For 20 years, Deborah Long (pictured) has been relying on powerful drugs to keep her multiple sclerosis in check. Her out-of-pocket costs were pretty reasonable until two years ago, she says, when she had to switch insurance companies. Her new insurer made her switch to a different drug, Copaxone. When she tried to fill the prescription, the Walgreen’s pharmacist told her the monthly copay would be a whopping $2,500—well out of reach for Long, 65, a former administrative assistant in Chicopee, MA, who no longer works and is on disability.
She didn’t fill the prescription. After going without medicine for four months, Long finally found an assistance program run by a nonprofit that is covering her copays for now. She must re-apply every year, with no guarantees. Fighting for access to her medication has been stressful and exhausting, says Long. “I want someone to fight and give me a break, so I don’t have to keep fighting for it,” she says.
Even though the high price of drugs has been a major concern across the American economic and political landscape for years, only a few patient advocacy groups have recently started taking action on drug costs. It’s a significant move for these organizations. Most are partly funded by the pharmaceutical industry, making it difficult for them to speak out on this issue. And they have traditionally focused more on funding basic research and drug development, as well as advocating for regulatory approval of new treatments.
The R&D funding and advocacy work are paying off; many new drugs have come to market in recent years for a range of diseases. But patient groups are realizing the new drugs are often too expensive, and competition from the new products isn’t necessarily lowering the price of older drugs.
Take multiple sclerosis (MS), for example: there are now more than a dozen drugs available, 10 of which the FDA approved just in the last decade. Prices for almost all these drugs, including warhorses like Biogen’s Avonex and Bayer’s Betaseron approved in the 1990s, have continued to escalate at rates much higher than inflation (see chart below of MS drug prices).
The message from patients about this mounting “financial toxicity” is getting through. “One of the most frequent questions I was getting was, ‘How come this medication I’ve been on is so much more expensive?’” says Bari Talente, executive vice president for advocacy at the National Multiple Sclerosis Society (NMSS).
Rising List Prices of MS Drugs
In 2016, after hearing from MS patients who were skipping doses and not paying other bills because of their expensive drugs, the NMSS became the first patient group to take a public position on high drug prices: “Medications and the process for getting them must be affordable, simple and transparent.” The society also issued recommendations to drug makers, insurers and policymakers for easing the financial burden on patients.
The Leukemia and Lymphoma Society and the National Health Council followed with their own recommendations in 2017 for curbing healthcare costs for patients. Other groups have opted for different strategies: lobbying for legislation, having private discussions with insurance and drug companies, and engaging with groups that assess the value of drugs such as the Institute for Clinical and Economic Review (ICER).
It’s still too early to assess the impact of these actions, says Kim McCleary, managing director of FasterCures, a biomedical R&D think tank. For one thing, talking to insurance companies is relatively new territory for patient groups. “It’s just another whole different series of competencies to have to master,” says McCleary, whose organization has been trying to facilitate conversations between patient groups and insurers.
Most patient organizations, though, have remained quiet on rising drug costs. Some say it’s not part of their mission. They want to stick to funding R&D and helping support patients by steering them to clinical trials, for example. “We can’t take a position on drug pricing,” says Lynn O’Connor Vos, president and CEO of the Muscular Dystrophy Association, which takes funding from drug makers but relies mostly on non-life science companies including Harley Davidson and Citgo. “It’s not our place.”
Whatever their stated reasons for remaining neutral or silent, most advocates won’t speak out for fear of losing funding from the drug industry, says David Mitchell, a multiple myeloma patient who founded the nonprofit Patients for Affordable Drugs last year to push for lower drug prices. “On the issue of drug prices, they won’t speak,” says Mitchell. A 2017 report from the New England Journal of Medicine concluded that more than 80 percent of the largest US-based patient advocacy groups took money from biopharma and device companies. And a survey of patient groups published in JAMA Internal Medicine last year revealed that 12 percent receive more than half of their funding from industry. (Mitchell’s group is funded by private foundations and his own money and does not take money from pharma or healthcare companies.)
The few groups that have come out publicly against high healthcare costs felt it was imperative. “To advocate and be the voice of patients, there wasn’t really a choice but to talk about the financial struggles of patients,” says Gwen Nichols, chief medical officer of the Leukemia and Lymphoma Society (LLS) (the LLS says it is not influenced by its pharma funders).
Tackling high drug costs is complicated. Patient groups first started by reaching out to insurance companies, to try to help them make more patient-centric coverage decisions. They soon realized how difficult it was to navigate the vast patchwork of different private insurers. The task was especially tough for smaller patient groups, says McCleary. “There wasn’t an easy interface,” says McCleary. “There’s no centralized entry point like with the FDA. It was a huge issue of scale.”
About four years ago, patient groups found an easier way into the problem. That was when … Next Page »