Angry patients are pushing for new government advocates to lower drug prices

Spurred on by fed-up consumers, states are trying to curb rising prescription drug costs by setting up special public boards to investigate and control prices.

The idea is like a local utility board: a community group that sets rules or makes recommendations to ensure that what they regulate – in this case, prescription drugs – can be bought.

Some state laws have allowed these regulators to regulate drug prices for certain groups of people, such as government employees or those with Medicaid plans. Legislatures in several states — Colorado, Minnesota and Washington — have given the boards broad powers to regulate drug prices for everyone in the state.

In the past five years, 11 mostly Democratic-led states have established prescription drug price boards, and the model is spreading across the country. This year alone, lawmakers in 14 other states proposed legislation to consolidate their boards.

The roles of the boards vary from state to state, but they are often tasked with identifying drugs that may be considered unaffordable for many patients, finding ways that health plans or Medicaid programs can reduce drug use, and, in some cases, to reduce costs. the amount that insurers must pay for prescription drugs.

Andrew York, executive director of Maryland’s Prescription Drug Affordability Board, said: “Drug affordability is a very complex process, and you need experts in the field to understand how everything works. . “Each state is proposing different laws and regulations to make prescription drugs more affordable, and sometimes they’re pulling in different directions.”

But consumers haven’t seen much money. Many boards have experienced a slow process as they navigate the administrative and financial issues that come with creating a new national organization.

Boards that have made significant progress, such as the one in Colorado, have faced pressure from patient advocacy groups that the proposed regulations could harm access to alternative medicines, and from drug manufacturers, benefit managers of pharmacies and others in the drug supply chain whose profit it provides. wait for the beat.

“We’re not anti-business,” said Anthony Lourey, a former commissioner of the Minnesota Department of Human Services who now chairs Minnesota’s Prescription Drug Affordability Board. “We are looking for it [these businesses] successful, but this market is not transparent enough for people to feel they are getting a fair shake. Free market forces only really work when there is equal information on both sides of the equation. When there are many things that are not visible, a public actor is needed to bring transparency.”

About 6 in 10 American adults take at least one prescription drug, according to a poll last year from the nonprofit KFF. And most of the adults, regardless of which political party they belong to, told KFF that the government has not done enough to reduce the price of compulsory medicines.

The Maryland board has held public meetings across the state as it reviews remedies that have been shown to be ineffective. York said members have heard from struggling patients at each location.

They choose whether to pay rent or pay for their orders.

The cost of heaven

Prescription drugs in the United States, on average, cost more than double what they cost in similar high-income countries. Of the thousands of drugs that increased in price in the US from 2022-2023, the average increase was 15.2%, much higher than the rate of inflation, according to the Department of Health and Human Services. United States.

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Out-of-pocket costs vary, depending on the specific drug and the individual’s insurance. Although nearly two-thirds of people surveyed by KFF in 2023 said that buying prescription drugs is at least as easy, 3 in 10 reported that they do not take their medications as they are not ordered because of the cost. That share rose to 4 in 10 for certain groups, including young adults, Hispanic adults and low-income people.

Nine states that currently have boards are Democratic-controlled: Colorado, Maine, Massachusetts, Maryland, Minnesota, New Jersey, New York, Oregon and Washington. The other two – New Hampshire and Ohio – are controlled by Republicans.

This year, Democratic-backed state legislation on prescription drug price boards appeared in red states like Iowa and South Carolina, blue states including Connecticut and Rhode Island, and the states of Arizona and Michigan.

In Virginia, Republican Governor Glenn Youngkin vetoed legislation that passed the state Senate and House — sponsored by Democrats, although the Senate version had a Republican co-sponsor — that would have create a prescription drug price board. In his veto message, Younkin said the idea has not been proven to lower prices and could limit patient access to treatment.

How is it done?

State prescription drug price boards all share a common mission – to reduce the cost of prescription drugs to consumers – but their powers and the methods they use vary from state to state.

Some are independent, while others operate as departments within larger government agencies.

