This text is a part of “On Borrowed Time” a collection by Anissa Durham that examines the folks, insurance policies, and methods that harm or assist Black sufferers in want of an organ transplant.
Bobby Trustworthy V is dying.
He doesn’t know what is going to kill him first: the tumor in his mind, his failing coronary heart, the an infection in his left ventricular help machine, or one more Medicaid denial.
The 38-year-old Silver Spring, Maryland, resident — a musician and the fifth man in his household to bear his identify — lives on a month-to-month $1,400 state incapacity verify. Unable to afford lease, he crashes in a good friend’s basement.
“I’m technically homeless with a mailing handle,” Trustworthy V says. His entire life, he at all times held two jobs at a time. He labored on the College of Richmond, was a full-time brewer, performed in cowl bands, and was married. After which he acquired sick and “misplaced all the pieces.”
Trustworthy V, his moniker of alternative, is likely one of the hundreds of thousands of Individuals whose lives rely upon Medicaid, the joint federal and state program that helps cowl medical prices for low-income folks, in addition to older adults, and people with disabilities, like failing organs. On the tempo his physique is deteriorating, he could not survive for lengthy.
In July, Congress handed the “One Large Stunning Invoice Act” — President Donald Trump’s signature laws that considerably defunds and reshapes help packages, together with Medicare and Medicaid. In response to the nonpartisan Congressional Price range Workplace, it should slash $1.02 trillion of federal spending on Medicaid and the Kids’s Well being Insurance coverage Program. In consequence, by 2034, an estimated 16 million Individuals are anticipated to lose entry to those packages.
“They simply need you to die,” Trustworthy V says. “Between the federal government, insurers, and well being care suppliers, everybody’s simply pointing the finger at one another.”
Medicaid denials have been routine for him lengthy earlier than OBBBA grew to become regulation. Final yr, he certified for Social Safety Incapacity Insurance coverage (SSDI), which robotically triggered a 24-month ready interval for Medicare. However the clock is ticking: if he doesn’t get a coronary heart transplant earlier than his Medicaid runs out in December 2026, he received’t be capable to afford the almost $2 million process.
If there’s a choice happening, I deliver wealthy white folks with me.
Bobby devoted v
Nowadays, he spends his time enjoying guitar and bass to the sound of his battery-powered coronary heart. “It’s a really miserable place to be in life,” Trustworthy V says. However his music is the one factor retaining him going — that and the prospect of a brand new coronary heart.
Midway throughout the nation in Houston, Brandon Jerrod — who identifies as nonbinary and makes use of they/them pronouns — can also be racing in opposition to time. Like Trustworthy V, Jerrod is Black, has a quickly weakening coronary heart, earns subsequent to no earnings, and is preventing for his or her life.
In February 2024, docs recognized them with congestive coronary heart failure. They are saying some of the highly effective issues they skilled was a Black girl physician telling them, “There was nothing I may do to forestall this as a result of it’s a genetic marker. It’s not as a result of I used to be fats, it’s not as a result of I used to be lazy.”
In January, Jerrod was rushed to the hospital when their coronary heart was performing at solely 15% capability. Bedridden and swollen with fluid, they have been too weak to eat or stand. Inside two weeks, docs started deliberating whether or not Jerrod wanted a coronary heart transplant.
“I misplaced 260 kilos of fluid,” they are saying. Jerrod came upon the fluid had been build up of their physique for years. “It made me take into consideration all of the years I’ve been going to the docs and saying one thing’s not proper.”
What’s Occurring With Medicaid?
Each Trustworthy V and Jerrod are ready for a similar factor: a coronary heart transplant. And each have needed to struggle to take care of Medicaid protection. Greater than 71 million Individuals are enrolled in Medicaid, and many of the federal and state spending on the healthcare plan is on people with disabilities and the aged. About one in 4 adults lives with a incapacity, in response to the Facilities for Illness Management and Prevention. Roughly 15 million of those of us get their medical insurance protection via Medicaid.
