This committee decides whose drugs will be made affordable. The choice will be difficult.

This article was originally published in KFF Health News.

Katherine Reitzel’s treatment for multiple sclerosis costs nearly $100,000 a year. Chris Garcia is dependent on blood clotting disorder medication that costs $10,000 for three days. And Mariana Marquez Farmer said without $300 a month of insulin she would likely die within days.

Colorado’s Commission of Medical and Pharmacy Experts, which seeks to reduce the cost of expensive medicines, could help with only one of them at best.

Starting this summer, the state’s Prescription Drug Fair Price Board will select up to 18 high-priced drugs over the next three years, whether they’re out of reach, and cap how much health insurance and consumers pay. I plan to decide whether

But with hundreds of expensive drugs to choose from, board members are forced to make tough decisions about who gets help now and who has to wait.

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Will they work on very expensive drugs that only a few patients take, or will they work on very expensive drugs that are only taken by a larger population? Should we consider only the out-of-pocket costs consumers pay, such as insulin, which is capped at $50, or should we consider the total cost of drugs to the healthcare system? Will they only care about drug prices, or will they try to correct social wrongs through their choices?

And what exactly does “affordable” mean?

“This question alone is much harder to answer than it seems at face value,” said Jennifer Leck, project director for the Center for State Prescription Drug Pricing at the National Academy of Health Policy. “You can quickly see how complex our drug supply chain is, how opaque it is, how many different prices there are,” she says.

Maryland was the first state to establish a drug fair price board in 2019, but funding issues and the pandemic have slowed progress. Colorado has passed legislation to create a board in 2021 and is already ahead of Maryland in the process. Washington State will follow suit in 2022, but is still in the early stages of implementation.

Maine, New Hampshire, Ohio and Oregon also have boards, but they have no authority to limit drug payments. And at the federal level, the Controlled Inflation Act of 2022 included a provision requiring the Secretary of Health and Human Services to negotiate prices with pharmaceutical companies for a few of the most expensive drugs covered by Medicare.

It took board members in Colorado and Maryland years to come up with all the rules and regulations to govern their operations, even to the point of considering specific drugs.

“It takes a long and tortuous government process to get things up and running,” said Gerald Anderson, a professor of health policy and management at Johns Hopkins University and member of the Maryland Board of Governors. It is.” “Basically, you have to dot every ‘i’ and cross every ‘t’ to avoid being sued. ”

Setting priorities

On May 12, Colorado released the first list of hundreds of drugs to be reviewed, largely because each treatment cost more than $30,000 per course. be. Next month, we plan to release a dashboard that ranks these drugs according to board priority. You can also use this dashboard to find out which medicines are priced the most, which have the most price increases, and which states are spending the most money. This will allow the board to begin reviewing affordability this summer and set payment limits for the first four to eight drugs in 2024. But board members must first set priorities, which can change from year to year.

“Perhaps one year will focus on system impacts, another year on out-of-pocket costs, and another year on low-dose, life-saving drugs,” said the Colorado Board of Governors. ‘s director Lyra Cummings said. .

Such an approach can create conflicts between one patient group and others seeking reduced costs. But Cummings said not all groups want payment limits.

“Some people said, ‘We want the board to focus on our drugs,’ while others said, ‘Leave it alone,'” she said.

This reluctance may reflect close ties with drug manufacturers, with some patient groups being funded by them.

“We’ve seen cases in public hearings where patient groups are against payment caps instead of being happy that they might be able to get medicine at a lower price. Is that counterintuitive? , seems surprising,” Lek said. “But most of the time, the financial ties to pharmaceutical companies are clear.”

I can’t just sit down and stop this medicine because the bleeding has gotten so bad.

– Chris Garcia relies on drugs costing $10,000 for 3 days

Maryland is also consulting with patient advocacy groups in finalizing its regulations.

“So far there has never been a ‘pick me!'” Pick me! choose me! ‘ said Anderson. But that could change when Maryland’s board of directors begins its affordability review this fall.

The drugs Garcia, 47, of Denver, was taking were not on the board’s list. Diagnosed with four bleeding disorders, including von Willebrand’s disease, he needs a drug called Humate P, made by CSL Behring, to replace one of the missing clotting factors in his blood. . This winter, Garcia was driving home from work at the airport when he hit a block of black ice, spun, and crashed into a concrete fence at 125 mph. He needed an expensive drug every day for the first five days after the accident, then every other day for a full month.

“I can’t just sit down and turn down this drug because I’m bleeding so badly,” he said.

