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KFF Health News' 'What the Health?': Dancing Under the Debt Ceiling
KFF Health News' 'What the Health?'

Dancing Under the Debt Ceiling

Episode 295

The Host

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

If Congress fails to raise the nation’s debt ceiling in the next few months, the U.S. could default on its debt for the first time in history. Republicans in Congress, however, say they won’t agree to pay the nation’s bills unless Democrats and President Joe Biden agree to deep cuts to health and other programs. Among the proposals in a bill House Republicans passed April 26 is the imposition of new work requirements for adults who receive Medicaid.

Meanwhile, many of the states passing restrictions on abortion are also passing bills to restrict the ability of trans people to get health care. The two movements — both largely aimed at conservative evangelicals, a key GOP constituency — have much in common.

This week’s panelists are Julie Rovner of KFF Health News, Jessie Hellmann of CQ Roll Call, Shefali Luthra of The 19th, and Sarah Karlin-Smith of the Pink Sheet.

Panelists

Jessie Hellmann
CQ Roll Call
Sarah Karlin-Smith
Pink Sheet

Among the takeaways from this week’s episode:

  • The Republican-controlled House’s proposal to raise the debt ceiling contains enough politically poisonous measures that the plan is a non-starter in the Senate. They include substantial funding cuts to major federal health programs, including the FDA and the National Institutes of Health — cuts that would force the federal government to cut back on grants and other funding.
  • The proposal would also impose work requirements on adults enrolled in Medicaid — which covers low-income and disabled Americans, as well as pregnant women — and in the Supplemental Nutrition Assistance Program, which helps needy families buy food. Under the plan, the government would save money by cutting the number of people helped. But most beneficiaries cannot work or already do so. Experience shows the change would mostly affect people who struggle to report their work hours through what can be complicated online portals.
  • Multiple congressional committees have released plans to fight high drug costs, promoting efforts to explore how pharmacy benefit managers make decisions about cost and access, as well as to encourage access to cheaper, generic drugs on the market. And during congressional testimony this week, the administrator of the Centers for Medicare & Medicaid Services, Chiquita Brooks-LaSure, said the agency would no longer issue warnings to hospitals that fail to comply with a law that requires them to post their prices, but instead would move directly to fining the holdouts.
  • Also in news about cost-cutting legislation, a plan to address an expensive glitch in Medicare payments to hospital outpatient centers and physician offices is gaining steam on Capitol Hill. Hospital consolidation has helped increase costs in the health care system, and lawmakers are eager to keep health spending under control. But the hospital industry is ramping up advertising to make sure lawmakers think twice before legislating.
  • In abortion news, it will likely be at least a year before the Supreme Court rules on whether the abortion pill mifepristone should remain accessible. Some justices suggested in last summer’s Dobbs decision, which overturned abortion rights, that they would leave further abortion questions to the states, yet the nation is finding that overturning a half-century of legal precedent is messy, to say the least. Meanwhile, reporting and polling are revealing just how difficult it is for doctors in states with abortion bans to determine what constitutes a “medical emergency” worthy of intervention, with a grim consensus emerging that apparently means “when a woman is near death.”

Also this week, Rovner interviews Renuka Rayasam, who wrote the latest KFF Health News-NPR “Bill of the Month” feature, about a pregnant woman experiencing a dangerous complication who was asked to pay $15,000 upfront to see one of the few specialists who could help her. If you have an outrageous or exorbitant medical bill you want to share with us, you can do that here.

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

Julie Rovner: The Nation’s “The Poison Pill in the Mifepristone Lawsuit That Could Trigger a National Abortion Ban,” by Amy Littlefield.

Shefali Luthra: The Washington Post’s “The Conservative Campaign to Rewrite Child Labor Laws,” by Jacob Bogage and María Luisa Paúl.

Jessie Hellmann: Politico’s “Gun Violence Is Actually Worse in Red States. It’s Not Even Close,” by Colin Woodard.

Sarah Karlin-Smith: The Wall Street Journal’s “Weight-Loss Drugmakers Lobby for Medicare Coverage,” by Liz Essley Whyte.

Also mentioned in this week’s episode:

KFF Health News’ ‘What the Health?’

Episode Title: Dancing Under the Debt Ceiling

Episode Number: 295

Published: April 27, 2023

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

Julie Rovner: Hello and welcome back to “What the Health?” I’m Julie Rovner, chief Washington correspondent at 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, April 27, at 10 a.m. As always, news happens fast — really fast this week — and things might have changed by the time you hear this. So here we go. We are joined today via video conference by Jessie Hellmann of CQ Roll Call.

