This text is a part of “On Borrowed Time” a collection by Anissa Durham that examines the folks, insurance policies, and programs that harm or assist Black sufferers in want of an organ transplant. This story is copublished with The Markup.
Youngsters aren’t speculated to wrestle to breathe.
However two years in the past, Micah Clayborne, a then-active 13-year-old center faculty tennis participant, knew one thing was fallacious. Nonetheless, he pushed via the signs — persistent sweating and shortness of breath — for six months earlier than lastly telling his dad and mom. They rushed their son to the hospital. Inside days, docs identified Micah with Danon illness — a genetic situation that thickens the guts muscle.
His coronary heart was failing — and he was dying.
Inside weeks, docs added his identify to the nationwide coronary heart transplant ready record. He ranked second in line. His birthday handed. After which, 10 months later, he lastly obtained his new coronary heart. Now 15, Micah says the expertise modified how he sees life — and opened his eyes to the toll it takes to be on a transplant wait record.
“Not everybody will get transplants typically,” Micah says. “Getting a transplant has proven me the way it’s affected different folks.”
Micah was certainly one of 1000’s of People annually who unexpectedly discover themselves needing an organ transplant. Final yr marked a brand new report in transplantation, with 48,000 People receiving a brand new organ. However there’s nonetheless a scarcity of organs. And about 17 folks die day by day ready for a transplant.
In Phrase In Black’s “On Borrowed Time,” collection, we’ve explored why there may be a lot distrust amongst Black people towards the organ donation course of, what boundaries block their entry to care and the fairness and moral points surrounding organ donation. We additionally put a highlight on the Black lives modified via the transplant system.
We’ve compiled a listing of 10 frequent questions and well-informed solutions to assist clarify the method of organ donation, procurement, and transplantation. Right here’s what specialists shared with us.
1. What does it imply to be a registered organ donor?
A registered organ donor is somebody who has determined that, once they die, their organs or tissue could also be donated to somebody in want. Donors can determine which organs they wish to donate, and any grownup can register. Folks below 18 can register with a guardian or authorized guardian’s consent.
There are a number of locations the place adults can register. Any native Division of Motor Autos service location, via a neighborhood organ procurement group, or the Donate Life America nationwide registry. Some states even allow you to enroll whilst you register to vote. Should you register as an organ donor after you’ve been issued a driver’s license or state identification card, you received’t routinely be issued a brand new one. So not everybody who’s registered will instantly have the donor icon on their state-issued ID.
Immediately, about 170 million People have registered as donors. Except you take away your identify from a donor registry, organ donation is legally binding — even when your loved ones objects. State legal guidelines observe the Uniform Anatomical Reward Act, which protects an individual’s proper to donate after dying.
2. Who wants an organ transplant?
Greater than 105,000 persons are on the nationwide transplant ready record as of 2025 and about 92,000 of them want a kidney. Black People make up the second largest group of individuals on the wait record, with roughly 32,000 folks ready for a kidney transplant.
3. What are OPOs?
Organ procurement organizations, or OPOs, are nonprofit entities in every state accountable for recovering organs from deceased donors. The federal authorities oversees 54 OPOs nationwide via two federal companies within the U.S. Division of Well being and Human Companies: the Facilities for Medicare & Medicaid Companies (CMS) and the Well being Sources and Companies Administration (HRSA).
In 2020, CMS up to date the necessities OPOs should meet to obtain Medicare and Medicaid funds. Each 4 years, CMS evaluates and ranks OPOs and locations them in certainly one of three tiers based mostly on their efficiency. These within the lowest tier lose certification. The present recertification cycle ends on July 31, 2026.
4. How are organs allotted for transplantation?
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The U.S. Organ Procurement and Transplantation Community, or OPTN, managed by UNOS — the United Community for Organ Sharing, a nonprofit group which performs a key function in allocating organs. A pc system matches donors and recipients, filtering out anybody who doesn’t meet the factors — mismatched blood sort, top or weight, or immune system incompatibility matching for a kidney or pancreas.
Organs can solely survive for a short while after elimination from the donor. They’ll’t be frozen or saved for days or even weeks. As a result of they expire rapidly, a transplant can solely happen when the recipient is inside a sure distance of the donor. Precedence goes to recipients nearer to the donor’s hospital.
Congress handed the Nationwide Organ Transplant Act in 1984, which prohibits the sale of human organs and established OPTN to handle organ allocation and nationwide registries. The legislation aimed to handle the scarcity of organs out there and enhance the matching course of.
