS and mental illness, and certain ones. But no, there’s a lot of hurdles before the state can actually start importing drugs. There’s going to likely be a lawsuit by PhRMA. They came out pretty strongly against it. They don’t want this, and Canada doesn’t necessarily want this. They said this in 2020 when the Trump administration first indicated that they were going to move in this direction, and then Health Canada on Friday put out a pretty strong statement saying they are clear in its position. “Bulk importation will not provide an effective solution to the problem of high drug prices in the U.S.” So there’s a long path before Florida will be able to actually see this and an even longer path before its general residents will see it. People may think, “Oh, I can go up to CVS now and order my Canadian version of the drug, which will be much cheaper.” And that’s not at all the case.

Rovner: Sarah, this has been going on for more than 20 years — I think I covered it first time in 1998 — because it’s really popular among Republicans and Democrats because it sounds so good. “We’ll just buy cheaper drugs from other countries where they have the same drugs, and they sell them for less money because they have price controls.” But Canada can’t even supply Florida, much less the rest of the country, right?

Karlin-Smith: Right. I think people, sometimes you look at Canada on a map geographically. It’s a very large area, but the population compared to the U.S. is much smaller. So the supply chain that’s feeding Canada is very different. And then you get into why HHS and FDA has usually pushed back against this idea is because they’re concerned about securing the supply-chain safety and making sure people are actually getting what they … think they’re getting and know how to use the drug. And what’s basically happened under starting the Trump administration and then Biden’s kind of continued it is they came up with a pathway to sort of make importation potentially possible. But they put in so many hoops that these states will have to go through and so many processes in place to ensure the safety of it that by the time Florida does all of this, and again, as Tami mentioned, FDA hasn’t cleared any specific drugs for Florida to import yet; each drug product still is going to have to go through a bunch of steps to get that OK. So by the time they do all of that, it doesn’t look like it’s going to save very much money. Florida’s estimating maybe not quite $200 million for the first year and about the same the second year. If you look at just their Medicaid spending in a year on outpatient drugs, it’s like $1.-something billion. So you can see how tiny a savings that is.

Rovner: Yes. This is one of those things that’s not been partisan. It’s always been sort of the FDA wanting to protect the integrity of the supply chain, whether it’s controlled by Democrats or Republicans versus Democrats and Republicans who would like to find a way to help their constituents get cheaper drugs.

Luhby: One thing also to note that’s going to be interesting, because there’ve been so many people involved in this, we saw Ron DeSantis say yesterday at the debate that he took credit for pushing the federal government and beating the federal government, I think he said, to be allowed to import drugs. But this is also going to be a talking point that Trump and Biden will also be able to say on the campaign. So basically, everyone is probably going to try to take credit for this.

Rovner: Right. Everybody’s going to take credit for something that’s probably only going to happen in a very small way, if it happens at all.

Luhby: If it all happens at all.

Rovner: That’s right. Well, also this week, drug maker Eli Lilly said it is setting up its own telehealth service to help patients access not only its soon-to-be blockbuster weight loss drug Zepbound but also other diabetes and migraine drugs, basically cutting out the doctor or at least cutting out the patient’s regular doctor, if they have one. Sarah, this feels to me like a really big sea change. Is the FDA going to let this happen? Is the AMA going to let this happen?

Karlin-Smith: It’s really interesting. I think the first headline of it makes it seem a little bit more extreme or maybe novel than once you actually look into the details because Lilly’s …

Rovner: Kind of like drug importation.

Karlin-Smith: Right. Although I think more patients maybe will actually be served by this program. But, basically, Eli Lilly is setting up a website that will then connect patients to outside telehealth companies that have the ability to prescribe the drug. Again, these telehealth companies are supposedly prescribing all different drugs, not just Eli Lilly products. The doctor’s supposed to make sure you actually qualify for the product, and so forth. And then Lilly also seems to have developed partnerships with a couple online pharmacy companies that could then directly mail you the product. So Eli Lilly is sort of helping facilitate these connections for patients. But I think probably to avoid various scrutinies by the federal government, they’ve tried to disconnect themselves a few steps, but certainly make the process of getting a drug and their drug easier for patients. Also helping ease the process of getting any copay support or coupons the company offers. So they seem to be kind of taking advantage of a trend that we’ve seen in other areas, with ADHD, like male sexual health products, and so forth, of people wanting to do this through telehealth. And so they’re trying to, I think, get at least a cut of it or at least help steer their product there. But there’s definitely going to be questions, I think, around how you handle advertising and other things for the government to look at.

Rovner: Yeah, it’s definitely a space that, now, we’re going to have to start watching as well as everything else. All right. Well, now it is time for “This Week in Health Misinformation,” which is going to Olympic gold medalist gymnast Mary Lou Retton. Retton, who is now in her mid-50s, contracted a rare form of pneumonia, ended up in the hospital for a month, and became the subject of a crowdfunding effort launched by her daughter because she didn’t have health insurance. Retton, who has been very closed-mouthed about her illness and what happened to the half a million dollars the crowdfunding campaign raised, as is her right, did do an interview this week with the “Today” show on NBC in which she said she couldn’t afford health insurance because her preexisting conditions made it too expensive. For the record, if you’re uninsured, you can still sign up for an Affordable Care Act Plan in most states, and you can’t be charged more due to preexisting conditions. And there are still extra subsidies that we talked about earlier that were implemented during covid that makes insurance even more affordable. Why is it that people don’t know this yet?

Ollstein: Well, as we saw with record-breaking enrollment, a lot of people do know it, but the people who don’t are still loud.

Rovner: We’re 10 years into the ACA!

Ollstein: Yes. It’s funny. I mean, living in D.C. and doing this work, I always try to think about what of all of our reporting actually breaks through around the country. And it’s always interesting to see what does and what doesn’t.

Rovner: I used to stomp around the NPR newsroom when the ACA was just getting up and running, saying, “It is not my job to do the administration’s publicity. It’s really not my job.” But …

Luhby: Yeah.

Rovner: … they are still working on it.

Luhby: It also may be selective ignorance, because I’m sure if she actually asked anyone about health insurance or called any agent or insurer and said, “Well, I have this preexisting condition,” they may have said, “Well, on the ACA, it doesn’t matter anymore.”

Rovner: Yes. And that if she said she didn’t have the money after her divorce, it’s like those are the people who are eligible for big subsidies. All right. Well, that is this week’s news. Now, we will play my interview with AMA President Jesse Ehrenfeld, and then we will come back and do our extra credits.

I am pleased to welcome to the podcast, in person here in our D.C. studio, Dr. Jesse Ehrenfeld, president of the American Medical Association. Dr. Ehrenfeld is an anesthesiologist, medical school professor, researcher on medical information technology, and director of a statewide health philanthropy in Wisconsin, among other activities. He’s an Afghanistan combat veteran twice over, as well as the first openly gay president of the AMA and a national advocate for LGBTQ+ rights. Dr. Ehrenfeld, thank you so much for coming in. You are a very busy person.

Jesse Ehrenfeld: Well, thanks for having me. It’s great to talk to you today.

Rovner: So I want to start on Capitol Hill, since we’re here in D.C.

Ehrenfeld: Sure.

Rovner: And Congress is coming back and working on a budget, or so we hear.

Ehrenfeld: We hope they’re working.

Rovner: I know physicians are facing, again, a cut in Medicare pay, but that’s not the only AMA priority here in Washington at the moment, right?

Ehrenfeld: Well, it’s a big one for us. And, you know, it’s really painful that you turn the clock back, Jan. 1, and 3.37% Medicare cut to physician payments. It’s unconscionable. And so we’re optimistic that we can get a fix, hopefully retroactive, as the omnibus consolidation work goes forward, short of this Jan. 19 deadline coming up. But we can’t have it. Physicians continue to struggle. My parents lost their own primary care physician because of a challenge with their primary care doctor not being able to take Medicare anymore. And what we’re seeing is more and more doctors just stopping seeing new Medicare patients, or opting out of the program entirely. So, every other provider under Medicare is actually fighting for how many increase they’re getting while doctors are getting cut. So we’re hopeful that we can solve this, but it really is something that’s just urgent for us as an association.

Rovner: I thought we took care of this in 2015. I feel like it’s Groundhog Day. I covered it every year from about 2003 to about 2015, and then we solved it briefly.

