Drug Costs Archives - 吃瓜不打烊 /tag/drug-costs/ 吃瓜不打烊 produces in-depth journalism on health issues and is a core operating program of KFF. Wed, 21 Oct 2026 21:50:30 +0000 en-US hourly 1 https://wordpress.org/?v=6.8.11 /wp-content/uploads/sites/8/2023/04/kffhealthnews-icon.png?w=32 Drug Costs Archives - 吃瓜不打烊 /tag/drug-costs/ 32 32 257378068 鈥楪o to Canada鈥�: Trump Touted Americans鈥� Access to Cheaper Drugs. A New Rule Threatens It. /health-care-costs/prescription-drugs-fda-cheaper-imports-trump-canada-new-rule-customs/ Thu, 22 Oct 2026 09:00:00 +0000 /?p=2297771 Days before it was to go into effect, the Trump administration pushed back a U.S. customs rule threatening the supply of vital prescription drugs imported by millions of Americans.

Under the rule, Customs and Border Protection and the FDA will require coding on packages that makes it easier to know what’s in them. It is aimed at collecting tariffs on even low-value imports, and at catching illegal drugs like fentanyl. It will also add costs and complex paperwork to each order.

Now the regulation, which was set to start Oct. 22, until Jan. 20.

While it is illegal to import most FDA-approved prescription drugs, Americans to import legal medications in small quantities for personal use since 2003. The FDA rarely inspects the parcels.

“The information we have is there’s going to be a complete shutdown on Oct. 22,” Tim Smith, general manager of the Canadian International Pharmacy Association, said in an interview in early October. The 51 licensed in his organization urged their hundreds of thousands of U.S. customers to file extra orders before Oct. 9 to be sure as many medications as possible arrived before the clampdown, Smith said.

“These are people in every case who have gone to the doctor, gotten a prescription for whatever, gone to the pharmacy to fill the order, seen how expensive it’s going to be, and then looked for an alternative,” he said. “Those are the people who’ve been coming to us for years.”

As Donald Trump campaigned in 2016, allowing people to import drugs was part of his platform. In his first term, President Trump let states buy cheaper drugs from Canada. He told Floridians at 2020 rallies that their state could “go to Canada” to obtain drugs for them.

But while Florida and Colorado joined , neither state has brought in any drugs yet.

Patients have, however, and they flooded authorities with at least 109,000 letters urging the FDA to clarify that the rule won’t stop personal-use drug shipments, said Ken Hunter, executive director of the Campaign for Personal Prescription Importation. And Trump ally Laura Loomer called the rule a case of stupidity or sabotage, that asked, “So Why Is Someone in His Administration Trying To Make Prescription Drugs More Expensive Before The Midterms?”

Seventy-one congressional Democrats signed led by Reps. Jan Schakowsky of Illinois and Mark Pocan of Wisconsin to warn about the potential impact of the rule. Three House Republicans from Florida to CBP and the FDA, noting that Floridians, unlike Americans in Northern states, can’t easily drive to Canada to buy medicine.

By cutting off imports, Hunter said, “they are going to lose millions, maybe billions in tariff revenue.”

“Why would you want to cut off this massive revenue source?” he asked. “Why would they want to cut people off from lifesaving medications two weeks before midterms?”

Pressure by advocacy groups may have led the agency to back off, said Lucia Mueller, president of PharmacyChecker, which helps patients find legitimate pharmacies to obtain cheaper drugs.

“Loomer’s political argument is sound,” she told 吃瓜不打烊. “We know she’s had Trump’s ear before.”

The agency’s Oct. 14 news release on the delay said it would help “avoid disruptions to certain international postal shipments.” It didn’t specifically refer to drug imports.

“This is an important short-term success,” said Gabriel Levitt, founder of Prescription Justice, a nonprofit that advocates for more-affordable drugs. “However, the underlying threat to personal prescription drug importation remains, and the next 90 days will be critical.”

A found that 2.3 million Americans regularly imported medications from abroad, and some surveys show much higher numbers. About 4 in 10 Americans in a recent said cost had led them to not take medications as prescribed over the past year.

When he was diagnosed with atrial fibrillation years ago, Leslie Waters learned that a 90-day supply of the blood thinner Eliquis, or apixaban, would cost $486. “Holy crap!” said the retired computer scientist, who said he lives off a monthly $1,886 Social Security check. Waters, of San Jose, California, learned about the Canada option on the internet and has been buying 90-day supplies from a pharmacy there for $57, including shipping.

Under previous administrations, orders worth $800 or less weren’t taxed or saddled with extensive paperwork. The new rule will require shippers of even low-value international parcels to transmit detailed information about their contents to CBP, along with tariff payments, which must be transmitted through a licensed customer broker.

Zonos, a U.S.-based company that handles logistics for mail from Canada and other countries, told clients in early September that its understanding was that CBP would no longer allow in personal prescription drug packages after the rule took effect, said Smith, of the Canadian pharmacy trade group. In an Oct. 6 webinar, Zonos senior broker Angela Macke said that the company would continue to ship the drugs but that it didn’t know whether the agencies would let them reach patients.

The pharmacy announcements have frightened thousands of customers, said Bill Hepscher, whose company, Canadian Medstore, has six Florida storefronts that help patients import drugs.

“It’s really been hair on fire,” he said. “I could spend my entire day fielding phone calls from people saying: 鈥楥an I no longer get my Eliquis? I could have a blood clot or stroke!’”

Hepscher said about half his clients buy their drugs from Canada, with many of the others buying from Australia, New Zealand, the U.K., or Turkey. He said 2025 was his company’s busiest year ever 鈥� changes to Medicare drug plans and increased enrollment in high-deductible Affordable Care Act plans had led seniors and younger people facing higher costs and copays to seek Canadian drugs.

“I only have 23 days’ worth of pills,” Roland Hofferber told 吃瓜不打烊 in early October. The retired supply chain engineer in Muscatine, Iowa, takes Jardiance, also known as empagliflozin, to slow his chronic kidney disease. “If I don’t get some through pretty soon, I’m going to have to cut back or quit.”

The drug would cost him $641 for three months in the U.S., he said. He buys a generic from an Indian pharmacy for $54.

The FDA “hasn’t given parameters as to what they will approve and what they won’t,” Zonos’ Macke said during the webinar. “We’ve been told there will not be a general ban. But we cannot reassure U.S. patients. We have to see how FDA applies. They could be lenient. They could be very strict.”

When asked whether patients could still import prescription medicines, CBP spokesperson Jessica Turner said that pharmaceuticals remained under the FDA’s jurisdiction and that the FDA “will continue to determine whether imported medication shipments are admissible.” Department of Health and Human Services spokesperson Emily Hilliard said the FDA would “continue to evaluate personal imports on a case-by-case basis.”

White House spokesperson Allison Schuster did not respond to questions about imports but said Trump “remains dedicated to lowering the cost of prescription drugs.”

Since summer 2025, patients have had to pay tariffs on brand-name medicine shipments. In 2022, the FDA said it typically checked about 1 in 2,000 medication packages passing through U.S. customs.

“A lot of products weren’t even looked at, because CBP and FDA didn’t have full visibility” into what entered the country, Prescription Justice’s Levitt said. The rule requires shippers to post a bond and fill in a complex data form for each package, he noted.

“Let’s say you’re importing 90 days’ worth of Eliquis,” Levitt said. “FDA can now look on a screen and see that. Do they let it in, or refuse it under law?”

“If they don’t, there’s going to be a cohort of people who cannot afford their drugs anymore,” he said. “And those people are going to suffer.”

吃瓜不打烊 is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF鈥攁n independent source of health policy research, polling, and journalism. Learn more about .

This article first appeared on 吃瓜不打烊 and is republished here under a .

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Medicare Is More Broken Than We Thought /podcast/an-arm-and-a-leg-medicare-broken/ Mon, 05 Oct 2026 09:00:00 +0000 /?p=2292171&post_type=podcast&preview_id=2292171 By Oct. 1, at least 2 million seniors will have received alarming notices: Their health plans 鈥� which they get through Medicare Advantage, the version of Medicare run by private health insurance companies 鈥� will disappear at the end of the year.

Many will be stuck without a lot of options. In some cases, no other companies in their area may offer Medicare Advantage plans to replace them. This isn’t the first time this has happened. Last year, almost 3 million seniors found themselves in similar situations.

An Arm and a Leg host Dan Weissmann and producer Emily Pisacreta looked into what happened when those cancellations hit Minnesota. The collapse of a major Medicare Advantage carrier there led to “total chaos,” according to the director of the state’s Medicare assistance agency. Everyday people stepped up to help one another in the fallout.

Plus, 吃瓜不打烊 senior correspondent Julie Appleby joins to discuss the role of private health insurance companies in Medicare. She explains how these companies shape seniors’ choices, including in Medicare supplemental plans, whose premiums have skyrocketed.

Dan Weissmann 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% Invisible," and "Reveal," from the Center for Investigative Reporting.

Credits

Emily Pisacreta Producer
Adam Raymonda Audio wizard
Ellen Weiss Editor
Click to open the Transcript Transcript: Medicare plans keep disappearing

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.

Please note that this transcript may include errors.

Dan: Hey there. In the first week of October last year, 2025 鈥� a whole bunch of senior citizens in Minnesota got a letter with some bad news. 

Amy Hockert: A lot of changes coming in 2026. We know that at minimum 160,000 of you, absolutely have to pay attention to this,

Dan: Their health insurance through Medicare Advantage was going away. 

Erin: I was so mad. I was like, “No. Now what do I do?” And I look at my husband and said, “Now what?” “

Dan: Folks like Erin鈥� who lives in small-town Cambridge,Minnesota鈥�  were going to have to find a new plan by the end of Medicare’s annual open enrollment period, which would start in a couple weeks.

Up until now, Erin had been on a plan from a local nonprofit insurance outfit called U Care.

UCare offered some of the most generous and affordable plans in Medicare Advantage 鈥� the version of Medicare operated by private health insurance companies. 

But U Care was going belly up.

FOX 9: The collapse of UCare after 40 years in Minnesota has been swift and stunning.

Dan: Callers jammed the phonelines at Minnesota’s Aging Pathways hotline 鈥� thats the state agency that helps people with Medicare. Kelli Jo Greiner runs it.

Kelli Jo Greiner: I don’t know any other way to describe it other than total chaos. Our phones were ringing off the hook.

Dan: Meanwhile, in the Twin Cities suburb of Maple Grove, an insurance broker named Alison Ebert had been getting ready for her busy season, making appointments with her usual clients.

Alison Ebert: October 1st through October 14th, I always set my appointments with my clients. I always joke I get paid in cookies and coffee because I go to their homes, we sit down. I know their families, I know their kids, their grandkids

Dan: The day open enrollment started, she got 47 calls 鈥� from people she’d never met. People whose coffee and cookies she’d never tasted.  That was new. 

And more would call. Because more letters were starting to go out.

Not just from U Care. Other health insurance carriers were dropping out of the area. UnitedHealthcare, BlueCross, Aetna, Humana 鈥� all canceled Medicare Advantage plans in counties all over the state. Three counties were left with no Medicare Advantage plans at all. 

And鈥� this wasn’t just something that was just happening in Minnesota. Almost 3 million seniors across the country had plans in 2025 that would stop being offered to them in 2026.

And that’s because at their headquarters, insurance companies had done their calculations, assessed their risks, and decided that offering plans to those people would no longer be profitable enough. So, seniors from Maine to California saw the number of available Medicare Advantage plans shrink by the dozen 鈥� leaving a lot of them confused, and with fewer, often worse and more costly health insurance options. 

It’s part of a big new trend 鈥� these disappearing acts  have been increasing in recent years, and insurance companies have already signaled that more are coming. Major insurers have already announced intentions to dump plans that currently cover more than two million seniors. 

We’ve spoken with folks in a dozen states 鈥� in rural places like Vermont and North Dakota, and in states with rural and urban centers like Maryland and Minnesota 鈥� about how it all went down last year 鈥� and what we can take away for this year.

My colleague Emily Pisacreta and our awesome summer intern Lynn Barbera made those calls. And Emily, you called that experience “eye opening.” 

