An estimated 25-30 million Americans are part of the rare disease community. If you’re one of them, you share a common (yet uncommon) experience: public scrutiny, difficulties in diagnoses, treatment accessibility, and a lack of understanding or education about these conditions. Yet while the healthcare system can be difficult, and often frustrating, to manage, it is even more so for people of color. For this reason, the Black Women’s Health Imperative (BWHI) recently announced the formation of the Rare Disease Diversity Coalition.
Rare Disease Diversity Coalition
For nearly 40 years, the Black Women’s Health Imperative has worked to improve the financial, mental, and physical health of black women and girls in the United States. The organization’s mission is not just to solve healthcare issues for this group, but to equalize the playing field and reduce racial inequality in healthcare. This is especially important in the rare disease community, in which receiving a diagnosis is a journey in itself. In fact, it takes an average of 7.3 doctors, and 4.8 years, before many receive an accurate diagnosis.
However, this journey can be even longer, or more stress-inducing, for minorities and people of color. This is because:
- Many genetic studies are centered around European ancestry and descent. However, understanding underlying genetic mutations and abnormalities is crucial to understanding certain rare diseases. Focusing on one subset of ancestry leaves gaps in knowledge and excludes minority patients from the discussion. Additionally, this excludes them from effective, customized, and appropriate treatment and care.
- Some communities of color are faced with obstacles such as: poverty, access to healthy food, proximity to hospitals, and affordable and accessible healthcare. As a result, it can be difficult to access expensive or experimental treatments.
BWHI Statement
The inaugural meeting of the Rare Disease Diversity Coalition occurred on May 29, 2020. According to a BWHI press release:
The coalition will identify and advocate for evidence-based solutions to alleviate the disproportionate burden of rare diseases on communities of color.
BWHI president Linda Goler Blount highlights this need for solutions in the current COVID-19 pandemic. As people of color are disproportionately affected and face increasing issues with treatment access, we begin to see a systemic problem that needs to be fixed.
Steering committee members hail from the following organizations:
- Black Women’s Health Imperative
- Asian & Pacific Islander American Health Forum
- National Black Nurses Association
- National Hispanic Medical Association
- Global Liver Institute
- Sickle Cell Disease Association of America
- Retrophin
- PCORI Advisory Panel on Rare Disease
- National Organization for Rare Disorders (NORD)
- Children’s National Hospital
- Balm In Gilead
- National Medical Association
- American Medical Association
- Global Genes
- NephCure
- EveryLife Foundation
Read the source article here.