Ehrenfeld: We solved one problem and replaced it with another, unfortunately. And the doomed SGR did die in 2015 — the unsustainable “sustainable growth rate” problem — that did lead to those year-end patches. And, unfortunately now, though, because of budget neutrality rules and other — we’ll call them “features” — of the program, we’re in the situation again. We do have optimism, though, that we might get some standing inflationary updates. There was the introduction of a bill last session. And we hope that that can be something that does move forward once we get through this time-sensitive issue to deal with the 3.37% cut.

Rovner: So I feel like the physician shortage is kind of like climate change. People have been warning about it for decades, and suddenly it’s here.

Ehrenfeld: It’s here.

Rovner: With people having to wait weeks or sometimes months to see a doctor. Obviously, like with climate change, it’s going to take a while to get out of the hole that we have dug. I know we’ve seen the establishment of several new medical schools, both allopathic and osteopathic, in the past decade. How soon might we be able to see some relief, and what more will it take beyond training more doctors?

Ehrenfeld: Well, we’re opening more medical schools, but we’re not actually training more doctors. And that’s the problem. We haven’t expanded GME [Graduate Medical Education] residency programs. And unfortunately, because, as you know, GME funding through the federal government is tied to a fixed cap, set in the 1990s by Medicare, we’ve opened all these new schools and the students don’t have a place to go to train. So that’s a problem that we need to solve. We’ve had a little tiny, tiny increase these past few years, a couple of hundred spots here and there. We need thousands more training spots open. We need the GME dollars to come from Medicare. We also need to solve some of the issues around how we get international medical graduates here and ready to practice in the U.S. Twenty-five percent of practicing physicians in the U.S. were trained abroad. Most people don’t know that. We already have a huge international workforce, but we do silly things, like we’ll let an international doctor train their residency here, and then we make them go away for two years to their home country before they can come back. There are H-1B visa waiver bills that are circulating around the Conrad 30 extension. We need to do those things as well. Unfortunately, as you’re aware, immigration reform is a challenging issue here in Washington. But there are commonsense solutions that have bipartisan support. And we’re hopeful that we can get some workforce pressure reductions, not just by expanding GME for U.S.-trained individuals, but also those international graduates.

Rovner: Yeah, I feel like people forget that immigration is about more than just people coming across the southern border. There are a lot of skilled-worker issues in the immigration debate.

Ehrenfeld: In lots of industries, health care, technology, other places as well.

Rovner: I know the rise — or should I say the “re-rise” — of prior authorization requirements from insurance companies is something that contributes to physician burnout and the physician shortage by driving doctors out of practice, just from frustration. The Biden administration has a new regulation to limit prior authorization in the pipeline. Assuming that that regulation is finalized soon, how close will that come to fully addressing the problem for your members?

Ehrenfeld: You know, we hope it’ll move the needle a little bit, but we need wholesale reform, and we need to do more than Medicare Advantage plans. Unfortunately, I hear every week from colleagues who are just at their wits’ end, and it’s frustrating. I see it with my own parents. I’m an anesthesiologist. I have a habit now, I ask my patients: “So how long did it take your surgery to get scheduled?” Eh, it’s a couple weeks or a month. I said, “And how long did it take for your insurance company to approve the procedure?” And it’s months. And often what they tell me is they approved it, and then they denied it after they approved it. And they have to go through all of this rigmarole that just doesn’t make sense.

Rovner: You think that Congress is going to need to step in at some point, or is this something that can be worked out?

Ehrenfeld: I think we’re going to have to have regulatory relief from Congress, and we’re pushing for that through our grassroots network. Certainly, we try to bring all the third-party payers together. We have a set of principles that, theoretically, third-party payers have agreed to, and yet they ignore them, and they continue to just harass patients, really to improve their bottom line, but not doing what’s in their best interests.

Rovner: So I want to talk a little bit about physician autonomy. Since the overturn of Roe v. Wade, we’ve seen an increasing level of what I call legislators practicing medicine. Now we have the Supreme Court …

Ehrenfeld: It’s OK if they have an MD.

Rovner: [laughs] That’s true. Now we have the Supreme Court — none of whom have an MD as far as I know — about to decide whether doctors facing women with pregnancy emergencies should obey state abortion bans, the federal EMTALA law, or their medical ethics, all of which may conflict. What’s the AMA doing to help doctors navigate these very choppy and changing legal waters?

Ehrenfeld: “Choppy” is a good word for it. It’s confusing. And since the decision, the Dobbs decision, came out, we have been working with all of our state and federation partners to try to help physicians navigate this. And I can tell you, it’s unbelievable that now physicians are having to call their attorneys, the hospital legal counsel to figure out what they can and can’t do. And obviously, this is not a picture that is a picture that supports women’s health. So we are optimistic that we might get a positive ruling with this EMTALA decision on the Supreme Court. But, obviously, there’s a long way that we need to go to make sure that we can maintain access for reproductive care.

Rovner: You’re younger than I am, but when I was growing up and covering this, the AMA didn’t want to talk about abortion because it was controversial. And now, certainly in the last five or 10 years, the AMA has come out. Do you think that’s something that has dawned on the rest of the members of the AMA that this is not necessarily about abortion, this is about the ability to practice medicine?

Ehrenfeld: Well, you know, look, if you look at some of these socially charged restrictive laws, whether it’s in transgender health or abortion access, or other items, we take the same foundational approach, which is that physicians and patients ought to be making their health care decisions without legislative interference.

Rovner: So it’s not just abortion and reproductive health where lawmakers are trying to dictate medical practice but also care for transgender kids and adults and even treatment for covid and other infectious diseases. How big a priority is this for the AMA, and what are you doing to fight the sort of “pushing against” scientific discourse?

Ehrenfeld: Well, we will always stand up for science. And it’s so important that as an association we do that. Our foundation in 1847 was to get rid of quackery and snake oil salesmen in medicine. And yet here we are trying to do some of those same things with misinformation, disinformation. And obviously, even if you look at the attack on PrEP, preexposure prophylaxis for HIV prevention — you know, an important part of the Affordable Care Act, right? Making it basically zero out-of-pocket cost for many Americans — those things are just unconscionable. We have treatments. We know that they work. We ought to make sure that patients and their physicians can have access to them.

Rovner: What about doctors who are pushing things that you know to be not helpful?

Ehrenfeld: We call them out, and we would encourage others to call them out. If somebody is trying to sell something that’s inappropriate or do something that doesn’t follow the evidence, we need to call it for what it is, which is inappropriate.

Rovner: It’s not just legislators who want to practice medicine these days. We also have the rise of artificial intelligence, which I know promises both huge advances …

Ehrenfeld: I’m real, by the way.

Rovner: [both laugh] Yes, I can attest that you’re real. At least you seem real. But, obviously, our artificial intelligence can portend huge advances and also other issues, not all of which are good. How is the AMA trying to push the AMA more towards the former, the good things, and less towards the latter, the unintended consequences?

Ehrenfeld: Well, we’re really excited about it. I’m excited about it. I have an informatics background. So, you know, I believe that there is so much power that these technologies and tools can bring, but we need to make sure that the technology is an asset, not a burden. And we have all lived through the painful rollout of electronic health records where that just was not the case. So we did survey — we do routine surveys, data that’s a nationally representative sample — in August of this year, it’s on our website. An equal number of physicians are excited about AI as they are terrified about AI, anxious, concerned, right? And we need to make sure that we have the right regulatory framework. We’re very appreciative of the ONC [Office of the National Coordinator for Health Information Technology] rule that came out, out of HHS [the Department of Health and Human Services], at the end of last year. Certainly, the Biden administration’s, whole of government’s approach we think is important, but that is no substitution for regulation. And we need to make sure that we have appropriate regulation. The FDA doesn’t have the framework that they need. The system set up in the ’60s and ’70s for drugs and biologics and devices hasn’t held up. So we know that there have to be changes. We just need to make sure that those changes only let safe and effective algorithms, AI tools, AI-powered products come to the marketplace.

Rovner: Dr. Ehrenfeld, that’s all the time we have. Thank you so much for joining us.

Ehrenfeld: Oh, thanks for having me. It’s been a treat.

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

Luhby: OK. Well, my extra credit is titled “Most People Dropped in Medicaid ‘Unwinding’ Never Tried to Renew Coverage, Utah Finds,” by KFF Health News’ Phil Galewitz. And as many of our podcast listeners know, states are reviewing the eligibility of their residents in Medicaid and terminating the coverage of those they deem ineligible. Roughly 14.4 million people have been disenrolled. And the big question is, what has happened to them? Did they return to Medicaid? Did they find coverage elsewhere, or did they become uninsured? And that’s the question that many actually Medicaid directors have been unable to answer.