Jessie Hellmann: Good morning.

Rovner: Sarah Karlin-Smith, the Pink Sheet.

Sarah Karlin-Smith: Hi, everybody.

Rovner: And Shefali Luthra of The 19th.

Shefali Luthra: Hello.

Rovner: Later in this episode, we’ll have our KFF Health News-NPR “Bill of the Month” interview with Renuka Rayasam. This month’s patient had a happy ending medically, but a not-so-happy ending financially. But first, the news. We’re going to start this week with the budget and, to be specific, the nation’s debt ceiling, which will put the U.S. in default if it’s not raised sometime in the next several weeks, not to panic anyone. House Republicans, who have maintained all along that they won’t allow the debt ceiling to be raised unless they get spending cuts in return, managed to pass — barely — a bill that would raise the debt ceiling enough to get to roughly the middle of next year. It has no chance in the Senate, but it’s now the Republicans’ official negotiating position, so we should talk about what’s in it. It starts with a giant cut to discretionary spending programs. In health care that includes things like the National Institutes of Health, most public health programs, and the parts of the FDA that aren’t funded by user fees. I mean, these are big cuts, yes?

Hellmann: Yeah, it’s about a 14% cut to some of these programs. It’s kind of hard to know exactly what that would mean. But yeah, it’s a big cut and there would have to be, like, a lot of changes made, especially to a lot of health care programs, because that’s where a lot of spending happens.

Rovner: Yeah, I mean, sometimes they’ll agree on cuts and it’ll be like a 1% across the board, which itself can be a lot of money. But I mean, these are, these are sort of really deep cuts that would seriously hinder the ability of these programs to function, right?

Karlin-Smith: NIH for a number of years was operating on only getting budget increases that were not keeping up kind of with inflation and so forth. And they just finally, over the last few years, got back on track. Even though their budget seemed like it was going up, really, if you adjusted for inflation, it had been going down. And then when you have an agency like FDA, which, the line is always that they do an incredible amount of work on really a shoestring budget for the amount they regulate, so they never get — NIH sometimes gets, you know, that bipartisan popularity and does get those bigger increases back, and they never really get those big increases, so I think it would be harder for them also to get that back later on if they did get such big cuts.

Hellmann: There are like also a lot of health programs that just operate on flat funding from year to year, like Title X.

Rovner: Yeah, the family planning program.

Hellmann: And so obviously, like HHS said last year, We are only able to fund a certain number of providers, like, less than previously, because of inflation, and stuff like that. So obviously if you take a 14% cut to that, it would make it even harder.

Rovner: All right. Another major proposal in the package would institute or expand work requirements for people on food stamps and on Medicaid. Now, we’ve had work rules for people on welfare since the 1990s, but most people on Medicaid and food stamps, for that matter, either already work or can’t work for some reason. Why are the Republicans so excited about expanding or instituting work requirements?

Hellmann: I think there are a few reasons. No. 1, it’s a big money saver. The CBO [Congressional Budget Office] came out with their analysis this week showing that it would save the federal government about $109 billion. A lot of that would be shifted to the states because the way the bill is written, states would still be allowed to cover these individuals if they can’t prove that they’re working. But they’d have to pick up the costs themselves, which, I’ve seen experts questioning if that would really happen, even in states like, you know, New York and California, who probably wouldn’t want these people to lose coverage. But I think an argument that you hear a lot too, especially during the Trump administration when they were really pushing these, is they say that work is what provides fulfillment and dignity to people. Former CMS [Centers for Medicare & Medicaid Services] administrator Seema Verma talked about this a lot. The argument I heard a lot on the Hill this week is that Medicaid and other — SNAP [Supplemental Nutrition Assistance Program], TANF [Temporary Assistance for Needy Families], programs like that — trap people in poverty and that work requirements will kind of give them an incentive to get jobs. But as you said, like, it wouldn’t apply to most — you know, most people are already working. And most people who lost coverage under some of the previous iterations of this just didn’t know about it or they were unable to complete the reporting requirements.

Rovner: And to be clear, the CBO estimate is not so much because people would work and they wouldn’t need it anymore. It’s because people are likely to lose their coverage because they can’t meet the bureaucratic requirements to prove that they’re working. Shefali, you’re nodding. We’ve seen this before, right?

Luthra: I was just thinking, I mean, the savings, yes, they come from people losing their health insurance. That’s very obvious. Of course, you save money when you pay for fewer people’s coverage. And you’re absolutely right: “This will motivate people to work” argument has always been a little bit — complicated is a generous word. I think you could even say it’s a bit thin just because people do already work.

