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Recommendations on Access to MS Medications

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In this article
Recommendations were developed by the Society's Advisory Committee on Access to MS Medications and informed by extensive stakeholder engagement and feedback, including a quick, web-based survey in October 2015. The survey allowed the Society to gain the perspectives of more than 8,500 people with MS.

The recommendations are comprehensive, address the challenges across many stakeholders, and provide the basis for conversations to create change.

While some of these recommendations require action by policy makers, many could be achieved by one or more parties coming together to create change and improve access to life-changing medications for people with MS.

Affordable

Innovation in MS has changed the lives of many people with relapsing MS and innovation must continue to change lives. But people need to be able to get treatments in a timely and affordable way to benefit from them.
  • Limit price increases for medications that have been on the market for a considerable time
  • All available medications for a particular disease must not be on a specialty tier with co-insurance
  • Limit total out-of-pocket costs for prescription medications in Medicare

Simple

Getting your medication shouldn’t feel like a full-time job. Living with MS is already difficult for individuals who often experience debilitating fatigue and cognitive challenges.
  • Prior authorization should happen before the person with MS leaves the healthcare provider’s office
  • Step therapy should make sense, and not result in detrimental delays accessing appropriate medications. Individuals should not be required to fail on similar mechanisms of action, similar routes of administration or a medication they have failed previously
  • Develop a uniform patient assistance application for patient assistance/co-pay programs across the manufacturer and non-profit programs

Transparent

People with MS need more information to make informed choices; and we all need greater information to improve the system.
  • Formulary coverage, including cost-sharing, must be easily accessible, understandable and searchable (if online) when people with MS are choosing a plan
  • Greater understanding and transparency of the varying prices across the system and internationally

Read our full recommendations here.


Advisory Committee on Access to MS Medications

The Society’s Advisory Committee on Access to MS Medications launched and met from 2015-2016 and is comprised of people with MS, family members, health policy experts and healthcare providers.
Co-Leads
Elizabeth Page
Bari Talente
 
Members
Craig Acomb
Howard S. Baron, Jr.
Dennis Bourdette, MD
Timothy Coetzee, PhD
Kathleen Costello, MS, ANP-BC
Sherri Giger
Dina Glassman
Yolanda Harris, MSN, CRNP, CPNP-AC
Weyman T. Johnson
David E. Jones, MD
Eugene May, MD
Graham McReynolds
Steve Nissen
Robert Seehausen
Brandt Wilkins
Cyndi Zagieboylo

View Committee biographies here.

Additional reading

The cost of multiple sclerosis drugs in the US and the pharmaceutical industry: too big to fail?  
Neurology examines the pricing trajectories in the United States of disease-modifying therapies (DMT) for MS over the last 20 years and assess the influences on rising prices.

Estimated annual prices of MS DMTs (.pdf)
Daniel Hartung, PharmD, MPH of Oregon Health & Science University tracks the rising prices of MS DMTs from the introduction of the first DMT in 1993 to August 2019.

Prescription Drug Costs Driven by Manufacturer Price Hikes, Not Innovation 

Qualitative study on the price of drugs for multiple sclerosis  
Neurology examines pricing decisions, justifications and attitudes among current and former biotech industry executives for companies that manufacture MS DMTs. 

Trends in prices, market share, and spending on self-administered DMTs for MS in Medicare Part D
JAMA Neurology examines trends on self-administered DMTs for MS in Medicare Part D from 2006-2016.

Medicare Beneficiaries Face Growing Out-of-Pocket Burden for Specialty Drugs While in Catastrophic Coverage Phase
Health Affairs analyzed trends in total and out-of-pocket spending among Medicare beneficiaries who take at least one high-cost specialty drug from the top eight specialty drug classes in terms of spending, using 2008-2012 pharmacy claims data from a 20 percent sample of Medicare beneficiaries.

Medicare Part D in 2016 and Trends over Time
The Henry J. Kaiser Family Foundation presents findings on the 2016 Medicare Part D marketplace and trends since 2006. Since 2006, Medicare beneficiaries have had access to prescription drug coverage offered by private plans, either stand-alone prescription drug plans (PDPs) or Medicare Advantage drug plans (MA-PD plans).

The Complex Math Behind Spiraling Prescription Drug Pricing
Katie Thomas of The New York Times uncovers the controversy over drug pricing, how much drugs cost, and what that means for patients.

Health insurance affects the use of disease-modifying therapy in MS
Neurology evaluates the association between health insurance coverage and DMT use for MS. Insurance coverage affects DMT use for persons with MS, and use of free/discounted drug programs is substantial and makes economic analysis that ignores these supplements potentially inaccurate.

As a 501(c)(3) nonprofit organization, the National MS Society does not participate or intervene in any political campaigns for public office, endorse or oppose political candidates, publish or distribute statements relating to a political campaign, or donate money or time to political campaigns. Nothing contained on this webpage or communications should be interpreted to be an endorsement or participation by the Society in a political campaign.

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