So Phil’s story looks at a first-of-its-kind study conducted in October by Utah’s Medicaid agency. And in Utah, 94% of those disenrolled were dropped for procedural reasons, such as not returning their paperwork, rather than being deemed ineligible. And the study found that 57% of respondents did not attempt to renew their Medicaid coverage. Thirty-nine percent shifted to employer plans, and 15% signed up for Affordable Care Act coverage. So they remained insured, but 30% became uninsured. The story also shows that many Medicaid enrollees said that they had trouble reapplying for Medicaid coverage. They didn’t get the documents. They didn’t have the necessary paperwork. They couldn’t get their questions answered. And these are all things that we’ve heard about anecdotally, but the Utah study and Phil’s story actually put some numbers to it. And interestingly, Utah officials also confirmed that the U.S. Department of Health and Human Services is conducting two audits of the state’s Medicaid unwinding. So we’ll see what happens and what we find out from Utah may inform us about what’s happening in the rest of the country.

Rovner: Yes, we have noted before that HHS has been very close-mouthed about how it is trying to get states to maintain coverage for these people who are, if not eligible for Medicaid anymore, eligible for something else. Alice, you have kind of a related story, so why don’t you go next?

Ollstein: Yeah, I have something from our own Rachel Cohrs at Stat. It’s called “Texas Taxpayers Wanted to Help the Poor Get Health Care. Instead They’re Funding a Medical School at a Wealthy University.” It’s a great accountability story about how taxpayers were convinced to put up tens of millions of dollars that they thought was going to provide care for very poor people in the area around Austin, Texas. And instead, basically, none of that money is going to … directly to provide that care to people. And instead, it’s gone to build fancy buildings at this medical school, and overhead, and recruiting faculty. And the school and hospital insist that all of this trickles down eventually to patients. But it’s not what taxpayers feel they were promised. And so they’re getting upset about that.

Rovner: It is a very nice medical school. Sarah.

Karlin-Smith: I looked at a New York Times story from Christina Jewett and Benjamin Mueller, “The F.D.A. Warned an Asthma Drug Could Induce Despair. Many Were Never Told,” and it’s about Singulair, a now generic asthma medicine. Over 20 years after it was first approved, FDA added what’s known as its strictest warning, a black box warning, warning of very serious mental health side effects, including suicidal thoughts. And The New York Times investigation seems to have found out that really these messages are not reaching doctors. They’re not reaching patients, or parents, and many young kids who are taking this medicine. And that has led to many ill effects, including some very young people who have died by suicide. And it’s a really good dive into the challenges that FDA faces and kind of translating their regulatory action into something that then gets communicated to a doctor, and then a doctor translates to a patient. In many ways, it’s not that surprising a story to me because I think it’s kind of well known that not a lot of people read drug labels and then certainly not on an individual level, but even on a doctor level. And I think a lot of the risk-benefit conversations that FDA envisions happen between doctors and patients before people take drugs don’t actually happen in the real world. I once actually had a doctor who told me, “This medicine has a box warning, but don’t worry about it.” Which I always find as a pretty funny story as a drug reporter. And it just also raises a lot of issues, this story, about how drugs are studied on children and what’s done to make sure that as a drug goes generic, the safety is still being monitored, and somebody is responsible again for ensuring people are aware of new safety updates. So it’s a really good dive. I think the thing I was most struck by, though, is I think the solutions perhaps here are not ones that would be very popular in the U.S., which is that by design, the FDA does not regulate the practice of medicine. And, in most cases, I don’t think Americans would want FDA pushing the boundaries much further to get at the safety hurdles this story maybe flags.

Rovner: Yeah. More along our theme of the federal government and its role in society. Well, my extra credit this week is actually a collection of stories. It’s sparked by the headline on this month’s issue of Consumer Reports, which is “How to Eat Less Plastic.” The first story is from CNN reporting on a study in the proceedings of the National Academy of Sciences called “Bottled Water Contains Thousands of Nanoplastics So Small They Can Invade the Body’s Cells, Study Says.” And it basically says that plastic sheds just like skin cells do. So anything you eat or drink that’s stored or wrapped in plastic is going to get into whatever it is you’re putting into your body. If that’s not enough to give you pause, my second story is from ScienceAlert, which is a website, called “It Turns Out Paper Straws Might Pose a Serious Problem Too.” And it’s about a study that found that many paper straws contain those forever chemicals we keep hearing about, called PFAS, which, of course, are also in many plastics. Finally, if that’s not enough plastic for you, here’s a story from The Washington Post called “How Plastic Hides in Supposedly Eco-Friendly Laundry Products.” Basically, those laundry sheets that can replace the use of all those plastic bottles that we keep seeing ads for? Apparently, even many of those sheets that claim to be, quote, “plastic-free” contains something called polyvinyl alcohol, which is, you guessed it, a plastic that’s been found in drinking water and breast milk. I think the message here is everything you do is probably bad for you in some way, so be humble and do the best you can.

OK, that is our show. As always, if you enjoy the podcast, you can subscribe wherever you get your podcasts. We’d appreciate it if you left us a review; that helps other people find us, too. Special thanks, as always, to our technical guru, Francis Ying, and our editor, my fellow happy Michigan Wolverine this week, Emmarie Huetteman. As always, you can email us your comments or questions. We’re at whatthehealth@kff.org, or you can still find me at X, @jrovner, or @julierovner at Bluesky and @julie.rovner at Threads. Sarah, where are you these days?

Karlin-Smith: I’m trying to be places, but then it’s hard to be at all of them. So mostly Twitter and Bluesky, @SarahKarlin or @sarahkarlin-smith.

Rovner: Tami?

Luhby: The best place to find me is cnn.com.

Rovner: There you go. Alice.

Ollstein: Still on X @AliceOllstein, and @alicemiranda on Bluesky.

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

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I had no idea how to evaluate that offer. Feeling upsold, I said no. But it got me thinking: Is this something I should add to my regular screening routine? Is my regular mammogram not accurate enough? If this AI analysis is so great, why doesn’t insurance cover it?

I’m not the only person posing such questions. The mother of a colleague had a similar experience when she went for a mammogram recently at a suburban Baltimore clinic. She was given a pink pamphlet that said: “You Deserve More. More Accuracy. More Confidence. More power with artificial intelligence behind your mammogram.” The price tag was the same: $40. She also declined.

In recent years, AI software that helps radiologists detect problems or diagnose cancer using mammography has been moving into clinical use. The software can store and evaluate large datasets of images and identify patterns and abnormalities that human radiologists might miss. It typically highlights potential problem areas in an image and assesses any likely malignancies. This extra review has enormous potential to improve the detection of suspicious breast masses and lead to earlier diagnoses of breast cancer.

While studies showing better detection rates are extremely encouraging, some radiologists say, more research and evaluation are needed before drawing conclusions about the value of the routine use of these tools in regular clinical practice.

“I see the promise and I hope it will help us,” said Etta Pisano, a radiologist who is chief research officer at the American College of Radiology, a professional group for radiologists. However, “it really is ambiguous at this point whether it will benefit an individual woman,” she said. “We do need more information.”

The radiology clinics that my colleague’s mother and I visited are both part of RadNet, a company with a network of more than 350 imaging centers around the country. RadNet introduced its AI product for mammography in New York and New Jersey last February and has since rolled it out in several other states, according to Gregory Sorensen, the company’s chief science officer.

Sorensen pointed to research the company conducted with 18 radiologists, some of whom were specialists in breast mammography and some of whom were generalists who spent less than 75% of their time reading mammograms. The doctors were asked to find the cancers in 240 images, with and without AI. Every doctor’s performance improved using AI, Sorensen said.

Among all radiologists, “not every doctor is equally good,” Sorensen said. With RadNet’s AI tool, “it’s as if all patients get the benefit of our very top performer.”

But is the tech analysis worth the extra cost to patients? There’s no easy answer.

“Some people are always going to be more anxious about their mammograms, and using AI may give them more reassurance,” said Laura Heacock, a breast imaging specialist at NYU Langone Health’s Perlmutter Cancer Center in New York. The health system has developed AI models and is testing the technology with mammograms but doesn’t yet offer it to patients, she said.

Still, Heacock said, women shouldn’t worry that they need to get an additional AI analysis if it’s offered.

“At the end of the day, you still have an expert breast imager interpreting your mammogram, and that is the standard of care,” she said.