Rovner: And they — many of them work, they don’t earn enough money, really, to bring them out of poverty. And they don’t have jobs that offer health insurance. That’s the only way they’re going to get health insurance. All right. Well, where do we go from here with the debt ceiling? So now we’ve got this Republican plan that says work — everybody has to work and prove that they work and we’re going to cut all these programs — and the Democrats saying this is not a discussion for the debt ceiling, this is a separate discussion that should happen down the road on the budget. Is there any sign that either side is going to give here?

Hellmann: It doesn’t seem like it. Democrats have been saying, like, this is a non-starter. The president has been saying, like, we’re not going to negotiate on this; we want a clean increase in the debt ceiling, and we can talk about some of these other proposals that you want to pursue later. But right now, it seems like both sides are kind of at a standstill. And I think Republicans see, like, passing this bill yesterday as a way to kind of strengthen their hand and show that they can get all on the same page. But I just do not see the Senate entertaining a 14% cut or, like, Medicaid work requirements or any of this stuff that is just kind of extremely toxic, even to some, like, moderate Democrats over there.

Rovner: Yeah, I think this is going to go on for a while. Well, so at this high level, we’ve got this huge partisan fight going on. But interestingly, this week elsewhere on Capitol Hill things seem surprisingly almost bipartisan, dare I say. Starting in the Senate, the chairman and the ranking member of the Health, Education, Labor and Pensions Committee, Democrat Bernie Sanders and Republican Bill Cassidy, announced that they’ve reached agreement on a series of bills aimed at reining in prescription drug costs for consumers, including one to more closely regulate pharmacy benefit managers and others to further promote the availability of generic drugs. Sarah, we’ve talked about the target on the backs of PBMs this year. What would this bill do and what are the chances of it becoming law?

Karlin-Smith: So this bill does three things: One is transparency. They want to pull back the cover and get more data and information from PBMs so that they can better understand how they’re working. So I think the idea would then be to take future policy action, because one of the criticisms of this industry is it’s so opaque it’s hard to know if they’re really doing the right thing in terms of serving their customers and trying to save money and drug prices as they say they are. The other thing is it would basically require a lot of the fees and rebates PBMs get on drug prices to be given back directly to the health plan, which is sort of interesting because the drug industry has argued that money should be given more directly to patients who are paying for those drugs. And when that has scored by the CBO, that often costs money because that leads to PBMs using less money to lower people’s premiums, and premiums are subsidized from the government. So I’m curious if the reason why they designed the bill this way is to sort of get around that, although then I’m not sure exactly if you get the same individual … [unintelligible] … level benefit from it. And then the third thing they do is they want to eliminate spread pricing, which is where — this is really a pharmacy issue — where PBMs basically reimburse pharmacies less than they’re charging the health plans and, you know, their customers for the drug and kind of pocketing the difference. So I think, from what I’m seeing on the Hill, there’s a ton of momentum to tackle PBMs. And like you said, it’s bipartisan. Whether it’s this bill or which particular bills it’s hard to know, because Senate Finance Committee is sort of working on their own plan. A number of committees in the House are looking at it, other parts of the Senate. So to me, it seems like there’s reasonable odds that something gets done maybe this spring or summer on PBMs. But it’s hard to know, like, the exact shape of the final legislation. It’s pretty early at this point to figure out exactly how it all, you know, teases out.

Rovner: We have seen in the past things that are very bipartisan get stuck nonetheless. Well, across the Capitol, meanwhile, the House Energy and Commerce Committee is also looking at bipartisan issues in health care, including — as they are in the Senate — how to increase price transparency and competition, which also, I hasten to add, includes regulating PBMs. But, Jessie, there was some actual news out of the hearing at Energy and Commerce from Chiquita Brooks-LaSure, who runs the federal Medicare and Medicaid programs. What did she say?

Hellmann: So they’ve instituted two fines against hospitals that haven’t been complying with the price transparency requirements. So I think that brings the number of hospitals that they’ve fined to, like, less than five. Please fact-check that, but I’m pretty sure that I can count it on one hand.

Rovner: One hand. They have, they have actually fined a small number of hospitals under the requirement. Yeah. I mean, we’ve known — we’ve talked about this for a while, that these rules have been in effect since the beginning of 2022, right? And a lot of hospitals have just been not doing it or they’re supposed to be showing their prices in a consumer-understandable way. And a lot of them just haven’t been. And I assume CMS is not happy with this.

