More than 600 advocates came together virtually for Rare Disease Week on Capitol Hill 2021. The impact made during this week is the culmination of the rare disease community’s dedicated work year-round and will help rare disease patients for generations to come.
- Speeding Therapy Access Today (STAT) Act (H.R. 1730/S. 670): 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 a summary of the bill here and learn more about the STAT Act, including how it would impact rare disease patients here. You can invite your Members of Congress to cosponsor the bill
- The new cosponsors include: Representatives Gottheimer (NJ-5), Kelly (PA-16), Kustoff (TN-8), Norton (DC), Ross (NC-2)
- Newborn Screening Saves Lives Reauthorization Act (H.R. 482/S. 350): 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 Baldwin (WI)
- Access to Genetic Counselor Services Act (H.R 2144/S. 1450): The Act provides reimbursement of services furnished by board-certified genetic counselors under part B of the Medicare program. If passed, the bill would benefit the Medicare program by providing savings and increased access to genetic services for all patients, not just Medicare eligible. In addition, the bill would cut down wait times for patients waiting to see a covered genetics provider. You can read more about the bill
- The new cosponsors include: Representatives Axne (IA-3), Balderson (OH-12), Blunt Rochester (DE), DeGette (CO-1), Grijalva (AZ-3), Levin (MI-9), Norton (DC), Price (NC-4), Ruppersberger (DM-2), Timmons (SC-4), Yarmuth (KY-3)
- Medical Nutrition Equity Act (H.R 3783/S. 2013): This bill expands coverage under Medicare, Medicaid, other specified federal health care programs, and private health insurance to include foods, vitamins, and individual amino acids that are medically necessary for the management of certain digestive and metabolic disorders and conditions. You can read more about the bill
- The new cosponsors include: Senator Tester (MT) and Representatives Allred (TX-32), Anxe (IA-3), Butterfield (NC-1), Cole (OK-4), Grijalva (AZ-3), Higgins (NY-26), Kelly (PA-16), Long (MO-7), Malinowski (NJ-7), Moore (UT-1), Stewart (UT-2), Trone (MD-6), Wexton (VA-10), Williams (GA-5), Wild (PA-7), Yarmuth (KY-3)
- BENEFIT Act (H.R. 4472/S. 373): The BENEFIT Act would amend the Food, Drug and Cosmetic Act (FDCA) to include patient experience and related data to be considered as part of the Benefit/Risk framework. If passed, the bill would require that the FDA disclose whether and how patient experience data was used in the benefit risk assessment of a new drug. This will ensure that patient voices are being heard and allow for patient stakeholders to continue to work with the FDA to refine the data that they need to make decisions. You can read more about the bill here and invite your Members of Congress to cosponsor the bill here.
- The new cosponsors include: Representative LaMalfa (CA-1)
- New members of the Rare Disease Congressional Caucus. There are 2 new members of the Caucus. Click here to invite your legislator to join the bipartisan caucus.
- New members of the Caucus include: Representative Grijalva (AZ-3) and Representative Larson (CT-1)
This year marked the 10th anniversary of this empowering and inspiring week of action, and we have already begun planning for next year’s event. Plans for Rare Disease Week 2022 are currently underway, because as a community we will never stop fighting for the development of and access to lifesaving diagnosis, treatments and cures!
