National MS Society Calls on Leaders to Lower Prices and Improve Access to MS Medications

National MS Society Calls on Leaders to Lower Prices and Improve Access to MS Medications

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.

Abigail Bostwick
Abigail Bostwick pays $5,600 per month for her MS medication, and the out-of-pocket costs drain her family’s budget. (Courtesy of National MS Society)

“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.

2 comments

  1. Philip Posner says:

    MS patients will continue to suffer as insurers and drug companies fight over the high prices of the drugs that permit MS patients to function.
    The disease modifying drug I have used since 1999 (Avonex) has had its co-pay raised from $30 to $100 by my insurer CVS/Caremark. In January 2017 my insurer has announced that it will remove Avonex from its formulary in order to improve their share holders profits. This means that I can only obtain this life saving drug if I can afford to pay $5,000-$6,000 per injection.

    CVS Health’s statement to their stockholders and clients reads:
    “CVS Health is taking a stand against egregious drug price increases that unnecessarily add costs for clients and their members

    The cost of Avonex has gone from $8,292 per year when it was first approved to $79,911 per year now.

    Similar increases have occurred with all MS disease modifying drugs as well as many other therapies needed for cancer, hepatitis and as has been in the headlines recently epipens.

    The patient is caught in the middle and suffering egregious health and financial loss.

  2. Harry Crawford says:

    This is definitely a growing problem with,in my opinion, no cure in site. The FDA is the pharmaceutical companies ally allowing costs and availability to be very hard to deal with. The drugs that are being discovered with high positive efficacy are being slowly moved through the approval process and the costs are unlimited. Hmmm wonder where the limitations are more needed. Stem cell procedures,although not right for everyone, could nearly cure the disease with no further medication needs. Several other countries are using it with unbelievable results yet the FDA won’t recognize it. I believe it’s due to the huge amount of loss to the pharmaceutical companies pockets that the FDA keeps shrugging this process. Imagine, no more medicine ever needed to treat the MS after the stem cell procedure. No more needles no more side effects and more importantly no more increase in disabilty. Oh wait, these aren’t important to the FDA. The mighty dollar runs our path of treatment, absolutey ridiculous.

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