Hellmann: Yeah, so Brooks-LaSure said yesterday that CMS is no longer going to issue warnings for hospitals that aren’t making a good-faith effort to comply with these rules. Instead, they’ll move straight to what’s called the corrective action phase, where basically hospitals are supposed to, like, say what they’re going to do to comply with these. And after that, they could get penalized. So we’ll see if that actually encourages hospitals to comply. One of the fines that they issued is like $100,000. And so I think some hospitals are viewing this, you know, as a cost of doing business because they think it would cost them more to comply with the price transparency rules than it would to not comply with them.

Rovner: So transparency here is still a work in progress. There’s also a fight in the House over the very wonky-sounding site-neutral payment policy in Medicare, which, like the surprise bill legislation from a few years back, is not so much a partisan disagreement as a fight between various sectors in the health care system. Can you explain what this is and what the fight’s about?

Hellmann: So basically hospital outpatient departments or, like, physician offices owned by hospitals get paid more than, like, independent physician’s offices for providing things like X-rays or drug administration and stuff like that. And so this is —

Rovner: But the same care. I mean, if you get it in a hospital outpatient or a doctor’s office, the hospital outpatient clinic gets paid more.

Hellmann: Yeah. And there’s not much evidence that shows that the care is any different or the quality is better in a hospital. And so this has kind of been something that’s been getting a lot of attention this year as people are looking for ways to reduce Medicare spending. It would save billions of dollars over 10 years, I think one think tank estimated about 150 billion over 10 years. It’s getting a lot of bipartisan interest, especially as we talk more about consolidation in hospitals, you know, buying up these physician practices, kind of rebranding them and saying, OK, this is outpatient department now, we get paid more for this. There are fewer independent physician’s offices than there used to be, and members have taken a really big interest in how consolidation increases health care prices, especially from hospitals. So it does seem like something that could pass. I will say that there is a lot of heat coming from the hospital industry. They released an ad on Friday last week warning about Medicare cuts, so, they usually do whenever anyone talks about anything that could hurt their bottom lines. Very generalist ad and kind of those “Mediscare” ads that we’ve been talking about. So it’ll be interesting to see if members can withstand the heat from such a powerful lobbying force.

Rovner: As we like to say, there’s a hospital in every single district, and most of them give money to members of Congress, so anything that has the objection of the hospital industry has an uphill battle. So we’ll see how this one plays out. Let us turn to abortion. The fate of the abortion pill mifepristone is still unclear, although the Supreme Court did prevent even a temporary suspension of its approval, as a lower court would have done. Now the case is back at the 5th Circuit Court of Appeals, which has swiftly scheduled a hearing for May 17. But it still could be months or even years before we know how this is going to come out, right, Shefali?

Luthra: It absolutely could be. So the fastest that we could expect to see this case before the Supreme Court again, just — what from folks I’ve talked to is, I mean, we have this hearing May 17, depending on how quickly the 5th Circuit rules, depending on how they rule, there is a chance that we could see if we get, for instance, an unfriendly ruling toward mifepristone, the federal government could appeal to the Supreme Court this summer. We could see if the Supreme Court is willing to take the case. The earliest that means that they would hear it would be this fall, with a decision in the spring a year from now, but that would be quite fast. I think what’s striking about it is that we may all recall last year, when the Supreme Court issued its decision in the Dobbs case, they said this will put the issue of abortion back in the hands of the states, out of the judiciary, we will no longer be involved. And anyone at the time could have told you there’s no way that this would happen because it is too complicated of an issue, when you undo 50 years of precedent, to assume there will be no more legal questions. And here we are. Those critics have been proven right, because who could have seen that, once again, we’d have the courts being asked to step in and answer more questions about what it means when a 50-year right is suddenly gone?

Rovner: Indeed. And of course, we have the … [unintelligible] … This is going to be my next question, about whether this really is all going to be at the state level or it’s going to be at the state and the federal level. So as red states are rushing to pass as many restrictions as they can, some Republicans seem to be recognizing that their party is veering into dangerously unpopular territory, as others insist on pressing on. We saw a great example of this over the weekend. Former vice president and longtime anti-abortion activist Mike Pence formally split on the issue with former President Trump, with Pence calling for a federal ban and not just leaving the issue to the states. Nikki Haley, the former governor of South Carolina and the lone woman in the Republican field so far, managed to anger both sides with the speech she made at the headquarters of the hard-line anti-abortion group the Susan B. Anthony List. Haley’s staff had suggested ahead of time that she would try to lay out a middle ground, but she said almost nothing specific, which managed to irritate both full abortion abolitionists and those who support more restrained action. Is this going to be a full-fledged war in the Republican Party?

