Medicare may sound like an escape from the expensive world of U.S. health insurance, but it’s more complicated, and expensive, than many realize. And decisions seniors make when they sign up for the federal health insurance program can have huge consequences down the road.
Host Dan Weissmann speaks with Sarah Jane Tribble, KFF Health News’ chief rural health correspondent, about one of the biggest choices seniors must make: whether to enroll in traditional Medicare or the privatized version, Medicare Advantage.
Then, Weissmann shares practical tips about how soon-to-be seniors can avoid penalties and pick the plan that’s right for them.
Dan Weissmann @danweissmann Host and producer of “An Arm and a Leg.”
Previously, Dan was a staff reporter for Marketplace and Chicago’s WBEZ. His work also appears on All Things Considered, Marketplace, the BBC, 99 Percent Invisible, and Reveal, from the Center for Investigative Reporting.
Credits
Emily Pisacreta Producer
Adam Raymonda Audio wizard
Ellen Weiss Editor
This article was reprinted from khn.org, a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF – the independent source for health policy research, polling, and journalism.
Evangelical minister Eddie Hyatt believes in the healing power of prayer but “also the medical approach.” So on a February evening a week before scheduled prostate surgery, he had his sore throat checked out at an emergency room near his home in Grapevine, Texas.
A doctor confirmed that Hyatt had covid-19 and sent him to CVS with a prescription for the antiviral drug Paxlovid, the generally recommended medicine to fight covid. Hyatt handed the pharmacist the script, but then, he said, “She kept avoiding me.”
She finally looked up from her computer and said, “It’s $1,600.”
The generally healthy 76-year-old went out to the car to consult his wife about their credit card limits. “I don’t think I’ve ever spent more than $20 on a prescription,” the astonished Hyatt recalled.
That kind of sticker shock has stunned thousands of sick Americans since late December, as Pfizer shifted to commercial sales of Paxlovid. Before then, the federal government covered the cost of the drug.
The price is one reason Paxlovid is not reaching those who need it most. And patients who qualify for free doses, which Pfizer offers under an agreement with the federal government, often don’t realize it or know how to get them.
“If you want to create a barrier to people getting a treatment, making it cost a lot is the way to do it,” said William Schaffner, a professor at Vanderbilt University School of Medicine and spokesperson for the National Foundation for Infectious Diseases.
Public and medical awareness of Paxlovid’s benefits is low, and putting people through an application process to get the drug when they’re sick is a non-starter, Schaffner said. Pfizer says it takes only five minutes online.
It’s not an easy drug to use. Doctors are wary about prescribing it because of dangerous interactions with common drugs that treat cholesterol, blood clots, and other conditions. It must be taken within five days of the first symptoms. It leaves a foul taste in the mouth. In one study, 1 in 5 patients reported “rebound” covid symptoms a few days after finishing the medicine — though rebound can also occur without Paxlovid.
A recent JAMA Network study found that sick people 85 and older were less likely than younger Medicare patients to get covid therapies like Paxlovid. The drug might have prevented up to 27,000 deaths in 2022 if it had been allocated based on which patients were at highest risk from covid. Nursing home patients, who account for around 1 in 6 U.S. covid deaths, were about two-thirds as likely as other older adults to get the drug.
Shrunken confidence in government health programs is one reason the drug isn’t reaching those who need it. In senior living facilities, “a lack of clear information and misinformation” are “causing residents and their families to be reluctant to take the necessary steps to reduce covid risks,” said David Gifford, chief medical officer for an association representing 14,000 health care providers, many in senior care.
The anti-vaxxers spreading falsehoods about vaccines have targeted Paxlovid as well. Some call themselves anti-paxxers.
“Proactive and health-literate people get the drug. Those who are receiving information more passively have no idea whether it’s important or harmful,” said Michael Barnett, a primary care physician at Brigham and Women’s Hospital and an associate professor at Harvard, who led the JAMA Network study.
In fact, the drug is still free for those who are uninsured or enrolled in Medicare, Medicaid, or other federal health programs, including those for veterans.
That’s what rescued Hyatt, whose Department of Veterans Affairs health plan doesn’t normally cover outpatient drugs. While he searched on his phone for a solution, the pharmacist’s assistant suddenly appeared from the store. “It won’t cost you anything!” she said.
As Hyatt’s case suggests, it helps to know to ask for free Paxlovid, although federal officials say they’ve educated clinicians and pharmacists — like the one who helped Hyatt — about the program.
“There is still a heaven!” Hyatt replied. After he had been on Paxlovid for a few days his symptoms were gone and his surgery was rescheduled.
About that $1,390 list price
Pfizer sold the U.S. government 23.7 million five-day courses of Paxlovid, produced under an FDA emergency authorization, in 2021 and 2022, at a price of around $530 each.
Under the new agreement, Pfizer commits to provide the drug for the beneficiaries of the government insurance programs. Meanwhile, Pfizer bills insurers for some portion of the $1,390 list price. Some patients say pharmacies have quoted them prices of $1,600 or more.
How exactly Pfizer arrived at that price isn’t clear. Pfizer won’t say. A Harvard study last year estimated the cost of producing generic Paxlovid at about $15 per treatment course, including manufacturing expenses, a 10% profit markup, and 27% in taxes.
