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Help Bring MS Medications Into Reach

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What can I do right now?

  • Join the MS Activist Network to prepare for future outreach to elected officials.
  • The Institute for Clinical and Economic Review (ICER) released a Draft Evidence Report assessing the comparative clinical effectiveness and value of disease-modifying therapies for RRMS and PPMS. ICER assesses the value of medications by considering price, how well a medication works compared to others, quality adjusted life years and other cost-effectiveness factors. Insurers may use ICER recommendations to develop their formularies, therefore these recommendations could potentially improve or limit access to MS medications. Learn more.
  • Write a letter to the editor of your local paper — approximately 150 to 200 words in length.  Check with your local paper for specific guidelines and submission instructions. Sample letter:
Medications are developed to help people feel better — but to be helpful, they need to be accessible. The price of treatments, and cost-sharing and approval processes should be affordable and transparent. <Describe your local and personal connection to MS>.
Visit 
nationalMSsociety.org/makemedsaccessible for more information.

Progress to Date

Affordability
Pharmaceutical Companies/Pricing
  • Ocrevus Pricing: Not only did we have a role in funding the early work and early careers of some who brought Ocrevus to market, the Society also had a role in Genentech’s decision to price Ocrevus at nearly 20% below the average price of the MS disease modifying therapies. The company cited our Make Medications Accessible recommendations as part of their consideration in determining the price, and we’ve had engaging dialogue over the past year about their opportunity to be a responsible leader and change the pricing trajectory.  
    • Sanofi Genzyme Pricing Principles: Sanofi Genzyme recently released pricing principles. These include: providing a clear rationale for the price when a product is launched; limiting annual price increases to a level at or below medical inflation (5.4% in 2017); and providing greater transparency of pricing practices including average list price and average net price. You can read our statement and follow a link to the pricing principles.
 Federal Legislation/Activity
  • FAIR Drug Pricing Act: This legislation was reintroduced in the Current Congress. The previous legislation requires accountability and transparency for price increases more than 10% in a single year. At the Public Policy Conference, MS activists expressed support for the concepts in the legislation and for adding a provision regarding a 25% increase over three years. The Society led advocacy to include this 25% over three years provision with the bill sponsors, other organizations and at the PPC. The 25% language is included in the new legislation. You can read the Society’s position statement here. The bill is sponsored by Senators Baldwin and McCain and Representative Schakowsky in the House. Here is a newspiece on the revised legislation.
  • Improving Access to Affordable Prescription Drugs Act: Sen. Franken and Rep. Schakowsky have introduced comprehensive access to medications legislation touching on transparency, access and affordability, innovation and choice and competition. We are evaluating the legislation as compared to our recommendations. 
  • We continue to have productive conversations with the House Oversight and Government Reform Committee on a hearing/investigation into price increases. 
Simple
Patient Assistance Programs
  • At least one manufacturer’s assistance program is working on multi-year support. This is a result of feedback and conversation we had with the company. 
  • We’ve had a few meetings with PhRMA to discuss the potential of a common application for patient assistance programs, using an HIV program as an example.
State Legislation
  • In 2017, the Society is supporting legislation to add consumer protections to step therapy in 11 states. It has become law in West Virginia and we anticipate it becoming law in a couple of other states. 5 step therapy bills we supported in 2016 became law. 
  • We’re also supporting legislation for patient protections in “non-medical switching” or continuity of care. 
Transparent
Federal Legislation/Activity
  • The Prescription Drug Price Transparency Act: Senator Wyden and Representative Collins introduced legislation to require greater transparency from pharmacy benefit managers (PBMs). We are evaluating the legislation.
State Legislation
  • The Society is supporting 15 bills related to transparency of coverage.
  • The Society is beginning to support legislation related to pricing transparency. 

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