Alexandra Glazier, professor of well being coverage at Brown College and president and CEO of New England Donor Companies, which runs an OPO, says a part of her work targeted on reforming the usage of designated service areas, or DSAs. These geographic zones, outlined by OPTN, had been initially used to find out the allocation of organs — that means, organs had been first supplied to candidates inside the donor’s DSA. However, opponents of the system argued, this typically missed candidates who had been sicker and elevated inequities. Now, the system makes use of a 250 nautical mile circle across the donor hospital as the first means for allocation, a system that has its personal critics.
“We’re in a second of flux in these reforms. We have now the chance to do higher,” Glazier says. “We’re higher than we had been with among the disparities I used to be targeted on, however we want the suggestions and knowledge to be frequently evaluated … in direction of that aim of enchancment.”
UNOS generates a ranked record of potential recipients for every organ. OPOs then share detailed medical details about the donor with transplant groups. Finally, it’s as much as the surgeon who is obtainable an organ to just accept it for his or her affected person.
5. Is it true physicians received’t work as arduous to save lots of my life if I’m a registered donor?
A standard perception in Black and Brown communities is that in case you are a registered donor and you find yourself within the hospital in essential situation, physicians may minimize corners or let you die to “harvest” your organs. However a number of key info present why it is a delusion.
Should you die earlier than attending to the hospital, your organs can’t be used for transplant. Viable organs require oxygen and blood movement as much as the purpose of elimination. On common, only one% of individuals die in a manner that enables them to be an organ donor.
As a result of most donated organs come from deceased donors, very particular circumstances should happen for somebody to qualify. The 2 most important kinds of dying that enable organ donation are mind dying — when a affected person’s coronary heart is thrashing however a doctor has declared them mind lifeless — and donation after circulatory dying, when a affected person is taken off life assist, the guts stops, and the affected person is asserted lifeless.
The Emergency Medical Therapy and Labor Act is a federal legislation that requires docs to deal with and stabilize sufferers, no matter insurance coverage standing. When somebody arrives in essential situation, physicians are anticipated to do every part attainable to save lots of them. Usually, emergency room docs don’t even know whether or not a affected person is a registered donor.
If a affected person is close to dying, a separate group, like one offered by an organ procurement group, manages organ restoration. There are practically 5,000 hospital emergency departments within the U.S., however solely about 250 transplant facilities to which donated organs should be moved.
6. What number of Black People are registered organ donors?
Donate Life America, which has entry to the nationwide organ donor registry, doesn’t monitor knowledge on race and ethnicity. A number of states acquire this demographic info, however it’s nonetheless non-obligatory for a person to supply this info.
In a current survey carried out by Phrase In Black, we requested 1,588 Black People about their attitudes, behaviors, and motivations round organ donation. When requested, “Which of the next finest describes your present organ donor registration standing?” practically 50% mentioned they’re registered organ donors. About one in 4 mentioned they aren’t registered, and both don’t plan to register or wish to study extra about it. One other 8.5% mentioned they had been beforehand registered however are not.
7. Have racial bias and disparities performed a task in organ transplantation?
Dr. Joseph Keith Melancon, director of transplantation on the George Washington College Hospital, is a kidney and pancreas transplant surgeon. He says that greater than 20 years in the past, when he started his profession, the system wasn’t as equitable as it’s at present, for just a few causes.
Because the late Seventies, laptop algorithms have matched organ donors with recipients. However these programs are inclined to biases that contribute to or exacerbate the present racial disparities in organ allocation. In 2003, the United Community for Organ Sharing, or UNOS, led a course of to rewrite the kidney transplant algorithm to handle fairness points.
“I believed it was really happenstance that the system was discriminatory as a result of I believed it was organic,” Melancon says. “Over time, guidelines had been modified to make entry higher for Black folks.”
Black persons are practically 4 instances extra prone to develop kidney failure than white folks, and greater than one-third of dialysis sufferers are Black. On common, dialysis facilities make wherever from $35,000 to $150,000 per affected person per yr from Medicare or personal insurance coverage reimbursements. And for many years, some docs did not refer their principally Black sufferers for transplants — although kidney transplantation is cheaper than dialysis.
