Katherine Reitzel’s multiple sclerosis drug costs about $100,000 a year. Chris Garcia relies on a drug for a blood clotting disorder that costs $10,000 for a three-day supply. And Mariana Marquez-Farmer would die within days without her monthly $300 vial of insulin.
At most, a Colorado panel of medical and pharmacy experts seeking to cut the cost of expensive drugs will be able to help only one of them.
Beginning this summer, the state’s Prescription Drug Affordability Board will select 18 high-cost drugs for review over the next three years to determine whether the drugs are unaffordable and whether health plans and consumers should pay for them. To do.
But with hundreds of expensive drugs to choose from, board members face tough decisions about who should get help now and who will have to wait.
Do they only deal with very high cost drugs taken by a few patients, or very high cost drugs taken by a large group? Should they consider only out-of-pocket costs paid by consumers, such as for insulin, which Colorado caps at $50 per month, or the total cost of the drug to the health system? Will they simply weigh drug prices, or will they attempt to right social wrongs with their choices?
And what does “affordable” mean?
“It’s very difficult to answer that question alone,” said Jennifer Reck, project director for the National Academy for State Health Policy’s Center for State Prescription Drug Pricing. “You immediately understand how complex our drug supply chain is, how opaque it is, how many different prices there are,” she said.
Maryland was the first state to establish a Drug Affordability Board in 2019, but funding challenges and the pandemic have slowed its progress. Colorado passed a bill creating its own board in 2021 and has already overtaken Maryland in the process. Washington followed in 2022 but is still in its early stages of implementation.
Maine, New Hampshire, Ohio and Oregon have also established boards, but they do not have the power to limit drug payments. And at the federal level, the Inflation Reduction Act of 2022 included a provision requiring the Secretary of Health and Human Services to negotiate prices with drug companies for a small number of the most expensive drugs covered by Medicare.
It’s taken years for Colorado and Maryland board members to create all the rules and regulations to govern their work before the issue of looking at specific drugs came up.
“It’s just a long, annoying government process to get things up and running,” said Gerard Anderson, professor of health policy and management at Johns Hopkins University and a member of Maryland’s board. “You basically have to dot every ‘i’ and cross every ‘t’ so as not to get sued.”
On May 12, Colorado released its first list of hundreds of drugs eligible for review, mostly because each treatment costs more than $30,000. Next month, they will release a dashboard for ranking those drugs according to the board’s priorities. The dashboard can also be used to examine which drugs have the highest price tags, which have had the most price increases, and which cost the state the most. That would allow the board to begin an affordability review this summer and set payment limits for the first four to eight drugs sometime in 2024. But board members must first set their priorities, and they can change from year to year.
“Maybe one year we focus on the impact on the system, and another year we focus on out-of-pocket costs, and one year we focus on a life-saving drug that has been shown to be effective,” said Lila Cummings, director of the Colorado board. is of little use.” ,
Such approaches can pit one group of patients against others in search of cost relief. But Cummings said not all groups are willing to see payment limits.
“Some of them said, ‘We want the board to focus on our drugs,’ and others said, ‘Please leave us alone,'” she said.
This reluctance likely reflects the close ties that some patient groups have with the makers of their drugs, including receiving funding from the drug makers.
Reck said, “We have seen cases in public hearings – paradoxical or surprising as it may sound – where a patient group is thrilled to be able to access drugs at a lower cost, arguing instead against an upper payment cap. ” “But in most cases, there is a clear financial connection to the drug makers.”
Maryland has also received input from patient groups when finalizing its rules.
“So far it hasn’t been, ‘Pick me! Pick me! Pick me!'” Anderson said. But that could change after the Maryland board begins its review this fall.
The drug that Garcia, 47, of Denver, takes was not on the board’s list. Diagnosed with four bleeding disorders, including von Willebrand disease, she needed Humate-P, a drug made by CSL Behring, to replace one of the clotting factors in her blood. This winter, while driving home from his job at the airport, Garcia hit a chunk of black ice, spun out, and went into a concrete barrier at 75 mph. After the accident, he needed expensive medicine every day for the first five days and then every other day for a whole month.
“It’s not like I can just sit there and say no to this drug because my blood gets so bad,” he said.
