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Black Women’s Health Imperative Announces New Rare Disease Diversity Coalition

First-Of-Its Kind Coalition Will Convene Healthcare Leaders To Address The Extraordinary Challenges Faced By Minorities With A Rare Disease 

WASHINGTON, DC – (May 29, 2020) – Today, the Black Women’s Health Imperative (BWHI) announced the formation of a new coalition focused on reducing racial disparities in the rare disease community. The coalition’s steering committee — made up of rare disease experts, health and diversity advocates, and industry leaders — is convening for its inaugural meeting today. The coalition will identify and advocate for evidence-based solutions to alleviate the disproportionate burden of rare diseases on communities of color.

“The COVID-19 pandemic, which is devastating communities of color, is a painfully fresh reminder of the disparities in our healthcare system that leave minorities behind,” said Linda Goler Blount, BWHI President and CEO. “For those living with a rare disease, these disparities are no different: communities of color face unacceptable barriers to accessing a diagnosis and proper treatment. I’m honored to work with our esteemed steering committee to take urgent action on this issue.”

An estimated 30 million Americans have a rare disease. By some approximations, it can take an average of five years and consultations with over seven clinicians to reach an accurate diagnosis for a rare disease. Additionally, only ten percent of rare diseases have a treatment approved by the Federal Drug Administration. 

For minorities with a rare disease, these challenges are compounded. Minorities are underrepresented in genome-wide association studies and clinical research trials, leading to a lack of understanding about effective treatments. Additionally, broader racial disparities in access to affordable care and social determinants of health create significant added barriers. 

The work of the Rare Disease Diversity Coalition is led by BWHI and a leadership steering committee comprised of advocacy, community and industry leaders. The coalition is supported by founding sponsor Retrophin, a biopharmaceutical company dedicated to identifying, developing, and delivering life-changing therapies to people living with rare disease. BWHI plans to expand the coalition’s membership as its work gets underway, including enlisting additional industry support.

Steering committee members include:

  • Linda Goler Blount, MPH, Coalition Chair & Black Women’s Health Imperative CEO 
  • Juliet K. Choi, JD, Asian & Pacific Islander American Health Forum
  • Garfield Clunie, MD, National Medical Association
  • Donna Cryer, JD, Global Liver Institute
  • Debbie Drell, National Organization for Rare Disorders
  • Eve Dryer, Retrophin
  • Beverley Francis-Gibson, MA, Sickle Cell Disease Association of America  
  • Millicent Gorham, MBA, National Black Nurses Association
  • Kimberly Haugstad, MBA, Global Genes
  • Julia Jenkins, MA, EveryLife Foundation
  • Lauren Lee, MA, NephCure
  • Aletha Maybank, MD, MPH, American Medical Association
  • Pamela Price, RN, Balm In Gilead
  • Elena Rios, MD, National Hispanic Medical Association
  • Saira Sultan, JD, PCORI Advisory Panel on Rare Disease
  • Marshall Summar, MD, Children’s National Hospital