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Black History Month (BHM) was originally a week-long movement invented by the historian, educator, and activist, Carter G. Woodson in 1926. Originally, his academic initiative was a direct call to action to challenge the traditional school curriculum of the time, which often degraded and dehumanized Black people.
A week of social, political activism and historical focus on the experiences of Black people was a positive change, but it was only part of Dr. Woodson’s efforts to develop, democratize, and disseminate information on Black history.
Woodson’s desire to encourage lay people – not just academics – to openly share their experiences and fight against systemic racism led to a movement that took the work of entire communities, including churches, fraternities, sororities, libraries, social clubs, and civic organizations.
This fight for racial representation and equity continues today in 2022, and as a Black woman living with type 1 diabetes (T1D), I find myself continually expressing to others personal anecdotes – both joyous and heartbreaking.
I have been thinking about how I wanted February to flow for me during Black History Month, and I felt it would only be right to revisit Dr. Woodson’s desires for what this month represents. I chose to ask myself, “How can we utilize this Black History month to further decolonization within the T1D community?”.
I came across the Mutual Aid Diabetes Instagram page when I needed help raising money for a Diabetes Early Alert Canine program—a service dog that alerts their T1D buddy when it smells their blood sugars rising or falling. I could not afford the costs of the program upfront, but luckily, my GoFundMe link and story were reposted, which brought more awareness to donors.
Mutual aid is when the collective pulls their money together and donates it to people who need medical supplies, funding, food, housing, or other necessities. Mutual Aid Diabetes has been using their platform to post stories and urgent requests for funding or diabetes supplies on their Instagram page and website. They have recently created a Patreon found on mutualaiddiabetes.com, which uses funds from donor subscriptions to directly help individuals and families get the funding for their T1D necessities.
During Black History Month, it is also great to utilize support groups as a healing resource to speak about your experiences, hear current conversations, and connect with other Black people. Dr. Phyllisa Deroze, a Black Diabetes health educator, created her blog and website, which includes Black Diabetic Spotlights and even soul food recipes catered to Black people living with Diabetes. On her website blackdiabeticinfo.com, you can find Black Diabetic resources, people, organizations, shops, and children to follow.
As a child, I remember my pediatric endocrinologist telling my family how it could be very beneficial for myself and other Black people living with type 1 diabetes if I volunteered for clinical research. I did a few insulin trials that eventually led to the FDA approval of Novolog and other new insulin brands. The experience was very positive, involving me taking some insulin home and just recording my blood glucose levels for two weeks. The more recent studies I have done for more prominent CGM companies have been more invasive and challenging for my soul.
It is essential for those that enroll in and conduct these clinical trials to be aware of the history of testing on Black patients and how this may contribute to our hesitations for volunteering today. I had several in-clinic sessions for a new CGM trial where I was continuously hooked up to an IV for 11 hours as the researchers withdrew blood and administered finger pricks to check my blood glucose levels. These sessions included manipulations of my blood sugar to stay high for 90 minutes and then were lowered with insulin.
I withdrew from the study after two of the four clinical sessions I was supposed to complete. The safety I had felt as a child in my first research studies was no longer present. I drove home crying after feeling physically drained like I had been used, poked, and prodded. Of course, I knew I consented to the experiment, but after having several mental check-ins with my body and realizing that the financial compensation for my time wasn’t worth the emotional heaviness and long-term damage this study could do, I had to drop out and step away.
It is fantastic that more clinical trials prioritize recruitment of Black patients living with T1D, and I see the importance of having more medical professionals interact with us outside of their textbooks. Still, I would have liked to experience more kindness when I had gone into these recent studies. You’re already pretty tense and nervous about spending a day in a lab connected to devices, with blood draws and machines; it would have made a difference if the nurses and staff had been more communicative and inviting.
Providers, ask your patients about their experiences with T1D, listen if they open up about some of the joys or challenges, they’ve faced, speak to them about how this research will specifically help with upcoming advancements, talk about your life and see if there are any mutual interests you may have.
This Black History Month, maybe speak to your endocrinologist about upcoming clinical research opportunities and keep in mind that advocating for your treatment within medical research may also be a factor. Reach out to mutual aid groups to share your story and search for resources created by Black leaders to uplift the Black T1D community further this year.
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Dalcye – thank you so much for sharing your experiences and ideas for decolonizing type 1 diabetes. I am glad you had the self-advocacy available to know you needed to pull out of the one study because self-care is _so_ important. I wish you had not had to pull out, though. Kindness is lacking many places, but it is especially important for clinical trials… and even more important for participants who are People of Color.
Mostly, I just wanted to say thank you for your article. Every voice that speaks out is a potential for important change!