Advocacy
Update: President’s Budget Proposes Significant Cuts to Federal Health Programs That Are Critically Important to SMA Patients and Families
The President recently released his detailed budget proposal for Fiscal Year 2018, which proposed significant funding cuts to numerous federal programs, including many that have […]
Read More ›Anthem Updates Insurance Policy for Spinraza
Anthem Inc. recently announced an updated insurance policy for the use of Spinraza (nusinersen) for treatment of spinal muscular atrophy. The revised policy expands criteria […]
Read More ›RUSP Nomination for SMA Accepted into Evidence Review
The Secretary’s Advisory Committee on Heritable Disorders in Newborns and Children (SACHDNC) announced that they have accepted spinal muscular atrophy into the review process for […]
Read More ›Update on the Passage of the AHCA
Yesterday, the House of Representatives passed the American Health Care Act (AHCA). The House passed legislation included an amendment that increases funding to mitigate a […]
Read More ›Cure SMA Grassroots Alert – AHCA
After a failed attempt in March, Members of Congress are trying once again to assemble legislation to repeal key parts of the Patient Protection and […]
Read More ›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 […]
Read More ›Know Your Resources: How Congressional Caseworkers Can Help You Obtain Insurance Coverage for New Therapies
Your elected officials who represent you in Washington, D.C. have caseworkers in their regional and district offices in your communities. These caseworkers can help you […]
Read More ›SMA is Submitted to the Federal Newborn Recommended Uniform Screening Panel (RUSP)
Cure SMA and the SMA Newborn Screening Coalition are excited to announce we have completed the submission of SMA to the Recommended Uniform Screening Panel […]
Read More ›Cure SMA to Host Webinar with the FDA and Patient Advocates
Cure SMA is pleased to announce a new webinar on interactions between the FDA and the SMA community. The webinar will be held on March […]
Read More ›Registration Opens for the SMA Patient-Focused Drug Development Meeting with the FDA
Registration is now open for the SMA Patient-Focused Drug Development (PFDD) meeting with the FDA. The PFDD meeting will be held at the College Park […]
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