About 1 in 8 women will be diagnosed with breast cancer during their lifetime, and regular screening mammograms are recommended to help identify cancerous tumors early. But mammograms are hardly foolproof: They miss about 20% of breast cancers, according to the National Cancer Institute.

The FDA has authorized roughly two dozen AI products to help detect and diagnose cancer from mammograms. However, there are currently no billing codes radiologists can use to charge health plans for the use of AI to interpret mammograms. Typically, the federal Centers for Medicare & Medicaid Services would introduce new billing codes and private health plans would follow their lead for payment. But that hasn’t happened in this field yet and it’s unclear when or if it will.

CMS didn’t respond to requests for comment.

Thirty-five percent of women who visit a RadNet facility for mammograms pay for the additional AI review, Sorensen said.

Radiology practices don’t handle payment for AI mammography all in the same way.

The practices affiliated with Boston-based Massachusetts General Hospital don’t charge patients for the AI analysis, said Constance Lehman, a professor of radiology at Harvard Medical School who is co-director of the Breast Imaging Research Center at Mass General.

Asking patients to pay “isn’t a model that will support equity,” Lehman said, since only patients who can afford the extra charge will get the enhanced analysis. She said she believes many radiologists would never agree to post a sign listing a charge for AI analysis because it would be off-putting to low-income patients.

Sorensen said RadNet’s goal is to stop charging patients once health plans realize the value of the screening and start paying for it.

Some large trials are underway in the United States, though much of the published research on AI and mammography to date has been done in Europe. There, the standard practice is for two radiologists to read a mammogram, whereas in the States only one radiologist typically evaluates a screening test.

Interim results from the highly regarded MASAI randomized controlled trial of 80,000 women in Sweden found that cancer detection rates were 20% higher in women whose mammograms were read by a radiologist using AI compared with women whose mammograms were read by two radiologists without any AI intervention, which is the standard of care there.

“The MASAI trial was great, but will that generalize to the U.S.? We can’t say,” Lehman said.

In addition, there is a need for “more diverse training and testing sets for AI algorithm development and refinement” across different races and ethnicities, said Christoph Lee, director of the Northwest Screening and Cancer Outcomes Research Enterprise at the University of Washington School of Medicine.  

The long shadow of an earlier and largely unsuccessful type of computer-assisted mammography hangs over the adoption of newer AI tools. In the late 1980s and early 1990s, “computer-assisted detection” software promised to improve breast cancer detection. Then the studies started coming in, and the results were often far from encouraging. Using CAD at best provided no benefit, and at worst reduced the accuracy of radiologists’ interpretations, resulting in higher rates of recalls and biopsies.

“CAD was not that sophisticated,” said Robert Smith, senior vice president of early cancer detection science at the American Cancer Society. Artificial intelligence tools today are a whole different ballgame, he said. “You can train the algorithm to pick up things, or it learns on its own.”

Smith said he found it “troubling” that radiologists would charge for the AI analysis.

“There are too many women who can’t afford any out-of-pocket cost” for a mammogram, Smith said. “If we’re not going to increase the number of radiologists we use for mammograms, then these new AI tools are going to be very useful, and I don’t think we can defend charging women extra for them.”

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

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The added services would provide care to patients who live in largely rural eastern Iowa, including some of the hundreds previously treated at a University of Iowa clinic, saving them half-day drives to clinics in larger cities like Chicago and Minneapolis.

By June, The Project of the Quad Cities, as the Illinois clinic is called, had hired a provider who specializes in transgender health care. So, Andy Rowe, The Project’s health care operations director, called the clinic’s insurance broker to see about getting the new provider added to the nonprofit’s malpractice policy.

“I didn’t anticipate that it was going to be a big deal,” Rowe said. Then the insurance carriers’ quotes came. The first one specifically excluded gender-affirming care for minors. The next response was the same. And the one after that. By early November, more than a dozen malpractice insurers had declined to offer the clinic a policy.

Rowe didn’t know it at the time, but he wasn’t alone in his frustrating quest.

Nearly half the states have banned medication or surgical treatment for transgender youth. Independent clinics and medical practices located in states where such care is either allowed or protected have moved to fill that void for patients commuting or relocating across state lines. But as the risk of litigation rises for clinics, obtaining malpractice insurance on the commercial marketplace has become a quiet barrier to offering care, even in states with legal protections for health care for trans people. In extreme cases, lawmakers have deployed malpractice insurance regulations against gender-affirming care in states where courts have slowed or blocked anti-trans legislation.

Five months after starting his search for malpractice insurance, Rowe said, he received a quote for a policy that would allow The Project to treat trans youth. That’s when he realized finding a policy was only the first hurdle. He expected the coverage to cost $8,000 to $10,000 a year, but he was quoted $50,000.

Rowe said he hadn’t experienced anything like it in his 20 years working in health care administration.

Insurance industry advocates argue that higher premiums are justified because the rise in legislation surrounding gender-affirming care for minors means clinics are at increased risk of being sued.

“If state laws increase the risk of civil liability for health professionals, premiums will be adjusted accordingly and appropriately to reflect the level of financial risk incurred by the insured,” Mike Stinson, vice president of public policy and legal affairs at the Medical Professional Liability Association, an insurance trade association, said in an emailed statement. If state laws make an activity illegal, then insurance will not cover it at all, he said.

Only a few states have passed laws preventing malpractice insurers from treating gender-affirming care differently than other care. Massachusetts was the first, when lawmakers there passed legislation that says insurers could not increase rates for health care providers for offering services that are illegal in other states.

Since then, five other states have passed laws requiring malpractice insurers to treat gender-affirming health care as they do any other legally protected health activity: Colorado, Vermont, New York, Oregon, and California (similar legislation is pending in Hawaii).

“This was a preventative measure, and it was met with full acceptance by both the insured and the insurers,” said Vermont state Sen. Virginia “Ginny” Lyons, a Democrat who co-sponsored the state’s law. She said lawmakers consulted with both physicians and malpractice insurance companies to make sure the language was accurate. Insurers just wanted to be able to clearly assess the risk, she said.

Lyons said she hadn’t heard of any providers in Vermont who had trouble with their malpractice insurance before the law was enacted, but she was concerned politics might get in the way of doctors’ ability to offer care. In March 2022, The Texas Tribune reported that one Texas doctor had stopped offering care because his malpractice provider had stopped covering hormone therapy for minors.

Lawmakers in some states have gone further and revised malpractice provisions to restrict access to gender-affirming care, often while bans on offering that care to trans youth are stalled in court. In 2021, Arkansas became the first state to ban gender-affirming care for trans children. When that ban was held up in court last year, the governor signed a new law allowing anyone who received gender-affirming care as a minor to file a malpractice lawsuit up to 15 years after they turn 18.

Similar laws followed in Tennessee, Florida, and Missouri, all extending the statute of limitations on filing a malpractice claim anywhere from 15 to 30 years. (Another was introduced but not passed in Texas that would have stretched the statute of limitations to the length of the patient’s life.) Typically, malpractice suits must be filed within one to three years of injury.

The civil liability that those laws created has forced at least one clinic to stop offering some treatments. The Washington University Transgender Center in Missouri said the law subjected the clinic to “unacceptable level of liability.”

Alejandra Caraballo, a civil rights attorney and clinical instructor at the Harvard Law School Cyberlaw Clinic, said there has been “a concerted effort on the part of anti-trans activists to utilize malpractice insurance as a means of eliminating care.”

She likens the strategy to laws that have long targeted abortion providers by increasing “legal liability to chill a certain type of conduct.”

Anti-trans activists have drawn attention to a small number of “detransitioners,” who have filed lawsuits against the doctors who provided them with gender-affirming care, she said. She believes those lawsuits, filed in such states as California, Nebraska, and North Carolina, will be used to lobby for longer statutes of limitations and to create the perception that liability for providers is increasing.

For independent clinics, like The Project in the Quad Cities, and small medical practices that purchase their malpractice insurance on the commercial marketplace, those tactics are restricting their ability to offer care. Many providers of gender-affirming care are protected from rising premiums such as health centers that receive federal funding, which are covered under the Federal Tort Claims Act, or academic medical centers and Planned Parenthood clinics, which are self-insured. But a small number of independent clinics have been priced out.

In Albuquerque, New Mexico, a state that, like Illinois, has protected access to gender-affirming care, family medicine physician Anjali Taneja said the clinic where she works is running into the same trouble getting coverage.

Casa de Salud, where Taneja is the executive director, has provided gender-affirming care to adults for years, but when the clinic decided to start offering that care to younger patients, insurers wouldn’t issue a malpractice policy. The clinic was quoted “double what we paid a few years ago,” just to cover the gender-affirming care it offers to adults, Taneja said.