Emily: Uh, yeah. We already knew from previous reporting that people had problems with Medicare Advantage. At first this story sort of seemed like one more thing people on Medicare Advantage had to worry about. But it turns out to be more than that. What happened last year 鈥� and is about to happen again this fall 鈥� showed us big problems, problems that affect everyone who’s on Medicare 鈥� or hopes to be one day. There are layers to this. 

Dan: And we’re gonna peel them back. Get ready for a big dose of Medicare.

This is An Arm and a Leg, a show about why health care costs so freaking much and what we can maybe do about it. I’m Dan Weissmann, I’m a reporter and I like a challenge. So our job on this show is to take one of the most enraging, terrifying, depressing parts of American life and to bring you a show that’s entertaining, empowering and useful.

Emily, a while back, we looked at problems with Medicare Advantage. How about we do a little recap?

Emily: Yeah. 

Dan: We were taking our first deep look at Medicare itself, and as we said then, it kind of blew our minds. 

Emily: Before we did that story, I was under the impression that you wake up on your 65th birthday and never have to pay a medical bill again, never have to deal with health insurance companies again. In fact, that’s the dream of Medicare For All. 

Dan: But it’s not the reality of Medicare as it exists. For one thing, signing up means making a dizzying number of choices. 

And you basically never escape private insurance companies. No way. Turns out, they run a lot of Medicare 鈥� so you could see dozens of different plans offered by different companies. 

But here’s the most important part: You have to choose between what’s now called Traditional Medicare 鈥� run by the U.S. Government 鈥� and Medicare Advantage plans, run by private insurance companies. 

And they both have downsides. 

Traditional medicare doesn’t cover everything. For outpatient medical care 鈥� for doctor visits, outpatient procedures, infusions, physical therapy, X-rays and MRIs, you name it 鈥� Medicare only pays 80 percent of the bill.  

And those other things can get so expensive 鈥� the remaining 20 percent can run to thousands of dollars that most seniors don’t have. 

If you want that covered 鈥� and, I mean, you do 鈥� you actually have to buy a “supplemental” policy 鈥� people call them “Medigap” plans. They’re offered by private insurance companies. And you pay a premium. 

Oh, and did I mention that you’re already paying a premium to the feds for your Medicare? Yep. Exactly how much depends on your financial situation, but most people pay just over 200 bucks a month.

Medigap premiums 鈥� to the private companies 鈥� are on top of that. They vary a lot 鈥� by what plan you pick, and by where you live 鈥� but the average is another two-hundred and some every month. And that number. 

So you’re paying all that but then you’ve still got another gap. Vision, dental, and hearing. Traditional Medicare doesn’t cover them at all. So Medigap plans. 

The dark joke is that eyes, ears and teeth are “luxury organs”

Because who needs to see or hear or chew? 

So those are some BIG gaps.

A lot of Medicare Advantage plans offer to fill those gaps:

MA Ad 2: This card I’m holding in my hand, it’s an example of an all-in-one Medicare Advantage membership card.

Dan: Lots of them include what’s missing  

Woman in Ad2: That card helps me with my vision costs, my dental costs.

Dan: Some of them even subsidize the premium you’d be paying to the feds, even bringing it down to zero. You can see how appealing that is.

鈥� and insurance companies hammer that appeal home with floods of TV ads

Plus direct mail, phone calls, and facebook ads out the wazoo. None of which mention the downsides to Medicare Advantage鈥� 

 which are basically: All the downsides we’re all familiar with from dealing with insurance companies. 

Their network might not include your doctors and providers. It might not include very many providers near you at all. 

And once you find an in-network provider, the insurance company can make you jump through hoops like pre-authorization. Or deny a claim. And then you get to fight through an appeals process. 

I talked with a guy in Texas, Robert Wolpa. He’s got HIV, a pacemaker, other stuff. He said he felt like he was spending half his days on hold, waiting to talk with badly-paid, badly-trained people.

Robert Wolpa: I’m 71. I just turned 71 in November and I’ve got, I’ve got a little of the HIV cognizant crap. Like, my short term memory is gone. And I think to myself, what have I gotten myself into?

Dan: This is the thing: You can be 65 years old, in totally decent shape, playing pickleball or whatever, never seeing a doctor. 

But when you pick Medicare Advantage, most of the time you’re also choosing for an older, sicker version of yourself. Who may need to see specialists, and who may not have as much capacity to fight with insurance companies. 

I mean, most relatively young and healthy people have a hard enough time. 

This is where Traditional Medicare starts to look much more appealing. Practically every provider takes it, and denials are almost unheard of.

But for most people, if you’ve chosen Medicare Advantage, it’s a no-backsies situation. 

You can still sign up for Traditional Medicare, but you may not be able to get a Medigap policy. 

For one thing, it may not be in your budget. Robert Wolpa got a quote: Almost 500 bucks a month. Like a third of his social security check.

Robert Wolpa: And I said, okay. Next option.

Dan: And lots of people don’t have the option at all. In most states, if you don’t sign up at age 65, Medigap plans are allowed to reject you if you have鈥� pre-existing conditions. 

Sarah Jane Tribble: It’s sort of shocking, actually, right? Like, the Affordable Care Act passes and makes it so that everybody with pre existing conditions can get insurance no matter what, but it leaves out the people who might need that the most, who are 65 and older. 

Dan: That’s the person who had introduced us to Robert Wolpa, and helped us understand this whole issue. Sarah Jane Tribble,a reporter with our pals at 吃瓜不打烊 had just published her own story about the pitfalls of Medicare Advantage.

This comes as a big surprise to a LOT of folks 鈥� as Sarah Jane found out while she was reporting her story, and talking about it with friends.

With all of these鈥� advantage 鈥� all the marketing, and all the gaps it fills鈥� Medicare Advantage has grown by leaps and bounds in its 20-some years. 

At this point, the majority of seniors are on Medicare Advantage.

So, OK: Long recap, but. That’s what we KNEW a couple of years ago. 

And it turns out 鈥� based on what happened last fall, and what’s about to happen this year 鈥� the problems are way worse than we knew. 

Which brings us back to our friends in Minnesota. In early October 2025.

News anchor 1: In 90 days, thousands of Minnesotans will lose their Medicare Advantage coverage.

News anchor 2: Many major health care providers are dropping their Medicare Advantage plans in 2026. 

Dan: So, Emily. What the heck happened?

Emily: So that local nonprofit insurance company 鈥� UCare鈥� they went broke, and all their Medicare Advantage plans got pulled from the market. Pretty quickly after that, UnitedHealthcare, Aetna, and others sent break up letters of their own to thousands of their beneficiaries.

Lots of people turned to insurance brokers for help. 

But many brokers weren’t calling them back. Because things had started going haywire for them too. Insurance broker Alison Ebert told us she was used to getting paid in cookies and coffee 鈥� and this time around, she would mean that literally 鈥� because in the days leading up to open enrollment she got an unusual call from her contact at UnitedHealthcare.

Alison Ebert: She said, “I just wanna let you know before you get the email, we’re not paying commissions this year.”

Emily No commissions. No payment from the insurance company for anyone she would enroll in their Medicare Advantage plans. Which is for health insurance brokers 鈥� the whole business model. 

Alison Ebert: And my heart just sunk. That was the first phone call, and one by one thereafter, all the major carriers except for Allina Health Aetna, followed suit.

Emily: Other brokers in Minnesota told me the same thing. I asked Alison: why do you think they cut commissions? She says a rep for one of the big companies told her the ugly truth. 

Alison Ebert: With UCare exiting the market,” she said, “Let’s face it, we don’t want everybody that sunk UCare on our plan. And so this is how we’re gonna c- curb enrollments.” 

Emily:  Alison got the message: These insurance companies wanted to curb enrollments. They specifically didn’t want to insure people who they tho  ught “sunk UCare” 鈥� meaning, people who used health care. Who filed claims. Who cost money.If brokers didn’t get commissions for selling plans to these folks, a lot fewer of them would sign up.  

Alison Ebert: Because they’ve always told us about 80% of the sales comes through brokers like us.

Emily: Now, a few weeks later, it was October 15, open enrollment was starting, and her phone was ringing off the hook. 47 people on day one. And more every day after that. Plus all her regular clients 鈥� the ones whose grandkids she knew by name.

 Alison had to decide what to do  鈥� could she afford to help all those people for free? 

Alison Ebert: I have kids. I mean, I deserve to get paid. I need to put gas in my tank to go to these people’s homes.  

Emily: But Alison didn’t think it was right to leave people hanging.

Alison Ebert: I left a message on my answering machine saying, “You know, due to the fact that we’re not getting paid this season, a lot of brokers left the market and I’m just returning calls as they come. But just be aware that it might take me a couple weeks to get back to you.”

Emily: Instead of going to everyone’s house, she set up office hours at a coffee shop to be able to see as many people as possible.

Meanwhile鈥� Kelli Jo Greiner and her colleagues at the state’s Medicare hotline were scrambling too.

Kelli Jo Greiner: We had wait times of two hours. Nobody wants to wait for even 10 minutes, let alone two hours

Emily: She and her team had to improvise.

Kelli Jo Greiner: We have staff that don’t usually do Medicare counseling. They help with, like, long-term care and other areas, and we even put those folks on the phones to help

Emily: And she wrangled a weekly spot on FOX 9 in the Twin Cities to answer big questions.

Amy Hockert: Medicare Monday is what we’re calling it. A lot of changes coming in 2026. Kelli Jo, thanks for joining us.

Kelli Jo Greiner: Well, thank you. I’m glad to be here again. 

Amy Hockert: All right. Well, let’s roll through it here.

Emily: Kelli Jo told viewers: The most important thing is to be proactive. If you don’t do anything, the system will put you into traditional Medicare 鈥� but without a Medigap plan. Oh, and by the way, she told them: Your drug plan will probably disappear too, unless you sign up for a new one.

So 鈥� she said, the good news, as far as it goes is: Right now you have a choice. And it’s just like the one you had when you were 65. You get to basically start over if you want, and get a Medigap plan even if you have a pre-existing condition. This is a special situation, they can’t reject you. 

And once you’re on they can’t tell you which doctors to see. Almost every doctor in the country takes traditional Medicare.   

Kelli Jo Greiner: And for many people that is a huge advantage,’cause we have a lot of snowbirds here that go south for the winter.

Emily: But she says most people she talked with decided they just couldn’t afford those Medigap premiums. They were stuck with Medicare Advantage. Only now they had fewer and crummier Medicare Advantage plans to choose from. 

Also, they were more expensive than these folks were used to. 

Kelli Jo says a lot of people had been on plans with no monthly premium 鈥� but now all those plans were gone.  

Kelli Jo Greiner: and so they ended up having to switch to a plan with a premium

Emily: And in a lot of cases, without some extra benefits that Kelli Jo says are a big draw. Like discounts on groceries 鈥� or free gym memberships, a feature called Silver Sneakers.

Kelli Jo Greiner: and I cannot even tell you how many people called us about Silver Sneakers. They were so upset about that change.

Emily: So people ended up paying more than they were used to 鈥�  and getting less. 

Dan: OK. So to recap: some Medicare Advantage plans disappeared.

Emily: Yes.

Dan: The remaining plans weren’t great.

Emily: Right.

Dan: And most people chose them anyway, because they couldn’t afford Medigap.

Emily: Correct. And we can expect more of the same this year鈥� and for who knows how many years ahead.

Dan: So Medicare Advantage is getting shakier鈥� even while it keeps growing. 

Coming right up: how the dynamics behind all of this add up to trouble for all of Medicare. And what we can maybe do about it.   .

This season of An Arm and a Leg is a co-production of Public Road Productions and 吃瓜不打烊 鈥� that’s a non-profit newsroom covering health issues in America. Their reporters are amazing 鈥� you’re about to hear from another of them. We’re honored to be their colleagues.

Dan: Kelli Jo Greiner told us many folks who lost their Medicare Advantage plans  just couldn’t afford Medigap supplements. 

Which, as we’ve been learning, has been one of the big dynamics behind the growth of Medicare Advantage in the first place. 

