We are excited to announce that The MSA Coalition has launched a new Advocacy Committee! While The MSA Coalition has been advocating for the MSA community in a variety of ways for many years, this new committee will focus specifically on developing and implementing an annual advocacy agenda that will advance the Coalition’s mission through public policy, advocacy, and community initiatives. For example, the committee plans to educate members of Congress and other governmental officials about the needs of the MSA community to obtain more rapid access to federal benefits such as Social Security Disability and Medicare.
One of the current projects of the Advocacy Committee is our participation in the Neuroscience Working Table which is composed of patient groups, manufacturers, providers, and researchers with a common interest in advancing legislative reforms to foster development in neuroscience research and treatment. We are delighted to have a “seat at the table” for this national effort, along with organizations such as Cure PSP, the Michael J. Fox Foundation, the American Brain Coalition, I AM ALS, and the American Academy of Neurology.
Did you know that Central Nervous System drugs take 20 percent longer to develop and approve than other drugs? The Government Accountability Office has reported that in recent years, FDA reviewers of new drug applications for neurological diseases denied more requests for breakthrough therapy designation (and granted fewer), compared to other disease areas. The Working Table is currently advocating for legislation to create a Neuroscience Center of Excellence (NCOE) within the FDA that would, among other things, place a stronger emphasis on drug development tools for neurological treatment and cures, and increase patient-focused drug development for these diseases. Put simply, the goal of an NCOE would be to accelerate the development of neurological treatment and cures.
On December 16, 2021, Senators Collins and Lujan introduced a bill to create an NCOE at the FDA (S. 3427, “the Neuroscience Center of Excellence Act of 2021”) and The MSA Coalition has signed on to several letters from the Working Table to Members of Congress supporting the legislation. More information about the Working Table can be found at its website: https://neuroscienceworkingtable.org/.
If you have any questions about our advocacy work or if you have any government contacts at the federal or state level that could help open doors for us to advocate for the MSA community, please reach out to Patricia Libby Thvedt, Chair of the Advocacy Committee, at firstname.lastname@example.org. We look forward to keeping you updated on our advocacy work during 2022 and beyond.