Pfizer reported $12.5 billion in Paxlovid and covid vaccine sales in 2023, after a $57 billion peak in 2022. The company’s 2024 Super Bowl ad, which cost an estimated $14 million to place, focused on Pfizer’s cancer drug pipeline, newly reinforced with its $43 billion purchase of biotech company Seagen. Unlike some other recent oft-aired Pfizer ads (“If it’s covid, Paxlovid”), it didn’t mention covid products.
Connecting with patients
The other problem is getting the drug where it is needed. “We negotiated really hard with Pfizer to make sure that Paxlovid would be available to Americans the way they were accustomed to,” Department of Health and Human Services Secretary Xavier Becerra told reporters in February. “If you have private insurance, it should not cost you much money, certainly not more than $100.”
Yet in nursing homes, getting Paxlovid is particularly cumbersome, said Chad Worz, CEO of the American Society of Consultant Pharmacists, specialists who provide medicines to care homes.
If someone in long-term care tests positive for covid, the nurse tells the physician, who orders the drug from a pharmacist, who may report back that the patient is on several drugs that interact with Paxlovid, Worz said. Figuring out which drugs to stop temporarily requires further consultations while the time for efficacious use of Paxlovid dwindles, he said.
His group tried to get the FDA to approve a shortcut similar to the standing orders that enable pharmacists to deliver anti-influenza medications when there are flu outbreaks in nursing homes, Worz said. “We were close,” he said, but “it just never came to fruition.” “The FDA is unable to comment,” spokesperson Chanapa Tantibanchachai said.
Los Angeles County requires nursing homes to offer any covid-positive patient an antiviral, but the Centers for Medicare & Medicaid Services, which oversees nursing homes nationwide, has not issued similar guidance. “And this is a mistake,” said Karl Steinberg, chief medical officer for two nursing home chains with facilities in San Diego County, which also has no such mandate. A requirement would ensure the patient “isn’t going to fall through the cracks,” he said.
While it hasn’t ordered doctors to prescribe Paxlovid, CMS on Jan. 4 issued detailed instructions to health insurers urging swift approval of Paxlovid prescriptions, given the five-day window for the drug’s efficacy. It also “encourages” plans to make sure pharmacists know about the free Paxlovid arrangement.
Current covid strains appear less virulent than those that circulated earlier in the pandemic, and years of vaccination and covid infection have left fewer people at risk of grave outcomes. But risk remains, particularly among older seniors, who account for most covid deaths, which number more than 13,500 so far this year in the U.S.
Steinberg, who sees patients in 15 residences, said he orders Paxlovid even for covid-positive patients without symptoms. None of the 30 to 40 patients whom he prescribed the drug in the past year needed hospitalization, he said; two stopped taking it because of nausea or the foul taste, a pertinent concern in older people whose appetites already have ebbed.
Steinberg said he knew of two patients who died of covid in his companies’ facilities this year. Neither was on Paxlovid. He can’t be sure the drug would have made a difference, but he’s not taking any chances. The benefits, he said, outweigh the risks.
This article was reprinted from khn.org, a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF – the independent source for health policy research, polling, and journalism.
A new study of more than 2,000 dialysis facilities randomized to a new Medicare payment model aimed to improve outcomes for patients with end-stage kidney disease has found that facilities that disproportionately serve populations with high social risk have lower use of home dialysis and transplant waitlisting and fewer kidney transplants. These facilities thus received reduced performance scores and reimbursement from Medicare.
A high proportion of non-Hispanic Blacks and of those initiating dialysis while uninsured or Medicaid-covered also was found to be an indicator of lower use of home dialysis and transplant waitlisting and fewer kidney transplants.
The goal of the study authors was to identify how this new payment model would help or hurt dialysis facilities treating patients with high social risk. Their analysis raises concerns that sites treating these vulnerable patients may fare poorly under the new payment model and ultimately might not have sufficient funding to remain open and care for patients.
The rate of home dialysis in the U.S. is significantly lower than that of other developed nations. A kidney transplant is considered the best option for most patients with end- stage kidney disease.
The new study explored the first year (2021) of the End-Stage Renal Disease Treatment Choices Model, which was developed to encourage greater use of home dialysis and kidney transplants for Medicare beneficiaries. Individuals of any age with this condition are typically eligible for Medicare coverage.
We found that, unfortunately, the dialysis facilities that treated patients with higher social risk, including those facilities that serve higher proportions of patients who were non-Hispanic Black or Hispanic and those who were dually eligible for Medicaid and Medicare as well as those living in a highly disadvantaged neighborhood, were more likely to be financially penalized under this model.”
Rachel Patzer, PhD, MPH, study co-author, president and CEO of Regenstrief Institute and Leonard Betley Professor of Surgery at Indiana University School of Medicine
It is likely that the below average outcomes were a result of the socioeconomic issues faced by these patients, factors that are beyond the control of the facilities that serve them. Recognizing this, CMS had added a risk-stratification component to the payment model for subsequent years. However, analysis presented in the paper suggests that this program modification will not be sufficient to address the problem.
“In the first year, this payment scheme inordinately penalized facilities that serve higher proportions of patients with high social risk,” said study first author Kalli Koukounas, MPH, a graduate student at Brown University School of Public Health. “As we’ve seen other pay-for-performance programs do in the past, this model, in its first year, imposed penalties at a greater rate on facilities that serve high-risk populations.”
