Sickle Cell Civil Rights Call Renewed

The past and the future of the fight against sickle cell disease converged inside a restored 100-plus year-old Victorian home at Chapel and Orchard streets.

The occasion was a Black History Month forum and poster-unveiling organized and held one evening last week at Michelle’s House at 1389 Chapel St., home of the Sickle Cell Disease Association of America, Connecticut (SCDAA CT), the region’s only community and resource center for families struggling with sickle cell disease.

The evening program featured the presentation of recovered posters from the early 1970s-era Black Panther Party campaign to tackle and call attention to sickle cell, a debilitating genetic blood disease that disproportionately affects people of African descent. The disease can often render people unable to attend school or work; the media age of death for people with the disease is in 40s. The Panthers conducted screenings and advocated for more research dollars and attention paid to the disease, successfully pushing the federal government to take action. (This chapter from Alondra Nelson’s book on the subject details the campaign’s success.) The posters donated to SCDAA CT will be on permanent display at Michelle’s House.

University of Connecticut Professor Jeffrey Ogbar (pictured at right) keynoted a panel prior to the unveiling, with a lecture about the broader work of the Panthers to incorporate the quest for health care equality into the broader fight for racial and social justice. Frank Tavarez-Mora, a medical student who serves on the SCDAA board, spoke about his own experience with the disease.

That fight for community health care equality continues, and SCDAA/Michelle’s House (named after Michelle Obama) is taking the lead on sickle cell, providing information and support to families and advocating for increased research and treatment dollars. At last week’s event, SCDAA launched two new initiatives: sickle cell trait testing and genetic counseling.

The Greater New Haven Chapter of the NAACP has moved its offices into Michelle’s House, from Whalley Avenue, reflecting the organization’s embrace of health-care access as a civil rights issue. NAACP chapter President Dori Dumas sits on the SCDAA/Michelle’s House Board of Directors, as well.

Dumas this week discussed the NAACP’s health care work, including a focus on helping the Black community survive Covid-19, during an appearance Tuesday on WNHH FM’s ​“Dateline New Haven” program. Click on the video to watch the discussion, which included remembrances of how as a kindergartener living in the old Elm Haven public-housing high-rise, Dumas attended the Black Panthers’ free breakfast program.