The Rare Disease Diversity Coalition and Global Genes have recently established a new partnership. This partnership aims to help find solutions to help address outcome disparities faced by people of color that live with a rare disease. In order to learn more about this partnership, Patient Worthy spoke with Linda Goler Blount, president of the Black Women’s Health Imperative.
The Black Women’s Health Imperative is responsible for the establishment of the Rare Disease Diversity Coalition. The Imperative was first established 38 years ago as a network of Black women that were committed to self-care, as well as improving treatment and outcomes for Black women in healthcare.
“I’ve tried to bring an emphasis on research. While we’re doing what we need to be doing and seeing our healthcare providers, what actually happens in the exam room, the hospital, the operating theater…while called evidence-based, it doesn’t necessarily have much to do with us because we weren’t a part of creating that evidence in the first place.” – Linda
This approach means looking at how research is conducted and the resulting data in order to determine what is applicable to Black women. Linda has been engaging with drug companies about how underrepresented people of color are as both researchers and as participants in said research. The Rare Disease Diversity Coalition (RDDC) has shifted the focus more specifically to people of color with rare diseases. Rare patients of color face even worse outcomes and diagnostic delays than white rare disease patients. Five different working groups have been established in order to take action on different aspects of the issue.
“One of our major speakers was a Black man who was diagnosed with cystic fibrosis in his fifties.”
This example above is a clear demonstration of the disparities faced by people of color, as cystic fibrosis is typically diagnosed very early in life.
RDDC and Global Genes converged on the need to help combat issues of equity that these patients are facing on a regular basis. Global Genes will contribute critical resources that can help make a difference, such as a technology platform that can help parents and families understand their options.
“A lot of folks just don’t know where to begin, even when you can get to a diagnosis. Global Genes can help people answer the question, “Now what?” or “What do I do next?”
Since patients of color are less able to rely on providers to help them access these resources, the hope is that this partnership can help fill the gap and help patients get the diagnosis and treatment they need more quickly.
“The main goals are to really understand what’s going on by acknowledging that these inequities exist and what’s behind the inequities. We’ve talked about historical racism, and the folks at Global Genes aren’t afraid to have the conversations that can help people understand that these problems aren’t the result of patients not caring.”
The partners also seek to identify and implement concrete solutions that can help fill the gap. This can mean resolving issues related to drug development, research, and awareness. Linda says that the key is being willing to make the needed changes, not just being aware of the problems at hand.
“Progress looks like more funding for researchers of color, more funding to research rare diseases that disproportionately impact people of color, and more funding for research into understanding why rare disease outcomes are worse for certain populations.”
This means shortening the time it takes for diagnosis, which can’t take decades if patients are going to get treated effectively. Physicians also need to grasp the lived experience of patients of color instead of placing blame on patients themselves.
“I think it’s really important to understand that advocacy is a luxury. The fact that there aren’t a lot of people of color in advocacy isn’t because of lack of interest. It’s because it takes time and resources. The disproportionate impacts that these communities face are not the result of genetics or biology.”