There were 370 meetings with Members of Congress or their staff in 49 states plus the District of Columbia, Puerto Rico and the U.S Virgin Islands. A total of 297 patient organizations participated!
Rare Disease Legislative Advocates from around the country spoke to their legislative officials and their staff on important rare disease issues.
The advocate’s meetings and hard work, resulted in the following:
- 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 hereand invite your Members of Congress to cosponsor the bill here. The Energy and Commerce Committee held a hearing that included discussions on this bill as a result of the advocacy during Rare Disease Week. You can listen to a recording of the hearing here.
- New cosponsors: Representatives Axne (IA-3), Bishop (GA-2), Crow (CO-6), Dean (PA-4), Hill (AR-2), Matsui (CA-6), O’Halleran (AZ-1), Stansbury (NM-1), Swalwell (CA-15), Wilson (SC-2), Yarmuth (KY-3), Wilson (SC-2)
- Better Empowerment Now to Enhance Framework and Improve Treatments (BENEFIT) Act, H.R 4472/S. 373: There is currently a lack of any requirement in law today that the FDA include patient experience or patient-focused drug development (PFDD) data as a part of it’s risk-benefit framework. This means that the agency’s signature tool for evaluating risk-benefit does not have to include data from the patient perspective that could be critical to informing the agency’s evaluation, and ultimately, decision on whether or not to improve a produce. This bill would close this gap by ensuring data is fully considered as part of the FDA’s risk benefit assessment for any new products. You can find more information the bill here and invite your Members of Congress to cosponsor the bill here. The Energy and Commerce Committee held a hearing that included discussions on this bill as a result of the advocacy during Rare Disease Week. You can listen to a recording of the hearing
- New cosponsors: Representatives Bishop (GA-2), Cleaver (MO-5), Cole (OK-4), Higgins (NY-26), Fortenberry (NE-1), Norman (SC-5), Norton (DC), Soto (FL-9), Wild (PA-7) and Senator Collins (ME)
- Access to Genetic Counselor Services Act, H.R 2144/S. 1450: Medicare beneficiaries face significant barriers in accessing genetic counselor services, and those barriers worsened during the COVID-19 pandemic. The Access to Genetic Counselor Services Act would provide beneficiaries direct access to genetic counselors through direct access and billing. It would also enable genetic counselors to bill Medicare directly, enable physician practices and hospitals to employ genetic counselors, enhance team-based case and more. You can find more information on the bill here.
- New cosponsors: Representatives Auchincloss (MA-4), Bilirakis (FL-12), Castor (FL-14), Dean (PA-4), Jones (NY-17), Maloney (NY-12), Mullin (OK-2), O’Halleran (AZ-1), Rush (IL-1) and Senators Van Hollen (MD) and Klobuchar (MN)
- 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 hereand invite your Member of Congress to cosponsor the bill
- New cosponsors:Senators Murkowski (AK) and Van Hollen (MD)
- New members of the Rare Disease Congressional Caucus. There are 5 new Members of the Caucus. Click here to invite your legislators to join the bipartisan Caucus.
New members: Representatives Foster (IL-11), Mace (SC-1), Salazar (FL-27), Stansbury (NM-1) and Senator Warnock (GA)Advocates who participated in meetings with their Members of Congress please follow-up!
Click here to access the Advocacy Associates platform to find a template email to send to the Members of Congress. To access the template email, click the “send a thank you” button located on each advocate’s meeting pages.
Save the date for Rare Across America 2022 taking place August 8th-19th.
