New Treatments and the Need For Blood – Sickle Cell

The struggle against sickle cell disease is just that for many who have it – a fight for most of their life of pain management, in and out of emergency rooms, convincing medical professionals the pain is real and debilitating, trying to hold down a steady job or just going to school.  

 

Thankfully, in December 2023, the Food and Drug Administration made a groundbreaking decision to approve two gene therapy treatments for sickle cell disease (SCD). These potentially curative therapies mark a new era for SCD treatment, but financial barriers and systemic inequality can make them difficult to access. The treatments cost about $2 million to $3 million per patient. In May of this year, 12-year-old Kendric Comer became the first person in the U.S. to receive gene therapy, which takes many months of hospital visits and involves chemotherapy. 

 

SCD patients also have other approved treatments, including ongoing blood transfusion and blood and bone marrow transplants. Along with these treatments, Texas is also trying to create more equity for SCD patients. In September 2023, the Texas legislature passed House Bill 1488 by Rep. Toni Rose (D-Dallas). The bill aims to strengthen SCD education for physicians, including emergency medicine physicians, by working collaboratively with state specialty societies and using data to identify opportunities for improved health outcomes.

According to the National Heart, Lung and Blood Institute, more than 70,000 Americans and over 6,000 persons in Texas have sickle cell disease. Approximately 3 million Americans have sickle cell trait, which is common among individuals of African ancestry, but it can also occur in individuals of Mediterranean, Middle Eastern, Asian Indian, and Hispanic heritage as well as other ethnicities.

 

It’s estimated that about half of people affected by SCD are enrolled in Medicaid and 11% are enrolled in Medicare. Texas is one of 10 states that has not extended Medicaid coverage to working-age adults and parents. If not severe enough, patients with SCD often find themselves between – not sick enough to qualify for disability-related Medicaid coverage but too sick to work full-time, where they might obtain employer-based coverage.

 

While there’s hope for SCD patients with the new gene therapy treatments, one of the biggest challenges is getting more people of color and, especially the Black community to donate blood in larger quantities. People with sickle cell disease have stiff and distorted red blood cells that can block blood vessels. Blood transfusions can help treat severe complications like strokes, leg ulcers, and acute chest syndrome. The transfusions also allow SCD patients to have some normalcy.

This month and beyond, the American Red Cross is hosting over 500 blood drives nationwide to encourage more African Americans to donate blood. As many as 50 units of blood and up to 25 units of platelets may be needed for a single patient undergoing gene therapy for sickle cell disease. Patients undergoing gene therapy will need the support of blood and platelet transfusions before, during, and post treatment.

 

For patients with sickle cell disease, blood donors who are Black are almost three times more likely to be a match for the blood most often needed compared with donors who are not Black. Since 2021, the Red Cross has taken significant steps to increase the number of Black blood donors with its Sickle Cell Initiative. One in 3 African American blood donors is a match for people with sickle cell disease. Since the launch of the initiative, the number of first-time African American blood donors giving with the Red Cross has grown to more than 108,000 ­­­­­— helping to strengthen and diversify the blood supply while reversing the trend of declining donors overall for this group. Additionally, through this work, the Red Cross has provided more than 224,000 sickle cell trait screenings to donors who self-identify as African American, Black, or multiracial.

 

During Sickle Cell Awareness Month, from Sept. 16-30, donors will receive a $15 e-gift card to their merchant of choice. To schedule a blood donation appointment today, visit RedCrossBlood.org, use the Blood Donor App, or call 1-800-RED CROSS.