The red tape both Casa de Salud and The Project are encountering has prevented treatment for patients. When Iowa’s ban on gender-affirming care took effect Sept. 1, officials at The Project had hoped to offer services to the transgender youth who previously sought care an hour west at the University of Iowa’s LGBTQ Clinic. Instead, Rowe said, patients are making the difficult decision between going without treatment or commuting four hours to Chicago or Minneapolis.

After months of fundraising, The Project has almost enough money to pay for the $50,000 malpractice policy. But, Rowe said, “it’s a tough swallow.”

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Deroze, a 31-year-old English professor at the time, was confused about which images were meant to depict her. Initially, she was diagnosed with Type 2 diabetes, as shown on the pamphlet with older adults. It would be eight years before she learned she had a different form of diabetes — one that didn’t fit neatly on either pamphlet.

The condition is often called latent autoimmune diabetes of adults, or LADA for short. Patients with it can be misdiagnosed with Type 2 diabetes and spend months or years trying to manage the wrong condition. As many as 10% of patients diagnosed with Type 2 diabetes might actually have LADA, said Jason Gaglia, an endocrinologist at the Joslin Diabetes Center in Boston.

Deroze and three other LADA patients who spoke with KFF Health News, all Black women, are among those who were initially misdiagnosed. Without the correct diagnosis — which can be confirmed through blood tests — they described being denied the medicines, technology, and tests to properly treat their diabetes. Three of them wonder if their race played a role.

“That does seem to happen more frequently for African American patients and for other minoritized groups,” said Rochelle Naylor, a pediatric endocrinologist at the University of Chicago who researches atypical forms of diabetes. “Doctors, like any other person walking this planet, we all have implicit biases that impact our patient experiences and our patient care delivery.”

Black patients have long struggled with bias across the U.S. health care system. In a recent KFF survey, for example, 55% of Black adults said they believed they needed to be careful at least some of the time about their appearances to be treated fairly during medical visits. Hospital software used to treat patients has been investigated for discrimination. Even a common test used to manage diabetes can underestimate blood sugar levels for patients who have sickle cell trait, which is present in nearly 1 in 10 African Americans.

LADA ostensibly has nothing to do with race, but misconceptions about race, weight, and age can all lead doctors to misdiagnose LADA patients with Type 2 diabetes, said Kathleen Wyne, an endocrinologist who leads the adult Type 1 diabetes program at Ohio State University.

Type 2 diabetes develops in people, often over age 45, whose bodies cannot properly regulate their blood sugar levels. Type 2 accounts for at least 90% of diabetes cases in the U.S. and has a high prevalence among African Americans, Native Americans, and Hispanic populations. It can often be managed with lifestyle changes and oral medications.

LADA is more akin to, or even thought to be another form of, Type 1 diabetes, an autoimmune condition once dubbed “juvenile diabetes” because it was most often diagnosed in children. Type 1 occurs when the body attacks its cells that produce insulin — the naturally occurring hormone that regulates blood sugar by helping turn food into energy. Without insulin, humans can’t survive.

LADA is difficult to diagnose because it progresses slowly, Gaglia said. Typical LADA patients are over 30 and don’t require injectable insulin for at least six months after diagnosis. But, like Type 1 patients, most will eventually depend on injections of pharmaceutical insulin for the rest of their lives. That delay can lead physicians to believe their patients have Type 2 diabetes even as treatment becomes less effective.

“If you have someone who comes into your office who is obese and/or overweight and may have a family history of Type 2 diabetes — if you’re a betting person, you bet on them having Type 2 diabetes,” Gaglia said. “But that’s the thing with LADA: It unmasks itself over time.”

Mila Clarke, who lives in Houston, finally saw an endocrinologist in November 2020, more than four years after being diagnosed with Type 2 diabetes. During that visit, she recounted her struggles to manage her blood sugar despite taking oral medications and making significant changes to her diet and exercise regimens.

“‘What you just explained to me, I believe, is a classic case of LADA,’” Clarke recalled being told. “‘Has anybody ever tested you for Type 1 antibodies?’”

Because both Type 1 diabetes and LADA are autoimmune conditions, patients will have antibodies that Type 2 patients typically don’t. But, as Clarke recounted, getting tested for those various antibodies isn’t always easy.

Clarke, now 34, had leaned into her Type 2 diagnosis when she received it in 2016 at age 26. She started a blog with nutrition and lifestyle tips for people with diabetes called “Hangry Woman,” and garnered tens of thousands of followers on Instagram. Clarke said she wanted to fight the stigma around Type 2 diabetes, which stereotypes often associate with being overweight.

“Some of the harshest comments that I had gotten were from people with Type 1 who were like, ‘We’re not the same. I didn’t cause this. I didn’t do this to myself,’” Clarke said. “Well, neither did I.”

Clarke also felt her initial doctor thought she just wasn’t working hard enough.

When she learned about continuous glucose monitors, wearable electronic devices that allow patients to track their blood sugar around the clock, she asked her primary care doctor to prescribe one. The monitors are recommended for patients with Type 1 and, more recently, some with Type 2. “He flat-out told me, ‘No. It’s going to be too much information, too much data for you,’” she recalled.

Clarke switched to a different primary care doctor who she felt listened better and who prescribed a continuous glucose monitor. (Clarke later became a paid ambassador for the company that manufactures her device.) The new doctor eventually referred Clarke to the endocrinologist who asked if she’d been tested for antibodies. The test came back positive. Clarke had LADA.

“In the health care system, it’s really hard to vocalize your needs when you are a woman of color because you come off as aggressive, or you come off as a know-it-all, or you come off as disrespectful,” Clarke said. “My intuition was right this whole time, but nobody believed me.”

Immediately, Clarke noticed an “eye-opening” difference in how she was treated. She started insulin injections and was referred to a dietitian and a diabetes educator. She wondered: Why wasn’t it easier to get tested for antibodies?

Those tests are imperfect and can have false positives, said Gaglia of the Joslin center. Still, Ohio State’s Wyne argued that every diabetes patient should be tested for at least the most common antibody associated with Type 1.

“Aren’t you saving lives if you’re identifying the Type 1 before they come in with DKA and die?” Wyne asked, referring to diabetic ketoacidosis, a serious complication of diabetes most commonly associated with Type 1.

Deroze started asking her doctor for antibodies tests in 2017 after reading about a Type 2 blogger’s experience being newly diagnosed with LADA.

Her endocrinologist denied her requests. She thinks the doctor thought it was impossible for her to have an autoimmune form of diabetes because of her race and weight. She sought a second opinion from a different endocrinologist, who also refused to test her.

“I just felt unseen,” Deroze said.

After a bout with diabetic ketoacidosis in 2019, Deroze finally persuaded her gynecologist to test her for antibodies. The results came back positive. One of the endocrinologists apologetically prescribed insulin and, later, an insulin pump, another ubiquitous piece of technology for people with Type 1.

And for the first time, she encountered the words “diabetes is not your fault” while reading about Type 1 diabetes. It felt like society was caring for her in a way it hadn’t when she was misdiagnosed with Type 2. That’s troubling, she said, and so is how long it took to get what she needed.

“My PhD didn’t save me,” said Deroze, who now lives in the Miami area. “You just see the color of my skin, the size of my body, and it negates all of that.”

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“Escuché al agente de seguros y, básicamente, hizo publicidad de Medicare Advantage”, dijo Timmins. El agente describió la cobertura menos costosa y más amplia que ofrecen los planes, financiados en gran parte por el gobierno, pero administrados por compañías de seguros privadas.

Para Timmins, que ahora tiene 76 años, lo más lógico desde el punto de vista económico era inscribirse. Y su decisión le resultó muy bien, durante un tiempo.

Luego, hace tres años, notó que tenía una lesión en el lóbulo de la oreja derecha.

“Tengo antecedentes familiares de melanoma. Así que me lo tomé en serio”, dijo Timmins sobre la lesión, que más tarde los médicos diagnosticaron como melanoma maligno. “Empezó a crecer y a ser bastante dolorosa”.

Timmins descubrió entonces que su inscripción en un plan Premera Blue Cross Medicare Advantage significaba una red limitada de médicos y la necesidad potencial de aprobación previa, o autorización previa, de la aseguradora antes de recibir atención.

La experiencia, explicó, hizo más difícil recibir atención médica y ahora quiere volver a Medicare tradicional, administrado por el gobierno.

