The Black Rare Disease Experience
Last updated: April 2023
I read an article the other day, and it told a detailed story about being Black and having a rare disease. That’s something you can’t find a lot of information about online.
My biracial identity
Being biracial comes with its challenges. I identify as a Black woman. I’m also half Lebanese, so I was always the black sheep growing up.
Where do I belong?
I was at swim schools that didn’t have many People of Color. The people who had a darker skin tone than mine wouldn’t accept me because I was too white. Yet, to the people who were white, I was made to feel like I was too Black.
Unfortunately, as hard as it is to say, this is a common problem that was just being biracial, but being Black, the Black experience can vary. I know I have more privilege standing next to somebody with a darker skin tone but less privilege than somebody with a lighter skin tone.
People don't look like me, and it's a problem
Yes, after I was diagnosed with NMOSD, I met a lot of people along the way within the community that had the same disease as me. However, I found it hard to find people that looked like me throughout the years. I’ve learned that many Black people and People of Color are in the community, but I often think about other rare disease groups that don’t have that privilege.
BIPOC representation in clinical trial participant populations
Linda Blount, the president and CEO of the Black Women's Health Imperative in partnership with the Rare Disease Diversity Coalition, said in an interview, "despite making up more than 38% of the US population, People of Color comprise only 16% of research study participants."1
There’s limited information on rare diseases affecting People of Color because they aren’t in clinical trials.
The problem is, why?
Well, this is something that still needs a definitive solution. We can start with researchers creating guidelines for the races studied in trials.
The solution is complex? Not an excuse to stop looking for one
Although it may become more complex to find non-white participants for clinical trials, People of Color will suffer without their necessary inclusion in research. Leaving People of Color with rare diseases out gives them lesser of a chance to get successful healthcare compared to their white counterparts.
Racial disparities and rare diseases
Once diagnosed with a rare disease, because it's rare, the patient who is diagnosed gets their own significant challenges. However, People of Color face additional problems that could potentially end up being fatal.
Problems with access
As we continue to fight the ongoing race war in the world, the rare disease community suffers severely. Accessible to quality healthcare, and good insurance play a role in the treatment of rare patient.
Poverty places people in jobs that don’t pay too well or lack insurance benefits. This leaves them without access to rare disease specialists.
Issues with underrepresentation
The ongoing problem of underrepresented race groups will continue to have a negative effect on the rare disease community.
So as long as systemic racism and health disparities continue to plague People of Color, the rare disease community will continue to suffer.
What can we do?
It’s important to educate others and advocate for the problems faced by the Black community. There’s limited information that can be found on it. The longer we allow racial disparities to affect the healthcare system, the more People of Color with rare diseases will continue to suffer greatly.
To bring awareness to these issues faced in the Black and rare disease community, we need effective and collaborative plans to get more foundations involved in this issue.
Establishing more partnerships with foundations, such as the Rare Disease Diversity Coalition, gives us a chance to escape the chains of health disparities.
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