Multiple sclerosis affects nearly half a million people in the United States and 2.5 million worldwide.
It’s unpredictable and can be disabling, to tens of thousands of deaths each year.
Although there’s no known cure, there are multiple medications used to treat currently available on the market.
The problem is cost.
The annual price of therapy for the disease from $16,000 in 2004 to , according to the National Multiple Sclerosis Society (NMSS).
Alarmed by soaring costs, the NMSS launched an advisory committee to take a closer look.
That effort has spurred lawmakers to launch their own investigation.
Last month, Democrats in the House of Representatives said they’d why prices have increased so dramatically.
Reps. Elijah Cummings, D-Md., and Peter Welch, D-Vt., sent letters to various pharmaceutical manufacturers to request further information.
According to a representative from NMSS, this is a positive step and a sign that the organization’s hard work is starting to pay off.
However, fixing the issue will take cooperation on different fronts.
Insurance changes cause headaches
Bari Talente, the NMSS executive vice president of advocacy, told Healthline what prompted the formation of their advisory committee.
“For a number of years, we were hearing from people with MS about challenges in getting their medications. There were a lot of things happening within the health system at once that contributed to it, and one was the increasing cost of MS medications, both in medications that had been on the market for a considerable time, as well as higher prices at launch,” she said.
“You were seeing this move from a flat copayment to coinsurance, so all of a sudden people who had paid $50 for a medication now were facing anywhere between $200 and $900 a month for their medication,” Talente added.
“Recently, we’ve seen a shift to high-deductible plans, which then front-load all of these costs for people who have health challenges. So all of these things were converging at once,” she said.
Spurred by these factors, the NMSS formed the advisory committee consisting of people with MS, family members, healthcare providers, and health policy experts.
Focusing on the patient perspective
The advisory committee issued several recommendations, notably that MS medications must be affordable, and that the process for getting them must be simple and transparent.
“There’s a lot that’s in the recommendations, everything from value-based prices at launch, to limiting price increases for products that have been on the market for a long time, to greater transparency across the entire health system, to factoring in what’s called patient preference factors in formulating decision-making,” Talente said.
Another NMSS recommendation calls for removing some of the insurance-related red tape that patients often face.
“Sometimes, we see a person who failed on one medication, but as they change insurers, they’re required to try that same medication all over again,” said Talente. “They already know it doesn’t work for them. It’s delaying their ability to live well and potentially causing their disease to progress.”
Ultimately, the NMSS recommendations identify the various stakeholders involved and calls on them to come together and work toward solutions.
Lawmakers are a key stakeholder. The NMSS advisory committee pledged to work with Congress and state legislators to find a solution.
In March 2016, the committee asked Congress for an official hearing.
“We did that initial ask as part of our public policy conference,” said Talente. “It’s an advocacy day or fly-in event where we bring in between 250 and 300 MS activists from across the country to meet with their congressional offices to talk about issues that are important to them,” she explained.
“We’ve continued to meet with numerous offices and relevant committees around these issues. As Congress has become interested in issues related to drug pricing, we have been talking with them about how it’s much broader than just some of these single bad actors that were called out, and it’s really much more systemic,” Talente said.
Despite a divisive political climate, the issue of high costs for pharmaceuticals could be one that gains bipartisan support.
While House Democrats have launched the probe into MS treatment costs, then-President-elect Donald Trump in January that pharmaceutical companies were “getting away with murder” when it came to high drug costs.
“I think people have different ideas about solutions, but when we’re able to show the visual depiction of price increases, certainly it raises some eyebrows on either side of the aisle,” Talente said.
“One of the things that the committee is trying to do through the letters they’ve sent is to gather more information. We want to work with all stakeholders to find solutions, but not all stakeholders have access to the same information, so that makes it difficult to find solutions together,” she said.