Most Individuals cycle via eligibility certifications, denials, appeals, and wrongful terminations — bureaucratic hurdles that resolve who will get care and who doesn’t. However these obstacles don’t have an effect on everybody equally.
In response to a latest evaluation of federal information by the NAACP, 13.3 million African Individuals — 32% of the Black inhabitants — depend on Medicaid. That quantity contains almost 60% of Black kids and greater than a 3rd of older Black adults. Such disproportionate reliance on Medicaid means Black individuals are extra topic to the whims of the system. And if you happen to don’t have insurance coverage or the money to pay out of pocket for care, you’re not getting on a transplant checklist.
Akeiisa Coleman, senior program officer for Medicaid coverage on the nonprofit Commonwealth Fund, says, because of OBBBA, all the grownup Medicaid inhabitants is vulnerable to shedding protection or dealing with new obstacles to care — particularly in states that expanded protection underneath the Reasonably priced Care Act. Up to now, 40 states and Washington, D.C., have adopted the ACA’s Medicaid enlargement.
Technically, Coleman says, there isn’t any language in OBBBA that mandates folks to lose protection. However the Trump administration’s soon-to-be-implemented coverage adjustments will definitively affect Individuals’ skill to get and keep coated via Medicaid.
The regulation additionally mandates states so as to add work necessities by Dec. 31, 2026. Adults on Medicaid will likely be required to log no less than 80 hours every month at a job, performing group service, attending faculty, collaborating in a piece program, or a mixture of those actions. Folks thought-about medically frail are exempt, however every state will decide who will get that classification. The Facilities for Medicare and Medicaid Companies is required to situation steerage on exemptions to states by June 2026.
“Persons are going to be excluded from this system primarily based on these insurance policies. And a few folks could inappropriately lose protection,” Coleman says. “There’s going to be vital variation throughout states on how they implement these statutes.”
Trustworthy V says he spends six hours a day making an attempt to maintain himself alive — altering his bandages, taking medicine, making an attempt to bathe together with his LVAD, and wrangling with the well being care system. For completely disabled folks like him, it’s not possible to work part-time to take care of medical insurance. The brand new regulation additionally doubles Medicaid eligibility certification to twice a yr, beginning Jan. 1, 2027 — a change that would result in extra paperwork, delayed protection, and even gaps in protection for folks preventing to remain alive.
The Actuality of Racial Bias in Transplantation
In 2018, the United Community for Organ Sharing overhauled the U.S. coronary heart allocation system to cut back disparities, shorten waitlist instances, and prioritize critically ailing sufferers. However in response to a March 2025 journal article, racial disparities proceed to have an effect on Black and Hispanic transplant hopefuls.
Black folks signify 28% of people that want organ transplants and make up the most important minority in want of 1. In contrast with white Individuals, research have discovered Black sufferers are 10% much less more likely to obtain a coronary heart transplant, but have a 14% increased danger of post-transplant loss of life. And the info reveals Black Individuals wait longer for organ transplants, are much less more likely to be positioned on transplant lists, and infrequently face bias in how docs assess their ache and signs.
“I’ve requested extra of my prosperous or white pals to come back with me [to the doctor’s office] as a result of I get handled otherwise,” Trustworthy V says. “They wouldn’t even take into account me for transplantation till I had my sibling with me, who may be very effectively spoken and educated. If there’s a choice happening, I deliver wealthy white folks with me. Docs hearken to them, however they received’t hearken to me.”
The Trump administration’s insurance policies are usually not solely chopping Medicare and Medicaid, but additionally gutting and reshaping federal businesses in methods that may have life-altering results on susceptible minority sufferers and well being care entry. A ProPublica evaluation discovered that the Division of Well being and Human Companies has misplaced about 18% of its workforce, the CDC reduce 15% of its employees, and the Trump administration terminated greater than 1,400 analysis grants.
In Might, they reduce funding for a Nationwide Institutes of Well being-backed venture that Dr. Anthony Watkins, surgical director of the kidney and pancreas transplant program at Tampa Basic Hospital, spent two years making an attempt to deliver to life. His equity-based analysis initiative aimed to extend entry to transplants for Black sufferers.
