Rare Across America gave FA community members the first opportunity this year to speak directly to their Members in Congress but it won’t be the last! The issues discussed there are likely to be the ones that we see throughout 2021: robust funding for the NIH & FDA, development and access to rare disease therapies, telemedicine, and newborn screening, to name a few. As we move toward the summer and a virtual Rare Disease Week, FARA will continue to stay on top of developing initiatives that could impact FA research. This advocacy newsletter, FARA’s advocacy webpage, and virtual training sessions offered by FARA, and their advocacy partners will all help you get ready for Congressional meetings in July! Join your voice to those creating change!
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Biden Administration to Increase Funding to Aging and Disability Networks
President Biden's administration announced on March 29, that through a partnership between CDC and the Administration for Community Living (ACL), the Department of Health and Human Services (HHS) will be providing $93 million in grant funding to aging and disability networks in every U.S state and territory to expand vaccination for people with disabilities and other adults. An additional $5 million will be dedicated to develop and enhance national hotlines that assist older adults and people with disabilities in registering for a vaccination and to connect with local disability and aging agencies that can provide services and supports necessary to access them. To learn more about this collaboration, please click here.
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Thank you to more than 670 rare disease advocates, including many in the FA community, who participated in meetings with their federal legislators during Rare Across America this March! There were 373 meetings with Members of Congress or their staff in 48 states plus the District of Columbia and Puerto Rico. Well done!
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RDLA, a program of the Everylife Foundation, has opened registration for Rare Disease Week. It will be virtual this year, so regardless of where you are, you can do it! Although the focus of the program is on US legislation, individuals outside of the US who are interested in participating can sign up for most of the events. The one exception - legislative meetings will only be available for those living in the United States.
This is a great opportunity to learn about pending US legislation impacting rare disease, gain some advocacy training and, if US based, speak directly to your Members of Congress &/or their staff. Still on the fence? Maybe this top ten list will help persuade you:
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Convinced? You can find all the information about the week and register here.
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Advocacy Training Webinars
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Beginning May 4 - Rare on the Road.
Since 2017, Global Genes and the EveryLife Foundation have partnered to host RARE on the Road events around the country, developing the next generation of advocacy leaders.
RARE on the Road 2021 will consist of three virtual, state-specific meetings focusing on issues and resources relevant to residents in Nevada, Florida, and Illinois. Learn more here.
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The Living Rare, Living Stronger NORD Patient and Family Forum featuring the Rare Impact Awards is officially virtual for 2021! Join us for networking, education, inspiration, hope and fun this June. Be sure to take advantage of the special rate for patients, caregivers and NORD member representatives. Information on registration and scholarships can be found here.
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Senior HHS Officials Confirmed by Senate: The Senate confirmed Xavier Becerra as Health and Human Services Secretary on Thursday, March 18th. The former California Attorney General, and former U.S Representative, will have a major role in the COVID-19 vaccine rollout, as well as the Biden administration’s plans to create a Medicare-like public health care option. Vivek Murthy was also confirmed by the Senate as Surgeon General on Tuesday, March 23rd. This will be Dr. Murthy’s second time serving as Surgeon General, as he previously served under President Obama.
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Nomination to Watch: The Senate Commerce, Science, and Transportation Committee will hold a confirmation hearing for Dr. Eric Lander, President Biden’s nominee for the Office of Science and Technology (OSTP) Director, on Thursday, April 29, 10 a.m. ET. If Dr. Lander is confirmed by the Senate, he would be the first life scientist to hold this position, and the first director to be part of the President’s cabinet.
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Access to Genetic Counselor Services Act: Introduced in the House by Representative Brian Higgins (NY) on March 24th, 2021, the Access to Genetic Counselor Services Act, H.R. 2144 would authorize the Center for Medicare and Medicaid Services to recognize certified genetic counselors (CGCs) as healthcare providers which, in turn, would allow CGCs to be reimbursed for providing genetic counseling services to Medicare patients. This would provide access to CGC services for up to 60 million Medicare beneficiaries and cut down wait times for patients needing to see a covered genetics provider. You can read more here.
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FARA joined a coalition letter to support RUSP alignment in Georgia which was passed! Georgia HB 567 officially passed the Georgia General Assembly on March 31st. This legislation will eliminate the unnecessary delay in screening for diseases, ensuring the Georgia babies born with debilitating and life-threatening diseases are diagnosed and treated at the earliest age possible and without devastating delays. The legislation would help save the lives of more than 700 babies in Georgia annually. The bill passed the State House 166-2 and unanimously passed the State Senate.
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RDLA, a program of the EveryLife Foundation, has created a glossary of policy and advocacy terms. You will find definitions for commonly used terms, a breakdown of the U.S government structure, relevant U.S government agencies, and non-governmental agencies. You can access the glossary here.
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The National Organization for Rare Diseases (NORD) has published a report, “Orphan Drugs in the United States: An Examination of Patents and Orphan Drug Exclusivity” which details the number of orphan products, generics and biosimilars available to rare disease. According to the report, the US Food and Drug Administration (FDA) approved 599 orphan products to treat rare diseases between 1983 and July 2020, 552 of which were on the market at the time of the study. Before the Orphan Drug Act became law in 1983, only 38 orphan products existed. The majority (75%) of FDA-approved orphan products treat one rare disease and have no other use. The increase in number of FDA orphan approvals since 1983, and the limited use of most orphan products for treating rare diseases only, underscore the significance of the Orphan Drug Act in helping to bring novel rare disease treatments to market.
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FARA is making a special outreach to community members who either served in the US military or have a family member (spouse, parent, child, sibling, grandparent) who served. FARA is exploring a research program run by the Department of Defense and the possibility of adding FA. If you have a connection to the military, your participation in this quick survey could impact that effort.
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