Luthra: I think it has to be. I mean, the anti-abortion group is still very powerful in the Republican Party. If you would like to win the nomination, you would like their support. That is why we know that Ron DeSantis pursued a six-week ban in Florida despite it being incredibly unpopular, despite it now alienating many people who would be his donors. This is just too important of a constituency to annoy. But unfortunately, you can’t really compromise on national abortion policy if you’re running for president. A national ban, no matter what week you pick, it’s not a good sound bite. We saw what happened last year when Sen. Lindsey Graham put forth his national 15-week ban: Virtually no other even Republicans wanted to endorse that, because it’s a toxic word to say, especially in this post-Dobbs environment, especially now that we have all of this polling, including NPR polling from yesterday, that showed us that abortion bans remain quite unpopular and that people don’t trust Republicans largely on this issue. I think this is going to be incredibly interesting because we are going to eventually have to see Nikki Haley take a stance. We will have to see Donald Trump, I think, frankly, be a bit more committal than he has been, because meanwhile, he has lately told people publicly that he would not issue any federal policy, would leave this up to the states, we also know that he has said different things in other conversations. And at some point those conflicts are going to come to a head. And what Republicans realize is that their party’s stance and the stance they need to take to maintain favor with this important group is just not a winning issue for most voters. People don’t want abortion banned.

Rovner: Yeah, it’s a real problem. And Republicans are seeing they have no idea how to sort of get out of this box canyon, if you will. Well, back in the states, things seem to be getting even more restrictive. In Oklahoma this week NPR has another of those wrenching stories about pregnant women unable to get emergency health care. This time, a woman, a mom of three kids already with a nonviable and cancerous pregnancy who was told literally to wait in the hospital parking lot until she was close enough to death to obtain needed care. And that case turned out not to be an outlier. A quote-unquote “secret shopper” survey of hospitals in Oklahoma found that a majority of the 34 hospitals contacted could not articulate what their policy was in case of pregnancy complications or how they would determine if the pregnant person’s life was actually in danger. I can’t imagine Oklahoma is the only state where this is the case. We have a lot of these bans and no idea where sort of the lines are, even if they have exceptions.

Luthra: We know that this is not isolated to Oklahoma. There is a lawsuit in Texas right now with a group of women suing the state because they could not access care that would save their lives. One of those plaintiffs testified in Congress about this yesterday. Doctors in virtually every state with an abortion ban have said that they do not know what the medical exceptions really are in practice other than that they have to wait until people are on death’s door because there isn’t — medical emergency isn’t really a technical term. These bills, now laws, were written without the expertise of actual physicians or clinicians because they were never really supposed to take effect. This really has been just another example of a way that the dog chased the car and now the dog has the car.

Rovner: And the dog has no idea what to do with the car. Well, meanwhile, in Iowa, the attorney general has paused the state’s policy of paying for abortions as well as emergency contraception for rape victims. This is where I get to rant briefly that emergency contraception and the abortion pill are totally different, that emergency contraception does not cause abortion — it only delays ovulation after unprotected sex and thus is endorsed for rape victims in Catholic health facilities across Europe. OK, end of rant. I expect we’re going to see more of this from officials in red states, though, right, with going — not just going after abortions, but going after things that are not abortion, like emergency contraception.

Luthra: And I mean, if we look at what many of the hard-line anti-abortion groups advocate, they don’t just want to get rid of abortion. They specifically name many forms of hormonal contraception, but specifically the emergency contraception Plan B, and they oppose IUDs [intrauterine devices]. It would just be so, so surprising if those were not next targets for Republican states.

Rovner: So abortion isn’t the only culture war issue being fought out in state legislatures. There’s also a parallel effort in lots of red states to curtail the ability of trans people, mostly but not solely teenagers, to get treatment or, in some cases, to merely live their lives. According to The Washington Post, as of the middle of this month, state legislators have introduced more than 400 anti-trans bills just since January. That’s more than the previous four years combined. Nearly 30 of them have become law. Now, I remember in the early aughts when anti-gay and particularly anti-gay marriage bills were the hot items in red states. Today, with some notable exceptions, gay marriage is as routine as any other marriage. Is it possible that all these attacks on trans people, by making them more visible, could have the same effect? In other words, could this have the opposite effect as the people who are pushing it intended? Or am I just looking for a silver lining here?

