Cure SMA Coverage and Payment Policy Project Continues to Move Forward

By Cure SMA | Published On March 23, 2017

Cure SMA Coverage and Payment Policy Project Continues to Move Forward

The Cure SMA Coverage and Payment Policy Project has two distinct but complementary tracks:

  • Outreach on behalf of our community. We’re working with public and private insurers, regulators, and other stakeholders, advocating for prompt, comprehensive coverage for SMA treatments and care. 
  • Outreach to our community. We’re working to provide the necessary tools and information so that individuals and families can navigate this often complex area.

While the project covers the full breadth of treatment and care for SMA, it is specifically focused on obtaining timely coverage for new treatments as they are approved by the FDA. With that in mind, many of our current activities have focused on the approval of Spinraza, both to ensure that it is broadly covered by insurance, and to set a standard and process for decisions on future treatments.

Advocacy on Behalf of Our Community

The following are some of the key activities from the first quarter of 2017.

We are sending letters to the CEOs and CMOs of all major insurance plans and companies. These letters address the Spinraza insurance policies released over the past several months, and are tailored to each individual company's decision. The goal of these letters, and any subsequent meetings, is to broaden coverage for companies that have released limited policies, and to advocate for a quick and broad decision for those companies that have not yet released policies.

We also are sending letters to all of the state Medicaid directors and state governors, urging coverage of Spinraza. Alongside of this, we developed SMA fact sheets specific to each state, to use in advocacy and education with individual states. In the coming months, these materials will also be used to help educate and mobilize grassroots advocates in many states.

Throughout March and April, we are meeting with various national organizations and government agencies that have a role in recommending, influencing, and otherwise determining coverage and payment policy, including the federal Centers for Medicare and Medicaid Services in Baltimore, Maryland. The goal of these meetings is to educate stakeholders on SMA and the availability of care and treatments, and to continue advocating for broad and timely coverage, under government-funded and commercial, private health plans.

In addition, throughout the spring, we also will be meeting with representatives from individual companies, associations, and entities that have influence over coverage and payment policies, including the state Medicaid programs and commercial insurance.

Representatives from Cure SMA are part of a working group on orphan drug pricing through the Institute for Clinical and Economic Review. ICER is hosting a policy summit in May. The summit will discuss of how we can best measure the impact and value of drugs developed for orphan diseases, using Spinraza as one of its key test cases. The goal is to leverage these value assessments for broader insurance coverage.

Practical Tools for Our Community

In addition, we also want to make sure that each individual and family has the tools necessary to advocate with their insurers. The following are some of the key activities from the first quarter of 2017 for this particular area.

We released Choice and Connection to Care: A Health Insurance Roadmap for People Living with Spinal Muscular Atrophy (SMA) and Their Caregivers. This care series booklet addresses some of the broader questions that are common in our community, including question on type of insurance, eligibility, out-of-pocket costs, nontraditional treatments, and new treatments.

We posted a toolkit on using your congressperson's office to advocate for coverage. Each congressional representative has individuals in his or her office who can help mediate for constituents who have received an insurance denial or are encountering delays in receiving a decision.

Topics: Advocacy, Front Page News

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