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 concern to the SMA community is the President’s proposed deep cuts to Medicaid and Children’s Health Insurance Program (CHIP), which provide health insurance coverage to millions of Americans, including many with SMA and other similar conditions. In addition, the President also has proposed eliminating all the funding for the Health Resources and Services Administration (HRSA) Heritable Disorders Program, which supports the Secretary’s Advisory Committee on Heritable Disorders in Newborns and Children (ACHDNC). The ACHDNC is the federal body that reviews and adds conditions to the Recommended Uniform Screening Panel (RUSP). Just recently, we shared with you the wonderful news that ACHDNC accepted SMA into the review process for the RUSP.
The budget also reduces funding for the Centers for Disease Control and Prevention’s (CDC) program that supports states in their efforts to implement newborn screening, particularly initiatives that focus on the roll-out of new conditions as they are added to the RUSP.
It is important to note that the President’s budget does not have the force of law. A presidential budget is a proposal — a suggestion to Congress, which conveys the Administration’s vision, priorities, and recommendations with respect to the activities and functions of the Executive Branch.
While the President’s entire budget will not be adopted by the Congress, often individual items and suggestions from the President are supported by Congress and enacted. As such, the SMA community must pay close attention to these developments and ensure our voices are heard throughout the process.
Since January, our community has been communicating directly with Members of Congress about the funding levels needed to support important efforts, such as newborn screening programs at HRSA and CDC. On Friday, Cure SMA submitted testimony on behalf of our community to members of the Senate appropriations subcommittee which oversees funding for these programs (testimony available here) and similar testimony was submitted to members of the House of Representatives in March (testimony available here).
Recently we updated our community on the proposed cuts to Medicaid contained in the American Health Care Act (AHCA) and families weighed in with their elected officials with their concerns. It is critically important that our community continue to participate and be engaged in the months ahead as the Congress begins to consider funding levels for the coming Fiscal Year.
Cure SMA will continue to reach out to individual Members of Congress and also work in coalition with like-minded organizations to call on Congress to provide sufficient funding for HRSA, CDC, as well as to ensure ongoing access to health care for individuals and families affected by SMA.
American Health Care Act (AHCA) Budget “Score” Released May 24th
On Wednesday, May 24th, the Congressional Budget Office (CBO) released its long-awaited report estimating the costs and impact of the House-passed American Health Care Act (AHCA) legislation. If enacted into law, the CBO estimates an additional 23 million more people would be uninsured over the next decade. Following the release of the CBO report, Senate Republican staffers are said to have started work on their version of a bill to repeal and replace the Affordable Care Act (see previous update here). Cure SMA will continue to monitor these issues and will provide updates to our community on opportunities to engage to ensure that the voices of SMA patients and families are heard.