Luthra: I think it’s too soon to say. There isn’t incredible polling on this issue, but we do know that in general, like, this is not an issue that even Republicans pick their candidates for. It’s not like they are driven to the ballot box because they hate trans people this much. I wouldn’t at all be surprised if there is a backlash, just because what we are hearing is so, frankly, horrific. What I have been really struck by, in addition to the parallels to anti-gay marriage, have been the ways in which restrictions on access to health care for trans people really do parallel attacks to abortion in particular, thinking about, for instance, passing laws that restrict access to care for minors, passing laws that restrict Medicaid from paying for care, that restrict how insurance covers for care. It’s almost spooky how similar these are, because people often think minors are easier to access first. People often think health insurance is an easier, sort of almost niche issue to go for first. And what we don’t often see until afterward is that these state-by-state laws have made care largely inaccessible. The other thing that I think about all the time is that these are obviously, in both cases, forms of health care restriction that are largely opposed by the medical community, that are often crafted without the input of actual medical expertise, and that target health care that does feel incredibly difficult to extricate from the patient’s gender.

Rovner: Yeah. The other thing is that people are going from state to state, just like with abortion. In order to get health care, they’re having to cross state lines and in some cases move. I mean, we’re starting to see this.

Luthra: The high-profile example being Dwyane Wade, formerly of the Miami Heat, moving away from Florida because of his child.

Karlin-Smith: The other thing, Julie, you were saying in terms of how optimistic to be, in terms of maybe the other side of this issue sort of pushing back and overcoming it, is that Politico had this good story this week about doctors in states where this care is perfectly legal and permissible but they’re getting so many threats and essentially their health care facilities feel that they’re so much in danger that they are concerned about how to safely provide and help these people that they do want to help and give care, while also not putting their families and so forth in danger, which perhaps also has a parallel to some of how there’s tons of, like, constant protests outside abortion clinics. And people have volunteered for years just to kind of escort people so they can safely feel comfortable getting there, which of course is, you know, can be very traumatic to patients trying to get care.

Rovner: Yeah, the parallels are really striking. So we will watch that space too. All right. That is the news for this week. Now, we will play my “Bill of the Month” interview with Renuka Rayasam. Then we will come back and share our extra credit. We are pleased to welcome to the podcast Renuka Rayasam, who reported and wrote the latest KFF Health News-NPR “Bill of the Month” story. Renu, welcome to “What the Health?”

Renuka Rayasam: Thanks, Julie. Thanks for having me.

Rovner: So this month’s patient was pregnant with twins when she experienced a complication. Tell us who she is, where she’s from, and what happened.

Rayasam: Sure. Sara Walsh was 24 weeks pregnant with twins — it was Labor Day weekend in 2021 — and she started to feel something was off. She had spent a long time waiting to have a pregnancy that made it this far — eight years, she told me. But instead of feeling excited, she started to feel really nervous and she knew something was off. And so on Tuesday, she went to her regular doctor. And then on Wednesday, after that Labor Day, she went to her maternal fetal specialist, who diagnosed her with a pretty rare pregnancy complication that can occur when you have twins, when you have multiple fetuses that share blood unevenly through the same placenta. And it’s called twin-to-twin transfusion syndrome. And, you know — and this was Wednesday — she went into the office in the morning and she waited a long time for the doctor to kind of come back with the results, she and her husband, and just kind of spent the morning sort of back-and-forth between her maternal fetal specialist and her OB-GYN. And they told her she needed to get treatment immediately, that if she didn’t have treatment that she could lose one or both twins, she herself could even die. She needed to keep her fluid intake low. So they referred her to a specialist about four hours away from where she was. She was in Winter Haven, Florida, and they referred her to a specialist near Miami. And the specialist there apparently does not contract with any private insurance. And so that afternoon, hours after her diagnosis, she was packing her bags; she was getting ready to go, figuring out a place to stay, a hotel room and all that. And she gets a call from the billing office of this specialist in Coral Gables, Florida, near Miami. And they said, “Listen, we don’t contract with private insurance. You have to pay upfront for the pre surgical consultation for the surgery and then the post-surgical consult. And you need to have that money before you show up tomorrow in our office at 8 a.m.”

Rovner: And how much money was it?

Rayasam: About $15,000 in total for the consultations and the surgery itself. She told me she burst into tears. She didn’t want to lose these twins. She wasn’t given any option of shopping around for another provider. And she spent some time trying to figure out what to do. She couldn’t get a medical credit card because I guess there’s a 24-hour waiting period and she didn’t have that long. And so finally, her mother let her borrow her credit card. She checked into a hotel at midnight and at 8 a.m. the next morning she handed over her credit card and her mother’s credit card before she could have the procedure — before she could even see the doctor, I should say.

Rovner: And the outcome was medically good, right?

Rayasam: Yeah. The provider who did her surgery is a pioneer in this field. And that was why those doctors sent Sara to this provider, Dr. Ruben Quintero. He came up with this staging system that helps assess the symptom’s severity and even pioneered the treatment for it. But he sort of used all that to kind of say, OK, you have to pay me; I’m not even going to deal with insurance in this case. And so that afternoon, it was that Thursday, the day after she was diagnosed, she had a procedure, it went well, she had a couple of follow-ups in the following weeks. And then five weeks later, she delivered premature but otherwise healthy twin girls.