“Our grant acquired terminated due to the brand new administration,” Watkins says.
For Watkins, the lack of funding isn’t nearly his personal analysis. It represents a setback to the broader struggle for racial fairness in organ transplantation. The African American Transplant Entry Program, pioneered at Northwestern Drugs, focuses on the obstacles Black sufferers in Chicago expertise to get on the kidney transplant waitlist.
Watkins and his workforce deliberate to make use of AATAP as a blueprint, increasing it right into a nationwide mannequin that will assist Black sufferers throughout the nation. Now, he worries about what the longer term holds.
“It’s going to be attention-grabbing to see how a few of these coverage adjustments additional exacerbate these underlying points,” he says. With out analysis like his now-defunded venture, it’ll be harder “to get extra perception and assist to deal with these challenges.”
The Nicer the Room, the Worse You’re Doing
In 2012, Trustworthy V started lactating. He says his physician on the time instructed him it was odd, however to not fear about it. Then he gained 100 kilos — what he now jokingly calls “being pregnant weight.”
It wasn’t till 2019 that docs lastly examined his hormone ranges. They discovered his degree of prolactin — the hormone that stimulates breast milk manufacturing after childbirth — was the identical as a pregnant girl’s. Subsequent exams confirmed he had prolactinoma, a mind tumor on the pituitary gland that may set off irregular hormone manufacturing.
“So for 3 years we handled it with oral meds, Cabergoline, and we thought it went away,” he says. “I name my mind tumor Tammy. It turned out, Tammy was nonetheless there, and Tammy was nonetheless going.”
In Dec. 2023, on his thirty seventh birthday, Trustworthy V. was admitted to MedStar Georgetown College Hospital, and instructed he was in end-stage coronary heart failure. Docs have been unclear if the prolactinoma triggered his coronary heart to deteriorate.
“I’ve realized the arduous method, the nicer the room you have got, the more serious you’re doing,” Trustworthy V says. “I used to be alone on my birthday, alone on Christmas, and alone via the New 12 months’s. I used to be simply crying in my room. I didn’t have insurance coverage on the time, so I used to be making use of for Medicaid.”
The hospital discharged Trustworthy V on Jan. 17, 2024. He says employees instructed him they couldn’t do anything for him with out medical insurance protection.
When requested usually whether or not the hospital discharges sufferers for lack of insurance coverage, a spokesperson responded by e-mail: “MedStar Georgetown doesn’t discharge sufferers from ongoing care because of lack of insurance coverage protection. Throughout the postoperative interval, sufferers are supplied with schooling for wound care and if wanted, preparations are made for residence well being companies to help with ongoing care wants.”
Three months later, Trustworthy V nonetheless didn’t have Medicaid when he landed again at MedStar for a proper coronary heart catheterization, a process that measures coronary heart operate. Docs found he was in cardiogenic shock, a life-threatening medical emergency the place the guts can’t correctly pump blood and oxygen to the remainder of the physique. Trustworthy V says they carried out the catheterization on March 18, with out requesting fee. The next day, docs got here to his hospital room and instructed him he wanted a left ventricular help machine, or LVAD — a mechanical pump that helps the guts flow into blood — or he would die.
For 10 days, he lay in a hospital mattress, hooked as much as machines that saved him alive. Trustworthy V says that inside hours of lastly securing Medicaid protection, docs rushed him into emergency surgical procedure to implant the LVAD.
“It took three months to get Medicaid,” he says. “I used to be actually dwelling on a thread, hoping I acquired insurance coverage earlier than I died.”
‘Cuts to Medicaid are Direct Assaults on Disabled Folks’
President Lyndon B. Johnson created each Medicare and Medicaid in 1965 as a part of his Nice Society initiatives — packages meant to remove poverty, handle racial injustice, and create social security nets. President Barack Obama expanded these security nets to hundreds of thousands extra Individuals with the ACA. Now that Trump’s OBBBA is regulation, advocates warn Medicaid denials may develop into the norm, not the exception.
