Burden on Patients: 5 Questions on access to multiple sclerosis medicines in health exchange plans

We asked Bari Talente, executive vice president, advocacy, at the National Multiple Sclerosis (MS) Society, to answer a few questions.

Allyson Funk
Allyson FunkDecember 4, 2015

Burden on Patients: 5 Questions on access to multiple sclerosis medicines in health exchange plans.

Patients, especially those suffering from chronic conditions, deserve access to the medicines they need to live longer, healthier lives. Today, PhRMA released a new fact sheet on access to multiple sclerosis medicines in exchange plans in 2015 (2014 fact sheet is available here). The fact sheet highlights some of the potential barriers to accessing needed treatments. Learn more on AccessBetterCoverage.org, in our patient profiles and our other fact sheets.

This is the latest post in our Burden on Patients Q&A series with patient advocates. To learn more, we asked Bari Talente, executive vice president, advocacy, at the National Multiple Sclerosis (MS) Society, to answer a few questions. 


Question:  What is The MS Society and who do you represent?

Answer: The National MS Society mobilizes people and resources so that everyone affected by MS can live their best lives as we stop MS in its tracks, restore function that has been lost and end MS forever. To fulfill this mission, the Society funds cutting-edge research, drives change through advocacy, facilitates professional education, collaborates with MS organizations around the world and provides programs and services designed to help people with MS and their families move their lives forward.  In 2014 alone, the Society devoted $122.2 million to help more than one million individuals connect to the people, information and resources they needed through a comprehensive network of programs and services. The Society also invested $50.2 million to support more than 380 new and ongoing research projects around the world. The Society is dedicated to achieving a world free of MS. Learn more at nationalMSsociety.org.

Q: How do medicines help patients manage and treat MS?

A: People with MS use medications to modify the disease course, treat relapses — also called attacks or exacerbations — and manage symptoms. More than twelve disease-modifying medications have been approved by the U.S. Food and Drug Administration (FDA) to treat relapsing forms of MS. These medications reduce the frequency and severity of relapses, reduce the accumulation of lesions in the brain and spinal cord and may slow the accumulation of disability for many people with MS. There are no medications approved to treat primary-progressive MS.

Along with other essential components of comprehensive MS care, these medications help people manage their MS and enhance their comfort and quality of life. 

Q: The Affordable Care Act (ACA) expanded health insurance coverage to a broader population. What are you hearing about coverage in health insurance exchanges, in particular access to MS medicines?

A: The ACA’s prohibition against discriminating for having a pre-existing condition has been particularly helpful for people with MS. However, we are concerned about the design of formularies and the adequacy of insurance provider networks. As the law has been implemented, including the choice of benchmark plans, the trends toward higher deductibles, higher cost-sharing and narrow networks have accelerated through all health insurance plans. Most plans limit the number of MS medications on a formulary and plans on the exchanges reflect significantly increasing co-insurance, so people with MS may have trouble affording the monthly cost of their medication at 30 percent or even 40 percent of the cost of the medications.

Q: What are the biggest concerns facing patients with MS in health exchanges?

A: People with relapsing remitting MS are fortunate to have a number of disease modifying therapies available. The choice of which medication is best for an individual should be between an individual and their healthcare provider. Yet, there are numerous barriers that prevent optimal treatment choice- including the significant co-insurance payments, a limited number of medications included on a formulary, prior authorization and step therapy requirements. We also see limits on other medically necessary benefits for people with MS, like physical, occupational and speech/language therapies.

It’s important for people to choose the plan that offers the best coverage for their medication and other needs, yet this information may not be known when an individual has to make their choice. More transparency, the ability to directly compare plans and plain language are needed so people can make fully informed choices.

Q: Is there anything else we missed?

A: People need affordable access to the medication that is most likely to produce the best outcome, support adherence and maintain quality of life. Since each person with MS may respond differently to the MS disease modifying therapies, the full range of options should be available so the individual and healthcare provider can make the best treatment decision. The Society believes that both innovation and affordable access are critical to ensure people receive the medication and treatments they need. Conversations must include both innovation and affordable access, rather than believing one comes at the expense of the other. All stakeholders- patients, healthcare providers, insurers, pharmaceutical manufacturers and others- must work together and share responsibility for ensuring people have affordable access to the therapies they need to live their best lives.

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