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Despite having higher incidence and mortality rates for some cancers, minority patients make up less than 10% of clinical trial participants — of which only 4% are Black.

The National Institutes of Health Revitalization Act of 1993 mandates that minority groups be represented in federally sponsored clinical trials; however, most drug approvals are industry funded, and minority enrollment in clinical trials remains significantly low and disproportionate.

Although Black children have a lower incidence of acute lymphoblastic leukemia (ALL), Black children with ALL persistently experience higher relapse rates, more unfavorable prognostic indicators, and lower overall survival compared to white children.

Sources: [1a], [1b], [2], [3a], [3b]

We recognize that there are many racial and ethnic disparities that exist within the U.S. healthcare system, and we are working together as a team to identify and address those which affect pediatric cancer care, research, and the children and families it is within our mission to serve.

As we continue to grow our foundation, we remain steadfast in our mission to ensure that pediatric cancer patients and families have equal access to less toxic and more targeted treatments.

We know there is so much more we need to learn and do, and we are committed to take responsibility for our part in recognizing that Black Lives Matter, starting with the following long-term action items:

  • Increase diversity across our staff, our board of directors, and in recruitment of our volunteers and patient advocates.
  • Further educate ourselves, our constituents, and our supporters by connecting with subject matter experts who can address the racial and ethnic disparities that exist within the pediatric cancer community and how to change them.
  • Work together with our partners in the industry to identify and mitigate those factors which impede the enrollment of racial and ethnic minorities at all stages of immunotherapy clinical trial research.

 

We are committed to listen, learn, share resources and elevate individual stories in pursuit of change. Please email ewf@emilywhiteheadfoundation.org to connect with us.