Pero no puede. Y no es el único.

“Tengo muy poco control sobre mi atención médica”, afirmó, y ahora aconseja a sus amigos que no se inscriban en los planes privados. “Creo que las personas no entienden en qué consiste Medicare Advantage”.

La afiliación a los planes Medicare Advantage ha crecido sustancialmente en las últimas décadas, atrayendo a más de la mitad de las personas que cumplen los requisitos, principalmente mayores de 65 años, con primas de bajo costo y ventajas, como seguro dental y oftalmológico. Y a medida que la cifra de pacientes en los planes privados de Medicare se ha disparado hasta alcanzar los 30,8 millones de personas, también lo ha hecho la preocupación por las agresivas tácticas de venta de las aseguradoras y sus engañosas afirmaciones sobre la cobertura.

Los afiliados, como Timmins, que se inscriben cuando están sanos pueden verse atrapados a medida que envejecen y enferman.

“Es una de esas cosas que pueden gustar al principio, por sus primas bajas o nulas y porque reciben un par de prestaciones adicionales: de visión, dentales, etc.”, explicó Christine Huberty, especialista en prestaciones de la Greater Wisconsin Agency on Aging Resources.

“Pero cuando realmente necesitan utilizarlo para cuestiones más importantes”, añadió Huberty, “entonces se dan se dan cuenta de que, ‘Oh no, esto no me va a ayudar en absoluto'”.

Medicare paga a las aseguradoras privadas una cantidad fija por cada inscrito en Medicare Advantage y, en muchos casos, también abona primas, que las aseguradoras pueden utilizar para ofrecer prestaciones suplementarias. Huberty señaló que esas prestaciones adicionales funcionan como incentivo para “conseguir que la persona se afilie al plan”, pero que luego los planes “restringen el acceso a muchos servicios y la cobertura de cosas más importantes”.

David Meyers, profesor de servicios, políticas y prácticas de salud en la Facultad de Salud Pública de la Universidad Brown, analizó una década de inscripciones en Medicare Advantage y descubrió que un 50% de los beneficiarios, rurales y urbanos, abandonaban su contrato al cabo de cinco años. La mayoría de esos afiliados cambiaron a otro plan Medicare Advantage en lugar de al Medicare tradicional.

En el estudio, Meyers y sus coautores reflexionan sobre el hecho de que cambiar de plan podría ser un signo positivo en un mercado libre, pero también podría indicar un “descontento no medido” con Medicare Advantage.

“El problema es que una vez que uno entra en Medicare Advantage, si tiene un par de enfermedades crónicas y quiere dejarlo, aunque no satisfaga sus necesidades, es posible que no pueda volver a Medicare tradicional”, explicó Meyers.

Medicare tradicional puede ser demasiado caro para los beneficiarios que vuelven de Medicare Advantage, añadió. En Medicare tradicional, los afiliados pagan una prima mensual y, luego de alcanzar un deducible, en la mayoría de los casos deben abonar el 20% del costo de cada servicio o artículo no hospitalario que utilicen. Y, según Meyers, no hay límite en la cantidad que un afiliado puede tener que pagar como parte de ese 20% de coseguro si acaba utilizando muchos servicios.

Para limitar lo que gastan de su bolsillo, los afiliados a Medicare tradicional suelen contratar un seguro complementario, como la cobertura del empleador o una póliza privada Medigap. Si tienen bajos ingresos, Medicaid puede proporcionarles esa cobertura complementaria.

Pero, según Meyers, hay una trampa. Mientras que los beneficiarios que se inscribieron primero en Medicare tradicional tienen garantizado el acceso a una póliza Medigap sin precios basados en su historial médico, las aseguradoras Medigap pueden denegar la cobertura a los beneficiarios que vengan de planes Medicare Advantage o basar sus precios en la cobertura médica.

Sólo cuatro estados —Connecticut, Maine, Massachusetts y Nueva York— prohíben a las aseguradoras denegar una póliza Medigap si el afiliado padece enfermedades preexistentes como diabetes o cardiopatías.

Paul Ginsburg es un ex miembro de la Medicare Payment Advisory Commission, también conocida como MedPAC. Se trata de una agencia del poder legislativo que asesora al Congreso sobre el programa Medicare. Ginsberg aseguró que la incapacidad de los inscritos para cambiar fácilmente entre Medicare Advantage y Medicare tradicional durante los períodos de inscripción abierta es “un problema real de nuestro sistema; no debería ser así”.

El gobierno federal ofrece cada año períodos de inscripción específicos para cambiar de plan. Durante el de inscripción abierta de Medicare, del 15 de octubre al 7 de diciembre, los afiliados pueden cambiar sus planes privados por Medicare tradicional, administrado por el gobierno.

Los afiliados a Medicare Advantage también pueden cambiar de plan o pasarse a Medicare tradicional durante otra ventana de inscripción abierta, del 1 de enero al 31 de marzo.

“Hay muchas personas que dicen: ‘Me encantaría volver, pero ya no puedo contratar Medigap, o tendré que pagar mucho más'”, explicó Ginsburg, que ahora es profesor de políticas de salud en la Universidad del Sur de California.

Timmins es una de esas personas. Este veterinario jubilado vive en una comunidad rural de la isla de Whidbey, al norte de Seattle. Es un paisaje agreste e idílico y un lugar popular para casas de fin de semana, el senderismo y las artes. Pero también es un poco remoto.

Aunque suele ser más difícil encontrar médicos en las zonas rurales, Timmins cree que su plan de Premera Blue Cross complicó aún más la atención médica, sobre todo la dificultad para encontrar especialistas y acudir a a las citas.

Casi la mitad de los directorios de los planes Medicare Advantage contenían información inexacta sobre los proveedores disponibles, según la revisión federal más reciente. A partir de 2024, los planes Medicare Advantage nuevos, o en expansión, deberán demostrar que cumplen con las expectativas federales en materia de redes o sus solicitudes podrían ser denegadas.

Amanda Lansford, vocera de Premera Blue Cross, declinó hacer comentarios sobre el caso de Timmins. Dijo que el plan cumple con los requisitos federales de una red adecuada, así como el tiempo de viaje y las normas de distancia “para asegurar que los miembros no experimenten obstáculos cuando buscan atención”.

Medicare tradicional permite a los beneficiarios acudir a casi cualquier hospital o médico de Estados Unidos, y en la mayoría de los casos no necesitan aprobación para obtener servicios.

Timmins, que acaba de terminar la inmunoterapia, afirmó que no cree que le aprobaran una póliza Medigap, “por mi problema de salud”. Y si consiguiera una, dijo Timmins, probablemente sería demasiado cara.

Por ahora, aseguró, se queda con su plan Medicare Advantage.

“Me estoy volviendo mayor. Van a pasarme más cosas”.

También existe la posibilidad, concluyó Timmins, de que su cáncer reaparezca: “Soy muy consciente de mi mortalidad”.

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“I listened to the insurance agent and, basically, he really promoted Medicare Advantage,” Timmins said. The agent described less expensive and broader coverage offered by the plans, which are funded largely by the government but administered by private insurance companies.

For Timmins, who is now 76, it made economic sense then to sign up. And his decision was great, for a while.

Then, three years ago, he noticed a lesion on his right earlobe.

“I have a family history of melanoma. And so, I was kind of tuned in to that and thinking about that,” Timmins said of the growth, which doctors later diagnosed as malignant melanoma. “It started to grow and started to become rather painful.”

Timmins, though, discovered that his enrollment in a Premera Blue Cross Medicare Advantage plan would mean a limited network of doctors and the potential need for preapproval, or prior authorization, from the insurer before getting care. The experience, he said, made getting care more difficult, and now he wants to switch back to traditional, government-administered Medicare.

But he can’t. And he’s not alone.

“I have very little control over my actual medical care,” he said, adding that he now advises friends not to sign up for the private plans. “I think that people are not understanding what Medicare Advantage is all about.”

Enrollment in Medicare Advantage plans has grown substantially in the past few decades, enticing more than half of all eligible people, primarily those 65 or older, with low premium costs and perks like dental and vision insurance. And as the private plans’ share of the Medicare patient pie has ballooned to 30.8 million people, so too have concerns about the insurers’ aggressive sales tactics and misleading coverage claims.

Enrollees, like Timmins, who sign on when they are healthy can find themselves trapped as they grow older and sicker.

“It’s one of those things that people might like them on the front end because of their low to zero premiums and if they are getting a couple of these extra benefits — the vision, dental, that kind of thing,” said Christine Huberty, a lead benefit specialist supervising attorney for the Greater Wisconsin Agency on Aging Resources.