“This is an important finding because dialysis facilities are typically considered the medical home for patients, and facilities that disproportionately serve patients with higher social risk factors may need additional resources and care to support patients,” noted Dr. Patzer. “Much of our prior work has identified stark racial and socioeconomic inequities in access to optimal kidney failure care across the United States. We want to ensure that these facilities have more, not fewer, resources to take care of those patients.”
Kidney failure disproportionately impacts socially disadvantaged communities due to upstream social determinants of health over decades. Major causes of kidney disease and end stage kidney failure include diabetes, obesity and hypertension.
Research conducted by this multi-institutional study team was funded by the National Institutes of Health’s National Institute on Minority Health and Health Disparities (PIs: Amal Trivedi, M.D., MPH, and Rachel Patzer, PhD, MPH). Dr. Trivedi, of Brown University, is the senior author of the study. Kelsey Drewry, PhD, M.A., of Regenstrief and Indiana University School of Medicine, is a co-author.
The study authors conclude that their “findings, coupled with the escalation of penalties to as much as 10 percent in future years, support monitoring the ETC [End-Stage Renal Disease Treatment Choices] model’s continued impact on dialysis facilities that disproportionately serve patients with social risk factors, as well as its influence on outcomes and disparities in care among patients treated in these sites.”
Source:
Journal reference:
Koukounas, K. G., et al. (2024). Social Risk and Dialysis Facility Performance in the First Year of the ESRD Treatment Choices Model. JAMA. doi.org/10.1001/jama.2023.23649.
Pharmaceutical companies that manufacture insulin made headlines last year when they voluntarily agreed to provide discount cards that lower the monthly cost of insulin for many people to $35.
But getting your hands on this card — and persuading a pharmacist to accept it — can be a hassle.
In this episode of “An Arm and a Leg,” producer Emily Pisacreta speaks with “insulin activists” and pharmaceutical experts to find out what this change in prices means for people with diabetes and why the fight for affordable insulin isn’t over yet.
Host and producer of “An Arm and a Leg.” Previously, Dan was a staff reporter for Marketplace and Chicago’s WBEZ. His work also appears on All Things Considered, Marketplace, the BBC, 99 Percent Invisible, and Reveal, from the Center for Investigative Reporting.
Note: “An Arm and a Leg” uses speech-recognition software to generate transcripts, which may contain errors. Please use the transcript as a tool but check the corresponding audio before quoting the podcast.
Dan: Hey there. Right after the holidays, I got an email from a listener named Brianna.It started, “Happy new year Dan! I was just reading the news about the price of insulin going down to $35! Is that for everyone?”
And I was like, Huh. I had a sense that there was some news about the price of insulin, but 35 dollars a month for everyone? That sounded like a BIG reduction. And big news.I googled the latest stories, and I was… not totally sure what I was seeing.
I was definitely seeing some new stories about people paying 35 bucks from here on out. And there seemed to be some federal law involved, and politicians were patting themselves on the back. But it just wasn’t totally clear: Was insulin now 35 dollars for everyone? Did the outrageous price of insulin get solved while I wasn’t looking?
And I mean, I’ve kinda been looking. We’ve done a couple of episodes about the price of insulin already — because insulin is iconic. It represents the wild cost of prescription drugs in this country. More than 8 million Americans take insulin to treat their diabetes – and for some, going without it could actually kill you.
And its price got jacked up so much — huge multiples over like ten years — — that one in four of those people who couldn’t go without… took to rationing: Seeing how much they could go without, short of actually dying.
So I asked our senior producer Emily Pisacreta to take the case.
Emily: I feel more like the senior insulin correspondent, which is fine with me as the resident type 1 diabetic! And a lot has happened since the last time we talked about insulin on this show. We really do need an update.
Dan: This is an “Arm and a Leg”, a show about why healthcare costs so freaking much, and what we can maybe do about it. I’m Dan Weissmann, I’m a reporter and I like a challenge. So our job here is to take one of the most enraging, terrifying, depressing parts of American life, and bring you something entertaining, empowering and useful.
Today we have a question: what’s going on with insulin? Is it $35 now?
Emily: Well, there have been some BIG improvements — bigger than I thought when I started reporting. A lot of people can get their monthly supply of insulin for just $35. But it is oversimplified to say it just costs $35 now. And the people who have been fighting to lower the price of insulin over the past decade? They’re still very pissed. So let me walk you through what changed, what led to those changes, and what’s still unresolved.
Dan: OK!
Emily: For years now, there’s been a giant push from people with diabetes to get the federal government to do something about the high cost of insulin. In 2022, finally something came through. I’m talking about a provision in Inflation Reduction Act.
Dan: Yes– I remember this– the Inflation Reduction Act was a big infrastructure bill that included, like renewable energy subsidies, and– honestly, this is the reason that I remember the bill, because we did an episode about this part– letting medicare negotiate some drug prices?
Emily: Exactly. It said people on Medicare would be able to get a month’s supply of insulin for no more than $35 out of pocket. But of course that left a big gaping hole. BECAUSE that’s cool for people on Medicare, but what about the rest of us? And the pharma companies were feeling the heat. Here’s President Biden in his State of the Union last year:
President Biden: Big pharma has been unfairly charging people hundreds of dollars, four to $500 a month making record profits. Not anymore. Not anymore.
Emily: By the way, those pharma companies? There’s three of them who make insulin.