In 2019, President Donald Trump launched the Advancing American Kidney Well being initiative and signed an govt order that created a brand new cost system for kidney remedy. 5 new cost fashions, launched by the Facilities for Medicare and Medicaid Companies, incentivize clinicians to concentrate on preventive care and kidney transplants and shift away from facility-based dialysis. Medicare Half B is now required to pay for immunosuppressive drugs for the lifetime of a kidney transplant recipient.
“Some persons are shocked once I inform them that equitable entry to transplant elevated throughout the first Trump administration greater than it did throughout the Obama administration or the Biden administration,” Melancon says. “So this was a ‘win-win-win’ type of laws.”
8. Why are organs discarded?
Annually, about 28,000 donated organs are discarded nationwide, in accordance with the U.S. Organ Donation and Transplantation System. Kidneys are discarded essentially the most, although they’re additionally essentially the most in-demand organ.
Though organ procurement organizations recuperate organs, hospitals make the ultimate name on whether or not to just accept a donated organ. Among the most typical causes organs get discarded embody high quality considerations, logistical challenges, and transplant middle requirements. Many transplant surgeons don’t wish to settle for an organ that doesn’t meet their hospital’s requirements, or that they really feel isn’t the most effective match for his or her sufferers. If one surgeon declines, the organ is obtainable to the following candidate’s transplant group.
Melancon mentioned some donors are categorized as higher-risk, for instance, older sufferers with extra comorbidities like diabetes or hypertension. If no surgeons settle for their donated kidneys, they are going to find yourself discarded.
“Our main accountability is to our sufferers; transplant surgeons are reluctant to make use of kidneys that will not work nicely,” Melancon says.
9. How does insurance coverage protection play a task in who will get an organ transplant?
Within the U.S., folks with out medical health insurance not often make it to the transplant wait record or obtain an organ transplant. Out-of-pocket prices vary from $1.6 million for a brand new coronary heart to $409,000 for a pancreas transplant. Medical health insurance determines entry to care, placement on the wait record, surgical procedure, and post-transplant anti-rejection remedy.
However, a deceased donor doesn’t want medical health insurance — highlighting a deep injustice within the organ transplantation system. Poor, uninsured folks can donate an organ, however they often can’t obtain a transplant even when they want it.
LaVarne Burton, president of the American Kidney Fund, explains the twofold problem with dwelling donation. Of the 92,000 People on the kidney transplant record, roughly 27,000 are Black People. Most will obtain a kidney transplant from deceased donors.
An organ from a dwelling donor is healthier, however transplanting it entails important social and monetary dangers for donors. For instance, dwelling donors could face insurance coverage denials, increased premiums for all times, incapacity, and long-term care insurance coverage, and there aren’t any federal protections in opposition to job loss from a donation-related go away.
In July, Congress handed the “One Large Lovely Invoice Act,” a sprawling tax measure that reaches deep into the nation’s social and environmental security nets, together with reshaping applications like Medicaid and Medicare. The Heart for American Progress estimates that the legislation will end in $490 billion in cuts to Medicare from 2027 to 2034. About 60% of grownup kidney transplant recipients depend on Medicare protection.
“All through our existence, we’ve labored with each administration and each political social gathering,” Burton says. “We’re coping with life and dying right here. People who find themselves in kidney failure are at a really excessive danger of dying. We wish to do every part we are able to to ensure they’ve entry to care.”
10. What sort of authorities oversight does the organ donation and transplant system have?
The Division of Well being and Human Companies, or HHS, oversees a number of organizations that oversee the organ donation and transplantation system. These embody the Facilities for Medicare and Medicaid Companies, which oversees OPOs.
HHS additionally oversees the Well being Sources and Companies Administration, which oversees the Organ Procurement and Transplantation Community. OPTN operates below a federal contract managed by UNOS.
Consequently, UNOS enforces oversight via a peer overview course of managed by the Membership and Skilled Customary Committee. The committee critiques functions for membership in OPTN, critiques recognized dangers to affected person security, and evaluates OPTN members by offering suggestions and proposals to enhance efficiency, compliance, and high quality.
“This space of well being care has an excessive quantity of oversight,” says Glazier, who beforehand served as a committee member on the MPSC board. “It’s nonetheless a human course of, so it’s by no means going to be good, however in comparison with different elements of our medical system, there may be lots of oversight.”
Anissa Durham reported this story as one of many 2025 U.S. Well being System Reporting fellows supported by the Affiliation of Well being Care Journalists and the Commonwealth Fund. The Commonwealth Fund additionally helps Phrase In Black’s well being reporting.