Emily: Our colleague Julie Appleby found recently, that dynamic is getting starker.

Julie’s a senior correspondent with our pals at 吃瓜不打烊.  

Julie Appleby: I cover all things health insurance pretty much, uh, from the Affordable Care Act to Medicare, other kinds of health insurance programs, uh, that kind of thing. 

Emily: Earlier this year, Julie got a call from a broker in Illinois.

Julie Appleby: And he was telling me that more than, like, 80 of his customers were enrolled in a Medicare supplement,

Emily: A specific plan. One that usually had low premiums. 

Julie Appleby: But they suddenly raised their rates by 45%. And he said, “In my 49 years of doing business as a broker, I’ve never seen a premium increase be effective immediately on everyone. So I thought, “Hey, I’m gonna start looking into this.”

Emily:  She found some good data from a company called Telos Actuarial 鈥� which showed: this price hike was part of a trend.

Julie Appleby: There were increases going on kind of throughout the industry.

Emily:. On average, the data showed premiums on Medigap went up almost 17% from the previous year.

Not as high as that one plan with 45 percent increase, but still nothing to sneeze at. Brokers and other experts told her: That kind of increase used to be almost unheard of. But for the last bunch of years, it’s become a new normal. 

Julie sees a connection with the growth of Medicare Advantage. 

To understand it 鈥� and why everything about Medicare could be getting shakier and shakier 鈥� Julie’s gonna introduce us to a key term: Risk Pool. It’s a big part of how insurance prices get set.

Julie Appleby: Insurance is a giant pool, right? We all are in the pool, and everybody kinda shares the cost. The insurance company has to sit down and try to figure out, “Well, gee, I’ve got this pool of people. How sick are they? How, how often are they gonna go to the doctor? How often are they gonna be hospitalized?” And then calculate out, “Okay, so what might that cost me?”

Emily: So a lot depends on: Who’s in the risk pool for any given plan? If Medigap plans are more expensive than Medicare Advantage 鈥� but provide better coverage 鈥� then, who’s gonna choose the Medigap? People who think they’re gonna *need* that better coverage. Sicker people.

And with millions of people getting the chance at do-overs 鈥� because their Medicare Advantage plans got nuked 鈥� these Medigap insurers have a bunch of new customers, who 鈥� it seems reasonable to think 鈥� may be sicker.  

Julie Appleby: So these carriers are, then having to think, “Wow, I’m taking all these people on in this region, so I’m gonna have to raise my premiums to cover what might be those expected costs.” 

Emily : And as premiums grow and grow, what we could see is a kind of vicious cycle. Because as new people turn 65, they’re looking at Medigap premiums that are harder and harder to afford.

So more and more people are attracted to Medicare Advantage. I spoke with a researcher named Laura Skopec 鈥� she studies Medicare at the Urban Institute, an economic and social policy think tank. Here’s how she put it: If this trend continues 鈥� with Medigap prices driving more people to Medicare Advantage

Laura Skopec: We’re gonna see a traditional Medicare that is sicker and wealthier, which is sort of a weird combination, but it’s gonna be sort of the sickest people that really need good access to specialists, wanna be able to go to the cancer center, you know, any sort of doctor they wanna go to, and the people that can afford Medigap

Emily: Like, the sicker you are, the more you need this, and the more people who need it, the more expensive the supplements will be.

Laura Skopec: The risk pool just keeps on worsening.

Emily: So, expect Medicare Advantage to keep growing. And 鈥� as Laura points out 鈥� getting more expensive.

Laura Skopec: The Medicare Payment Advisory Commission says we spend about fourteen percent more for everyone who chooses Medicare Advantage over traditional Medicare, and that was really not the point of the Medicare Advantage program, right? It was supposed to use sort of private sector processes to lower costs in Medicare, and it has not done that. 

Emily: In fact, insurance companies are under increasing scrutiny for overcharging the government for Medicare Advantage. 

The feds have been trying to impose some rules to cut down on those extra profits 鈥� all very technical stuff which we could devote a whole episode to.     

Dan: Maybe we should

Emily: Yeah and crackdown may have played a role in insurance companies pulling some of these plans off the market. And they say they’re gonna keep yanking more plans off the market unless they get MORE federal dollars. 

Laura: They’re saying that their costs are going up for paying claims, which is probably true, and they point to market exits and other issues as, like, we need a pay bump here to stay in the market.

Emily: All of this 鈥� pulling plans off the market, reducing benefits, trying to control who enrolls in their plans 鈥� all of this stuff is likely to keep happening. 

So we should talk about what that looks like on the ground, and how seniors can navigate all these changes. 

Remember Erin in Cambridge, Minnesota? 

What happened to her really exemplifies how this kind of thing can play out. And how we can support each other.

So Erin had gotten kicked off her plan when the whole enterprise behind it, UCare, collapsed.

Erin had been really happy with UCare for the four years she was on one of their Advantage plans.

Erin: You call their customer service and they are very helpful. I loved it.

Emily:  she had access to specialists. 

Erin: A thoracic, a neurologist, a urologist, a nephrology. An ENT specialist. 

Emily: Erin had suffered four heart attacks in her late fifties. Because she couldn’t work, she started getting social security and Medicare early 鈥� when she was 58. She doesn’t really remember how she ended up picking Medicare Advantage over traditional Medicare.

But it was working for her. Until they pulled the rug out from underneath her.

Erin: I did not want them to go anywhere. I heard that, I was just in tears.

I was so mad. I was like, “No. Now what do I do?” And I look at my husband and said, “Now what?” “

Emily: And she says her husband had the answer immediately.

Erin:Well, we’ll just call Desi.”

Emily: We’ll just call Desi.

Dan: Wait a minute鈥�  Who is Desi?

Emily: You gotta meet Desi. 

Desi Panek: I’m Desi Panek, and I work at the Seven County Senior Federation here in Mora, Minnesota.

Emily: That’s a member-led organization of seniors in eastern and central Minnesota who came together to advocate for themselves, and to help each other with transportation and other stuff seniors need. Including: signing up for 鈥� and dealing with 鈥� Medicare. 

I met Desi and her boss Lisa Krahn, the Federation’s director, as they were gearing up for this year’s annual enrollment period. 

Lisa: It can’t be as bad as it was last year 

Emily: Yeah yeah. 

Desi: We’ll find out soon. 

Lisa: Oh, God 

Emily: Yep, hold onto your hat. 

Emily: Yep, they’re still dealing with the fallout from last year. This is Lisa:

Lisa Krahn: Still quite a few people who show up, who are calling now, who don’t realize that they haven’t had a plan all year saying, “I just don’t have anything because my old plan left. Well, I wasn’t really paying attention to the mail they were sending me,” kind of a thing.

Emily: Some of those people only found out when they got a bill in the mail. Or when they tried to pick up a prescription, and had to pay out of pocket cuz they didn’t have a drug plan anymore. 

Luckily, Erin got the news before it was too late. She and her husband called Desi, and Desi helped them enroll in a new Medicare Advantage plan. Which Erin says, isn’t as good. 

Erin: Right now I’ve got $1,700 out of pocket going to a pair of hearing aids

Emily: She’s not a fan of the customer service. And she says she had to stop taking one of her preventative medications because her drug plan changed.

Desi and Lisa are operating very much at ground level helping people like Erin, but they definitely have thoughts about the big picture 鈥揺specially the stark choice between Medicare Advantage and traditional Medicare.

Lisa Krahn: original Medicare is that thing you’ve been waiting your whole life to get. It’s good everywhere. And once you’re in, you’re in. 

Emily: But it’s become too expensive for most people. Meanwhile, Medicare Advantage can really limit people’s access to care.

Lisa Krahn: So, looking for a middle ground between those, it’s, it’s鈥� There, there should be better choices, frankly, instead of such extreme ones.

Desi Panek: Extreme is a really good word for that. I agree. 

Emily: Extreme meaning there’s a big hole in one and there’s too many鈥�

Lisa Krahn: Restrictions on the other. But all the millions we’re dumping into advertising and these private companies, that could have filled the holes on original Medicare a long time ago. And that’s just antithetical to the function and the existence of the insurance industry, which, like the monarchy, maybe we can stop believing in. I’m revealing myself as a single-payer Medicare for All advocate, but we need better Medicare, frankly, you know? It always been shortchanged.

Emily: Dan, speaking of Medicare For All.

Dan: Yeah we really shouldn’t do an episode like this without mentioning it. Especially because it’s been coming up so much in this year’s election season. In Michigan, Abdul El-Sayed won the Democratic Senate primary, and Medicare for All was his number-one pitch.

Abdul El Sayed: Yes, we really can guarantee healthcare in this country. Yes, we really can do it while spending a lot less and getting a lot more if our healthcare doesn’t still fund tens of millions of dollars in healthcare CEO, uh, salaries on top of it.

Emily: People like Lisa 鈥� and Abdul El-Sayed 鈥� think of Medicare for All as a way to also plug the holes in existing Medicare. 

Dan: Well, huh. OK, I mean, one thing I’m really tuning into is that all these big gaps in Medicare are all driven by the fact that ALL of Medicare 鈥� our big public benefit 鈥� is actually set up so it requires insurance companies to make a profit in order for it to function. Whether they’re selling Medicare Advantage plans, or Medigap policies.

But then, how do Medicare for All advocates say that spreading Medicare to everybody makes the math actually work better?

Emily: It’s all about that term Julie Appleby introduced us to:  Risk pool. How “risky” the people you’re insuring 鈥� the pool 鈥� are as a whole. Meaning, how much health care they need on average. The calculations change a lot when the pool is everyone, including people who are 25 as well as 65 and 95 鈥� and when tax money funds health care directly instead of filtering it through private health insurance companies to administer and also take a profit.

In fact, a recent study out of Yale estimates that Medicare For All 鈥� that is a Medicare that is completely void of private insurance companies 鈥�.

Dan: But that’s not just taking insurance companies out of Medicare 鈥� it’s taking them out of the whole U.S. health care system.

Emily: Right. In the meantime, some politicians in Washington are talking about tweaks 鈥� big and small 鈥� to just Medicare itself. 

Vermont Senator Bernie Sanders鈥�

Dan: the original Mr. Medicare For All 

Emily: Yeah 鈥� in the meantime, he says we should extend traditional Medicare to cover vision, hearing, and dental. He’s introduced a bill in the Senate to do just that. 

And Oregon Senator Ron Wyden recently introduced a bill that would put an out-of-pocket max on traditional Medicare. That way, people wouldn’t need supplements as much, and Medicare Advantage wouldn’t look as tempting.

Both of those ideas would mean putting more federal money toward traditional Medicare.

Dan: Which doesn’t SEEM like something Congress is likely to do. But what this whole story shows is: it seems like it’s gonna cost us either way. Either we put more public dollars into traditional Medicare, or we keep paying higher prices, collectively and individually,

As for the here and now. If you have Medicare Advantage, but you don’t have a Desi or a Lisa to call, Emily, they gave you a breakdown of what you need to know.

Emily:Yep. Their first piece of advice: open every piece of mail from your insurance company. That’s where you’re going to find out whether your plan is being cancelled. Or where you might find out they’re trying to auto-enroll you into a new plan, which might not be the best one for you.

Desi Panek: The past couple of years we’ve had plans that end a specific plan, but will auto-enroll the e- the enrollee into another plan in the same company.

Lisa Krahn: Crosswalking

Desi Panek: Yes, so that’s a big deal. Pay attention to your mail. Um, you’re gonna get stuck with huge premiums if you just let it roll.

Emily: And find someone to talk to.

Remember Kelli Jo who runs the Medicare hotline for Minnesota? Every single state has one of those agencies. They’re called SHIP 鈥� S H I P 鈥� state health insurance assistance program. Google your state, SHIP, and Medicare

If you can’t get through, there’s always insurance brokers. Desi has some advice on measuring up whether a broker is trustworthy.

Desi Panek: Ask them if they sell every product available to you in your area. That’s one of the biggest things. I think that a lot of people just assume they’re gonna go to a broker or an agent and they’re gonna get the full scope, and that’s not necessarily true.