That’s the American company Eli Lilly, the Danish company Novo Nordisk, and the French company Sanofi. OK so: not long after Joe Biden talked about their record profits, the insulin makers were back in the news. …
Eli Lilly was the first to announce they were going to slash prices on several of their most popular insulins, and limit out of pocket spending to $35 a month.
Fox News: This is a big story.
Next, Novo Nordisk and Sanofi made similar announcements.
CNN: Millions of Americans are affected by this major news this morning for millions of people suffering from diabetes and high prescription drug costs.
Basically, the insulin manufacturers all said hey, you’re not covered by this Medicare thing? We’re going to bring your copay down to $35 ourselves. So if you have commercial insurance Print out this card, take it to the pharmacy, and your copay will be no more than $35 for a month’s supply of insulin.
Dan: And what if you’re uninsured?
Emily: Well, they have a card for that, too.
Dan: OK so what I’m hearing is you need a card.
DAN: Yes. How do you get one?
Emily: The insulin makers set special phone numbers you can call. Or you can visit their websites, fill out a little form, and download the card.
Dan: Sounds simple, unless I’m missing something?
Emily: In all honesty, I had no problem with those steps. But I wouldn’t assume that’s the case for everyone. And I’m also not rationing insulin right now.
Zoe Witt: When you are rationing insulin, maybe you aren’t even fully rationing insulin yet, but you don’t know how you’re going to get Your next prescription, your next fill of insulin…You are in crisis. Like, you, you do not have the capability to sift through these websites. It’s very confusing. It’s very overwhelming.
Emily: This is someone who frequently speaks to people struggling to afford insulin.
Zoe Witt: my name is Zoe Witt. I work with Mutual Aid Diabetes.
Emily: Mutual Aid Diabetes. That’s an all volunteer group that has banded together to help diabetics get what they need, when they need it. They help people with cash and with free diabetes supplies, including insulin, no questions asked. That means Zoe knows the ins and outs of every obstacle to getting insulin.
Zoe Witt: Our healthcare system is like a whack a mole from hell.
Emily: And Zoe reminds me: if you’re not taking enough insulin, you probably feel awful. Maybe not even thinking straight. And it can affect your eyes, making it hard to read.
Zoe Witt: It just is unmanageable
Emily: Zoe says they talk with people all the time who are too stressed out or too debilitated to download these cards and use them. Diabetes folks walk people through the process. And once someone has the card… Mutual Aid Diabetes gives people the 35 bucks, too, if they say they need it. Because $35 can be a barrier for a lot of people. And it’s actually $70 sometimes if you use 2 types of insulin at once, which lots of people do… myself included.
Dan: Wow. OK. But then once people have the cards they typically have no problem?
Emily: Well, your pharmacist has to know what they’re doing, too. So sometimes it means a patient having to educate their pharmacist– or even bring the doctor in to help troubleshoot — which is no picnic. And people with diabetes are always having to deal with insurance roadblocks at the pharmacy, so I don’t want to make anything sound simpler than it is.
Dan: It’s like a whack a mole from hell!
Emily: Exactly! And the cards don’t solve everything. Especially this: if you have insurance, these cards only apply to the insulin your insurance plan already covers. If you normally need a prior authorization to get the right insulin for you… that is still the case.
Dan: Right. Okay. like prior authorization is this roadblock to getting all kinds of treatment, that you and your doctor agree that you should have, and your insurance company can say, we disagree. We’re s not authorizing this. And then you’re stuck.
Emily: Right.
Dan:But in terms of what the pharma companies. can do to kind of offer you a deal. They’re basically doing it. Is that right?
Emily: I think that’s fair to say.
Dan: That’s super interesting. All right. So it’s not solved, but this is a big step forward. And what’s not solved is: some people are still on the hook for the list price for insulin — the price without any discounts or insurance or whatever. But you found big improvements there too, right?
Emily: Yes! When the companies announced all these discount cards, they announced a whole other big change, too. Slashing the list prices of a bunch of different insulins by up 75%. So a vial that once was north of $300 is now being listed at around $70.
Dan: OK, that sounds like a big improvement.
Emily: It’s a big, big deal. Actual price reductions are what diabetes advocates have been demanding all along. And… while these are still the highest prices in the world for these same insulins, to see them drop from triple to double digits, it’s wild.
Dan: I sense that there’s a “but” here.
Emily: Well, the Big Three didn’t lower the price of every type of insulin, only ones that have been around since the 1990s or early 2000s. Newer insulins that work faster or last longer are not included here.
Dan: And I’m guessing not all insulins work the same way.
Emily: Right. Some people can switch between types or brands of insulin easily. For other people, there can be allergies or one works better with their body with another kind. It’s complicated. It’s medicine! AND… there have been some issues with pharmacies actually stocking lower list price insulin. That is a whole ‘nother saga… an episode for another day. But the important thing is… a bunch of insulin is a lot cheaper now.
Dan: Wow. Emily, you said right at the top: The changes here are bigger and better than you realized before you started reporting.
Emily: Yes but there’s still a lot more to say.
Right. After the break, we’ll’ hear from you about why these changes happened NOW. And what it means for people with diabetes and really all of us…
[midroll]
So. We have seen some big changes in the last year — including DRUG COMPANIES expanding their discount programs and lowering the sticker prices on insulin, dramatically. Why now? I’m guessing this wasn’t because they had a big change of heart.
Emily: I can’t speak to what’s in pharma’s hearts. But I did talk to someone who knows a lot about pharma’s brain.