“But it’s when they actually need to use it for these bigger issues,” Huberty said, “that’s when people realize, ‘Oh no, this isn’t going to help me at all.’”

Medicare pays private insurers a fixed amount per Medicare Advantage enrollee and in many cases also pays out bonuses, which the insurers can use to provide supplemental benefits. Huberty said those extra benefits work as an incentive to “get people to join the plan” but that the plans then “restrict the access to so many services and coverage for the bigger stuff.”

David Meyers, assistant professor of health services, policy, and practice at the Brown University School of Public Health, analyzed a decade of Medicare Advantage enrollment and found that about 50% of beneficiaries — rural and urban — left their contract by the end of five years. Most of those enrollees switched to another Medicare Advantage plan rather than traditional Medicare.

In the study, Meyers and his co-authors muse that switching plans could be a positive sign of a free marketplace but that it could also signal “unmeasured discontent” with Medicare Advantage.

“The problem is that once you get into Medicare Advantage, if you have a couple of chronic conditions and you want to leave Medicare Advantage, even if Medicare Advantage isn’t meeting your needs, you might not have any ability to switch back to traditional Medicare,” Meyers said.

Traditional Medicare can be too expensive for beneficiaries switching back from Medicare Advantage, he said. In traditional Medicare, enrollees pay a monthly premium and, after reaching a deductible, in most cases are expected to pay 20% of the cost of each nonhospital service or item they use. And there is no limit on how much an enrollee may have to pay as part of that 20% coinsurance if they end up using a lot of care, Meyers said.

To limit what they spend out-of-pocket, traditional Medicare enrollees typically sign up for supplemental insurance, such as employer coverage or a private Medigap policy. If they are low-income, Medicaid may provide that supplemental coverage.

But, Meyers said, there’s a catch: While beneficiaries who enrolled first in traditional Medicare are guaranteed to qualify for a Medigap policy without pricing based on their medical history, Medigap insurers can deny coverage to beneficiaries transferring from Medicare Advantage plans or base their prices on medical underwriting.

Only four states — Connecticut, Maine, Massachusetts, and New York — prohibit insurers from denying a Medigap policy if the enrollee has preexisting conditions such as diabetes or heart disease.

Paul Ginsburg is a former commissioner on the Medicare Payment Advisory Commission, also known as MedPAC. It’s a legislative branch agency that advises Congress on the Medicare program. He said the inability of enrollees to easily switch between Medicare Advantage and traditional Medicare during open enrollment periods is “a real concern in our system; it shouldn’t be that way.”

The federal government offers specific enrollment periods every year for switching plans. During Medicare’s open enrollment period, from Oct. 15 to Dec. 7, enrollees can switch out of their private plans to traditional, government-administered Medicare.

Medicare Advantage enrollees can also switch plans or transfer to traditional Medicare during another open enrollment period, from Jan. 1 to March 31.

“There are a lot of people that say, ‘Hey, I’d love to come back, but I can’t get Medigap anymore, or I’ll have to just pay a lot more,’” said Ginsburg, who is now a professor of health policy at the University of Southern California.

Timmins is one of those people. The retired veterinarian lives in a rural community on Whidbey Island just north of Seattle. It’s a rugged, idyllic landscape and a popular place for second homes, hiking, and the arts. But it’s also a bit remote.

While it’s typically harder to find doctors in rural areas, Timmins said he believes his Premera Blue Cross plan made it more challenging to get care for a variety of reasons, including the difficulty of finding and getting in to see specialists.

Nearly half of Medicare Advantage plan directories contained inaccurate information on what providers were available, according to the most recent federal review. Beginning in 2024, new or expanding Medicare Advantage plans must demonstrate compliance with federal network expectations or their applications could be denied.

Amanda Lansford, a Premera Blue Cross spokesperson, declined to comment on Timmins’ case. She said the plan meets federal network adequacy requirements as well as travel time and distance standards “to ensure members are not experiencing undue burdens when seeking care.”

Traditional Medicare allows beneficiaries to go to nearly any doctor or hospital in the U.S., and in most cases enrollees do not need approval to get services.

Timmins, who recently finished immunotherapy, said he doesn’t think he would be approved for a Medigap policy, “because of my health issue.” And if he were to get into one, Timmins said, it would likely be too expensive.

For now, Timmins said, he is staying with his Medicare Advantage plan.

“I’m getting older. More stuff is going to happen.”

There is also a chance, Timmins said, that his cancer could resurface: “I’m very aware of my mortality.”

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The survey sheds light on why millions of beneficiaries nationwide were dropped from the federal-state health insurance program for “procedural reasons.” KFF Health News obtained the survey, which Utah’s Medicaid program paid more than $20,000 to conduct, through a public records request.

Like many states, Utah terminated Medicaid coverage for a large share of enrollees whose eligibility was reevaluated in 2023, following a three-year pause during the coronavirus pandemic. And, as in most states, an overwhelming number of those disenrollments were executed for procedural reasons such as missing paperwork, rather than determinations that people were no longer eligible for coverage.

Nationally, more than 13.3 million people were cut from Medicaid in 2023, according to KFF, and procedural issues were cited in just over 70% of cases. In Utah, such issues accounted for 94% of disenrollments — the second-highest rate among states.

It’s been unclear what led to those procedural terminations in Utah and other states. But the Utah survey of more than 1,000 disenrolled Medicaid beneficiaries, conducted in October, found that 57% of people who left the program in 2023 never tried to renew their coverage.

“It is frustrating to see that 57% of respondents did not attempt to renew and that over 50% of those former members reported paperwork or other challenges as the reason they did not attempt to renew coverage,” said Matt Slonaker, executive director of the Utah Health Policy Project, an advocacy group.

Many of them found insurance elsewhere — 39% through an employer and 15% through the Affordable Care Act marketplaces, according to the survey.

But 30% became uninsured, and many people reported obstacles in reapplying for Medicaid, which covers people with low incomes and disabilities.

Nineteen percent said they never received renewal documents from the Utah Medicaid enrollment agency, the Department of Workforce Services. Fourteen percent said they didn’t get around to the paperwork, 13% said it was too difficult, and 7% said they didn’t have the necessary documents to prove their eligibility.

The online survey, which had a margin of error of plus or minus 3%, found that many disenrolled people had trouble getting questions answered by the state Medicaid agency. While 39% of those polled said they were able to resolve their issue the same day or the next day, 12% waited more than two weeks, and 21% said they were still waiting for their question, complaint, or problem to be resolved.

About half of those disenrolled described the renewal process as difficult. Just a quarter found it to be easy.

“Too many people, overrepresented by children, will be newly uninsured as a result of the unwinding, and much needs to be done to develop and execute ‘chase’ strategies to find and assist these people with getting covered,” Slonaker said.

Jennifer Strohecker, Utah’s Medicaid director, said the state is using feedback from the survey to improve its consumer engagement. It’s renewing more beneficiaries using databases to verify their income and residency, she said, and is assisting with enrollment at laundromats and Department of Motor Vehicles offices.

The state’s strong economy and low unemployment rate may help explain the high percentage of people terminated from Medicaid, she said. And about 35% who were disenrolled are returning to the program, said Kevin Burt, a deputy director of the Utah Department of Workforce Services.

But health experts worry that any disruption of insurance coverage can leave people vulnerable to losing access to care or responsible for large medical bills.

In August 2023, the Centers for Medicare & Medicaid Services sent letters to states expressing concern over high procedural disenrollment rates. CMS said the procedural disenrollment rate was too high in more than half of states and urged them to reduce it.

The Biden administration has expressed alarm in particular about losses of coverage among children, who accounted for about 46% of enrollment in Medicaid and the related Children’s Health Insurance Program in August, according to KFF. Almost 90 million people were enrolled in the two programs that month — up about 20 million from before the covid-19 pandemic.

Medicaid beneficiaries typically must have their eligibility reviewed every year to renew their coverage. But in March 2020, after the pandemic hit, the federal government froze eligibility checks as part of the public health emergency. That prevented people from losing coverage.

Since last spring, when Congress ended the emergency, states began to once again review beneficiaries’ eligibility — and terminated coverage for millions. This “unwinding” is scheduled to continue through May, though some states have already completed their process.

Utah has dropped roughly 150,000 of about 500,000 Medicaid beneficiaries since April.

Utah officials confirmed this week that the state’s Medicaid unwinding is under audit by the Department of Health and Human Services’ Office of Inspector General, which can levy fines and other penalties on states that it finds broke the law.

