Rare Across America 2021 attracted more than 670 rare disease advocates to participate in 373 meetings with their federal legislators or their staff during the month of March. The event, hosted by the Rare Disease Legislative Advocates, engaged advocates from 48 states plus the District of Columbia and Puerto Rico to speak with legislative officials and their staff on important rare disease issues. These advocate meetings resulted in securing additional cosponsors for rare disease legislation and new members to join the Rare Disease Congressional Caucus.
- Speeding Therapy Access Today (STAT) Act, S. 670/H.R 1730: The STAT Act is a bipartisan bill that was created with the input of the rare disease community aimed at improving the development of and access to therapies for the rare disease community. Most notably, this bill would create an FDA Center of Excellence for Rare Diseases. You can find more information on the bill here and invite your Members of Congress to cosponsor the bill here.
– The new cosponsors include: Senator Wicker (MS) and Representatives Butterfield (NC-1), Hastings (FL-20), Soto (FL-9), and Van Drew (NJ-2) - Newborn Screening Saves Lives Reauthorization Act, S. 350/H.R 482: The Newborn Screening Saves Lives Reauthorization Act, will continue critical federal programs that provide assistance to states to improve and expand their newborn screening programs, support parent and provider education, and ensure laboratory quality and surveillance for newborn screening. Authorizations for these programs expired in 2019. You can find more information on the bill here and invite your Member of Congress to cosponsor the bill here.
– The new cosponsors include: Senator Wicker (MS) and Representatives Barragan (CA-44), Bonamici (OR-1), Carbajal (CA-24), Connolly (VA-11), Hayes (CT-5), Himes (CT-4), Holmes Norton (DC), Manning (NC-6), Meeks (NY-5), O’Halleran (AZ-1), Wexton (VA-10), and Yarmuth (KY-3). - New members of the Rare Disease Congressional Caucus. There are 12 new Members of the Caucus. Click here to invite your legislators to join the bipartisan Caucus.
– The new members of the Caucus include: Senators Braun (IN) and Senator Daines (MT) and Representatives Bacon (NE-2), Emmer (MN-6), Guthrie (KY-2), Leger Fernández (NM-3), Malliotakis (NY-11), Manning (NC-6), Strickland (WA-10), Van Drew (NJ-2), Westerman (AR-4), and Wexton (VA-10). - Ally’s Act, H.R 477/S. 41. This bill will ensure that private insurance companies provide coverage for hearing devices for children and adults birth to age 64, including services, upgrades, surgery and associated costs that come with these devices. You can find more information on the bill here.|
– The new cosponsors include: Senator Warren (MA) and Representatives Crow (CO-6), Harder (CA-10), Hastings (FL-20), Rutherford (FL-4), and Takano (CA-41). - Ensuring Lasting Smiles Act, S. 754 /H.R. 1916. This bill will require private health insurance plans to cover diagnosis and treatment services for congenital anomalies and birth defects, such as reconstructive services and prosthetics. The House bill has 136 cosponsors and the Senate bill has 32.
The Rare Disease Legislative Advocates would like to thank all the advocates who participated in Rare Across America meetings and continue to build relationships with Members of Congress. Participants advocated for a wide range of bills, some of which have not been reintroduced in the 117th Congress yet. If you have not already, please take the time to follow up on your meetings by emailing the staffer you met with and thanking them for the meeting and repeating your ask.
Save the date for Virtual Disease Week on Capitol Hill 2021 taking place July 14th-22nd, 2021. You can find more information here.