Ed Silverman: my name is Ed Silverman, and I work at Stat News, a health and life sciences website,
Emily: I’m a big fan of Stat News
Dan: Me too, man! Their reporting is great.
Emily: And Ed Silverman. He’s been covering the pharmaceutical industry for almost 30 years. He thinks activism from people with diabetes over the years created political pressure that played a big role in the decision to slash prices. But there was also something kind of hidden at work.
Ed Silverman: It’s not altruism, here was a real mechanism, government mechanism in place that helped change the equation and therefore the thinking back at the companies.
Dan: OK… what is he talking about?
Emily: So, Dan: do you remember the stimulus bill, the American Rescue Plan?
Dan: I’m starting to feel like this episode is a quiz on recent-ish legislation. And I think I’m gonna do pretty well here:.The American Rescue Plan was a trillion dollar stimulus that Joe Biden got passed right after he got into office– am I right?
Emily: OK, hotshot. Do you remember how in part 8 section 9816 they sunsetted the limit on the maximum rebate for single source drugs and innovator multiple source drugs?
Dan: Um, busted. No.
Emily: Ok so here’s the deal: it’s obviously kinda wonky so I’ll simplify– in that little section Congress made a tweak to Medicaid, basically raising penalties on drug-makers for jacking up prices too far, too fast. So if you’re a pharma company who has raised the price of a drug by a lot very quickly, which is true of insulin, and a lot of people on Medicaid use your drug, which is also true of insulin, then you have to pay a big penalty. In the case of insulin, that penalty would be more than you’d make selling the insulin to Medicaid. A LOT more: So, unless you bring the price back down, you’re going to owe Medicaid a lot of moolah. And those penalties were set to kick in January 1st 2024.
Dan: So you’re telling me: Part of what the pharma companies did here came right out of a small part of a giant federal law from 2021.
Emily: Yep. And there’s another big wheel turning in the background here. Novo Nordisk and Eli Lilly, two companies who really got their start by selling insulin, now make other diabetes drugs — drugs that are now increasingly used for weight loss. And it’s a bonanza.
GMA: It is literally the hottest drug in the country right now.
Fox News: all people are talking about these days is Ozempic, wegovy. Oh my gosh, this person lost 20 pounds. This person lost 50 pounds.
Ozempic Ad: [Jingle:] “Oh, Oh, Oh, Ozempic!
[Announcer:] Once weekly Ozempic is helping many people with type 2 diabetes like James lower their blood sugar.
Emily: Drugs like Ozempic, Wegovy, Mounjaro. They’ve been in super high demand. And there’s been a ton of hype about their various potential health benefits. For weight loss, for heart health. Scientists are even interested in whether it can help people with substance use disorders. Meanwhile, for Eli Lilly and Novo Nordisk, the returns on these drugs dwarf anything else they’re selling. Novo Nordisk even became the biggest company in Europe – for like a minute… but still.
Dan: OK, this is interesting, but what does it have to do with the price of insulin?
Emily: I’d wondered… maybe these companies can just better afford to buy some political peace by lowering insulin prices, because they are making so much bank on these new drugs, ? Ed Silverman had a take on that.
Ed Silverman: It makes perfect sense that these cash cows, these medicines that are used for diabetes and, weight loss are going to become increasingly important to their bottom line more than other medicines
Emily: More than insulin. And they’re selling so much so fast, they can hardly keep up with demand. Which could end up affecting people who need insulin.
Dan: Wait, how?
Emily: Look, for example, in November, Novo Nordisk said they were investing 3 and half billion dollars into ramping up production of injection pens for Wegovy, one of their top drugs in this category. Less than a week later, Novo announced they would be phasing out one of their insulin products from the US market – an insulin called Levemir. It’s one of the insulins whose prices they just dropped. And… coincidence… Levemir also comes in a pen.
Dan: So Novo Nordisk is phasing out an insulin pen so they can make more Wegovy pens?
Emily: Well, we don’t know that for sure. But Novo Nordisk did tell me that “manufacturing constraints” were part of why they’re dumping Levimir. They said it was one of several reasons and also wrote: “We made this decision after careful consideration and are confident that given the advanced notice, U.S. patients will have access to alternative treatments and can transition to other options.
Dan: Huh. OK.
Emily: But even if pulling this insulin Levemir off the market had nothing to do with their trouble meeting the demand for their big blockbuster drug… it brings to mind an important question about all the changes we talked about today — whether it’s the copay savings or the lowered list prices. Here’s Ed Silverman.
Ed Silverman there’s no guarantee that the companies will keep these in place. Maybe after time, some of the attention on insulin is diverted and maybe eighteen months from now, one company might quietly roll back some of the Benefits, if you want to use that word, there’s nothing requiring them to maintain the steps they’ve taken.
Emily: I asked all three insulin makers about this. None of them promised there would never be any backsies. Lilly wrote back “Lilly is committed to ensuring all patients can access any Lilly medicine they need” — and touted their efforts to date. Similarly, Sanofi wrote “We continually review our affordability offerings to support our aim that no one should struggle to pay for their insulin. Novo Nordisk’s response was “Novo Nordisk increases the price of some of our medicines each year, in response to changes in the healthcare system, market conditions, and the impact of inflation.”
Dan: Yeah, that especially does not sound like a pinky-swear, no-backsies kind of response.
