News

June 2, 2017

Update: President's Budget Proposes Significant Cuts to Federal Health Programs That Are Critically Important to SMA Patients and Families

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 a direct impact on the health and well-being of individuals and families affected by SMA. The federal Fiscal Year...

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Topics: Advocacy, Front Page News

June 2, 2017

Anthem Updates Insurance Policy for Spinraza

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 for treatment to onset of SMA-associated signs and...

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Topics: Advocacy, Front Page News

May 11, 2017

RUSP Nomination for SMA Accepted into Evidence Review

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 the Recommended Uniform Screening Panel (RUSP). The RUSP is a list of conditions that all newborns in the US...

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Topics: Our Impact, Advocacy, Front Page News

May 5, 2017

Update on the Passage of the AHCA

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 potential rise in health care premiums for those with pre-existing conditions; however, concerns remain about the impact...

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Topics: Advocacy, Front Page News

May 2, 2017

Cure SMA Grassroots Alert - AHCA

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 Affordable Care Act (ACA). The latest attempt, called the American Health Care Act (AHCA), could impact SMA patients’ access to health care...

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Topics: Advocacy, Front Page News

April 25, 2017

SMA Community's Voice Heard “Loud and Clear” at Last Week's Patient Focused Drug Development Meeting with the FDA

SMA Community's Voice Heard “Loud and Clear” at Last Week's Patient Focused Drug Development Meeting with the FDA

On April 18, 2017, the SMA community—families, clinicians, researchers, industry and regulators—gathered for a Patient-Focused Drug Development (PFDD) Meeting with the FDA.

As part of the reauthorization of the Prescription Drug User Fee Act (PDUFA), the FDA is required to...

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Topics: Community & Awareness, Our Impact, Advocacy, Front Page News

April 11, 2017

SMA Patient-Focused Drug Development Meeting with the FDA Set for Next Week

SMA Patient-Focused Drug Development Meeting with the FDA Set for Next Week

The SMA community is eagerly looking forward to next week’s Patient-Focused Drug Development (PFDD) Meeting with the FDA.

Over 400 members of the community are registered to participate in this event. This includes individuals and families affected by SMA, representatives from...

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Topics: Our Impact, Advocacy, Front Page News

March 23, 2017

Cure SMA Coverage and Payment Policy Project Continues to Move Forward

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...

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Topics: Advocacy, Front Page News

March 15, 2017

Know Your Resources: How Congressional Caseworkers Can Help You Obtain Insurance Coverage for New Therapies

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 work with and better understand government programs, like Medicaid, Medicare, TRICARE, and Social...

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Topics: Community & Awareness, Advocacy, Front Page News

March 1, 2017

SMA is Submitted to the Federal Newborn Recommended Uniform Screening Panel (RUSP)

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 (RUSP). Administered by the Secretary’s Advisory Committee on Heritable Disorders in Newborns and Children (SACHDNC), part of the...

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Topics: Our Impact, Advocacy, Front Page News

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