The Minnesota board, established under a law enacted last year, has more extensive powers than any state board created to date. It is one of four boards that can cover prescription drug prices, and only one of three that can influence drug prices for all consumers, not just national health plans. The nine-member commission is in the process of hiring an executive director before it begins reviewing prescription drug costs.

Maryland became the first state to create a mandated drug pricing board, in 2019. Democratic state lawmakers pushed for the legislation, which created a five-member commission appointed by the governor and state leaders. countrymen. The board got off to a slow start due to financial problems and the administrative work it took to get the new facility up and running.

But now, after several months of researching more than 1,200 drugs, the board has focused on six drugs that it is currently conducting a cost-effectiveness review.

“It’s an opportunity for the board to go deeper into certain drugs and get the information they need to understand [the drugs] they cause affordability problems,” said York.

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Four are diabetes drugs: Ozempic, Trulicity, Farxiga and Jardiance. The other two are Dupixent, used to treat asthma, and Skyrizi, which treats psoriasis, psoriatic arthritis and Crohn’s disease.

These are drugs that AARP Maryland said are “overused, overpriced, and cause extreme problems for state residents who cannot afford them.”

The average cost to commercial insurers per patient for the asthma drug Dupixent, for example, is about $32,000 a year. The board found that Dupixent’s average out-of-pocket cost for a business insured in 2022 was about $2,500.

If the board decides the drug is unaffordable, one of its options is to set how much Maryland’s Medicaid and state employee health plans will pay for the drug. That proposal would have to be approved by lawmakers.

Earlier this year, a group of Maryland lawmakers introduced a bill to expand the board’s power to limit or reduce prices for all Marylanders, not just those on the state health plan. It died in a Senate committee, amid pressure from the pharmaceutical industry.

In the meantime, there is work the board can do to help more patients afford their medications that don’t include cost gaps, York said.

“What we find in most cases is that there are tools that are already available to the patient to help them buy their drugs, but it’s all very complicated,” York said. “That’s a lot to ask of patients who don’t live and breathe drug price programs.”

The board has created an initiative to help people find potential discounts and rebates, and is working on an insulin affordability program that works with manufacturers to help patients get affordable insulin.

Pushback and litigation

In February, the Colorado board became the first in the nation to officially declare the drug illegal. The board voted unanimously to begin the process of setting a maximum payment limit for Enbrel, a popular drug used to treat rheumatoid arthritis and other conditions.

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Enbrel costs insurers about $47,000 per patient per year, according to the Colorado All Payer Claims Database. The majority of patients and caregivers surveyed by the Colorado affordability board said the cost of Enbrel made it difficult to afford the drug, and some reported having trouble affording it even with assistance. of finance. Drugmaker Amgen reported $3.65 billion in US sales of Enbrel last year.

A month after the decision, Amgen sued Colorado, arguing that the board’s actions were unconstitutional and asking the court to strike down large parts of the law that created the board.

Meanwhile, the Colorado board has continued to test drugs. Last month, it announced that the arthritis drugs Stelara and Cosentyx were discontinued.

Back in Minnesota, the Pharmaceutical Research and Manufacturers of America, the nation’s largest trade group representing pharmaceutical companies, spent about $1.3 million lobbying state lawmakers last year. while debating a state bill to create a prescription drug price board. The trade group says government price-fixing threatens the development of new drugs and that existing boards have not brought money to consumers.

“There’s going to be a challenge and there’s probably going to be a court challenge, and that’s OK,” said Lourey, of the Minnesota affordable housing board. “Countries are laboratories of innovation. When you’re designing, it’s not going to be consistent what the boundaries are. So we will learn from other countries. We’re watching, we’re reading, we’re paying attention, we’re paying attention.”

He and York both said their boards hope to keep the lines of communication open with various stakeholders, including drug benefit managers and drug manufacturers.

“In our minds, there’s no bad guy in this place,” York said. “Everyone in the supply chain is responding positively to the incentives our payment system provides.”