Sickle cell disease can cause debilitating and ever-present pain. Treatments are limited and can be harsh on a person's body.
In September, President Joe Biden declared National Sickle Cell Awareness Month, recognizing how the disease impacts the lives of nearly 100,000 people — predominantly people of Black and brown descent — in the United States, and about 3.5 million people around the world. According to the Centers for Disease Control and Prevention, “about 1 in 13 Black children tests positive for the sickle cell trait, and about 1 in 365 Black Americans develops the disease over the course of their lifetime.”
Despite the statistics, people living with sickle cell disease are putting up a good fight for awareness in the mainstream by advocating for universal health screenings for sickle cell traits in newborns, participating in clinical trials, and finding support and resources among caregivers and other sickle cell disease survivors.
So why hasn't the medical community advanced more to help those who are suffering?
One of the main reasons, according to guests on Basic Black, is that the disease primarily impacts people of color.
"I think sickle cell disease is the picture of health inequities in our healthcare system," said Dr. Sharl Azar, medical director of the Comprehensive Sickle Cell Disease Treatment Center at Massachusetts General Hospital. "For the last 200, 300 years, patients with sickle cell disease have been mistreated in this country."
Azar said in the past 20 years, only three new drugs to treat sickle cell disease have become available. The main drug that can help patients is an antiquated chemotherapy treatment. Gene therapy could be on the horizon but challenging to access, Azar added.
Dima Hendricks, a health advocate, activist and sickle cell "warrior" who founded Through The Pain said she has suffered a number of severe health issues due to sickle cell disease including a stroke, blindness in one eye and a number of major surgeries.
Hendricks said she deals with pain every single day even though she may look fine on the surface. She said that, coupled with the stigma of sickle cell, can cause her and others with the disease to suffer in silence.
She added that going to the hospital for help can be a harrowing experience.
"The very essence of what makes me feel like a human being or a woman is just stripped away from me every time I go to the emergency room. So I avoid going there at all costs," Hendricks said.
Carissa Juarez, a patient ambassador for the Massachusetts Sickle Cell Association, also said she avoids going to the hospital to get treatment for her 11-year-old daughter who has sickle cell disease. She said sometimes doctors will offer her daughter Motrin when she really needs IV pain medication. Juarez said there simply isn't enough education and awareness surrounding the disease.
"There's that lack of education and knowledge to it. It's a lot of, you know, biases to this. And it's sad," she said. "It's really sad because it's things that we have to go through every day."
State Rep. Bud Williams, who represents the 11th Hampden District in Springfield also serves as the chairperson on the Joint Committee on Racial Equity, Civil Rights and Inclusion, said he's working with state and federal leaders like Sen. Cory Booker to get more awareness and funding for sickle cell disease.
"We'll continue to fight on Beacon Hill. We're looking for more funding this year," Williams said.
Watch: Are there new sickle cell disease treatments available?
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