Last week, the President signed the FY19 Labor Health and Human Services funding bill which included nearly all provisions advocated by this community early in the year.

Your calls, your emails, your face to face meetings have paid off considerably!

Next year’s funding bill includes a large overall spending increase in funding for research at the National Institutes of Health (NIH) as well as report language for programs directly impacting Duchenne at various agencies that matter most to us.

A summary of the directives agencies have been given for next year:

• Asks Congress to maintain level funding of $6 million for Center for Disease Control’s Muscular Dystrophy Program.
• Directs the CDC to support the advance of Duchenne newborn screening, continue supporting the dissemination of Duchenne care standards, to leverage the new ICD-10 code to expand surveillance of Duchenne and Becker.
• Requests NIH to demonstrate its stated commitment to improved research data-sharing and to work with other agencies to create a plan to address development challenges of gene therapies.
• Encourages the FDA to continue implementing policies to promote access to information about how patient experience data is used within reviews of newly approved products and asks FDA to consider ways to include patient experience information in relevant product labeling to inform patient and provider decisions and insurer coverage determinations.
• Requests that the Social Security Administration (SSA) make available data on the rate at which persons with Duchenne and Becker utilize SSA programs.
• Seeks a report from CMS (Medicare and Medicaid) on the use of the newly established ICD-10 code, as compared to the former broader code.

Your voice has once again made an impact! Thank you to everyone who reached out to their members of Congress.

We must continue advocating for the federal government’s focus and funding on Duchenne programs and priorities.

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