Yesterday, members of the Senate released draft text of their much awaited legislation called the Better Care Reconciliation Act (“Better Care Act”) of 2017. As you’ll recall from previous updates (links here and here), the Senate has been working to put together its own legislation to modify key parts of the Patient Protection and Affordable […]

The US Senate is currently working on legislation to modify the Affordable Care Act. Though details of the Senate’s plan are not yet available, legislation could be released as early as Thursday or Friday of this week. As Senators consider various options it is important that they keep in mind the needs of people such

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 runs from October 1, 2017 through September 30, 2018. Of serious

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 symptoms before 21 months of age; the previous policy’s criteria for treatment of onset symptoms was 6 months or younger. In 2016,