About 300 to 400 people in Colorado are being treated for von Willebrand disease, according to Perry Jowsey, executive director of the National Hemophilia Foundation Colorado Chapter. That’s far fewer than the roughly 10,000 Colorados with MS and the 74,000 who manage their diabetes with insulin.

“In my position, my goal would be to help the most people,” Garcia said. “You have to find a balance, especially in the beginning. You won’t be able to help everyone.”

Commissions in Colorado and Maryland will rely on data from state databases showing how much various public and private health insurance plans pay for drugs. But the data doesn’t capture how much uninsured patients pay, nor does it give any insight into how much manufacturers are paying for research and development.

“The goal is not to stifle innovation,” Anderson said. “However, public data is not available, so we have to ask the pharmaceutical industry, but they are not required to provide the data.”

The committee wants to ensure that patients like Reitzel continue to have access to new and better treatments. Reitzel, 38, of Highlands Ranch, was diagnosed with multiple sclerosis in 2008 and has switched medications multiple times, trying to tolerate the side effects. “They’re all terrible in their own special way,” she said.

In 2021, she began taking a relatively new drug, Vumeriti, from Biogen and Alkermes, which was on Colorado’s eligible drug list. But her three months’ worth, including her over $7,000 out-of-pocket expense, cost her nearly $24,000. Biogen provides up to $20,000 annual out-of-pocket assistance through a debit card that she can use at pharmacies. However, her health insurance no longer counts these payments as deductibles. That makes it nearly impossible to meet her $25,000 out-of-pocket limit under her plan.

“Mainly for this reason, I am no longer on medication,” Reitzel said. “I just hope the disease doesn’t progress.”

Colorado’s legislature passed a bill that would require health care plans to count co-pay assistance programs in patient deductions for medicines that don’t have generic equivalents, but the provision won’t go into effect until 2025.

Mariana Marquez Farmer of Colorado Springs, Colorado, married for her husband’s health insurance during the pandemic. Because she had type 1 diabetes and didn’t have her insurance, she couldn’t afford the out-of-pocket for her life-saving insulin. (Ashley Joyce photo)

Is your insulin abnormal?

Just a few years ago, insulin might have been a high priority for the Drug Pricing Commission, but now it’s less clear. Both Colorado and Maryland have insulin out-of-pocket limits that reduce the burden on pocketbooks, at least for patients with insurance. And manufacturers are making their own moves to bring down the price of insulin. This could cause boards to shun insulin and focus their limited resources on other high-priced drugs.

Out-of-pocket caps don’t lower the actual cost of insulin, but rather spread the cost among health insurance policyholders through higher premiums. Colorado’s out-of-pocket cap didn’t help new residents, nor did it help those who didn’t initially have insurance. Marquez Farmer, who moved to Colorado Springs from California a few years ago, would have had both of these hurdles.

“I married my husband because of Covid-19 because I didn’t have insurance,” she said. “I loved him and everything was fine, but a big reason I married him was because I couldn’t afford insulin.”

Marquez Farmer, 34, says insulin may not be the most expensive drug on the market, but many Colorados, especially those from marginalized communities with high rates of diabetes, struggle to afford it. He said he does.

“I’m not saying other drugs aren’t important, they’re obviously important,” she said. “The reality is that more people are being affected by the inability to buy insulin, and more people are dying because of insulin rations.”

Maryland Board of Governors Executive Director Andrew York said payment limits should be considered a last resort and are a tool that can be used when other cost control measures have failed.

“The goal is to never say people can’t afford insulin. And we might get there soon because of how much is going on in that space.” I don’t think so,” he said. “If so, the board may not need to use the payout limit tool.”

Colorado’s drug list for review included at least one insulin, but not the most commonly taken brand-name insulin. This prevents the Colorado Board from addressing insulin costs more broadly.

The pharmaceutical industry has rebelled against the concept of payment limits, warning that pharmaceutical companies may withdraw from states with payment limits.

“The board is acutely aware of the issues in this debate. The interest and purpose of these committees is to increase drug access, not reduce it,” Yorke said. “But there is an element of game theory about how manufacturers will react.”

Reck dismissed the notion that payment limits would encourage manufacturers to abandon lucrative markets.

“Unfortunately, this is kind of a scary message and it can affect patients,” she says.

KFF Health News, a national news agency producing in-depth journalism on health issues, is one of the KFF’s core operating programs and an independent source of health policy research, polls and journalism. is. Learn more about KFF here.

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