Rare Disease Diversity Coalition Urges Congress to Preserve Incentives for Development of Treatments

WASHINGTON, Nov. 1, 2021 /PRNewswire/ -- The Rare Disease Diversity Coalition recently sent a letter urging lawmakers not to change the Orphan Drug Act as part of the budget reconciliation package making its way through Congress.

"People of color with rare diseases not only must fight for recognition of their condition but also must battle the systemic racism and bias that plague the U.S. healthcare system," said Linda Goler Blount, MPH, President and CEO of Black Women's Health Imperative and RDDC Steering Committee Member. "We're calling on Congress to remember the twin struggles of people of color with rare diseases -- and protect policies like the Orphan Drug Act that could deliver the cures they're hoping for."

In 1983, Congress passed the Orphan Drug Act to incentivize the development of treatments for rare diseases -- those that affect fewer than 200,000 people. Through tax credits and other incentives, the Act helps offset the cost of developing and testing therapies for these conditions. Since its passage, more than 730 drugs and therapies have been developed and approved for more than 250 rare diseases, including Hodgkin's lymphoma, sickle cell disease, and mastocytosis.

Prior to the Orphan Drug Act, it wasn't commercially viable to develop treatments for rare diseases, given the relatively limited pool of potential customers and the high risk of failure in the research and development process.

The House Ways and Means Committee included a provision in its version of the reconciliation bill -- Sec. 138141, the "Credit for Clinical Testing of Orphan Drugs Limited to First Use or Indication" -- that would limit the number of rare disease drugs that can qualify for government assistance under the Orphan Drug Act.

"We urge Congress to preserve the orphan drug tax credit in its current form and remove Section 138141 from the Build Back Better reconciliation package," said Dr. Elena Rios, President and CEO of the National Hispanic Medical Association and RDDC Steering Committee Member. "Health equity must continue to be a priority for Congress. And that means protecting the interests of people with rare diseases."

Launched in May 2020 by the Black Women's Health Imperative, the Rare Disease Diversity Coalition (RDDC) was formed to identify and advocate for evidence-based solutions to alleviate the disproportionate burden of rare disease on communities of color, which have been impacted even more during the pandemic.

About the Rare Disease Diversity Coalition
More than 30 million -- or 1 in 10 -- Americans have a rare disease. For rare disease patients of color, racial disparities have caused a crisis. The Black Women's Health Imperative launched the Rare Disease Diversity Coalition to address the extraordinary challenges faced by rare disease patients of color.

The RDDC brings together rare disease experts, health, and diversity advocates with industry leaders to identify and advocate for evidenced-based solutions to alleviate the disproportionate burden of rare diseases on communities of color. For more information on the RDDC's work visit Rise to Rare.

To learn more, visit: www.RareDiseaseDiversity.org.

About the Black Women's Health Imperative
The Black Women's Health Imperative is a national non-profit organization dedicated to advancing health equity and social justice for Black women across generations, through policy, advocacy, education, research, and leadership development. The organization identifies the most pressing health issues that affect the nation's 22 million Black women and girls and invests in the best of the best strategies that will accomplish its goals. www.bwhi.org 

CONTACT:
Kirby Eule |  Keybridge Communications  |  [email protected] |  202-471-4228 X 126

SOURCE Rare Disease Diversity Coalition

Related Links

http://www.RareDiseaseDiversity.org