The National Multiple Sclerosis Society has launched an initiative, called Make MS Medications Accessible, calling for change in the pricing of multiple sclerosis (MS) medications in the U.S., which the group said need to be more affordable, and ways of acquiring them more simple and transparent.
The initiative asks leaders of all involved parties involved – from pharmaceuticals to insurance providers, policymakers to pharmacy benefit managers and MS patients themselves – to work together and focus on lowering the costs of MS medications, to give patients the conditions they need to have a stable quality of life.
In 2004, the National MS Society reported, the average annual cost of MS medications was $16,000. Today, it is about $78,000 — an increase of nearly 400% that puts a considerable burden on patients and their families.
A case in point, the Society said, is Abigail Bostwick, 36, who was diagnosed with MS in 2013.
“Our savings quickly drained. We’ve sold a lot of our things. We live paycheck to paycheck,” Bostwick said in a press release. Like many other MS patients, she struggles to afford her medications and to navigate the complicated U.S. system of prescription medication insurance coverage.
“It is time for change,” said Cyndi Zagieboylo, the National MS Society’s president and chief executive officer. “People with chronic illnesses need to have confidence that they’ll be able to get the life-changing medication they need.”
MS patients report that medicine prices are escalating fast and aggressively, raising out-of-pockets costs with them, that formularies – or lists of medications covered by an insurance plan – are confusing and inconsistent, and that medicine coverage approval processes are complex and make access to necessary treatments difficult.
Because these challenges can delay starting or changing a medication, they can also be a cause of relapses or risk accelerating disease progression, and a cause of additional stress and anxiety – further burdening people dealing with a complex and unpredictable disease, the Society said.
It is encouraging the MS community to get involved and contact their representatives in governments or candidates running for public office, and ask them to support better access to medications. As the Society notes, medications can only change lives if they’re available to those who need them, and should be affordable, with access that is simple and transparent.
“No single stakeholder has all the solutions,” Zagieboylo said, “we can only find the solutions together.”
More personal stories and a full list of the MS Society’s recommendations are available on its campaign webpage.