Forum addresses worries about COVID-19 effects on rare diseases

    Sickle cell anaemia. Artwork showing normal red blood cells (round), and red blood cells affected by sickle cell anaemia (crescent shaped). This is a disease in which the red blood cells contain an abnormal form of haemoglobin (bloods oxygen-carrying pigment) that causes the blood cells to become sickle-shaped, rather than round. Sickle cells cannot move through small blood vessels as easily as normal cells and so can cause blockages (right). This prevents oxygen from reaching the tissues, causing severe pain and organ damage. (Photo: Getty Images)
    Sickle cell anaemia. Artwork showing normal red blood cells (round), and red blood cells affected by sickle cell anaemia (crescent shaped). This is a disease in which the red blood cells contain an abnormal form of haemoglobin (bloods oxygen-carrying pigment) that causes the blood cells to become sickle-shaped, rather than round. Sickle cells cannot move through small blood vessels as easily as normal cells and so can cause blockages (right). This prevents oxygen from reaching the tissues, causing severe pain and organ damage. (Photo: Getty Images)

    Rep. Harold Love, D-Nashville, said worries in the Black community about COVID-19 haven’t been only about the virus itself, but also about the effects it could have on patients with diseases like sickle cell disease. 

    Love was one of several community leaders addressing the effect of COVID-19 in the Black community at a Saturday forum led by Reginald French, a member of the Tennessee Rare Disease Advisory Council and president/CEO of the Sickle Cell Foundation of Tennessee.  

    State Rep. Harold Love (D-Nashville) (Official photo)
    State Rep. Harold Love (D-Nashville) (Official photo)

    “Concerns about the pandemic were around not just vaccines… but about what effects COVID would have on pre-existing conditions, sickle cell being one of them because we know African-Americans are disproportionately affected because of preexisting conditions and other health disparities,” said Love.

    “I think it’s important to have a conversation about eliminating these health disparities,” he said.

    The pandemic has highlighted long standing health disparities in the Black community and incurable diseases — like sickle cell, which is common among people whose ancestors came from Sub-Saharan Africa, Spanish-speaking countries in the Western Hemisphere and Mediterranean countries — need more attention. 

    The Black community has been significantly impacted by the pandemic, with Black citizens being 2.8 times more likely to die from COVID-19, according to the Centers for Disease Control and Prevention, and this is may be due to underlying conditions, such as socioeconomic status, access to health care, occupational hazards and rare illness. 

    “Sickle cell disease is a rare disease that affects approximately 100,000 Americans [nationwide], and in doing so, the Sickle Cell Foundation of Tennessee and many other partners are coming together to try to create a heightened awareness of this disease during a pandemic,” said French.

    There’s a need for more advanced treatments and improved access to care, and sickle cell disease is a manifestation of health inequities that get little attention, said French. Progress in curing the disease has been slow since most sufferers have been low-income minorities, according to French.

    Sickle cell disease patients are more susceptible to COVID-19, and the pandemic has caused health care options to be limited, such as clinical trials. 

    “Hopefully we’re able to discuss some very important topics for what we’re going to do with sickle cell disease but once again it also leads to the larger question, what to do to deal with health equity,” he said. 

    Love has been a proponent of sickle cell disease treatment, and in 2015 passed a bill authorizing TennCare to provide coverage for sickle cell disease. 

    Advocates also seek to widen the conversation to address the upcoming COVID vaccine and mistrust, speakers said. The Black community has deeply rooted mistrust in medical trials due to experiments conducted on unwilling patients, including the Tuskegee Syphilis Study. 

    In March, the Tennessee General Assembly passed legislation creating the Tennessee Rare Disease Advisory Council. About 600,000 Tennesseans are diagnosed with rare diseases with around 4,000 of those having sickle cell disease. 

    There are currently four treatments for the disease, with local clinical trials being conducted at St. Jude Children’s Hospital and The Vanderbilt-Meharry Center of Excellence in Sickle Cell Disease. Advocates hope to inform the community of all available treatments.