by June Kinoshita, FSHD Society
Our mission at the FSHD Society is to find treatments and a cure for FSHD—and then make sure everyone in the world who needs it has access to it. Unfortunately, when it comes to healthcare in general, people do not have equal access. Racial and ethnic minorities, and the socioeconomically disadvantaged, are under-represented.
Our demographics – who joins the Society, comes to our meetings, is being seen by the leading experts, is volunteering for research and clinical trials – indicates significant gaps in who we are able to reach and serve. In the data collected by the US national registry for FSHD, only 1% of respondents identify as African American. Hispanic and Asian patients are also disproportionately low in number.
But, to the best of our knowledge, FSHD affects all groups equally and the FSHD Society wants to ensure everyone has access to the information, services, and research opportunities to help them live well with FSHD.
We can speculate about why some groups are so greatly underrepresented:
- Underdiagnosis or misdiagnosis. Across the board, FSHD is underdiagnosed, a situation made worse if you have less access to healthcare or to specialists.
- Lack of connection and trust. FSHD research and specialist care is offered mainly through university medical centers – not where most people get their care.
These barriers affect not only Black and Brown people, but socioeconomically disadvantaged communities of all backgrounds. The fact that FSHD is a rare condition means that, to get expert care or participate in research, people must often travel, take time off from work, and be accompanied by a caregiver. Therefore, diagnosis and care are simply out of reach for many.
While the causes of these inequities are systemic, we want to identify practical steps we can take to overcome them. For this purpose, we have formed a task force whose members include patient Michelle Saunders, a senior writer at Nieman Marcus; clinical trial research network staff Kiley Higgs, Jennifer Huynh, Sara Moldt, and Nikia Stinson, DPT; biopharma representative Tamisha Vaughn; and FSHD Society board members Amy Bekier, Neil Solomon, and Carden Wyckoff.
Our first step is to define the scope of the challenge. We have begun to collect demographic data on our members in order to clearly define the problems we wish to solve or measure whether our efforts are making a difference. We are reaching out to medical schools and associations that serve Black and Brown communities to raise awareness and promote medical education about FSHD. We are working with the Clinical Trial Research Network on outreach initiatives. We hope to reach broader sectors of society by connecting with social media influencers.
We welcome feedback from all of you on what more we can do to build a more diverse, equitable, and inclusive FSHD Community.