Florida patients of color face barriers to transplants and donors
BY MARGO SNIPE
TAMPA BAY TIMES/TNS
At 3 a.m., Imeria Price and Jordan Washington got up to take their 8-year-old son to the emergency room.
Jakobe had fallen ill earlier that day at a baseball tournament in Georgia, so they returned home to Punta Gorda.
At first, his symptoms resembled a typical infection. Sore throat. Swollen lymph nodes. Fatigue. Then came the blood-red spots on his mouth.
From the hospital, a helicopter flew Jakobe to Johns Hopkins All Children’s Hospital in St. Petersburg, a 25-minute ride. His parents trailed behind, a two-hour car journey ahead of them, unsure what would come next.
A doctor called them about halfway through the drive that August morning. The diagnosis wasn’t confirmed, but the team was almost certain Jakobe had leukemia.
When Price and Washington arrived at All Children’s, about a dozen doctors crowded their son’s bedside. Wires and lines ran out from his body like he was Spiderman, Washington said.
Within hours, Jakobe underwent three surgeries — they placed a central line leading to his heart, then used it to replace bad blood cells and added another line in his upper arm for long-term IV use.
The next day, he began chemotherapy. Due to the pandemic, only one parent at a time could be with him. He was handling it well, his parents said.
They drove from home to the hospital daily. Then right after Thanksgiving, doctors said chemotherapy was no longer working.
A bone marrow transplant was Jakobe’s last option.
When doctors tell the family of a minority patient that they will need a bone marrow transplant, “no one tells you how limited that hope is or how small it is,” said Debiann McIntosh, community engagement specialist at the Icla da Silva Foundation.
The New York-based organization supports patients with blood cancers and recruits people to donate bone marrow.
McIntosh said she can’t talk about Jakobe’s story without crying.
Keeping Jakobe alive
Ever since his family learned he needed a transplant to stay alive, they have been hosting registry drives to find a donor.
Thousands of people have registered under Jakobe’s name, but “as of yet,” his mother said, “none of them are for him.”
When accessing the worldwide pool of 30 million volunteer donors who have joined bone marrow registries, Black Americans have just over a 20 percent chance of finding a match compared to white counterparts, who have a nearly 80 percent chance, according to Dr. Michael Nieder, medical director of blood and marrow transplant at Tampa’s Moffitt Cancer Center.
The chances for patients who are Hispanic, Asian or Pacific Islander hover around 40 percent.
And since the matching process involves many genes that affect millions of tissue types, the chances for people of color dwindle as their ethnic background grows more complex.
Put another way, Nieder can often find multiple genetic matches for his White patients, while some Black patients turn up none.
Advances in technology have improved the odds over the last five years, allowing doctors to use halfmatch donors — usually a parent, sibling or child of the patient whose tissue is only half-identical. But that hasn’t eliminated the gaps.
While half-matches can push the likelihood for a transplant from 23 percent to 70 percent for Black Americans, “for White people, it’s nearly 99 percent,” Nieder said.
Black patients face similar gaps when it comes to blood transfusions for sickle cell anemia and organ transplants.
Three factors are at play for a successful bone marrow transplant, said Erica Jensen, a senior vice president at Be The Match, the largest registry in the world.
One is whether any matches come up in the registry. Another is finding a willing donor and getting them to follow through. The third is resolving any issues standing in the way, like finances, scheduling or connecting donors to doctors.
‘Greatest waiting list’
Amid the pandemic, the number of new registrants has decreased 40 percent compared to a typical year, as hundreds of efforts across the country to increase donor pools shut down.
Now, Be The Match is resuming some of its registry drives — like one held last month in Tampa for Jakobe — with COVID-19 safety precautions. Those who wish to register from home can order a swabbing kit to be delivered.
It’s “the world’s greatest waiting list,” said Jensen. Often, “the donor is as impacted as the patient themselves.”
Washington, Jakobe’s dad, said it’s hard to go to sleep and push through every day knowing his son doesn’t have a match. Neither parent is a match, nor are Jakobe’s brother and sister, who are half siblings.
Doctors had wanted to complete the transplant in early March, his mother said. With that deadline passed, the need for a donor is urgent.
“It’s sad to know that my child being African American has less of a chance than a child of a different race,” Washington said.
Jakobe, he said, likes working with Legos and putting things together. He dreams of becoming an aerospace engineer.
“He’s got a very bright future,” Washington said. “All we can do is be strong for our child.”
Others, too, are working on behalf of Jakobe and patients like him.
Sickle cell matches
Sickle cell disease, which is inherited, affects about 100,000 people in the United States, according to the American Society of Hematology. For those with severe cases, the average life expectancy is 30 years shorter than those without it.
The disease is most common among people of African descent, Hispanics from Central and South America, and those of Middle Eastern, Asian, Indian and Mediterranean descent. One in 12 African Americans carry a sickle cell gene, according to the society.
Similar to blood marrow donation, sickle cell patients must match blood types with donors.
About 1 percent of Black Americans donate blood, meaning 4 percent of the supply is African American, said Susan Forbes, senior vice president of public relations at OneBlood.
The nonprofit is responsible for providing blood to hospitals across most of Florida and other parts of the Southeast.
Seventy percent of the supply is White.
The disparity comes down to mistrust in medicine among minority communities and lack of awareness around how vital donations from diverse groups are to patients’ survival, Forbes said.
While roughly 40 percent of the population is eligible to donate blood, Forbes said, only 10 percent of those do.
“More and more blood is needed for sickle cell patients than ever before because of advances in technology,” she said. It’s “more than providing the right blood type; it’s about providing blood that is genetically similar to theirs.”
First-time Black donors are screened to see if they match a sickle cell patient. Many will be matches, Forbes said. And that blood will go directly to that patient. Extremely rare blood types can be frozen for up to 10 years.
“When someone needs a blood transfusion,” Forbes said, “they can’t wait. They need it.”
Disparities persist in organ transplants as well, although those procedures require less genetic matching than bone marrow donations and sickle cell blood transfusions.
The problem is that the need for organs greatly outweighs the availability, said Ashley Moore, manager of Public Affairs at the LifeLink Foundation, which facilitates tissue and organ donation.
And although the number of Black donors reflects the population, the Black community is overrepresented on waitlists, particularly for kidneys.
Last year, Black patients in Florida made up over 35 percent of kidney transplants from deceased donors and Hispanic patients nearly 30 percent. For both groups, those percentages were higher than their representation in the general population.
White patients made up about 30 percent, despite representing more than half the state’s population, according to LifeLink data.
Experts say increasing the number of donors on registries is the best say to solve persistent disparities.
“Equity is really a justice issue,” said Jensen, of Be The Match. “This is also a way that we can ensure justice in our society and in our culture.”
Margo Snipe is a Health Equity Reporter for the Tampa Bay Times.