“Cuts to Medicaid are direct assaults on disabled folks,” says Dom Kelly, president and CEO of New Disabled South, a coverage and legislative advocacy group that works in 14 Southern states. He says Black disabled of us will seemingly bear the brunt of federal funding cuts caused by OBBBA. The work necessities, he says, are unreasonable for people who find themselves neurodivergent, dwelling with a incapacity, or managing power sickness.
“It provides extra of a burden and makes it deeply dangerous to a inhabitants of disabled folks,” he says.
In August, the Nationwide Well being Legislation Coverage Program referred to as the adjustments “the harshest work requirement coverage ever enacted” and warned of a “devastating” impact on folks with disabilities. Analysis reveals that work necessities don’t enhance employment however as a substitute drive excessive numbers of eligible folks off Medicaid due to paperwork and system failures. Anybody who loses Medicaid as a result of they fail to satisfy work necessities can even be barred from receiving well being care subsidies underneath the ACA — primarily leaving them with out entry to budget-friendly medical insurance.
Black Individuals have lengthy had higher-than-average charges of power illness resulting from disparities in earnings and schooling, restricted entry to medical insurance, housing, and wholesome meals, and the “weathering” of racism-related stress. Kelly says the Trump administration’s cuts to Medicaid will deepen well being inequities and worsen well being outcomes for Black of us.
“We dwell in a rustic that doesn’t worth folks’s lives. It devalues [life] a lot that disabled folks and individuals who want organ transplants … are seen as expendable. It’s horrific,” Kelly says. “It’s horrible to suppose that individuals are going to die ready for organs as a result of we reduce Medicaid to cite unquote lower your expenses.”
Officers at The Facilities for Medicare and Medicaid Companies pushed again in opposition to that critique.
In an e-mail, a spokesperson mentioned the company “rejects the premise that insurance policies within the Working Households Tax Cuts Act are supposed to hurt folks with disabilities.” As an alternative, “CMS’ implementation is centered on safeguarding protection for eligible people and sustaining Medicaid for the long run.” They emphasised that not one of the coverage adjustments take impact instantly: “For instance, work necessities is not going to be carried out till 2027.”
Disabled and Uninsured. The place Do Sufferers Go?
It’s been 5 months since Jerrod final noticed a heart specialist. They misplaced their job in April, and with it, their UnitedHealthcare insurance coverage. In a single day, entry to major care or specialty care vanished. As an alternative, they’re left on the mercy of what they will afford to pay out of pocket.
“I’ve acknowledged the correlation of stress with my situation,” they are saying. To maintain themselves calm and centered, they follow Hoodoo, a set of African American non secular and therapeutic traditions.
“I lean into pleasure a lot simpler,” they are saying. “I’m at all times dancing. I acquired my one-legged twerk again. So it’s a dramatic enchancment from not having the ability to raise my leg” resulting from stage 4 edema.
Jerrod says there are fewer days after they really feel like their situation is “whooping” them and their physique feels stronger. However they actually don’t know how effectively their coronary heart is functioning.
On prime of decimating Medicaid, OBBBA included $186 billion in cuts to the Supplemental Vitamin Help Program. Jerrod receives a month-to-month SNAP profit, however with out entry to insurance coverage or funds to purchase meals, they fear about their survival.
“That is terrifying. I’m a authorities that’s trying me within the face and so they’re saying ‘your life doesn’t matter,’” Jerrod says. “And Child, I do know my life has worth.”
With out insurance coverage, Jerrod should choose and select which medicine they will afford to take. Docs prescribed three medication — Eliquis, Entresto, and Jardiance — to deal with coronary heart failure or atrial fibrillation. Every 30-day provide ranges from $606 to $875. Jerrod hasn’t taken any of them in months, since they will’t afford it. It’s already a battle to pay about $150 every month for different prescriptions they take.
Since their analysis, Jerrod estimates they’ve racked up greater than $100,000 in medical debt from hospital stays, telehealth visits, and prescriptions. To remain afloat, they lean on bank cards and occasional crowdfunding campaigns.