Emily: You might want someone who sells Medigap supplements as well as Advantage plans. Someone who does that may be less inclined to push you into whatever’s paying them the highest commissions.

Desi Panek: Word of mouth is a big deal for a lot of people, so asking your friends, your neighbors, uh, “Who did you work with? Are you happy? Are you unhappy? What was the experience like?”

Dan: Talking to your friends and neighbors. It’s like, we gotta rely on each other.

Emily: Which is why I’m kind of obsessed with this Senior Federation thing. People banding together to share information and resources to navigate this ongoing mess.

Desi and Lisa’s group has been operating since 1975. There used to be a robust network of similar groups across the state. Theirs is the last one, but Desi says they’re going strong.

Desi Panek: We’ve got our beautiful community and our thrift stores that keep our doors open and allow us to give that good information out, um, whether it’s what people wanna hear or not.

Dan: And it went by kinda fast but I think I heard her say thrift stores?

Emily: Yep! They have a side hustle. 

Lisa Krahn: We run two thrift stores, the One More Time stores, which give us financial independence. So we’re not dependent on just memberships and just counseling fees or service fees. 

Emily: That’s awesome, yeah, I’m dying to go to those thrift stores. I saw it on the website and I was like鈥�

Desi Panek: Did you see that we won Minnesota’s best thrift store?

Emily: Stop it.

Desi Panek: I mean it.  

Emily: That’s so cool. Oh my God. 

Lisa Krahn: By the Minnesota Star Tribune, yes. It was a popularity contest.

Emily: Amazing. Wow.

Dan: Wow for sure. Emily, thank you so much for all of this reporting.

So here’s where we landed: Medicare is way more broken than we knew!  And we already knew it was kind of a confusing mess with a lot of holes. 

Fixing it will require a huge lift.  The kind of thing that hasn’t seemed like a political possibility. And everybody will have BIG differences of opinion about how a fix should work. There are people who think the government shouldn’t be involved in health care at all. 

Meanwhile, we’ve got what we’ve got.  We’ve got each other. 

And鈥� you just never know what might be possible.

Next time on An Arm and a Leg, we’ll hear about what might be the most radical health care experiment since Medicare itself. 

And the two guys 鈥� a Democrat and a Republican 鈥� who made it happen.

Till then, take care of yourself. 

This episode of An Arm and a Leg was produced by Emily Pisacreta, with help from our summer intern Lynn Barbera and me, Dan Weissmann鈥� and edited by Ellen Weiss. Izabella Kulkarni provided additional production help.

Reporting for this story was supported in part by Arnold Ventures. Listeners like you are our biggest source of support, and we need you more than ever. If you like what you’re hearing and want it to continue, head to arm and a leg show dot com, slash, support.  

Adam Raymonda is our audio wizard.

Our music is by Dave Weiner and Blue Dot Sessions. 

Amanda Boyd is our Operations Manager. Bea Bosco is our consulting director of operations. 

An Arm and a Leg is produced in partnership with 吃瓜不打烊. That’s a national newsroom producing in-depth journalism about health issues 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 吃瓜不打烊. He’s editorial liaison to this show.

An Arm and a Leg is distributed by KUOW, Seattle’s NPR news station.

And thanks to the Institute for Nonprofit News for serving as our fiscal sponsor.

They allow us to accept tax-exempt donations. You can learn more about INN at INN.org.

Finally, thank you to everybody who supports this show financially. Listeners like you are our biggest source of funding.

You can join in any time at arm and a leg show, dot com, slash: support.

Thanks! And thanks for listening


An Arm and a Leg is a co-production of 吃瓜不打烊 and Public Road Productions.

For more from the team at An Arm and a Leg, subscribe to its weekly newsletter, . You can also follow the show on , , , and . And if you’ve got stories to tell about the healthcare system, the producers would love to .

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And subscribe to An Arm and a Leg on , , , or wherever you listen to podcasts.

吃瓜不打烊 is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF鈥攁n independent source of health policy research, polling, and journalism. Learn more about .

This article first appeared on 吃瓜不打烊 and is republished here under a .

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Republicans and Democrats Find a Unifying Target: Pharmacy Benefit Managers /health-industry/pharmacy-benefit-managers-pbms-drug-costs-common-ground-tennessee/ Mon, 28 Sep 2026 09:00:00 +0000 /?p=2281035 Amye Joseph says America’s political polarization has made it an “interesting time” in her Tennessee household. She and her husband, Charlie, have been married 35 years. She’s a Republican. He’s a Democrat.

But their shared disenchantment with profit-driven healthcare has provided a unifying target: pharmacy benefit managers, known as PBMs. The Josephs’ frustration is focused on CVS Health. The conglomerate, which reported $400 billion in revenue last year, includes a major health insurer (Aetna), one of the country’s dominant PBMs (CVS Caremark), and America’s largest retail pharmacy chain.

“We hate CVS. I’m going to be straight-up,” Amye Joseph said.

She laments the lack of face-to-face interaction with pharmacists, prices that seem to rise without explanation, and pressure from the couple’s CVS Caremark drug plan to use CVS stores instead of their local pharmacy. “They’re not even a middleman,” she said. “They’re a money grab for CVS.”

PBMs were conceived as a way to manage prescriptions and hold down costs. But these middlemen have become bipartisan punching bags, accused of sucking up profits at the expense of employers, governments, and patients.

And while healthcare debates still divide Democrats and Republicans in Washington, D.C., taking on PBMs has become a unifying cause in an era of widespread frustration over rising healthcare costs.

In recent years, every state has imposed restrictions on PBMs. The Josephs’ home state of Tennessee, where the GOP has a lock on state government, is among a growing number looking to outlaw companies that own PBMs from also owning brick-and-mortar pharmacies, as CVS does.

That’s aligned conservative, business-friendly Republicans with Democrats traditionally more open to government regulation.

This legislative push reflects a feeling even in the GOP that the market for prescription drugs is being gamed, said Antonio Ciaccia, CEO of , a nonprofit think tank that tracks drug pricing.

“Republicans are looking at this issue, saying, We know what competition is supposed to do, and it isn’t happening,” said Ciaccia, a critic of the PBM industry. “This is not a free market.”

Charlie Joseph, a retired fire captain who now works as a custodian, was miffed when he realized he could save money on his blood pressure medication if he paid cash at his local pharmacy rather than using his CVS Caremark drug plan. He now buys a 90-day supply for the same price he would have paid for a 30-day supply through the CVS plan.

Charlie and Amye Joseph stand on their porch.
The Josephs don’t like dealing with pharmacy benefit managers. PBMs, designed as intermediaries between drugmakers and insurance companies to negotiate drug prices, have become targets of bipartisan anger over health costs. (Earl Neikirk for 吃瓜不打烊)

“Right now, it’s more of an inconvenience than anything else as far as it goes, but there’s no consistency,” he said. “The whole healthcare thing is just frustrating, on a good day.”

CVS spokesperson Phil Blando said the price of individual drugs can vary.

“Looking at the price of a single prescription does not reflect the value of a comprehensive pharmacy benefit,” he said in a statement. “Our focus remains delivering the lowest possible total cost and the greatest overall value for members and plan sponsors.”

Unified Opposition

PBM officials say their industry has been unfairly maligned. “PBMs are the only part of the prescription drug supply chain working to lower drug costs, which makes PBMs the target of powerful groups, Big Pharma and pharmacists,” said Greg Lopes, a spokesperson for the Pharmaceutical Care Management Association, which represents PBMs across the nation.

“Drug manufacturers attempt to shift blame for high drug costs to PBMs in order to retain their profit margins and weaken PBMs’ ability to lower costs,” he said.

Drugmakers have worked for years to cast PBMs as unnecessary go-betweens, said Barak Richman, a lawyer and economist who studies healthcare competition at George Washington University. He called the fight between the two industries a corporate “cage match.”

“We have wildly passionate partisan divides on a lot of healthcare,” he said. “But there’s a lot of healthcare policy that I don’t think is obviously partisan.”

PBMs haven’t won over many Democrats or Republicans. Attorneys general from nearly 40 states and U.S. territories last year to congressional leaders arguing that “horizontal consolidation and vertical integration have transformed PBMs from useful administrative service providers into market-dominating behemoths.”

In state legislatures like Tennessee’s, shared ownership of PBMs and pharmacies has drawn particular fire. Independent pharmacies have little choice but to contract with major PBMs while also competing with the conglomerate-owned pharmacies. Many lawmakers have said they want to protect small businesses.

“If a corporation argues that its pharmacy cannot survive unless it is owned by the same entity that sets the reimbursement rate, then we’re not talking about a free market. We’re talking about control,” Tennessee state Sen. Bobby Harshbarger said in a February legislative hearing.

Harshbarger, a Republican who led the legislative push, is a pharmacist in a small city in northeastern Tennessee.

His mother, U.S. Rep. Diana Harshbarger (R-Tenn.), is also a pharmacist and has sponsored a similar PBM ownership ban . The Senate version has brought together some unlikely bedfellows, such as Sens. Elizabeth Warren (D-Mass.) and Josh Hawley (R-Mo.).

State Lawmakers vs. CVS

CVS officials argued the Tennessee legislation was misguided. “Any proposed reform should be evaluated based on whether it improves access to care, simplifies the patient experience, and enhances affordability,” Blando said.

It’s unclear whether the PBM ownership ban will do that in Tennessee. by the state legislature’s researchers concluded that the bill could drive up healthcare costs in the short term.

To fight the bill, CVS launched a $7 million , claiming it would have to close all its 134 pharmacies in the state, similar to its threat in neighboring Arkansas when state lawmakers there passed in 2025.

CVS also sent to Tennessee customers, asking them to contact their lawmakers to keep pharmacies open. from CVS helped kill a PBM ownership ban in Louisiana last year.

Sponsors of the legislation said closure wasn’t the only option: CVS could also divest either its stores or its PBM.

Tennessee lawmakers moved forward. State Sen. Rusty Crowe, a Republican from northeastern Tennessee, where the Josephs live, told his colleagues before the vote that they should consider the fierce resistance a sign that they were onto something.

“I learned when I was in the Vietnam War, when you start taking on flak, you know you’re over the damn target,” he said.

As with most votes in Tennessee’s legislature, Republicans didn’t need support from Democrats. But they got it anyway.

State Rep. Antonio Parkinson, a Democrat from Memphis, said he felt like he was voting in favor of lower drug prices and supporting “ma and pa” pharmacies. “If there’s a benefit to my people, I’m supporting it.”

CVS has not divested or closed its pharmacies in states that have passed ownership bans 鈥� the laws have yet to take effect. The Arkansas ban is being held up in court after CVS challenged the constitutionality of the law. CVS also sued in Tennessee, though the ownership ban doesn’t take effect until 2028.

This article is from a partnership that includes , , and 吃瓜不打烊.

吃瓜不打烊 is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF鈥攁n independent source of health policy research, polling, and journalism. Learn more about .

This article first appeared on 吃瓜不打烊 and is republished here under a .

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Insurance Coverage Lags as Cancer Science, Treatment Move Forward /health-industry/rare-brain-cancer-tumors-genetics-drug-coverage-astrazeneca-lynparza-texas/ Tue, 22 Sep 2026 09:00:00 +0000 /?p=2285126 A photo of Mason Henderson and his mother, Tabitha Lowe, outside a shop in New York.
Mason Henderson with his mother, Tabitha Lowe, in November during a visit to New York, where Henderson was participating in a clinical trial to treat his brain cancer. Henderson died in May after a two-year battle with the disease. (Jerry Lowe)

Eighteen months after his initial diagnosis, chemotherapy hadn’t slowed 21-year-old Mason Henderson’s rare brain tumor, which had spread to his spinal fluid. So he left his home in southeastern Texas to spend three weeks in a clinical trial in New York City.

But that failed, too, leaving a murky path for Henderson, whose cancer was so rare the World Health Organization had only in 2021. So early this year, Henderson’s doctors, evaluating his tumor’s deep genetic language, turned to a drug made by Merck and AstraZeneca called Lynparza.

It was not the standard of care for Henderson’s condition 鈥� there wasn’t really any standard, which is not unusual for rare cancers. And Henderson’s insurance would not pay for it, despite the careful justification given by the two specialists treating him.

