ACTION ALERT: Urge your Senators to Support the FY 2019 Duchenne Appropriations Request

Action Alert

 

Now that the House letter has closed. It is time to move onto the Senate.

Please urge your Senators to sign the FY19 Duchenne funding letter which is now circulating.  

Help ensure the agencies that impact Duchenne receive the funding they need to concentrate on the needs of our community!

Recipients

  • Your Senators

Contact

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Message

Sign the FY 19 Duchenne MD Appropriations Letter

Dear [Decision Maker],

Help End Duchenne Muscular Dystrophy - Please sign the FY 19 Duchenne MD Appropriations Letter

Senate Deadline to Sign: April 10, 2018

Sixteen years ago, the focus and funding for Duchenne research and care were nearly nonexistent. However, in 2001 Congress enacted the Muscular Dystrophy Community Assistance, Research and Education or MD-CARE Act, which dramatically transformed efforts to combat Duchenne and other forms of Muscular Dystrophy. As a result of this Act and subsequent amendments, federal commitments to research expanded, helping spur scientific breakthroughs to develop potential therapies. These commitments have also leveraged significant non-federal funding from academic institutions, industry and venture investors in a true public-private partnership model. In addition to research breakthroughs, the MD CARE Act has helped capture important epidemiological data, information that has helped standardize patient care.



The Fiscal Year 2019 Duchenne MD appropriations request contains language and provisions to help continue and strengthen these and other ongoing initiatives. Including a request to:

- Maintain level funding of $6 million for CDC's Muscular Dystrophy Program. This includes funding to expand the surveillance of Duchenne/Becker via the MD STAR-net program.

- Directs the CDC to support the advancement of Duchenne newborn screening, continue supporting the dissemination of Duchenne care standards, to leverage the new ICD-10 code to expand the surveillance of Duchenne and Becker.

- Requests the NIH to demonstrate its 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 people with Duchenne/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.

We strongly urge you to sign onto the request.

To sign the Senate letter:
Please contact Samantha Helton in Sen. Wicker's office (4-6253) or Lorenzo Rubalcava in Sen. Stabenow's office (4-4822). The deadline to sign is April 10th.

Thank you for your ongoing support of our community and rare disease communities like ours.

Sincerely,
[Your Name]
[Your Address]
[City, State ZIP]
[Your Email]