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Victoria Gray of Forest, Mississippi, isn’t like most who suffer with sickle cell disease. Nearly four years after receiving an experimental gene-editing treatment through technology known as CRISPR, Gray doesn’t have a single symptom from the disease many believe to be incurable.
“I would never have been able to walk this long before,” Gray said while sightseeing through Trafalgar Square in London with NPR reporters. “It’s a huge difference — night and day. I feel like I got a second chance.” The 37 year old recently detailed her experience at the Third International Summit on Human Genome Editing in London.
Meredith Rizzo/NPR
Affecting 1 in 13 Black Americans each year, the genetic disorder causes blood cells to become deformed, with the sickle-shaped cells causing excruciating and unpredictable bouts of pain.
For decades, the medical community failed to adequately research the disease. Currently, the main treatments include blood transfusions or rare, dangerous bone marrow transplants. Yet with the invention of CRISPR (Clustered Regularly Interspaced Short Palindromic Repeats), Victoria Gray’s story is offering hope to the millions of families with sickle cell.
“God did his part for what I prayed about for years,” Gray said. “And together, hand in hand, God and science worked for me.”
A cure for sickle cell disease?
CRISPR is a one-time treatment that alters the DNA in the blood cells and reprograms the body to stop producing the sickle-shaped cells that obstruct oxygen flow and cause extreme pain or severe fatigue to young and old patients. The body instead goes back to making the type of healthy blood cells produced in the womb.
It works by removing stem cells from the patient’s body and using CRISPR technology to alter the gene before putting them back in the body.
Not everyone in the sickle cell community shares enthusiasm for the experimental treatment. In a previous interview with The Black Wall Street Times, the executive director of Oklahoma-based Supporters of Families with Sickle Cell Disease, Velvet Brown-Watts, detailed concerns.
“Would the person still have the DNA of their family down the line? If my son did that, would he still be carrying the same bloodline,” Brown-Watts said, listing questions community members have asked her about the new CRISPR treatment. Yet she remains optimistic as more treatments for sickle cell have been announced in the past decade than in the past 50 years.
“I’m excited about all the new different therapies coming down the pipeline because now it does give patients living with sickle cell options,” Brown-Watts said.
A miracle story
Victoria Gray, a Walmart cashier, wife and mother of four, received the treatment on July 2, 2019. She hasn’t experienced a debilitating symptom since, marking an incredible achievement in the medical world for a disease that disproportionately impacts people of African descent.
Orlando Gili for NPR
CRISPR has been used on hundreds of patients with genetic disorders, but Victoria Gray was the first sickle cell survivor in the world to utilize the genetic remapping technology.
“During this hospital stay, with a ketamine infusion in one arm and a Dilaudid infusion in the next — but still no pain relief — I called all the doctors into the room and told them I could no longer live like this,” Gray told an audience in London about a moment she felt might be her last. “I went home and continued to pray, and looked to God for answers.”
She said her prayers were answered when she entered into a study for CRISPR.
“The life that I once felt like I was only existing in, I am now thriving in,” she told the assembled scientists, doctors, bioethicists and others, NPR reported. “I stand here before you today as proof that miracles still happen — and that God and science can coexist.”