Emily: AND that’s not much comfort for insulin activists. Folks like Shaina Kasper, who works for T1International. They’re a group that’s been at the forefront of this fight for years. I Asked her…
Emily-on-tape: So is this issue of high insulin prices just resolved now?
Shaina Kasper: No, it hasn’t been. It’s been really frustrating…
Emily Shaina and others are worried that the announcements from the manufacturers about savings cards and voluntary list price reductions will take the pressure off the government to do something more sweeping. Because for now…
Shaina: The manufacturers really hold all of the power here And if patients are counting on these programs to literally be able to survive, that has life and death consequences
Dan: This question about who holds the power, it reminds me of a story we did a few months ago… the one about how the writer John Green led a kind of online crusade targeting the drug-maker Johnson & Johnson. And how, even though the pressure campaign worked — J & J ended up allowing lower-priced versions of an important tuberculosis drug — activists who worked on the issue were like: It’s a problem that Johnson & Johnson has the power to say yes or no here..
Emily: Exactly. That which pharma giveth, pharma can taketh. At least the way things are set up now. Now I should say, all three companies told me they plan to continue their affordability offerings. But if insulin continues to be the poster child for high drug prices, prices virtually everyone in America agrees are too high…it does raise the question: are voluntary programs from pharmaceutical companies the solution we want? To Zoe from Mutual Aid Diabetes, the answer is no. They find these manufacturer savings cards kind of a bitter pill… no pun intended.
Zoe Witt: there’s certainly no justice in these programs,
Emily: And zoe for one would say that justice is overdue.
Zoe Witt: These companies have price gouged us. for years, making obscene amounts of money. Then, presumably, as, we’re often told is the justification for these ridiculous prices, they did research and development for more diabetes drugs, which are Ozempic, Monjoro, etc. And now, these companies, for, the next 15 years, are set to make, billions and billions of dollars, on these drugs,
Emily: I asked the big three insulin manufacturers about what Zoe said – about how angry folks like them are over the cost of insulin. Novo Nordisk said “we continually review and revise our offerings as well as work with diverse stakeholders to create solutions for differing patient needs. ” And Sanofi and Lily both said something very similar.
Emily: So… in the end– or at least for now– here’s the answer to our listener’s question…. There are more avenues than ever to get a month’s supply of insulin for $35. Great. It may be a lot easier to avoid rationing your insulin now than it was a couple years ago. That’s also really great. But people with diabetes do not think this fight is over.
Dan: So what DO they want?
Emily: Some people still want the federal government to just put a cap on what people pay for insulin, like by law.. Others are working to build alternatives to the existing pharmaceutical industry, like California’s CalRx program.
Dan: Cal Rx… now you’re calling back our story from the last time we talked about insulin.
Emily: Yep, Cal Rx is the state of California’s attempt to enter the insulin market, to introduce some low priced generics and sell them essentially at cost. Other states are joining in. Even if some of these specific plans fall apart — even if California somehow can’t get its government-sponsored insulin to market, even if Pharma rolls back some of the discounts…the past few years have been enormous for people with diabetes. Mostly because they’ve found each other.
Zoe Witt: I was rationing insulin in 2018, I didn’t even know that there was a term for it. I didn’t know other people were doing it. I know a lot of people died that year. And there were multiple occasions where I, in retrospect, definitely almost died. And the one good thing that has, that has happened between now and then is that people have been talking about it and People are now more comfortable telling others that they’re struggling, that they can’t get their insulin.
Emily: Connecting with Mutual Aid Diabetes or other networks to get or give help.
Zoe Witt: We’re all keeping each other alive, like to me, that’s the number one thing that has changed.
Emily: I think that’s a huge lesson here, and a takeaway that’s not new on this show. Keeping each other alive — or even just keeping each other from getting bankrupted by the medical system — is up to us. And while a mutual aid group modeled exactly like Mutual Aid Diabetes may not work for every disease or every drug, Zoe says they’re more than willing to talk to anyone who might be interested in trying.
Zoe Witt: I mean, we’ve even had people ask, like, is there like a mutual aid asthma or something like for inhalers?
Emily: Their advice?
Zoe Witt: I think that, you know, to start, you would want, like, probably at least, like, five to ten “ride-or dies,” like, people that are really willing to, like, go the extra mile,
Dan: Five to ten– that just does not sound like that many! (I mean, I think.) One thing I’m taking away is: This is a lot of activism over a long time, that eventually had a big effect. Another thing I’m taking away here? Sneaky policy changes — like lifting the Medicaid rebate cap — can make a huge difference. God bless whatever nerds are writing the next little bit of law to sneak into a giant bill, like a hacker with a virus.
Emily: Totally. OK. I gotta take a shot, and eat my lunch.
Dan: Go for it. We’ll be back with a new episode in a few weeks. Till then, take care of yourself.
This episode of an arm and a leg was produced by Emily Pisacreta and me, Dan Weissman and edited by Ellen Weiss.
Adam Raymonda is our audio wizard. Our music is by Dave Weiner and blue dot sessions.
Gabrielle Healy is our managing editor for audience. She edits the first aid kit newsletter.
Bea Bosco is our consulting director of operations. Sarah Ballama is our operations manager.
And Arm and a Leg is produced in partnership with KFF Health News. That’s a national newsroom producing in depth journalism about healthcare in America and a core program at KFF, an independent source of health policy research, polling and journalism.