Rovner: So is that even legal for a doctor to say, “I’m not even going to look at you unless you pay me some five-figure amount”?

Rayasam: Generally, no. We have the federal No Surprises Act, as you know, and that’s meant to do away with surprise billing. But that was really designed for kind of inadvertent medical bills or surprises. Things get really complicated when there’s this appearance of choice where, you know, she had time to call the insurer, she had time to call the provider. It wasn’t as if she was unconscious and sort of rushed to the nearest doctor. Technically, she had a choice here. She could have chosen not to get the procedure. She could have gone to a different state. But obviously, those are not real choices in her situation when she needed the procedure so urgently. And so in those cases, you know, the billing experts I spoke with said this is a real loophole in federal billing legislation and state surprise billing legislation because the bill wasn’t a surprise. She knew how much to expect upfront. And that’s what makes this situation tricky.

Rovner: And she knew that the doctor wasn’t in network.

Rayasam: Absolutely. She knew the doctor wasn’t in network, and she knew how much she had to pay, and she willingly forked over the money, of course, as anyone would have in that situation or tried to in that situation.

Rovner: So after the fact, she went back to her insurance company to see if they could work something out, since it was pretty much the only place she could have gone at that point to get the treatment. But that didn’t go so well.

Rayasam: That didn’t go so well, and it’s one complication in this story that I myself don’t know what to make of, but the provider does not contract with any insurer, I should say. But he did take her insurance card and — or, the billing person did — and they say that they bill as a courtesy to the patient. So they file the paperwork for the patient. They say, “OK, your insurer will reimburse you. We’re going to provide all the paperwork.” In Sara’s case, it took a long time for this doctor and his practice to get Blue Cross Blue Shield the paperwork they needed to kind of pay for her claim. And in addition to that, they didn’t really send over the right paperwork right away. So it took a long time. And eventually she got only $1,200 back and she ended up paying far more than that out-of-pocket.

Rovner: And of course, the next obvious question is, doesn’t her insurance have an out-of-pocket maximum? How did she ever end up spending this much?

Rayasam: That’s a great question. We reached out to her insurer, and they didn’t really give us much of an explanation, but they, you know, on their billing statements and what they said to her was, “Hey, you went willingly out of network; this doesn’t qualify you for those out-of-pocket maximums.” They didn’t give us an explanation as to why. This seems to be a classic case of where those maximums should apply. But like I said, I think, you know, she had very little recourse. She tried to appeal the bills. She’s, you know, been on the phone with her insurer multiple times. The thing that makes this story more complicated is that it’s such a rare procedure and there aren’t that many providers in the country that even perform this procedure. So at first she was having to struggle with billing codes and all that with her insurance, so a lot of the people she was dealing with on the insurance side were really confused. It wasn’t something that they had a playbook for, knew what to do with, and that’s what made this a little bit more complicated.

Rovner: So what’s the takeaway here? I mean, obviously this was a rare complication, but if you multiply the number of rare complications of different things, you’re talking about a lot of people. Is there any way to get around this? I mean, it sounds like she did everything she could have in this case.

Rayasam: She did. In this case, it turns out there was another provider in Florida. There was no way for her to know that. Neither her OB-GYN nor the maternal fetal specialist told her about this other provider. I found out about it. I called around and did the reporter thing. And there are now four providers in Florida that will treat this. But of course, you know, if I was a patient, I wouldn’t shop around and risk my pregnancy either. So it’s unfortunate, in this case, there’s not much a person can do other than make sure that they’re keeping all the paperwork. And, you know, one thing that one of the billing experts I spoke with told me is that when you pay upfront, it makes things a lot harder. And in this case, like I said, she didn’t have a choice. But if there’s ever a way to get the bill on the back end, then there’s more of an incentive for the provider and the insurer to work together to get paid. But once the provider was paid, the insurer is not going to rush to reimburse the patient.

Rovner: And the provider is not going to rush to help the insurer figure out what to do. Ah well, another cautionary tale. Renu Rayasam, thank you so much.

Rayasam: Thank you.

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

Karlin-Smith: Sure. I took a look at a story in The Wall Street Journal, “Weight-Loss Drugmakers Lobby for Medicare Coverage. Adding Ozempic, Mounjaro to federal plans could stoke sales.” It really documents well sort of the range of lobbying organizations and groups and where they’re sort of putting money to try and get Medicare to shift its policies and cover treatments for obesity, which was something that in the early creations of Part D was banned. And I think largely at that time it was because weight loss was seen as more of a cosmetic treatment than something that impacted health in the same way we appreciate now.

