Inside the slender gable-front house where he sleeps, plays and studies, Jax Ramirez is never far from danger despite the reassuring small town setting.
Outside, the risks mount. He avoids crowds at all costs; he can’t fly on a plane, ride on a bus or attend school like his peers. His mom, dad and brother mask up whenever they’re in public. Other than medical practitioners, visitors rarely enter their Zelienople home.
But none of these precautions can keep 9-year-old Jax safe from a raging immune system ready to obliterate invading pathogens without regard for the consequences to his own body.
“People walk around with a sniffle, and that sniffle is deadly to us,” said his mom, Missy Ramirez.
Jax was diagnosed at 6 with a rare autoimmune disease, IPEX syndrome, for which the only known cure is a bone marrow transplant. His family has spent the past three years searching relentlessly for a match. Their efforts have added thousands of people to the donor registry and possibly saved other lives — but for Jax, the wait continues.
Complicating his situation, Jax has a diverse genetic makeup, which includes Hispanic of Mexican origin, Brazilian, African and mixed European ancestry.
“With bone marrow transplantation, you have to have a perfect match, so it puts people at a disadvantage if they have mixed heritage,” said Dr. Clive Callender, a transplant surgeon at Howard University who spearheaded efforts to diversify the country’s organ donor pool in the 1980s.
According to NMDP, a nonprofit advocating for donor registration, white patients in need of bone marrow have a 79% chance of finding a match, while the odds for Black patients are just 29%. Native American, Latino and Asian or Pacific Islander patients fall in the middle.
In Jax’s case, doctors have told the family: “To find his match is like winning the lottery.”
Highest need, lowest registration
For many common transplants — such as kidneys and livers — race is not a major factor in determining a match. But disparities manifest in other ways.
After studying under Pittsburgh’s acclaimed Dr. Thomas Starzl in the 1980s, Callender returned to Washington, D.C., eager to develop the services at Howard University’s transplant center. His attention, though, soon turned to a stubborn imbalance within his discipline.
“I learned that the majority of the people waiting on transplants were Black but very few of the delegates were Black,” he said.
“It seemed to me it was clear that we needed to do something about it.”
Genetic predispositions to high blood pressure and diabetes, along with lifestyle factors stemming from poverty and other outcomes of marginalization, mean Black Americans are overrepresented on the donor waiting lists. And while kidney matches are frequently made between different races, Callender felt the best way to increase lifesaving transplants was to mobilize the Black community.
He convened town halls around D.C. to explore the barriers and possible solutions, and secured federal funds to build programming around his findings. Out of that, he founded the National Minority Organ/Tissue Transplant Education Program [MOTTEP] in 1991.
When he began, Black Americans represented just 3% of all donors nationally.
Callender’s research highlighted five underlying reasons: lack of information; religious misperceptions; historic racism perpetuated in medicine; fear over medical risks; and resistance to giving up an organ for someone of another race.
MOTTEP’s approach was to mobilize experts who could immerse themselves in communities and persuade people of the benefits of donating organs through education and careful listening.
“It’s all about having people that care to come in and show that they care and educate and empower you to become part of the solution to the problem,” Callender said.
By 2010, fewer than 20 years after MOTTEP was founded, donation rates had tripled among the Black community nationwide, although Callender said the work remains far from complete.
“The real issue is to get donors regardless of ethnicity,” Callender said. “I don’t believe we’ll ever get to the point where we’ll have enough human organs.”
Local supply and demand
The disparities in Pittsburgh’s transplant economy largely mirror the country as a whole.
Black and Latino patients are overrepresented among the approximately 1,800 patients awaiting transplants at Pittsburgh-area hospitals.
Local data is not available for living and deceased donors, according to Katelynn Metz, communications director for CORE, the government-recognized organ procurement organization serving Western Pennsylvania and West Virginia. But statewide data shows a predominance of white donors in line with national trends.
Since 2019 in Pennsylvania, about 75% of the 3,759 organ procurements have come from white donors, 14% from Black donors and 9% from Latino donors. The vast majority of living donors in the state since 2019 have been white.
Despite elevated needs among the Black community, nearly 70% of organ transplants conducted during the past five years have extended the lives of white Pennsylvanians, while less than 20% went to Black patients.
Pittsburgh resident George McClure, who has relied on three transplants since he was first diagnosed with kidney disease in 2002, said some of this reflects the privileged circumstances necessary for accepting a transplant.
Those without a caretaker or transportation, those without medical insurance or those otherwise unable to pay ongoing medical costs are simply ruled out from the start, he said.
“And the list goes on and on … and most of the people we’re talking about are African American,” McClure said.
Hospitals: ‘The place you go to to die’
Other barriers rest on attitudes and perception shaped by centuries of discrimination.
