RARESummit21: Rare Equity

On October 7th, 2021, Patient Worthy took part in RARESummit21, a virtual event organized by the Cambridge Rare Disease Network (CRDN).

“…a flagship CRDN event gathering over 300 great minds in rare diseases to make connections, exchange ideas and openly debate possibilities.”

This event was geared toward rare disease patients, organizations, and other stakeholders to help chart a path forward for a better future. The first session of the event was a panel discussion titled “Rare Equity.”

This discussion focused on challenges related to diversity, inclusion, and equity that are pervasive in the medical field and healthcare system. Discrimination and bias can have lasting impacts that can mean the difference between life and death for patients.

Kevin Mott, Board Member, NephCure Kidney International, talked about the challenges and racism he faced as a black man when trying to get diagnosed with focal segmental glomerulosclerosis (FSGS). One sign of the illness was high blood pressure, and when typical medications weren’t working, doctors started suggesting that his lifestyle choices were the problem. They blamed his diet (by assuming he was eating lots of fried and processed foods), use of steroids and HGH, and cocaine use, despite the fact that none of these explanations were part of his lifestyle and instead played into anti-black stereotypes. It was only after seeing a fourth doctor that he finally found someone who would hear his side of the story and put him on the path to a diagnosis.

Farah Akhtar, a Special Education Needs Teacher whose son was born with xeroderma pigmentosum, also had trouble getting proper treatment. He had severe sunburn, but the doctors initially blamed grass allergies and eczema. His issue was not being taken seriously. She started treating him with sunscreen daily since it was clear he was getting damaged.

Only after taking her son to a different doctor after they had moved to a different area did he get the evaluation needed to get the diagnosis. Farah believes it wouldn’t have happened if they hadn’t moved. She has had to get used to pushing hard for proper treatment and advocating for him over the years.

Nicola Miller, Editor in Chief, Rare Revolution Magazine; Chair of Trustees, Teddington Trust, talked about the impact that gender can have on getting treatment. Male caregivers might be taken more seriously than a female, and some mothers have gotten into the habit of having their husbands present at a child’s appointment to get taken more seriously. It also goes for female patients; some have said they will take a male chaperone with them to have more credibility. Unfortunately, even female doctors have a tendency to believe female patients less often.

Kerry Leeson-Beavers, Project Lead, Breaking Down Barriers; National Development Manager, Alstrom Syndrome UK, had similar experiences when trying to get her son (who has Alstrom syndrome) a diagnosis. The doctors immediately assumed that he was being fed poorly since he was overweight. Over time, Kerry had to learn to be the insistent advocate for her son, and over the years she has developed a gut sense that she knows to follow when trying to advocate. She has developed an understanding of Alstrom syndrome over the years that their doctors have learned to respect.

Tammy Boyd, Chief Policy Officer, Black Women’s Health Imperative; Co-Founder, Rare Disease Diversity Coalition, says that BWHI has been pushing hard for better representation in clinical trials, which often do very poorly in selecting a diverse group of participants. She cites the COVID-19 vaccine trials, which failed to include patients with rare diseases as well as other groups. 

She also says that many doctors do not ask black people if they would like to participate in trials. While there is a fraught history of medical experimentation and torture of black people in clinical studies in the US, the assumption that black people would never be interested in trials prevents them from representing the population appropriately.

The Rare Disease Diversity Coalition, which Tammy founded, has been bringing together a wide variety of rare disease stakeholders in an attempt to help tackle some of these issues. The group was founded with the hope of addressing some of the problems that people of color with rare diseases have to face. Multiple working groups have been formed and have been working on a bias training program for providers.

Equity is a global problem that extends far beyond the scope of just rare disease or the medical field, and the only path forward has to involve regular dialogue and decisive action that can help improve the lives of patients.

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