WASHINGTON, D.C. – Today, on Rare Disease Day, Congresswoman Marilyn Strickland (WA-10) introduced the Health Equity and Rare Disease (HEARD) Act. The bill addresses the many obstacles faced by rare disease patients.
“Rare disease patients often face unique challenges at all phases of care, especially those from underrepresented communities,” said Strickland. “This bill addresses discrepancies, so every patient can get the care they need every step of the way.”
“By championing this legislation, Congress has the opportunity to make transformative strides in ensuring equitable access to care for those affected by rare diseases. This bill will help to ignite essential, coordinated research and bring necessary resources to improve patient outcomes. It aims to close the critical gaps in healthcare access, funding, and research that rare disease communities across the nation face,” said Jenifer Waldrop, Executive Director, of the Rare Disease Diversity Coalition.
Nearly 200,000 patients are living with rare diseases and conditions in the United States and over 25% of patients wait at least seven years before receiving a correct diagnosis. The HEARD Act addresses these unique obstacles that patients with rare diseases face – especially for underrepresented populations who often face exacerbated challenges.
The bill amends the Public Health Service Act to provide for greater investments in research on rare diseases and conditions disproportionately affecting underrepresented communities. The HEARD Act will:
- Develop a comprehensive federal plan to study and improve treatment outcomes in minority populations.
- Establish a scholarship and loan repayment program for healthcare professionals serving rare disease patients.
- Strengthen interagency activities—namely, clinical trials, outreach and data collection, and early detection screening.
- Award grants to institutions for the purposes of training underrepresented physicians, including Native and Tribal health centers.
The HEARD Act is endorsed by the Rare Disease Diversity Coalition (RDDC), Undiagnosed Diseases Network Foundation (UDNF), GLO Preemies, American Muslim Health Professional, Ehlers-Danlos Society, and the Nisqually Indian Tribe.
The bill is cosponsored by Rep. Eleanor Holmes Norton (DC) and Rep. Hank Johnson (GA-04).
You can read the bill bull text here.
Congresswoman Marilyn Strickland (WA-10) serves on the House Armed Services Committee and the House Transportation and Infrastructure Committee. She is Whip of the New Democrat Coalition, Secretary of the Congressional Black Caucus, the first African-American to represent Washington State and the Pacific Northwest, and one of the first Korean-American women elected to Congress.
###