“They have no guidelines for his cancer,” Henderson’s mother, Tabitha Lowe, said in a March interview with 吃瓜不打烊. “They’re discriminating against him because his cancer is so rare.”

A photo of Tabitha Lowe and her son Mason Henderson smiling by a lake.
Tabitha Lowe and her son Mason Henderson. Lowe spent six weeks trying to get an $8,700-a-month drug for her son that the family’s pharmacy benefit manager wouldn’t cover. (Tabitha Lowe)

Every year, tens of thousands of people 鈥� representing about a 鈥� are diagnosed with tumors that differ enough from frequently identified ones to be called rare. In determining whether to reimburse treatment for such ailments, insurers turn to Food and Drug Administration labels and expert guidelines.

But these rare afflictions often lack targeted, FDA-approved treatment options, even though in many cases, molecular tests offered by diagnostic companies and university labs can provide a strong suggestion of what will work.

“Insurance coverage routinely trails behind what genomic testing reveals about a patient’s cancer and what the science supports,” said Olivier Elemento, director of Weill Cornell Medicine’s Englander Institute for Precision Medicine.

Henderson’s neuro-oncologists, Jacob Mandel of the Baylor College of Medicine and Jessica Schulte of NYU Langone Health, decided to try Lynparza, also known by the generic name olaparib, in combination with chemotherapy. There wasn’t a wealth of evidence behind the drug but there was a “biologically reasonable” assumption it would help, Schulte said, because cells in tumors like Henderson’s have a flaw that drugs like Lynparza can target. Providers in several previous cases had seen brain cancers like Henderson’s respond well to the drug.

“In general, we try to base our treatment decisions on large patient studies” involving hundreds of patients, Schulte said. But large clinical trials will probably never be conducted for a cancer as rare as Henderson’s.

Schulte, who specializes in brain cancers in young adults, sees only a few of Henderson’s type each year, she said.

Mandel prescribed the drug on Jan. 16. Liviniti, Henderson’s pharmacy benefit manager, responded with a quick refusal on Jan. 30. Two weeks later, the company sent an explanation: “Lynparza is not approved for the diagnosis provided.” Out-of-pocket, the drug would cost about $8,700 per month, Lowe said. Liviniti did not respond to phone calls seeking comment.

Before his diagnosis, Henderson was a healthy, athletic young man with a big heart, faith in Jesus, and a tight group of friends, his mother said. At Evadale High School, north of Beaumont, Texas, Henderson played baseball and football and was homecoming king in 2022. After graduating, he worked at the local paper mill, spending his free time hunting, fishing, and exploring the woods on an all-terrain vehicle. He wanted to be a police officer, Lowe said.

Henderson was 20 on March 15, 2024, when his brother Gunner found him at the top of the stairs in the family home with his head in his hands. “He was in the post-seizure state,” Lowe said. “He couldn’t talk. Was crying. Trying to hug me. Could not communicate.”

At an emergency room in Beaumont, an MRI revealed a large tumor. He was transferred to Baylor St. Luke’s Medical Center in Houston and diagnosed with a form of brain cancer called diffuse hemispheric glioma (H3-G34 mutant).

Surgery a few days later cut out 90% of the tumor, but brain cancers are almost impossible to remove entirely, because of the delicacy of the tissue they’re embedded in, Schulte said.

After 16 months of radiation and chemotherapy, a September 2025 scan showed the cancer had spread to his spinal cord, a condition called leptomeningeal disease that usually proves fatal within a few months. Mandel contacted Schulte about a clinical trial she was leading. It consisted of 11 days of brutal craniospinal irradiation, which left Henderson exhausted. When it was over, the cancer was still there.

“The family was wonderful,” Schulte recalled. “They were trusting in their team, but they asked appropriate questions to make sure that we were thinking about Mason as a person.”

Coverage Refused

Lynparza, approved by the FDA in 2014 for ovarian cancer, works by interfering with tumor cells’ ability to multiply. After Liviniti, the pharmacy benefit manager, refused coverage for Henderson, his family turned to Jefferson County. Henderson’s stepfather, Jerry Lowe, flies helicopters for the county sheriff’s office.

The county, which had the final say on reimbursement because it pays claims directly for its employees’ family health coverage, also refused. When Henderson’s family appealed, the county review board authorized an independent medical reviewer to look at the case. The nonspecialist supported the board’s finding and recommended another drug, but Henderson’s doctors disagreed. The board didn’t respond to a request for comment.

AstraZeneca had also turned down the family’s request for a donation of the drug. By then it was March, six weeks after Lynparza was prescribed.

Cancers that start in the brain are unusual 鈥� only about 25,000 cases are diagnosed in the U.S. each year, compared with 320,000 breast cancers and 229,000 lung cancers. Only a few hundred people each year, mostly young adults, are diagnosed with Henderson’s type, according to Schulte.

Treatment options for diffuse hemispheric glioma are few; brain cancers in general are often excluded from clinical trials. They represent a relatively small market for a pharmaceutical company. Testing drugs against them is risky, because of the brain’s sensitivity, and difficult because the drug must pass through the tightly packed cell walls lining the blood vessels, known as the blood-brain barrier.

A photo of Tabitha Lowe smiling with her son Mason Henderson.
Patients like Henderson often struggle to get medications that are prescribed off-label based on recent scientific findings. (Tabitha Lowe)

Still, drugmakers are increasingly homing in on narrower and potentially more accurate drug targets as science reveals more of cancer’s remarkable molecular diversity.

Under , the FDA has approved to be used for patients whose tumors have specific mutations, regardless of the organ where the cancer first appeared. These “tissue agnostic” drugs are still a tiny minority, but as genome sequencing becomes more common 鈥� order it for patients 鈥� insurers will have to keep up, Weill Cornell’s Elemento said.

Several U.S. research groups are hosting clinical experiments known as “basket trials,” in which mostly late-stage cancer patients are put on drug combinations based on tumor genetics, rather than the organ of origin.

The American Society of Clinical Oncology has recruited more than 3,000 patients into one of the biggest efforts, the Targeting Agent and Profiling Utilization Registry, , which began in 2016. It provides off-label treatments at no cost to advanced-staged cancer patients at more than 270 U.S. oncology practices.

About half the participants have benefited, and in rare cases the treatment kept patients alive for a year or more or seemingly cured them, said Richard Schilsky, the program’s founder and its principal investigator until recently. The results have led to changes in several treatment guidelines, he said, and a change in guidelines “usually is sufficient to create a pathway to reimbursement by insurance.”

Research has uncovered “quite a few” cases in which Lynparza was effective against a variety of tumor types, Schilsky said. But like many clinical trials, TAPUR excludes patients with primary brain tumors 鈥� like Henderson’s.

Oncologists disagree on how broadly genetics discoveries will transform cancer diagnosis. Cancers are currently identified as breast, colon, lung, etc., because those are the cells that pathologists see when diagnosing a tumor, said Razelle Kurzrock, the associate director of clinical research at the Medical College of Wisconsin Cancer Center.

But that’s a “mistake of history,” she said. “You’re making the diagnosis based on the pathologist’s view of the surface of the cell rather than what’s actually driving the cancer.”

A Dutch father and son invented the first light microscope to peer at cells around 1590. The Human Genome Project finished in 2003. If genome-enabled next-generation sequencing, now used for molecular tumor scans, had come before the light microscope, “no one would look at organ of origin,” she said.

Kurzrock leads a clinical trial in which every patient gets individualized cancer therapy based on DNA, RNA, and protein patterns in their tumor. Instead of getting drug combination A or B, “in our trial everyone gets a different set of drugs,” she said. Physicians can instead use standard therapies, she said, and their patients are the study controls.

Other oncologists see limitations to purely genetic diagnosis. Certain cancer centers advertise by saying, “鈥榃e’ll sequence your tumor better than anyone else, and therefore you’ll live longer and do better if you come here,’” said Kathy Miller, a professor of oncology at Indiana University. “But the evidence doesn’t support those claims right now.”

鈥業 Wouldn’t Give Up’

In Henderson’s case, the problem was never diagnosis; Baylor clinicians identified his cancer type quickly. But its rarity and location made the tumor hard to fight, and the lack of financial help made it even harder.

On March 8, Tabitha Lowe went on Facebook, LinkedIn, and Instagram with photos of her son and descriptions of his plight. She tagged AstraZeneca, Liviniti, and the county board that had denied his reimbursement. “Rare cancer patients are denied treatment simply because their cancers are rare,” she wrote in one of the posts, which were shared hundreds of times.

“I hated to take this route, but when it comes to my kids there’s nothing I won’t do,” she told 吃瓜不打烊. “I’ve cried, I’ve stressed out, but I wouldn’t give up.”

A screenshot of a Facebook post by Tabitha Low tags AstraZeneca, @cancerresearch, @rarediseases, and the National Comprehensive Cancer Network. The text of the post reads, "PLEASE SHARE!" followed by images of Mason Henderson describing his condition.
Tabitha Lowe took to Facebook to try to get her son Mason Henderson access to the brain cancer treatment his doctors sought for him. (Tabitha Lowe)

The next day, AstraZeneca’s patient assistance program, which had turned down her request for the drug two weeks earlier, emailed her with good news: A bottle of 60 Lynparza pills had been shipped to her pharmacy. Company spokesperson Tara Parsell said patient confidentiality prevented her from commenting on its actions.

Lowe’s six-week battle had paid off. Now, “it’s in God’s hands,” she said in an April interview. By mid-April, however, Henderson could no longer walk. Then came issues with his speech. “It all happened so fast.”

On May 4, in the family’s living room, where his bed had been moved, Henderson died, after taking the drug for nearly two months. Hundreds attended his memorial service; their cars made a procession seven minutes long.

The family has created a college scholarship in Henderson’s name for graduates of the local high school. An online campaign and bass fishing tournament had raised nearly $24,000 by September. Willie Robertson of Duck Dynasty, professional pickleballer Tyson McGuffin, and pro fisherman Hank Parker donated items for a raffle. Country singer Mark Chestnutt sent two signed guitars, Lowe said.

“Faster treatment would have been better,” although it’s hard to know whether it would have extended Henderson’s life, NYU’s Schulte said.

“I will always wonder,” Lowe said in a phone interview this summer. “Cancer don’t pause while the paperwork’s in progress.”

“There’s something especially painful thinking about how much time I spent fighting healthcare instead of being with Mason,” she added. “I was forced to become a PBM, insurer, research expert, all while trying to be his mother.”

吃瓜不打烊 is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF鈥攁n independent source of health policy research, polling, and journalism. Learn more about .

This article first appeared on 吃瓜不打烊 and is republished here under a .

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With Midterms Looming, Journalists Consider Measles, Food Recalls, and Obamacare /on-air/on-air-august-29-2026-measles-vaccination-food-recalls-midterm-elections/ Sat, 29 Aug 2026 09:00:00 +0000 /?p=2281043&preview=true&preview_id=2281043

Céline Gounder, 吃瓜不打烊’ editor-at-large for public health, discussed fatal measles cases on CBS News 24/7’s Mornings on Aug. 26. Gounder fact-checked Centers for Medicare & Medicaid Services Administrator Mehmet Oz’s comments about vaccines and drug prices on CBS News 24/7’s The Daily Report on Aug. 24. She also discussed food recalls this summer on CBS News 24/7’s The Takeout With Major Garrett on Aug. 24.

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吃瓜不打烊 chief Washington correspondent Julie Rovner discussed kindergarten vaccination rates on WNYC’s The Brian Lehrer Show on Aug. 25.

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吃瓜不打烊 contributor Mark Kreidler discussed the use of artificial intelligence for Medicaid reenrollment on KVPR’s Central Valley Daily on Aug. 24.


吃瓜不打烊 senior correspondent Julie Appleby discussed the state of the Affordable Care Act on Vox’s Today, Explained podcast on Aug. 24.

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吃瓜不打烊 Georgia correspondent Briah Lumpkins discussed the importance of healthcare policy in upcoming elections on WUGA’s The Georgia Health Report on Aug. 21.