Zach Dyer is senior audio producer at KFF Health News. He’s editorial liaison to this show.
And thanks to the Institute for Nonprofit News for serving as our fiscal sponsor, allowing us to accept tax exempt donations. You can learn more about INN at INN. org.
Finally, thanks to everybody who supports this show financially– you can join in any time at arm and a leg show dot com, slash, support — and thanks for listening.
“An Arm and a Leg” is a co-production of KFF Health News and Public Road Productions.
Mary Delgado’s first pregnancy went according to plan, but when she tried to get pregnant again seven years later, nothing happened. After 10 months, Delgado, now 34, and her partner, Joaquin Rodriguez, went to see an OB-GYN. Tests showed she had endometriosis, which was interfering with conception. Delgado’s only option, the doctor said, was in vitro fertilization.
“When she told me that, she broke me inside,” Delgado said, “because I knew it was so expensive.”
Delgado, who lives in New York City, is enrolled in Medicaid, the federal-state health program for low-income and disabled people. The roughly $20,000 price tag for a round of IVF would be a financial stretch for lots of people, but for someone on Medicaid — for which the maximum annual income for a two-person household in New York is just over $26,000 — the treatment can be unattainable.
Expansions of work-based insurance plans to cover fertility treatments, including free egg freezing and unlimited IVF cycles, are often touted by large companies as a boon for their employees. But people with lower incomes, often minorities, are more likely to be covered by Medicaid or skimpier commercial plans with no such coverage. That raises the question of whether medical assistance to create a family is only for the well-to-do or people with generous benefit packages.
“In American health care, they don’t want the poor people to reproduce,” Delgado said. She was caring full-time for their son, who was born with a rare genetic disorder that required several surgeries before he was 5. Her partner, who works for a company that maintains the city’s yellow cabs, has an individual plan through the state insurance marketplace, but it does not include fertility coverage.
Some medical experts whose patients have faced these issues say they can understand why people in Delgado’s situation think the system is stacked against them.
“It feels a little like that,” said Elizabeth Ginsburg, a professor of obstetrics and gynecology at Harvard Medical School who is president-elect of the American Society for Reproductive Medicine, a research and advocacy group.
Whether or not it’s intended, many say the inequity reflects poorly on the U.S.
“This is really sort of standing out as a sore thumb in a nation that would like to claim that it cares for the less fortunate and it seeks to do anything it can for them,” said Eli Adashi, a professor of medical science at Brown University and former president of the Society for Reproductive Endocrinologists.
Yet efforts to add coverage for fertility care to Medicaid face a lot of pushback, Ginsburg said.
Over the years, Barbara Collura, president and CEO of the advocacy group Resolve: The National Infertility Association, has heard many explanations for why it doesn’t make sense to cover fertility treatment for Medicaid recipients. Legislators have asked, “If they can’t pay for fertility treatment, do they have any idea how much it costs to raise a child?” she said.
“So right there, as a country we’re making judgments about who gets to have children,” Collura said.
The legacy of the eugenics movement of the early 20th century, when states passed laws that permitted poor, nonwhite, and disabled people to be sterilized against their will, lingers as well.
“As a reproductive justice person, I believe it’s a human right to have a child, and it’s a larger ethical issue to provide support,” said Regina Davis Moss, president and CEO of In Our Own Voice: National Black Women’s Reproductive Justice Agenda, an advocacy group.
But such coverage decisions — especially when the health care safety net is involved — sometimes require difficult choices, because resources are limited.
Even if state Medicaid programs wanted to cover fertility treatment, for instance, they would have to weigh the benefit against investing in other types of care, including maternity care, said Kate McEvoy, executive director of the National Association of Medicaid Directors. “There is a recognition about the primacy and urgency of maternity care,” she said.
Medicaid pays for about 40% of births in the United States. And since 2022, 46 states and the District of Columbia have elected to extend Medicaid postpartum coverage to 12 months, up from 60 days.
Fertility problems are relatively common, affecting roughly 10% of women and men of childbearing age, according to the National Institute of Child Health and Human Development.
Traditionally, a couple is considered infertile if they’ve been trying to get pregnant unsuccessfully for 12 months. Last year, the ASRM broadened the definition of infertility to incorporate would-be parents beyond heterosexual couples, including people who can’t get pregnant for medical, sexual, or other reasons, as well as those who need medical interventions such as donor eggs or sperm to get pregnant.
The World Health Organization defined infertility as a disease of the reproductive system characterized by failing to get pregnant after a year of unprotected intercourse. It terms the high cost of fertility treatment a major equity issue and has called for better policies and public financing to improve access.
No matter how the condition is defined, private health plans often decline to cover fertility treatments because they don’t consider them “medically necessary.” Twenty states and Washington, D.C., have laws requiring health plans to provide some fertility coverage, but those laws vary greatly and apply only to companies whose plans are regulated by the state.
In recent years, many companies have begun offering fertility treatment in a bid to recruit and retain top-notch talent. In 2023, 45% of companies with 500 or more workers covered IVF and/or drug therapy, according to the benefits consultant Mercer.
But that doesn’t help people on Medicaid. Only two states’ Medicaid programs provide any fertility treatment: New York covers some oral ovulation-enhancing medications, and Illinois covers costs for fertility preservation, to freeze the eggs or sperm of people who need medical treatment that will likely make them infertile, such as for cancer. Several other states also are considering adding fertility preservation services.
