Their stories are broken into two parts: before and after. First, there were the lengthy years of misery that filled every aspect of life—education, relationships, and employment. Following torturous treatments, what felt like a miracle of life following sickle cell disease (SCD).
Two Americans who have had their lives transformed by newly approved therapies tell AFP that they want others to benefit as well.
However, the exorbitant cost—up to $3.1 million per course of treatment—may limit access for other individuals.
‘Like coming to life’
Tesha Samuels was born in 1982, shortly before the development of prenatal screening for SCD, an inherited red blood cell condition.
SCD affects around 100,000 people in the United States and 20 million worldwide.
The majority of people with the illness are black. According to scientists, the sickle cell trait evolved to protect persons exposed to malaria, which increases the risk of SCD.
Those with the condition have defective hemoglobin, the oxygen-carrying molecule, which causes their red cells to be rigid and C-shaped, similar to sickles.
Anemia, severe pain, organ damage, and premature death are all potential complications.
Tesha was diagnosed at the age of two and recalls spending her childhood in and out of the hospital.
She experienced a life-threatening bout of anemia when she was seven, and then she had a stroke at the age of 13, necessitating monthly blood infusions.
Tesha stated that “the stigma of a Black child going to the hospital saying they’re in pain” caused her to wait until the situation became unbearable.
Tesha witnessed the disease claim the life of a beloved friend named Mohammed, a fellow “sickle cell warrior” who was frequently admitted to the same hospital as her.
She enrolled at the prestigious Howard University, wanting to become a doctor, but her health prompted her to abandon out. She tried community college again, but SCD meant she couldn’t finish.
“You downgrade your dreams based on your capacity in sickle cell,” said Tesha.
As a newlywed in her twenties, she was shocked to learn that she would need an intravenous medication flow for eight hours every night to control her condition.
However, in 2018, her life took a turn when she became one of the first people to get experimental gene therapy.
The treatment, now known as Lyfgenia, employs a modified virus to deliver a functional form of the hemoglobin-producing gene.
First, doctors extract stem cells from the bone marrow and alter them in a lab. Then follows the most difficult part: chemotherapy to prepare for the return of the treated cells.
Tesha lost all of her hair as a result of chemotherapy, and she also suffered a 16-hour nosebleed that required her to be in intensive care.
Her recuperation was delayed further by the fact that her blood platelets, which are required for blood clotting, took months to regenerate.
But once they did, her energy levels skyrocketed.
“It’s almost like coming to life,” Tesha said. “Here’s this new life ahead of you. What do I want to do with it?”
Tesha went back to school to complete her degree.
She also started her own advocacy group, Journey to ExSCellence, to spread word of the treatment among the Black community.
“It looks like the cure, but we like to call this ‘transformative,’” said physician-scientist John Tisdale of the National Institutes of Health, which ran the trial Tesha took part in.
Tisdale emphasized that each patient needed monitoring for 15 years to complete the study.
Childhood struggle
Jimi Olaghere’s first memory of sickle cell disease dates back to when he was eight years old, playing soccer with other children in his native Nigeria and having to stop every five minutes for rest and drink.
“I asked my mom, why am I different?” he remembers.
His parents transferred him to live with his aunt in New Jersey, where he received better medical care, but his childhood remained difficult.
Jimi, 38, was unable to complete college and felt his sickness to be too much of a burden for most love partners, until he met his wife, who was eager to take on the challenge.
The sickness also had a severe toll.
His gallbladder was removed, and he experienced a heart attack and lung clots. At his worst, he admits to spending 80 percent of his time in bed.
Moving to Atlanta’s warmer environment provided some respite, as it does for many with SCD.
Then, in 2019, he learned of a CRISPR gene therapy clinical trial. He applied to be tested for eligibility and received a “magical” voicemail informing him he was accepted.
Jimi is “basically living the dream now” as a result of the CRISPR-modified stem cell therapy he got, known as Casgevy.
He has three children thanks to IVF and owns numerous small enterprises.
Jimi, like Tesha, has used his platform to advocate for others, particularly in Africa, where access to such treatment appears to be a distant dream.
Tisdale of the National Institutes of Health stated that the next step would be to reduce the physical burden of the treatment and make it more affordable.
It is unknown how much private insurance will pay to cover the procedure’s hefty expenses.
However, Medicaid, a US government-backed insurance program, has stated that it will cover the medicines beginning next year.