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吃瓜不打烊 is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF鈥攁n independent source of health policy research, polling, and journalism. Learn more about .

This article first appeared on 吃瓜不打烊 and is republished here under a .

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The Medicare GLP-1 Discount Has One Big Catch: Some Sick Patients Don’t Qualify /aging/medicare-glp1-bridge-weight-loss-drugs-coverage-exceptions-cost-access/ Tue, 25 Aug 2026 09:00:00 +0000 /?p=2272688 In January, Jeff La Marca got a prescription for the popular weight loss drug Zepbound. But he couldn’t afford the $750 monthly price tag.

Then Medicare launched an 18-month pilot program that offers GLP-1 medications to some enrollees for only $50 a month. La Marca thought he might finally be able to afford the drug.

“I thought, 鈥楾hank God, there’s a path,’” said La Marca, who lives in Basking Ridge, New Jersey, and has tried numerous diets and exercise regimes.

But the 68-year-old’s celebration was short-lived.

His application to the pilot program was denied.

La Marca has severe obstructive sleep apnea, one of several diagnoses that exclude patients from the Bridge program’s $50 monthly price. The notification didn’t say why he was rejected. He thinks that if he didn’t have that diagnosis, he would qualify due to his weight.

“I’m obese, morbidly obese, BMI 42. I had quadruple heart bypass surgery. I’m at risk for stroke. I’m prediabetic. And yet I can’t get it. I’m livid,” he said.

A medical device used for obstructive sleep apnea sits on a table.
Jeff La Marca uses a machine to treat his obstructive sleep apnea. It adjusts his breathing with every breath. (Erica S. Lee for 吃瓜不打烊)
An older man puts on an oxygen mask that is connected to a medical device for sleep apnea.
La Marca, a retired professor living in Basking Ridge, New Jersey, is among an estimated 5.9 million Medicare enrollees excluded from a GLP-1 discount program because they have a medical condition such as Type 2 diabetes or sleep apnea. (Erica S. Lee for 吃瓜不打烊)

A Temporary Patch for a Long-Standing Gap

About 1 in 5 American adults have taken a GLP-1 medication, and most of them, including those with health insurance, say the drugs are . Federal law has long barred Medicare from covering drugs prescribed solely for weight loss, which is why the Medicare GLP-1 Bridge program made a big splash when it launched in July.

It’s a short-term pilot program in which Medicare is offering coverage of three GLP-1s for weight loss and management, to see if that would save Medicare money later. Eligible patients must be enrolled in Medicare Part D, a prescription drug coverage add-on to Medicare. Even though people must have Part D insurance to qualify, the preauthorization request doesn’t go through the insurer; it’s instead submitted to a separate system run by a contractor for the Centers for Medicare & Medicaid Services.

The pilot includes Wegovy, the KwikPen formulation of Zepbound, and the oral medication Foundayo.

Under the pilot, many Medicare beneficiaries with a body mass index of 35 or higher 鈥� the 鈥� qualify for coverage of one of those drugs, if prescribed. Those otherwise eligible who have a BMI of 27 to 34 can qualify if they also have certain health conditions, such as prediabetes or cardiovascular disease.

But buried in the fine print is a distinction that’s tripping up patients like La Marca: The $50 price under Bridge applies only to people using the drug solely for weight loss. Anyone who has a qualifying medical condition that the Food and Drug Administration has approved GLP-1s to treat, such as Type 2 diabetes or moderate to severe obstructive sleep apnea, is instead routed back to their Medicare Part D prescription drug plan, which can require copays of hundreds of dollars a month for GLP-1s.

“The Bridge program was designed to target those people who can’t get GLP-1 coverage through Part D but would benefit from taking one for weight loss,” said Juliette Cubanski, who directs the Program on Medicare Policy at KFF, a health information nonprofit that includes 吃瓜不打烊.

The cost to Medicare of subsidizing the drugs will depend largely on how many people use the program, and the federal government hasn’t released an estimate.

Cubanski that 3.8 million people qualify and that, if a quarter of them enroll in Bridge and remain on treatment for the program’s full 18 months, it will cost Medicare about $3.3 billion. If three-quarters enroll, costs could rise to $10 billion.

If the government expanded the program to include the additional 5.9 million people who are overweight and already eligible for GLP-1 coverage through Medicare Part D, it would add billions more to the program’s cost.

The demonstration’s initial weeks have been positive, and most prior authorization requests have been completed in under 12 hours, CMS spokesperson Timothy Foster said.

“This has allowed thousands of eligible beneficiaries to access GLP-1 medications for weight loss at pharmacies nationwide,” Foster said.

An older man wearing a plaid shirt with suspenders sits on his front porch with his hands resting on his cane.
“I’m obese, morbidly obese, BMI 42. I had quadruple heart bypass surgery. I’m at risk for stroke. I’m prediabetic. And yet I can’t get it. I’m livid,” La Marca says, referring to the popular weight loss drug Zepbound. (Erica S. Lee for 吃瓜不打烊)

GLP-1s Aren’t Covered

Patients like La Marca are left in a tough spot, qualifying for Part D coverage of a GLP-1 but facing much higher cost sharing.

“鈥楥overage’ doesn’t always mean 鈥榓ffordable,’” said primary care physician , who describes herself as a “big proponent” of GLP-1s and practices at Sunflower Medical Group in Roeland Park, Kansas.

The Bridge program is leaving behind patients with the greatest medical need, she said. She noted that many Medicare patients already must navigate prior authorization and spend months trying alternate, often cheaper treatments, a process known as step therapy, before finally getting approval 鈥� only to arrive at the pharmacy counter and discover that their GLP-1 copays will run them $200 to $600 a month, if not more.

Researchers studying how Medicare insurers cover GLP-1s that recipients have faced increases in out-of-pocket costs and that almost all plans now require prior authorization, which can make getting the drugs more difficult.

Chris Bond, a spokesperson for insurance industry trade group AHIP, blamed drugmakers’ prices, “which they alone set and they alone can lower.”

La Marca’s insurer declined to answer specific questions about La Marca’s case.

Left Waiting

For now, La Marca’s GLP-1 prescription remains unfilled. The severe sleep apnea diagnosis that helps establish his medical need is also what excludes him from the discount program that would bring the cost within his reach.

As he reflected on his appeals and the dead ends, La Marca paused, his eyes filling with tears of frustration.

“This is now my quest, because it’s my only chance to improve my health,” he said. “It’s the only thing left. I’ve tried everything.”

吃瓜不打烊 is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF鈥攁n independent source of health policy research, polling, and journalism. Learn more about .

This article first appeared on 吃瓜不打烊 and is republished here under a .

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Watch: Mark Cuban Says You Can鈥檛 Fix Healthcare Until Every Price Is Known /health-care-costs/interview-mark-cuban-fix-healthcare-full-price-transparency/ Fri, 21 Aug 2026 09:00:00 +0000 /?p=2277194&preview=true&preview_id=2277194 The ongoing debate over the U.S. health system shouldn’t be based on whether the government or the private sector is the dominant player, billionaire entrepreneur Mark Cuban said this week. The bigger issue, he said, is whether the system’s participants are transparent about what they charge and what they pay.

“I’m not opposed to single-payer or universal healthcare at all,” Cuban said Aug. 18 in an interview with 吃瓜不打烊. But “when you don’t know all the costs, when there’s no transparency, it’s impossible to determine if it’s a better solution or not,” he said.

Cuban’s remarks came on the heels of primary election victories by progressive supporters of “Medicare for All” 鈥� most notably Abdul El-Sayed, who recently clinched the Democratic Senate nomination in Michigan.

The former majority owner of the Dallas Mavericks and a former investor on the hit TV show Shark Tank, Cuban changed the way generic prescription drugs are sold in 2022 by co-founding Mark Cuban Cost Plus Drugs. The website, which posts all its costs and takes a blanket 15% markup, sells thousands of medications, often at deep discounts compared with buying through private insurance plans or self-pay pharmacies.

“We took the transparent path for an industry where there was zero transparency,” Cuban said. “Everybody else prices to the market; we price to what we thought was fair.”

Cuban said that, in thinking about the broader problems facing the U.S. healthcare system, the key is to rebuild trust. “Trust really is a formula,” he said. “Trust equals transparency divided by self-interest.”

One way to build trust, he said, is to give consumers incentives to find the best price for nonemergency health services. Cuban said that means every medical purchase should count toward health insurance deductibles and out-of-pocket maximums, which is not currently the case.

He also advocates breaking up some of the vertically integrated health companies that have grown so large 鈥� owning insurers, care providers, and the companies that serve them 鈥� that they can dictate their prices. “If you break up these big, huge conglomerates, everything changes. The price of everything drops like a rock,” he said.

But so far, only a few lawmakers have been brave enough to push that goal, Cuban said, citing the co-sponsored by senators Josh Hawley of Missouri, a Republican, and Elizabeth Warren of Massachusetts, a Democrat.

In the end, Cuban said, what matters is not who is running the system but whether all the cards are on the table 鈥� in particular, whether the terms of healthcare contracts are public. Whether it’s the government or private businesses doing the negotiating, “if you don’t know how the deals are structured, it’s impossible to negotiate better ones.”

The interview was part of the “How Would You Fix It?” series featuring Julie Rovner, 吃瓜不打烊’ chief Washington correspondent and host of the What the Health? podcast.

An abbreviated version of this interview aired Aug. 20 in Episode 460 of What the Health? From 吃瓜不打烊: “Headless FDA Gets a New Nominee.”

吃瓜不打烊 is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF鈥攁n independent source of health policy research, polling, and journalism. Learn more about .

This article first appeared on 吃瓜不打烊 and is republished here under a .

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How Much of a Cancer Drug Is Too Much? Patients, Researchers Challenge FDA-Approved Dosages /health-industry/cancer-drug-immunotherapy-fda-approved-dosages-challenged-keytruda-opdivo/ Thu, 20 Aug 2026 09:00:00 +0000 /?p=2273114 Northwestern University economist Chuck Manski studies decision-making amid uncertainty. That prepared him better than many other cancer patients to decide whether to stay on an immunotherapy treatment that was making him very ill.

For six months in 2022, Manski received monthly infusions of nivolumab to fight advanced melanoma. The drug ruined his thyroid gland, he said, requiring him to go on a special medication for the rest of his life, and caused severe dryness in his eyes, lips, and mouth. The FDA’s protocol for the drug called for an entire year of treatment, but Manski said his oncologist couldn’t explain why. It’s FDA-approved, “so that’s what we use,” she said.

By that point, Manski showed no cancer signs or symptoms, and after reading a lot of medical journal articles, he concluded that the intense side effects probably meant the treatment had done about all it could do.

“She couldn’t tell me a year was the optimal dose. Nobody could,” he said in a June interview from Spain, where he received an award for his economics work. “So I made my own diagnosis. I took myself off.”

Manski’s decision was in line with what doctors in , , were already doing: giving lower doses of nivolumab, sold under the brand name Opdivo, and of a similar drug, pembrolizumab (Keytruda), or giving them for shorter periods or over longer intervals than the FDA recommended. In India, oncologists found that of nivolumab had a powerful impact on several cancers.

“There is incredible uncertainty in drug dosing,” Manski said.

His experience impelled him to join an informal yet determined community of researchers, doctors, and patients pushing for extra studies to help patients and doctors find the right dosage for an array of cancer drugs. They point to evidence suggesting that taking smaller doses of some cancer drugs, or remaining on them for shorter periods, could save billions of dollars and prevent some of the worst side effects.

In a , 43% of U.S. adults said they had skipped their medication in the past year because of cost. A Vanderbilt University study of Medicare enrollees released in 2022 found that went unfilled at the pharmacy.

But dose-optimization studies rarely occur after the early stages of a drug’s development, or once it’s on the market. By then, few parties in the U.S. healthcare system 鈥� beyond patients 鈥� have a stake in learning that a lower dosage could work as well while causing less harm.

Pharmaceutical companies have shown little interest in dialing back recommended dosages. Once they set the price for a drug, the more sales, the more profit. One study that examined 29 expensive cancer drugs estimated that if minimum necessary dosages had been used in 2024, the U.S. healthcare system could have saved roughly $31 billion.