Strohecker said she believes Utah is one of a handful of states facing such an examination. The state is also facing an audit by the HHS Office of Civil Rights, possibly due to the high proportion of Black, Hispanic, and Pacific Islander beneficiaries who lost coverage. That agency is also able to issue fines.

Lindsey Browning, a policy analyst for the National Association of Medicaid Directors, said she is aware of about a dozen states facing these audits, which she said are routine when there are big changes in Medicaid policy.

Both HHS agencies refused to confirm or comment on the audits.

UnidosUS, the nation’s largest Hispanic civil rights and advocacy group, has called on states to more aggressively protect eligible people from losing Medicaid coverage.

“People of all races and ethnicities are losing their health care, but Latinos and members of other historically marginalized communities are suffering disproportionate harm, as are children,” said Stan Dorn, health policy director of UnidosUS.

Stephanie Burdick, a Medicaid enrollee and consumer advocate on Utah’s Medicaid advisory board, said the survey points to serious shortcomings in the state’s unwinding.

“It’s a huge communication failure,” she said when asked why more than half of those dropped made no effort to renew their coverage. Many Medicaid enrollees, she said, didn’t know they had to reapply.

“A lot of people thought it was like the federal stimulus checks and was just a one-time benefit,” she said.

Utah fully expanded Medicaid in 2020 under the Affordable Care Act, raising eligibility to cover more working people with low incomes. As a result, tens of thousands of people who enrolled during the pandemic had never been through the process of renewing their coverage.

The Utah survey found that former Medicaid recipients rated the state’s program as 7 on a scale of 1 to 10. And nearly 80% said they would reenroll in the program if they could.

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That’s because, after KFF Health News sent questions to Nix’s insurance company, Blue Cross Blue Shield of Illinois, it retroactively approved $36,000 worth of treatments she thought she owed. Even better, she also learned she would qualify for the infusions moving forward.

Good news all around — except it didn’t last for long. After all, this is the U.S. health care system, where even patients with good insurance aren’t guaranteed affordable care.

To recap: For more than a decade, Nix, of Statesville, North Carolina, has suffered from autoimmune diseases, chronic pain, and fatigue, as well as a condition called trigeminal neuralgia, which is marked by bouts of electric shock-like pain that’s so intense it’s commonly known as the “suicide disease.”

“It is a pain that sends me to my knees,” Nix said in October. “My entire family’s life is controlled by the betrayal of my body. We haven’t lived normally in 10 years.”

Late in 2022, Nix started receiving intravenous immunoglobulin infusions to treat her diseases. She started walking two miles a day with her service dog. She could picture herself celebrating, free from pain, at her daughter’s summer 2024 wedding.

“I was so hopeful,” she said.

But a few months after starting those infusions, she found out that her insurance company wouldn’t cover their cost anymore. That’s when she started “raising Cain about it” on Instagram and Facebook.

You probably know someone like Sally Nix — someone with a chronic or life-threatening illness whose doctor says they need a drug, procedure, or scan, and whose insurance company has replied: No.

Prior authorization was conceived decades ago to rein in health care costs by eliminating duplicative and ineffective treatment. Not only does overtreatment waste billions of dollars every year, but doctors acknowledge it also potentially harms patients.

However, critics worry that prior authorization has now become a way for health insurance companies to save money, sometimes at the expense of patients’ lives. KFF Health News has heard from hundreds of people in the past year relating their prior authorization horror stories.

When we first met Nix, she was battling her insurance company to regain authorization for her infusions. She’d been forced to pause her treatments, unable to afford $13,000 out-of-pocket for each infusion.

Finally, it seemed like months of her hard work had paid off. In July, Nix was told by staff at both her doctor’s office and her hospital that Blue Cross Blue Shield of Illinois would allow her to restart treatment. Her balance was marked “paid” and disappeared from the insurer’s online portal.

But the day after the KFF Health News story was published, Nix said, she learned the message had changed. After restarting treatment, she received a letter from the insurer saying her diagnoses didn’t actually qualify her for the infusions. It felt like health insurance whiplash.

“They’re robbing me of my life,” she said. “They’re robbing me of so much, all because of profit.”

Dave Van de Walle, a spokesperson for Blue Cross Blue Shield of Illinois, said the company would not discuss individual patients’ cases.

“Prior authorization is often a requirement for certain treatments,” Van de Walle said in a written statement, “and BCBSIL administers benefits according to medical policy and the employer’s benefit.”

But Nix is a Southern woman of the “Steel Magnolia” variety. In other words, she’s not going down without a fight.

In September, she called out her insurance company’s tactics in a Change.org campaign that has garnered more than 21,000 signatures. She has also filed complaints against her insurance company with the U.S. Department of Health and Human Services, U.S. Department of Labor, Illinois Department of Insurance, and Illinois attorney general.

Even so, Nix said, she feels defeated.

Not only is she still waiting for prior authorization to restart her immunoglobulin infusions, but her insurance company recently required Nix to secure preapproval for another treatment — routine numbing injections she has received for nearly 10 years to treat the nerve pain caused by trigeminal neuralgia.

“It is reprehensible what they’re doing. But they’re not only doing it to me,” said Nix, who is now reluctantly taking prescription opioids to ease her pain. “They’re doing it to other patients. And it’s got to stop.”

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

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A survey conducted for state officials in Utah, obtained by KFF Health News, holds some clues.

Like many states, Utah terminated Medicaid coverage for a large share of enrollees whose eligibility was reevaluated in 2023, following a three-year pause during the coronavirus pandemic. And like most states, an overwhelming share of those disenrollments were made for procedural reasons, such as missing paperwork.

More than 13.3 million people were disenrolled from Medicaid in 2023, according to KFF, and just over 70 percent of disenrollments were for procedural reasons.

It’s been unclear what led to those procedural terminations in Utah and other states. But the Utah survey of more than 1,000 disenrolled Medicaid beneficiaries, conducted in October, found that 57 percent of people who left the program in 2023 never tried to renew their coverage.

The good news is that many of them found insurance elsewhere — 39 percent through an employer, and 15 percent through the Affordable Care Act marketplaces, according to the survey.

The bad news is that 30 percent became uninsured, and many people reported obstacles in reapplying for Medicaid, which covers low-income and disabled people.

Nineteen percent said they never received renewal documents from the Utah Medicaid enrollment agency, the Department of Workforce Services. Fourteen percent said they didn’t get around to the paperwork, 13 percent said it was too difficult, and 7 percent said they didn’t have the necessary documents to prove their eligibility.

The survey found that many disenrolled people who asked why had trouble getting questions answered by the state Medicaid agency. While 39 percent polled said they were able to resolve their issue the same day or the next day, 12 percent waited over two weeks and 21 percent said their question or complaint was never resolved.

Half of those disenrolled described the renewal process as difficult. Just a quarter found it to be easy.

The online survey had a margin of error of plus-or-minus 3 percent. 

Medicaid beneficiaries typically must have their eligibility reviewed every year to renew their coverage. But in March 2020, after the pandemic hit, the federal government froze eligibility checks as part of the public health emergency. That kept anyone from being dropped.

Since the spring, when Congress ended the emergency, states have begun once again reviewing eligibility for Medicaid beneficiaries — and terminating coverage for millions. The “unwinding” is scheduled to continue through May of this year, though some states have already completed it.

Utah has dropped about 150,000 of about 500,000 Medicaid beneficiaries since April.

Stephanie Burdick, a Medicaid enrollee and consumer advocate on Utah’s Medicaid advisory board, said the state’s survey results point to serious shortcomings in Utah’s unwinding.

“It’s a huge communication failure,” she said when asked why more than half of those dropped made no effort to renew their coverage. Many Medicaid enrollees, she said, didn’t know they had to reapply. 

“A lot of people thought it was like the federal stimulus checks and was just a one-time benefit,” she said.

Jennifer Strohecker, Utah’s Medicaid director, said the state is using feedback from the survey to improve its consumer engagement. It’s renewing more beneficiaries using databases to verify their income and residency, she said, and is assisting with enrollment at laundromats and Department of Motor Vehicles offices.

The state’s strong economy and low unemployment rate may help explain the high percentage of people terminated from Medicaid, she said. And about 35 percent who were disenrolled are returning to the program, said Kevin Burt, deputy director of the Utah Department of Workforce Services.

This article is not available for syndication due to republishing restrictions. If you have questions about the availability of this or other content for republication, please contact NewsWeb@kff.org.

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).