Rovner: And also, there wasn’t anything that worked.

Karlin-Smith: Right. The things that prior to this, the things that were available at different times were not very effective and in some cases turned out to be fairly unsafe. And of course, now we have treatments that seem to work very well for a number of people, but there’s a fear of just how much money it would cost Medicare. So the other interesting thing in this story is they talk about some lawmakers in Congress thinking about ways to maybe narrowly start opening the floodgates to access by potentially maybe limiting it to people with certain BMIs [body mass indexes] or things like that to maybe not have the initial cost hit they might be concerned about with it.

Rovner: And of course, whether Medicare covers something is going to be a big factor in whether private insurance covers something. So it’s not just the Medicare population I think we’re talking about here.

Karlin-Smith: Right. There’s already I know lobbying going on around that. My colleague wrote a story a few weeks ago about Cigna sort of pushing back about having those drugs be included potentially in, like, the essential health benefits of the ACA [Affordable Care Act]. So it’s going to be, yeah, a broader issue than just Medicare.

Rovner: Yeah, it’s a lot. I mean, I remember when the hepatitis C drugs came out and we were all so, you know, “Oh my God, how much this is going to cost, but it cures hepatitis C.” But I mean, that’s not nearly as many people as we’re talking about here. Jessie, why don’t you go next?

Hellmann: My stories from Politico. It’s called “Gun Violence Is Actually Worse in Red States. It’s Not Even Close.” It takes a weird twist that I was not expecting. Basically, the premise is about how gun deaths are actually higher in areas like Texas and Florida. They have higher per capita firearm deaths, despite messaging from some Republican governors that it’s actually, like, you know, cities like Chicago and New York that are like war zones, I think it’s the former president said. The author kind of makes an interesting argument I didn’t see coming about how he thinks who colonized these areas plays into kind of like the culture. And he argues that Puritans like had more self-restraint for the common good. And so areas like that have less firearm deaths where, you know, the Deep South people were — had like a belief in defending their honor, the honor of their families. So they were kind of more likely to take up arms. Not sure how I feel about this argument, but I thought it was an interesting story and an interesting argument, so —

Rovner: It is. It’s a really good story. Shefali.

Luthra: My story is from The Washington Post. It is called “The Conservative Campaign to Rewrite Child Labor Laws.” It’s a really great look at this Florida-based group called the Foundation for Government Accountability, which, despite its innocuous-sounding name, is trying to help states make it easier to employ children. This is really striking because we have seen, in states like Arkansas, efforts to make it easier to employ people younger than 16 in some cases, which is just really interesting to watch in these states that talk about protecting children and protecting life to, to then make it easier to, to employ kids.

Rovner: And in dangerous profess — in dangerous jobs sometimes. I mean, we’re not talking about flipping burgers.

Luthra: No, no. We’re talking about working in, like, in meat plants, for instance. But I think what’s also interesting is that this same organization that has made it easier to employ children has also tried to fight things like anti-poverty and try to fight things like Medicaid expansion, which is just sort of, if you’re thinking about it from an access-to-health standpoint, like, anti-poverty programs and Medicaid are shown to make people healthier. It’s sort of a really interesting look into a worldview that in many ways uses one kind of language but then advance the policy agenda that takes us in a different direction.

Rovner: Maybe we should go back to to Jessie’s story and depend on who settled that part of the country. We shall see. Speaking of history, my story’s from The Nation, and it’s called “The Poison Pill in the Mifepristone Lawsuit That Could Trigger a National Abortion Ban,” by Amy Littlefield. And it’s about the Comstock Act, which is a law from the Victorian era — it was passed in 1873 — that banned the mailing of, quote, “lewd materials,” including articles about abortion or contraception. A lot has been written about the Comstock Act of late because it was used to justify part of the opinion in the original mifepristone case out of Amarillo. But what this article makes clear is that reviving the law is actually a carefully calculated strategy to make abortion illegal everywhere. So this is not something that just popped up in this case. It’s a really interesting read. OK, that is our show. As always. if you enjoyed 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 ever-patient producer, Francis Ying. As always, you can email us your comments or questions. We’re at whatthehealth@kff.org. Or you can tweet me, at least for now. I’m @jrovner. Sarah?

Karlin-Smith: I’m @SarahKarlin.

Rovner: Jessie.

Hellmann: @jessiehellmann.

Rovner: Shefali.

Luthra: @Shefalil.

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

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