Low blood supply hampers sickle cell treatment efforts

Red Cross makes push for African American blood donors.

Two people laugh in a kitchen.
Mama Toure talks with her 16-year-old son Ibrahim Camara in the kitchen of their home in St. Cloud, Minn., on Oct. 18. Camara's sickle cell disease has caused him to need a hip replacement and use a wheelchair to get around. He aspires to be an attorney and a Supreme Court justice.
Evan Frost | MPR News

Ibrahim Camara is 16. He wants to study at Harvard Law School, and one day serve as a Supreme Court justice. Camara likes reading graphic novels and classes in school like science and language arts.  But after school, he’s often tired and he needs to rest, stretched out underneath a blanket on the couch.

Camara has sickle cell disease, which affects his organs, his energy levels and his mobility. There are days when sickle cell causes extreme pain and discomfort. 

“On a really, really bad day I can't breathe,” he said. “I can't move without feeling heavy amounts of pain. And anything I do will get me in pain.”

Camara, who lives in St. Cloud, Minn., with his mom, brothers and sister, is one of millions of people who have this genetic blood disorder in which red blood cells are bent, like sickles. 

Those abnormally shaped cells can stick to the walls of blood vessels, causing blockages and reducing the flow of oxygen to organs throughout the body. Patients experience it as fatigue, and episodes of extreme pain — called crises. Over time, these crises can lead to organ damage and life-threatening strokes or lung infections. 

Camara’s disease has caused avascular necrosis — a condition that has resulted in severe damage to his hip bone. He uses a wheelchair to get around.

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Black blood donors needed

Dr. David Mair is a chief medical officer for the Red Cross. Sickle cell disease, he said, disproportionately affects people of African descent. It’s passed down from generation to generation and many people don’t know they are carriers of sickle cell disease until their children are born with the disorder.

Patients may need blood transfusions throughout their lives. Mair said a significant portion of the blood that sickle cell patients receive comes from the Caucasian population, but doctors are likely to find closer matches that can better treat sickle cell patients who rely on repeated blood transfusions within the Black community. 

“Matching for those substances on red cells is kind of comparable to finding a bone marrow match,” Mair said. “You're more likely to find that kind of match within your same ethnic group.”

The Red Cross is trying to triple the amount of African American donors across their donation system by the end of 2025.

One of the barriers for sickle cell patients to getting full treatments, Mair said, is a lack of blood donors. Donations have diminished during the pandemic. 

So earlier this fall, the Minnesota chapter of the Red Cross launched an initiative to seek more donors, with a blood drive at Fellowship Missionary Baptist Church in Minneapolis.

Blood Drive at Fellowship Missionary Baptist Church in north Minneapolis.
Dr. David Hamlar prepares to donate blood during a sickle cell disease blood drive on Sept. 25 at Fellowship Missionary Baptist Church in north Minneapolis. Close to 60 people attended the drive to donate for the cause, which was sponsored by the church and Omega Psi Phi Epsilon Rho, a Black fraternity.
Brooklynn Kascel for MPR News

”This is a five-year initiative,” said University of Minnesota Dr. David Hamlar. He joined others who came to donate blood. “So it's not just a one and done. We're not going to do this this year and stop.”

Among the donors were Ronnie King, dressed from head to toe in purple to represent a partnering Black fraternity chapter, Omega Psi Phi Epsilon Rho. Black Nurses Rock was also a sponsor.

A group of people move equipment out of a vehicle.
Red Cross employees set up before the start of a sickle cell disease blood drive on Sept. 25 at Fellowship Missionary Baptist Church.
Brooklynn Kascel for MPR News

The donation drive at Fellowship Missionary Baptist Church was a great success, said James Burroughs, a vice president at Children’s Minnesota and a Red Cross board member. 

He said Black donors came out in higher numbers at the church blood drive than at previous events.

Burroughs knows how important blood donation is for people who have the disease, like his daughter Teresa.

“I remember vividly when she was about 4 years old, she had to be hospitalized at Children's and I was out of town, and we [would] say our prayers every night together, and her mom had to put her on the phone, video phone, and we said it together,” said Burroughs. “But she was in so much pain because of her sickle cell and lack of oxygen to her blood. She just was crying during her prayers, and just was in a lot of pain.”

Burroughs said Teresa is now 9 years old and often helps others better understand sickle cell disease. 

“She loves to give hugs, loves to talk to people. … She always talks about how she is fighting sickle cell,” said Burroughs. “She knows a lot about it and can explain the disease. But she doesn't let it stop her at all.”

Rae Blaylark is the founder of the Sickle Cell Foundation of Minnesota, one of the organizations partnering with the Red Cross. She said the blood drive is a way for members of the Black community to directly help each other. 

“We have to be able to not just talk about what makes us all the same as in our humanity.  But we can also talk about the pieces of our ethnicity that make us different in very beneficial ways,” she said.  “And giving blood, particularly for individuals living with sickle cell disease is one of those ways.” 

Camara’s wish

Back in St. Cloud, Ibrahim Camara is waiting for dinner. His mom, Mama Toure, is in the kitchen making rice with plantains, egg, meat and vegetables for Camara and his siblings. 

Two children lean on their mother in the kitchen.
Mama Toure prepares dinner in her kitchen with her children, 17-year-old Nene Camara (center) and 10-year-old Madani Camara in St. Cloud on Oct. 18. Toure and her five children all have sickle cell disease of varying severity.
Evan Frost | MPR News

Toure immigrated from Guinea years ago and works at a local bank. All of her children have sickle cell disease, though Camara is among the most affected.

Toure speaks French and English with the children as she cooks. They call out to Camara, laughing and asking him to help them settle on the correct English translation of a French word. Camara translates, and praises his mom’s cooking. 

“She makes the best rice in the world,” he said. 

Then Camara thinks for a moment about what he would want if he could have anything.

“Money,” he said at first, smiling and joking. 

And then he said, “A cure to sickle cell, because if I'm going to get [a cure], everyone's going to get it. Yeah. Like the cure to sickle cell would be the greatest thing I could ever wish for.”

Until there is a cure for sickle cell disease, Camara and others will continue to need blood transfusions when they experience crises. The Red Cross will continue to carry out blood drives. 

Minnesotans can check their eligibility and schedule appointments to donate blood through a mobile phone app or online.