In Delgado’s case, Medicaid covered the tests to diagnose her endometriosis, but nothing more. She was searching the internet for fertility treatment options when she came upon a clinic group called CNY Fertility that seemed significantly less expensive than other clinics, and also offered in-house financing. Based in Syracuse, New York, the company has a handful of clinics in upstate New York cities and four other U.S. locations.
Though Delgado and her partner had to travel more than 300 miles round trip to Albany for the procedures, the savings made it worthwhile. They were able do an entire IVF cycle, including medications, egg retrieval, genetic testing, and transferring the egg to her uterus, for $14,000. To pay for it, they took $7,000 of the cash they’d been saving to buy a home and financed the other half through the fertility clinic.
She got pregnant on the first try, and their daughter, Emiliana, is now almost a year old.
Delgado doesn’t resent people with more resources or better insurance coverage, but she wishes the system were more equitable.
“I have a medical problem,” she said. “It’s not like I did IVF because I wanted to choose the gender.”
One reason CNY is less expensive than other clinics is simply that the privately owned company chooses to charge less, said William Kiltz, its vice president of marketing and business development. Since the company’s beginning in 1997, it has become a large practice with a large volume of IVF cycles, which helps keep prices low.
At this point, more than half its clients come from out of state, and many earn significantly less than a typical patient at another clinic. Twenty percent earn less than $50,000, and “we treat a good number who are on Medicaid,” Kiltz said.
Now that their son, Joaquin, is settled in a good school, Delgado has started working for an agency that provides home health services. After putting in 30 hours a week for 90 days, she’ll be eligible for health insurance.
One of the benefits: fertility coverage.
This article was reprinted from khn.org, a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF – the independent source for health policy research, polling, and journalism.
Primary care screening visits for young children serve as useful sources of data for assessing social and developmental markers. It is not clear how these screening data can be used to predict whether children are school ready.
A new study appeared in JAMA Pediatrics that explored associations between school district early Kindergarten Readiness Assessment (KRA) and electronic health records (EHR) data and linked KRA scores with the changes occurring during the coronavirus disease 2019 (COVID-19) pandemic.
Background
Childhood is a watershed period for developing social skills, healthy physical and brain development, and becoming ready for school. Multiple factors may interfere with the acquisition of these skills which are essential in school life, such as social training, emotional regulation, as well as math and literacy skills. These may include socioeconomic and racial characteristics.
In some regions, up to 4 out of 10 new kindergartners are not ready to enter school. Since there has been no systematic attempt to identify which children are at risk of entering kindergarten without readiness, it is not clear how and which risk factors can be modified to change this situation.
The COVID-19 pandemic negatively impacted learning in school-age children, but its effect on development in children under five years remains to be described. This motivated the current study that uses KRA scores before and during the pandemic with the EHR data from a cohort of students in a large school district with about 36,000 students.
The KRA scores are linked to reading proficiency in the third grade and include four skill categories: preliteracy, premath, motor skills, and social-emotional skills.
What did the study show?
The study included over 3,000 patients who were screened at primary care level. The mean age was 67 months, with the majority being Black (80%) vs 8% Whites. The passing KRA score was set at 270.
When correlated with the pandemic dates, the mean KRA scores were significantly lower in 2021, at 260, vs ~263 in 2019 and 2018. About a fifth of students scored above passing levels in 2021, demonstrating school readiness, vs ~30% in 2019 and 32% in 2018.
About one in four parents said they rarely read to their child, that is, one or less days a week, at least once during the period of the study. About 27% of children were unable to meet ASQ scores at least once, while 12% of the children sometimes experienced food insecurity.
The risk factors for a low KRA score were one or more failures in the ASQ between 18 and 54 months, being Hispanic, not speaking the language of the healthcare professional during screening visits, being male and being seldom read to, as well as having food insecurity. Only 23% of boys were school-ready vs 32% of girls.
Having Medicaid insurance, indicative of low socioeconomic status, was associated with school readiness in ~27% of children, vs ~51% if Medicaid was never used.
Other socioeconomic factors, like housing insecurity, race, depression among the caregivers, and difficulty of any sort in obtaining benefits, did not show an association with the KRA scores.
“To interpret our findings using a hypothetical clinical example, starting with the expected score of 270.8 in the adjusted model (equivalent to demonstrating readiness): a boy who is Medicaid insured, who once failed an ASQ, who infrequently reported food insecurity, and was not read to as an infant lost an average of 15 points on the KRA, placing him in bottom category of emerging readiness (score below 257).”
What are the implications?
This is among the earliest studies to report that there might have been “a deleterious association of the COVID-19 pandemic with early learning and development.” It is also one of the largest studies to correlate primary care data to outcomes in public schools.
While other researchers have found conflicting evidence regarding childhood development during the pandemic, multiple factors have been at work, impacting the validity of observed associations. For example, school enrolment was lower during the period. However, the association of lower school readiness with not being read to as an infant has been well documented, as well as with low developmental scores and food insecurity.
Danger signals picked up in this way could help provide appropriate interventions in early life, whether by speech and language therapy, promoting learning by enrolment in good early childhood education programs, or facilitating library access.
“These findings suggest substantial untapped potential for primary care pediatrics and school districts to work more closely together given that risks for kindergarten readiness are evident much earlier in primary care.”
