Gap in care, research and funding for rare blood disorder disproportionately affecting Black Americans
MEMPHIS, Tenn. (WMC) - About 3,000 people in Shelby County are living with sickle cell disease, about 100,000 across the country.
It’s a rare blood disorder that has disproportionately affected African-Americans for more than a century. However the gap for care, research and funding is staggering compared to other rare disorders.
Telly Dodson says he knows that all too well. It’s the simplest of things that could turn into a life-or-death situation for Dodson like working in his yard or playing in the snow. “I can’t go swimming. I can’t get into a pool or the ocean. I have to test the water to see if it’s cool,” said Dodson. Dodson is constantly worried about over-exertion or any extreme temperature change to his body that can cause a pain crisis due to his sickle cell diagnosis.
Dodson’s red blood cells are deformed shaped like a “C” or a sickle. The shape of the cells keeps them from moving properly in the body, causing them to jam up or stick together and not reach vital organs which causes excruciating pain. ”I don’t know how lightning feels, but it’s just like that, that’s what I would relate it to because it’s just a sharp constant pain that’s just constantly going and it doesn’t stop until that clot dissipates,” said Dodson.
It’s also hereditary.
“Sometimes they miss a lot of days at work. They miss a lot of days from school because you can have a pain crisis and one thing about it, it doesn’t give you a forewarning that it’s about to come on,” said Reginald French, president and CEO of the Sickle Cell Foundation of Tennessee based in Memphis.
Dodson says he’s known his whole life he’s had this condition, and so do many of his family members causing years of emergency trips to the doctor. According to the Healthcare Cost Utilization Project, in 2016 there were 134,000 sickle cell disease-related in-patient hospital stays.
The average length of stay was five days which often added up to large medical bills. The non-profit raises funds for sickle cell consumers and their families for things like food, utilities, housing and burial assistance. “So sometimes when you hear a lot about health disparities and health equity, you hear about the lack of research or lack of funding that goes towards the sickle cell community, the numbers will show you it’s a lot more difficult to raise funding for those individuals than it does some of those other rare diseases,” said French. According to Guidestar which profiles U.S. Non-profits, the ALS Association Tennessee chapter’s gross revenue is $1.1 million. United Cerebral Palsy of Middle Tennessee has a $1.5 million war chest. However, the Sickle Cell Foundation of Tennessee, which serves the entire state, has only about $181,000 gross revenue. French thinks a lack of awareness plays a role in the shortage of funds which is why what happened in the Tennessee legislature last month was so monumental.
Governor Bill Lee signed into law the state’s first-ever sickle cell disease bill called “Terrance’s Law”. It is in honor of Nashville State Representative and House bill sponsor Harold Love’s cousin who died of sickle cell.
State Senator Raumesh Akbari of Memphis sponsored the Senate version of the bill which requires an annual review by Tenncare of all medications and forms of treatment for sickle cell.
“Now you asked why is that bill so important. We believe it’s very important because it additionally got sickle cell disease a seat at the table specifically with the top policymakers so they can understand the importance and keep up with what is going on with it,” said French who lobbied on behalf of the organization to get the bill passed. Sickle cell dates back to 1910, but according to the FDA, for more than 100 years sickle cell patients had only one drug treatment option that was approved in 1998. Two more have been approved since. Dodson says more has to be done to save more lives. We asked Dodson what was his biggest fear concerning this disease. he said, “Not being there for my family, because you’re taught at an early age your life expectancy is shortened.” The median life expectancy for sickle cell patients is about 40-years-old. Dodson turns 46 this year, beating the odds one day at a time. If you would like to donate or learn more about the Sickle Cell Foundation of Tennessee visit https://www.sicklecelltn.org/.
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