About 300 to 400 individuals are being treated for von Willebrand disease in Colorado, according to Perry Jossi, executive director of the Colorado chapter of the National Hemophilia Foundation. That’s less than about 10,000 Coloradans with MS, or 74,000 who manage their diabetes with insulin.
“In my shoes, I would aim to help the most people possible,” Garcia said. “You have to find a balance, especially starting out. You’re not going to be able to help everyone.”
The Colorado and Maryland boards will rely on data from state databases that show how much different public and private health plans pay for drugs. However, this data does not capture how much uninsured patients pay, and it provides no information on how much manufacturers pay for research and development.
“The goal is not to stop innovation,” Anderson said. “But we can’t get any public data, so we have to ask the pharmaceutical industry, and they are not required to give us the data.”
The boards want to make sure patients like Ritzel still have access to newer and better treatments. Reitzel, 38, of Highlands Ranch, was diagnosed with multiple sclerosis in 2008 and went off drugs several times before she could tolerate the side effects. “They’re all awesome in their own special way,” she said.
In 2021, she began taking a relatively new drug from Biogen and Alkerms called Vumarity, which was on Colorado’s list of eligible drugs. But a three-month supply cost about $24,000, including a down payment of more than $7,000. Biogen offers up to $20,000 in annual copay assistance through a debit card that can be used at the pharmacy. But now her health plan doesn’t credit those payments toward her deductible. This makes it nearly impossible for her to meet the $25,000 out-of-pocket maximum under her plan.
“Mainly for this reason, I am no longer taking any medicine,” Reitzel said, “and have only to hope that my disease does not progress further.”
Colorado legislators passed a bill to require health plans to calculate copay assistance programs toward patient deductibles for drugs with no generic equivalent, but the provision won’t go into effect until 2025.
Insulin as an outlier?
A few years ago, insulin might have been a high priority for drug affordability boards, but it’s not so clear now. Colorado and Maryland have both instituted insulin copay caps that provide out-of-pocket relief for patients with minimal coverage. And manufacturers are taking their own steps to reduce insulin prices. This could prompt the board to bypass insulin and focus its limited resources on other high-cost drugs.
Copay caps do not reduce the actual cost of insulin but spread it among health plan members through higher premiums. Colorado copay caps don’t help new state residents and don’t initially help uninsured people either. Both of those constraints must have applied to Marquez-Farmer when she moved from California to Colorado Springs a few years ago.
“I married my husband during Covid because I didn’t have insurance,” she said. “I loved him, and it all worked out, but a big reason for me marrying him was that I wouldn’t be able to afford insulin.”
Ashley Joyce Photography
Marquez-Farmer, 34, said that although insulin may not be the most expensive drug on the market, many Coloradans, especially those from marginalized communities that have high rates of diabetes, struggle to afford it.
“I’m not saying other drugs aren’t important, because obviously they are,” she said. “The reality is that there are more people who are being affected by not being able to afford their insulin and many more people who are dying because of insulin being rationed.”
Andrew York, executive director of the Maryland board, said the payment cap should be viewed as a last resort, a tool that can be used when other cost control measures have not worked.
“The goal is not for people to be able to say they can’t afford their insulin. And I think with how much is happening in that space, we could get there sooner.” So if that’s the case, Perhaps the board doesn’t need to use the upper payment limit tool.”
The list of drugs eligible for Colorado’s review included at least one form of insulin, but the brand-name insulin most commonly taken was not. This prevents the Colorado board from addressing insulin costs more comprehensively.
The pharmaceutical industry has pushed back against the concept of payment limits, warning that drug makers could be forced out of states that set payment limits.
“The boards are acutely aware of this discussion point. York said, the interest and purpose of these boards is to increase access to medicines, not reduce it. “But there’s this kind of game theory element: How will manufacturers react?”
Rake rejected the notion that payment limits would induce a producer to leave a profitable market.
“Unfortunately, this is a scary message and it can have an impact on patients,” she said.
KFF Health Newsformerly known as Kaiser Health News (KHN), is a national newsroom that does in-depth journalism about health issues and is one of the main operating programs kff – Independent source for health policy research, polling and journalism.