“African-American people do not trust health systems,” McClure said. “When I was younger, my parents and grandparents, they all thought of hospitals as the place you go to to die.”
The historical mistreatment of people of color is well documented across the medical industry, tainting the insurance marketplace as well as the availability and provision of care. Higher poverty and unemployment rates among many minority groups further diminish health care access within a privatized insurance market.
Within the narrower scope of transplants, a fundamental inequity persisted in how kidney recipients were prioritized from the 1986 formation of the United Network for Organ Sharing until revisions were introduced in 2012.
By then, “A system that was discriminatory toward African Americans was made less discriminatory,” Callender said.
Ieesha Johnson, president of the Association for Multicultural Affairs in Transplantation, said she sometimes finds herself in a delicate position in advocating for the medical system while acknowledging its harms.
Johnson’s work in communities often exposes her to harrowing stories of injustice — sometimes dating back generations.
“We have to acknowledge it, we have to accept that it happens, and we have to be honest with our communities about what it means to bring change,” she said.
Since receiving his sister’s kidney in 2007, McClure has thrown himself into organ donor advocacy, but he says it's lonely work in Pittsburgh.
“In terms of advocating for kidney disease, I’m one of the few Black men out there in Pittsburgh hitting the streets trying to educate people on kidney disease,” McClure said.
Sidney Harper, CORE’s multicultural outreach coordinator, said she often finds herself the only Black representative at regional events promoting transplants.
“There’s still a lot of work to do in the system.” But through showing up, listening and pointing to the stakes, Harper said she has seen results. “I go into the community and I can change their minds now and then.”
Growing Latino community
Obstacles to receiving and donating organs vary across minority populations, Johnson said. For Latino and Hispanic communities, language access and complications surrounding immigration are looming concerns.
As Pittsburgh’s Latino population grows, CORE’s outreach efforts are pivoting to meet new needs by partnering with organ procurement organizations in communities with established Latino populations to learn about effective ways of engagement, Metz said. First steps involve translating their web and print materials into Spanish.
Daniela Alcántara, Casa San Jose’s community health and wellness coordinator, said many Latinos in Pittsburgh avoid needed health care altogether.
Language barriers can prevent even routine appointment scheduling, she said. Meanwhile, unstable jobs lacking insurance and tenuous immigration circumstances also discourage people from seeking the care they need.
“Everything is connected,” Alcántara said. “And related to all these themes is the economic part.”
‘A road to a cure’
Despite the need for relative seclusion, careful blood sugar regulation and frequent medical intervention, Jax enjoys many characteristic interests of a preteen boy. He races radio cars with his younger brother, Lincoln, rides shotgun in his dad’s off-road Jeep and kayaks with the entire family at the ravines around McConnells Mill State Park.
He’s also a music enthusiast with a fondness for Ozzy Osbourne. “I’ve always been into rock ’n’ roll,” he mused. “I don’t know how it started.”
Jax's parents continue searching for ways to let him continue enjoying guitars and fast cars.
Jax has been in and out of hospitals since a walk-in clinic visit for a presumed cold led to a diabetes diagnosis, a finding of erratic blood sugar levels and a rush to an emergency room. He was 2. From there followed more hospital visits and mystery ailments that eventually found diagnoses in IPEX syndrome and several less severe conditions.
“The child was just so sick,” Missy said. “Minor sicknesses would blossom into something outrageous.”
Bone marrow donation is less invasive than giving a kidney or liver, but requires several days of light recovery. Prospective donors can register online to receive a test kit in the mail from the National Marrow Donor Program. Once the sample is processed, the donor’s genetic type is added to the database. Donors are only contacted once a match is made with someone on the waitlist.
In early April, Missy got a call that extended a glimmer of hope. It was a team from Stanford University offering to test Jax for a novel treatment that could eliminate the need for a transplant, if the family could pay for a private plane (to avoid exposure to infections) and three months’ accommodation in San Francisco.
The community stepped in, according to Missy. A friend of a friend offered the use of a private business jet, and a GoFundMe campaign to raise the remaining costs has so far raised more than $12,000 of a $35,000 goal.
In addition to the costs, relocating her family for three months presents logistical challenges. And even then, the outlook remains indefinite.
“At the end of the day,” Missy said, “we could come back and it didn’t work; we could come back and it did work; we could come back and find it worked for a little bit to buy time for a match to happen. Or, it could be a road to a cure.”
Jamie Wiggan is deputy editor at PublicSource and can be reached at jamie@publicsource.org
This story was fact-checked by Delaney Rauscher Adams.
The Jewish Healthcare Foundation has contributed funding to PublicSource’s healthcare reporting.