“Decisions aren’t always made with the best needs of the patients in mind. The bottom line is another reason,” said Matthew Goetz, a breast cancer researcher at the Mayo Clinic Comprehensive Cancer Center.

A photo of two IV bags as someone receives immunotherapy medication for melanoma treatment. The leftmost IV bag has "nivolumab" written on it.
Doctors in other countries have been giving patients lower doses of nivolumab or giving them for shorter periods or over longer intervals than the FDA recommends. (George Frey/Bloomberg via Getty Images)

Merck last year sold nearly $32 billion worth of pembrolizumab, a drug that’s FDA-approved for more than 40 cancer conditions. It accounted for almost half of Merck’s drug sales. Bristol Myers Squibb, meanwhile, brought in $10 billion from nivolumab, which works similarly to pembrolizumab in tweaking the immune system. Three important but often toxic breast cancer drugs 鈥� Ibrance, Verzenio, and Kisqali 鈥� at Pfizer, Eli Lilly, and Novartis by $4.1 billion, $5.7 billion, and $4.8 billion, respectively.

Pembrolizumab is usually prescribed at a fixed dosage; nivolumab is sometimes prescribed at a fixed dosage, sometimes based on the patient’s weight. If the patient is dosed less than what’s on the label, drugmakers generally get less money. And they aren’t the only ones who lose out.

Through a federal program known as 340B, created in 1992 to subsidize the treatment of low-income patients, hospitals that treat a certain percentage of low-income patients can buy drugs at a steep discount, while charging insurers or patients more. For Medicare patients, doctors are paid an additional for each infusion.

From 2010 to 2024, cancer drug revenue to doctors and hospitals increased from about $9 billion to nearly $36 billion, according to research by . About half those profits came from immunotherapy drugs like pembrolizumab and nivolumab.

“Pembrolizumab is ,” said Mark Ratain, a professor of medicine and chief hospital pharmacologist at University of Chicago Medicine. “That’s why you don’t see hospitals in this country running to do trials that test lower doses.”

A man stands in a garden area outside of his home. Foliage is seen blurred in the foreground.
Mark Ratain, a University of Chicago oncologist and clinical pharmacologist, battles what he sees as unnecessarily high dosages of high-cost cancer drugs such as Keytruda and Opdivo. (Taylor Glascock for 吃瓜不打烊)

Merck spokesperson Julie Cunningham said the drug’s dosage recommendations were based on extensive testing. “In a life-threatening and challenging disease such as cancer, it is critical that the dosing for a cancer therapy is established through well-designed clinical trials,” she said. “Changes in dose or duration that have not been similarly studied may potentially compromise the therapeutic effect.”

Still, some oncologists start their patients off slowly on any of a variety of cancer drugs, although there may be concerns about lawsuits by a patient or their survivors over a prescription of lower-than-labeled dosages.

Kathy Miller, a professor of oncology at the Indiana University School of Medicine, routinely starts metastatic breast cancer patients with 400 milligrams of Kisqali daily for three weeks (with one week off), rather than the 600 milligrams recommended on the label. Sometimes patients ask for the standard dosage.

“I have to tell them, 鈥業 don’t want to kill you,’” she said.

Insurers routinely challenge her lower-dosage prescriptions, Miller said, presumably because price rebates from the drug company are set to the standard dosage. To avoid endless phone battles with insurers, she prescribes 600 milligrams but tells her patients to take only two of the 200-mg pills and save the third for the next cycle.

Follow the Cures 鈥� And the Money

On May 31, at the annual meeting of the American Society of Clinical Oncology, or ASCO, at Chicago’s McCormick Place convention center, most of the audience of 8,000 rose in a prolonged standing ovation for the experimental drug daraxonrasib. Patients with pancreatic cancer who took the drug, presented that day, lived nearly twice as long 鈥� a median of 13 months 鈥� as those receiving chemotherapy.

The next day, in a slightly smaller hall, Amol Patel, a medical oncologist from New Delhi, discussed studies in various cancers in which 20- or 40-mg doses of nivolumab biweekly 鈥� one-sixth or one-twelfth the recommended dosage 鈥� gave Indian patients several months to a year longer survival than patients who underwent chemotherapy, and with fewer side effects.

Fewer than 100 people attended Patel’s talk.

The ingenious development of daraxonrasib was big news, since pancreatic cancer has been a death sentence until now. But from a global perspective, the news out of India might be just as important.

At the ASCO meeting, “the focus is always on the shiny new drug,” said Daniel Goldstein, an oncologist and drug policy researcher at the Rabin Medical Center in Israel who has fought for a decade, with some success, to lower pembrolizumab dosages in hospitals there and in other countries. “It can be quite lonely to be us,” he said, adding that he’s seen increasing appreciation of his work.

The data from India offered a glimpse of what could be. However, the studies Patel referred to compared ultralow-dosage immunotherapy to older chemo drugs; none compared ultralow doses against standard nivolumab or pembrolizumab treatments. In India, this would be a sterile exercise, because full-dose treatments are beyond the reach of any but the very wealthy, said Vanita Noronha, an oncologist at Tata Memorial Hospital in Mumbai.

Bristol Myers Squibb, or BMS, to make its drugs available in lower-income countries. But the company hasn’t been involved in the lower-dose nivolumab trials and, in a statement to 吃瓜不打烊, said the evidence suggested that or shorter duration harmed patients.

While not all U.S. oncologists agree with BMS’ assertion, the Indian data is, to most, a mere curiosity. “Can we really give 20 milligrams as opposed to 240?” asked Jessica Bauman of the Fox Chase Cancer Center in Philadelphia. “The only way we know for sure is a randomized study between the low dose and the highest.”

And such trials are unlikely to occur. That means only poorer countries are going to host “this groundbreaking research,” said Ratain, who is also a cancer doctor at the University of Chicago Medical Center. “The Indians may have better immunotherapy than we do.”

Clinicians in Europe, where maximizing healthcare dollars has long been a priority, have taken a middle course, studying lower, but not ultralow, doses of immunotherapy.

Pulmonologist Michel van den Heuvel at Utrecht University is comparing the standard nivolumab dosage for lung cancer patients with one that is as much as 50% lower. He also considered giving the low doses half as frequently, but that would have raised ethical concerns and led to a more cumbersome research protocol, van den Heuvel said.

In the United States, researchers led by a group at the Dana-Farber Cancer Institute are taking another tack: who’ve done well on 27 weeks of pembrolizumab can stop taking it, rather than doing the additional six months per FDA protocol.

At the Veterans Health Administration, which has more leeway in testing money-saving medical procedures, doctors saved $1.5 million, about 10% of the previous pembrolizumab cost, over two years at three Veterans Affairs hospitals where they implemented a pilot program to dose patients less frequently, said Garth Strohbehn, a University of Michigan oncologist who also works at the VA.

It saves money and requires fewer visits for veterans who often live hours from the hospital, he said. “It also helps other patients because it opens more slots for infusion.”

Julie Gralow, ASCO’s executive vice president and chief medical officer, has made testing dosage a priority. She’s working with scientists in India on an ambitious clinical trial to compare standard nivolumab with four lower dosage levels.

She’s also leading an , supported by the federally funded Patient-Centered Outcomes Research Institute, to see whether breast cancer patients can be effectively started on lower doses of the drugs Kisqali and Ibrance, which, along with Verzenio, are in a class of key breast cancer drugs known as CDK4/6 inhibitors.

“We want to maintain efficacy. But we also want patients to have excellent quality of life,” she said. Especially for patients with advanced cancers, where absolute cure is unlikely, “it’s our job to make sure we’re not compromising quality of life with higher doses that are unnecessary.”

In 2021, at Ratain’s urging, Richard Pazdur, who led the FDA’s cancer drug division for many years, launched , intended to get companies to conduct dosing studies that are more precise before launching the large clinical trials they use to obtain FDA approval for new drugs.

An exterior shot of the Food and Drug Administration headquarters.
The FDA usually can’t compel a drugmaker to conduct dose-ranging studies after a drug is approved, and by law the agency does not influence drug pricing, says Emily Hilliard, a Department of Health and Human Services spokesperson. (Valerie Plesch/Bloomberg via Getty Images)

The agency issued for dosing studies in 2024 and has incorporated Project Optimus principles into the approval process for new cancer drugs, said Health and Human Services spokesperson Emily Hilliard. For example, two dosing regimens were evaluated for each of four lung cancer drugs (fam-trastuzumab deruxtecan, tarlatamab, zongertinib, sunvozertinib), and the lower dose with fewer toxicities was approved in each case, she said.

The FDA usually can’t compel a drugmaker to conduct dose-ranging studies after a drug’s approval, Hilliard noted. And by law the agency does not influence drug pricing, she said.

Future drugs should have better dosage information, Bauman said, but “newer drugs will probably be just as expensive at lower doses.”

Financial Toxicity

Verzenio’s side effects made Allegra Warfield feel so sick, tired, and bewildered, she said, that she considered suicide. She switched to Kisqali, which was tolerable until last September, when coverage of the drug stopped despite her monthly premium payment of $6,000. The cash price for Kisqali was at least $16,000 a month.

After fighting her insurer for three months, Warfield, 42, sold her house and belongings in Palm Desert, California, and moved with her fiancé to Durham, North Carolina, where they’d found what they considered a reasonable insurance plan.

The cancer, the side effects, and the unpayable bills were bad enough. The lack of good answers for her treatment made everything worse, she said.

“I was left to research these medications on Facebook and Reddit. The only people talking about the daily reality of these drugs were other patients,” she said. “But I wanted the studies. I wanted practical guidance.”

Stories like these launched a new life mission for Kelly Shanahan, who was an OB-GYN in South Lake Tahoe, California, until side effects from a breast cancer drug caused her to lose sensation in her hands. Unable to practice medicine, Shanahan became a patient advocate who works with a group called the Patient-Centered Dosing Initiative. In 2021, Shanahan developed profound fatigue (“worse than caring for a newborn baby while being on call in my solo practice”) within a few weeks of going on Ibrance. Lowering the dosage caused her worst symptoms to lift, she said.

After gathering countless anecdotes, her group has approached drug companies seeking data 鈥� so far with little success 鈥� that might indicate what percentage of patients have needed dosage reductions, and how they fare on lower doses.

“If going down two dose levels cuts effectiveness by 50%, patients need to know that while making decisions. If it doesn’t, they need to know that,” Shanahan said 鈥� even if it means “the companies won’t make as much money.”

Shanahan suggested the data could be found in clinical trials and postmarket studies. But if drug companies won’t provide the necessary studies, Manski said, governments should.

“The knowledge to be gained is a common good,” he said.

A photo of Chuck Mansku standing in his home.
Manski’s research, focused on how people deal with conditions of uncertainty, helped him decide whether to stay on a melanoma treatment after it caused severe side effects. (Taylor Glascock for 吃瓜不打烊)

Has an insurance company or pharmacy benefit manager refused to cover a drug an oncologist recommended or prescribed for you or a loved one because the cancer is unusual or rare and lacks clear guidelines? Click here to contact 吃瓜不打烊’ reporting team.

吃瓜不打烊 is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF鈥攁n independent source of health policy research, polling, and journalism. Learn more about .

This article first appeared on 吃瓜不打烊 and is republished here under a .

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Newsom Promotes Affordable Insulin, but California鈥檚 Generic Label Off to a Slow Start /health-care-costs/gavin-newsom-calrx-state-branded-insulin-generic-biosimilar-drugs-rollout/ Mon, 17 Aug 2026 09:00:00 +0000 /?p=2270444 SAN FRANCISCO 鈥� At a Walgreens in this city’s bustling Japantown neighborhood, pharmacist Margaret On stocks two boxes of long-acting insulin pens from California’s new prescription drug label, , emblazoned with the state’s iconic grizzly bear.

Although she hasn’t dispensed any, On plans to keep them on hand. “It’s good to have if a patient comes in and doesn’t have health insurance,” she said. “Or just in case of emergencies.”

Seven months after the launch of its own low-cost insulin brand, state health officials said California has distributed more than 120,000 five-pen packs of insulin glargine priced at $55 each, significantly less than the $89 to $411 that the state says most popular brand names charge before any retail markups or consumer discounts.