“I’ve confronted my very own mortality a number of instances,” they are saying. “There have been instances the place, shit, I used to be able to go. If it wasn’t for my group, I might not be right here.”
After shedding their job, Jerrod utilized for Medicaid — and was denied a month later. They instantly appealed and utilized once more. To assist with appeals, Jerrod now makes use of ChatGPT to tailor the language of their claims. A latest Pew Analysis Middle survey discovered that 41% of adults aged 30 to 49 have used ChatGPT, and like Jerrod, many search assist navigating the well being care system. A 2025 Drip Hydration survey discovered that 31% of adults who flip to AI use it to assist put together questions for physician visits, and 17% use it to keep away from perceived well being care bias.
Jerrod and Trustworthy V know a single denial can imply the distinction between life and loss of life. To even qualify for a coronary heart transplant, Trustworthy V should meet strict necessities, together with a physique mass index of lower than 35. A aspect impact of his mind tumor and coronary heart failure led to vital weight acquire. Docs advisable he take a GLP-1 medicine, akin to Ozempic or Wegovy — however Medicaid denied the prescription. As an alternative, one yr to the day after his LVAD surgical procedure, on March 28, 2025, he underwent Medicaid-approved bariatric surgical procedure.
The day after the surgical procedure, D.C. Medicaid dropped his protection. Trustworthy V says a MedStar Hospital social employee instructed him he misplaced his advantages as a result of he was accredited for SSDI. In consequence, he says, hospital employees instructed him to go away despite the fact that he had an open wound on his stomach.
When requested if, normally, a affected person can be discharged in the event that they underwent surgical procedure at MedStar and misplaced insurance coverage protection inside days of the surgical procedure, a hospital spokesperson replied, “No, medical care can be accomplished after which the affected person would safely be discharged primarily based on the doctor’s steerage.”
A number of weeks after leaving the hospital, Trustworthy V says a invoice arrived for the burden loss surgical procedure, plus fees for his coronary heart failure and mind tumor medicine.
He additionally turned to AI to assist with appeals to the Medicaid workplace and the SSDI workplace. His struggle with them lasted six weeks. With out ChatGPT Professional guiding his responses, he says, it’s unclear how lengthy it might’ve taken him to revive his protection.
Now, after a transfer to Maryland, Trustworthy V has new state Medicaid protection. He hopes to get on the transplant checklist at Johns Hopkins College Hospital as a substitute of MedStar Hospital. He nonetheless depends on AI chatbots to stroll him via his first spherical of coronary heart transplant evaluations and the maze of insurance coverage paperwork.
“The highway to transplant shouldn’t be meant for everybody to make it,” Trustworthy V says. “It feels just like the Starvation Video games. I’m a wise, succesful particular person with household and assist, and this has been one of many hardest issues I’ve needed to take care of in my life.”
A System Working as Designed
With new work necessities and extra frequent eligibility evaluations on the way in which, Coleman, the coverage advisor on the Commonwealth Fund, says sufferers like Trustworthy V and Jerrod face an excellent higher danger of shedding protection.
“Sustaining Medicaid protection shouldn’t be at all times a simple, easy, and easy course of. Generally there are many hoops to leap via,” she says. “It might probably occur that folks fall via the cracks and must advocate for themselves to take care of their protection.”
In an equitable society, Jerrod says they might be capable to get the care they want. The truth that they will’t is “not a bug, it’s a function.”
In his good friend’s basement, Trustworthy V is surrounded by musical devices, “which feels like a godsend, but it surely nearly appears like purgatory,” he says. “I can’t do something, I can’t actually go anyplace. I’m simply caught right here making music.”
He simply desires what many Individuals need: a steady earnings, to spend time together with his family and friends, and youngsters of his personal. However the fact is easy and brutal: And not using a new coronary heart, his days are numbered.
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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.
This story was fact-checked by Phrase In Black’s editorial workforce utilizing medical data or different documentation supplied by sources and thru verifying particulars with specialists.
