Rare Daily Staff

The Rare Disease Diversity Coalition, which is focused on advocating for ways to alleviate the burden on people of color with rare diseases, is urging lawmakers to remove from the budget reconciliation advancing in Congress a provision that would reduce the benefit of the Orphan Drug Tax Credit.

“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, 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.

The House Ways and Means Committee included a provision in its version of the reconciliation bill 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,” said 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.”

Photo: Goler Blount, president and CEO of Black Women’s Health Imperative and RDDC Steering Committee member

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