While it represents a tiny amount of the state’s insulin pipeline, it marks the first time a state is competing against the insulin drugmakers 鈥� Eli Lilly, Sanofi, and Novo Nordisk 鈥� under its own prescription drug label. CalRx, Gov. Gavin Newsom’s experimental initiative, has dual aims: to act as an emergency supplier for people who are uninsured or can’t afford their prescriptions, and to disrupt the nation’s deep-pocketed pharmaceutical industry, which cost the U.S. in 2024, the federal government reported in June.

Newsom, a Democrat considering a presidential run in 2028, is expected to make healthcare a central pillar of his national platform as he concludes his second and final term as governor. To create the state brand of generic drugs, California inked a $50 million contract with , a Utah-based nonprofit drugmaker, to develop the CalRx insulin, known as a biosimilar. Though major distributors make the drug available in pharmacies around the state, uptake has been limited.

Newsom’s goal is to saturate the insulin market and offer generic versions of drugs either high in cost or low in supply, or that can improve public health. The state is also distributing free naloxone, used in a nasal spray to reverse opioid overdoses, and trying to bring albuterol inhalers to public schools for students with asthma emergencies. In the next two years, the state plans to launch epinephrine injectables, commonly known by the brand name EpiPen, which are used to treat severe allergic reactions, as well as a state-branded medication to treat tuberculosis.

Before he leaves office in January, Newsom said, he wants to add generic GLP-1 medications to compete with brand-name drugs such as Ozempic and Wegovy. The drugs have , but employers have about their cost.

Taking on drug costs is a winning political issue for both Democrats and Republicans, who have for years tried to rein in as Americans feel the pinch of high prices at pharmacy counters, in doctors’ offices, and from health insurance premiums. The U.S. spends roughly on prescription drugs as other industrialized countries. Six in 10 adults in the U.S. say they’re worried about being able to afford their prescription drug costs, according to a , and 4 in 10 say they’ve tried to save money such as by skipping doses and not filling prescriptions.

, President Donald Trump launched to potentially lower out-of-pocket costs for consumers. But TrumpRx doesn’t produce drugs; rather, it directs consumers to find more affordable medications with coupons or on drugmakers’ websites. Newsom, in contrast, is trying to drive down the underlying price of medicines by increasing the manufacturing and availability of generic drugs.

While some people with diabetes may benefit from CalRx insulin, California’s generic drug effort is largely symbolic at this time, said Geoffrey Joyce, director of health policy at the Schaeffer Center at the University of Southern California. “There is some value, but it’s for a very limited number of drugs for just a fraction of the population,” Joyce said.

And TrumpRx isn’t helping at a large scale either, Joyce added, because many medications it advertises have cheaper generic versions available elsewhere. It would be better, he said, to develop large-scale initiatives that tackle key drivers of the high cost of drugs, for rare cancers for instance, and produce safer and higher-quality medicines.

“What you really need is a national effort that focuses on vulnerabilities like supply shortages and increasing the supply of generic products for higher-priced drugs,” Joyce said.

Market Disruptor

CalRx aims to make insulin more affordable and accessible for the California adults diagnosed with diabetes. Newsom last year singled out the three major drugmakers that control more than 90% of the global insulin market, while also targeting intermediaries known as pharmacy benefit managers for promoting higher-priced drugs over cheaper generic alternatives.

Patients with health insurance often receive discounts at the pharmacy counter and do not pay sticker prices, yet those discount programs can be hard to navigate and patients can face restrictions. While drugmakers and pharmacy benefit managers said they’ve already initiated on out-of-pocket costs and pass price discounts on to consumers, Newsom argues that consumers still struggle to afford their medications.

He has criticized pharmaceutical companies for gouging Californians and contended that the industry’s discounting schemes don’t adequately address inflated prescription drug spending, which in the U.S. rose 7.9% in the most recent reporting year.

In his announcement last year that CalRx insulin would go on sale in January 2026, Newsom said the industry had been using discounts to distract consumers from solutions that could bring overall prices own. “One of the things that all of us should be increasingly concerned about is announcements around caps, announcements around discounts,” he said.

In January, California joined in setting . It also passed attempting to ban by pharmacy benefit managers.

Representatives for drug companies and pharmacy benefit managers said insulin is largely an affordable medicine in the U.S., arguing that consumers have benefited from discounts.

“While insulin prices, set solely by pharma companies, may be high in some instances, the amount patients are paying out of pocket has declined significantly,” said Christine Rex, senior director of state public affairs for the Pharmaceutical Care Management Association, which represents pharmacy benefit managers.

Reid Porter, a spokesperson for Pharmaceutical Research and Manufacturers of America, which represents brand-name drugmakers, said PBMs have driven up costs for consumers by excluding lower-cost medicines from their lists of covered drugs. “Too often, patients face a system in which insurers and PBMs exclude coverage of those medicines on formularies because of supply-chain incentives,” he said.

Where To Find CalRx Insulin

CalRx insulin has been slow to reach pharmacies around the state, and in interviews, patient advocates said many people with diabetes aren’t aware it’s an option.

In Sacramento, pharmacist Sharon Ngo, who works at a Safeway pharmacy, was surprised to learn that California had a long-acting insulin product on the market. She didn’t know that CalRx insulin was interchangeable with Lantus, which was on back order for roughly two weeks.

“I had no idea this was available,” she said as she took notes on a pad of paper. “We’re going to give this a try.”

CalRx insulin has a suggested retail price of $55 a pack and is available with or without insurance. California has inked deals with four health insurers to cover CalRx insulin on their health plan formularies, potentially making it cheaper, depending on copays. They include Anthem Blue Cross, Blue Shield of California, the Valley Health Plan for Santa Clara County employees, and the Federal Employees Health Benefits Program, according to the state Department of Health Care Access and Information.

A box of CalRx insulin.
Pharmacist Margaret On keeps two boxes of California’s new generic insulin product under the CalRx brand on hand in case of emergencies. (Angela Hart/吃瓜不打烊)

Elizabeth Landsberg, the department’s director, said the state is working to get more insurers to cover CalRx insulin and to provide it at more pharmacies. The state doesn’t know how many boxes have been dispensed. However, Landsberg said it was more meaningful that the state had reached agreements with to distribute its product in California. Currently, CalRx insulin is available on Amazon and at Costco, as well as at some retail and grocery store pharmacies including CVS, Walgreens, and Walmart.

“What we’re really trying to do is change market behavior and offer both affordable and transparent pricing,” Landsberg said. “The rebates and discounts are hard for consumers to understand and can change at any time, so we are trying to be straightforward and say, 鈥楲et’s not play this shell game anymore.’”

Allan Coukell, chief government affairs and public policy officer at Civica, said the company first partnered with the state on long-acting insulin that helps patients keep blood sugar steady for 24 hours or more. Next, it plans to help California develop rapid-acting insulin, which is used to pull elevated glucose down within minutes, to compete with brand names such as Humalog and NovoLog.

Health insurance companies welcomed the state’s efforts, in part because they could help save money they pay out on prescriptions.

“Making this drug available is really about helping people improve their health,” said Paul Markovich, CEO of Blue Shield of California’s parent company. “And the more supply we can get on the market, the more we can get rid of the profit motives in the pharmaceutical industry.”

One July afternoon in the Southern California city of Corona, Chris Noble went to a CVS pharmacy to get a box of CalRx insulin. The pharmacist didn’t have any on hand, but Noble, a healthcare organizer with Type 1 diabetes, was told he could get a prescription filled in 24 hours.

“I have insurance, but I see myself using this if I’m traveling and something happens like my insulin pump malfunctions,” he said. “Now I know I can go to a CVS and get insulin within a day.”

吃瓜不打烊 is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF鈥攁n independent source of health policy research, polling, and journalism. Learn more about .

This article first appeared on 吃瓜不打烊 and is republished here under a .

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Watch: GOP Senator Says Trump鈥檚 Tariffs Could Mean Safer Drugs 鈥� For a Price /health-industry/bill-cassidy-interview-senate-trump-tariffs-drug-prices-rfk-promises/ Fri, 24 Jul 2026 09:00:00 +0000 /?p=2263419&preview=true&preview_id=2263419 President Donald Trump’s proposed tariffs on imported generic drugs could raise some prices for patients, a key GOP lawmaker on health issues said this week. But he said that’s a potentially worthwhile trade-off to protect the nation’s drug supply.

“The national security might be something worth paying for,” Sen. Bill Cassidy of Louisiana, chairman of the Senate Health, Education, Labor, and Pensions Committee, said July 22 in an exclusive interview with 吃瓜不打烊.

The U.S., which has grappled with drug shortages in recent years, relies primarily on China to produce the active ingredients in many antibiotics, according to in JAMA Health Forum. Domestic facilities have closed or shifted to producing other drugs.

“Do we want China to have that sort of leverage for these drugs to be produced principally, maybe 99%, over there, and we don’t have access to them if tension rises between the two countries?” said Cassidy, who is a physician.

On July 21, Trump said in a that he would give generic drug companies two years to move production back to the U.S., after which he would impose 100% tariffs on imported products, rising to 200% the following year. Generic drugs make up an estimated 90% of all prescriptions filled in the U.S.

Cassidy, who has served in Congress , lost his bid for reelection in May after Trump endorsed a Republican primary challenger, Rep. Julia Letlow.

Last month, more than 16 months after his vote to confirm Robert F. Kennedy Jr. as head of the Department of Health and Human Services, on CBS News’ Face the Nation that the secretary broke promises he made to the senator, including that he would not change the federal recommendations for childhood vaccines.

Asked whether he would summon Kennedy again to discuss those promises, Cassidy said he had asked for him to appear before his committee but had not heard back about whether he would do so. Kennedy in April to discuss the Trump administration’s fiscal 2027 budget request for HHS.

Cassidy told 吃瓜不打烊 that when he agreed to vote to advance Kennedy’s nomination, he trusted that Kennedy would keep his word about not disparaging vaccines.

“If they agree to guardrails and disregard those guardrails, you can judge me,” Cassidy said. “You may decide my judgment wasn’t very good, but I don’t think you can say I acted in bad faith.”

Regardless, Cassidy added, Kennedy was going to exert influence in the administration, and he thought it would be better for Kennedy to be in an official post, where his work would be subject to oversight.

“I’m pretty sure that RFK was going to have the president’s ear whether he was in office or not,” he said.

While Kennedy’s efforts to roll back federal vaccine recommendations are being blocked by courts, this week reported that the number of measles cases confirmed in the U.S. so far in 2026 has exceeded the total for 2025 鈥� making it the highest number of cases in 35 years.

Cassidy, a principal author of the 2020 No Surprises Act targeting surprise medical bills, also said he doesn’t think Congress needs to make modifications to the law in the wake of reports that doctors and other healthcare providers are winning huge payouts under the arbitration system the law created. The No Surprises Act was intended to shield patients from receiving big bills for receiving medical care they didn’t know was outside their health plan’s network.

An analysis by this week found that providers were awarded nearly $15 billion in disputed claims in 2025, more than triple the 2024 figure of $4.08 billion.

“The initial step to make sure that people are getting their best deal is price transparency,” Cassidy said.

The HELP Committee on July 22 overwhelmingly approved advancing the Patients Deserve Price Tags Act, a bipartisan bill that would further expand the requirements that hospitals, insurers, and other healthcare providers make prices public and available to patients and employers. A House committee advanced a similar bill this week, also with bipartisan support, but it remains unclear whether either measure will be approved by the full House and Senate.

The interview 鈥� in which Cassidy also discussed his 鈥� was part of the “How Would You Fix It?” series featuring Julie Rovner, 吃瓜不打烊’ chief Washington correspondent and host of the What the Health? podcast.

An abbreviated version of this interview aired July 23 in Episode 456 of What the Health? From 吃瓜不打烊: “A Shrinking Safety Net.”

吃瓜不打烊 is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF鈥攁n independent source of health policy research, polling, and journalism. Learn more about .

This article first appeared on 吃瓜不打烊 and is republished here under a .

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