The cruelest kind of heartbreak

Bobby Faithful V is dying.

He doesn't know what will kill him first: the tumor in his brain, his failing heart, the infection in his left ventricular assist device, or yet another Medicaid denial.

The 38-year-old Silver Spring, Maryland, resident — a musician and the fifth man in his family to bear his name — lives on a monthly $1,400 state disability check. Unable to afford rent, he crashes in a friend's basement.

"I'm technically homeless with a mailing address," Faithful V says. His whole life, he always held two jobs at a time. He worked at the University of Richmond, was a full-time brewer, played in cover bands, and was married. And then he got sick and "lost everything."

Faithful V, his moniker of choice, is one of the millions of Americans whose lives depend on Medicaid, the joint federal and state program that helps cover medical costs for low-income people, as well as older adults, and those with disabilities, like failing organs. At the pace his body is deteriorating, he may not survive for long.

In July, Congress passed the "One Big Beautiful Bill Act" — President Donald Trump's signature legislation that significantly defunds and reshapes assistance programs, including Medicare and Medicaid. According to the nonpartisan Congressional Budget Office, it will slash $1.02 trillion of federal spending on Medicaid and the Children's Health Insurance Program. As a result, by 2034, an estimated 16 million Americans are expected to lose access to these programs.

"They just want you to die," Faithful V says. "Between the government, insurers, and health care providers, everyone's just pointing the finger at each other."

Medicaid denials have been routine for him long before OBBBA became law. Last year, he qualified for Social Security Disability Insurance (SSDI), which automatically triggered a 24-month waiting period for Medicare. But the clock is ticking: if he doesn't get a heart transplant before his Medicaid runs out in December 2026, he won't be able to afford the nearly $2 million procedure.

These days, he spends his time playing guitar and bass to the sound of his battery-powered heart. "It's a very depressing place to be in life," Faithful V says. His music is the only thing keeping him going — that and the prospect of a new heart.

Halfway across the country in Houston, Brandon Jerrod — who identifies as nonbinary and uses they/them pronouns — is also racing against time. Like Faithful V, Jerrod is Black, has a rapidly weakening heart, earns next to no income, and is fighting for their life.

In February 2024, doctors diagnosed them with congestive heart failure. They say one of the most powerful things they experienced was a Black woman doctor telling them, "There was nothing I could do to prevent this because it's a genetic marker. It's not because I was fat, it's not because I was lazy."

In January, Jerrod was rushed to the hospital when their heart was functioning at only 15% capacity. Bedridden and swollen with fluid, they were too weak to eat or stand. Within two weeks, doctors began deliberating whether Jerrod needed a heart transplant.

"I lost 260 pounds of fluid," they say. Jerrod found out the fluid had been building up in their body for years. "It made me think about all the years I've been going to the doctors and saying something's not right."

What's Going on With Medicaid?

Both Faithful V and Jerrod are waiting for the same thing: a heart transplant. And both have had to fight to maintain Medicaid coverage. More than 71 million Americans are enrolled in Medicaid, and most of the federal and state spending on the healthcare plan is on individuals with disabilities and the elderly. About one in four adults lives with a disability, according to the Centers for Disease Control and Prevention. Roughly 15 million of these folks get their health insurance coverage through Medicaid.

Most Americans cycle through eligibility certifications, denials, appeals, and wrongful terminations — bureaucratic hurdles that decide who gets care and who doesn't. But these obstacles don't affect everyone equally.

According to a recent analysis of federal data by the NAACP, 13.3 million African Americans — 32% of the Black population — rely on Medicaid. That number includes nearly 60% of Black children and more than a third of older Black adults. Such disproportionate reliance on Medicaid means Black people are more subject to the whims of the system. And if you don't have insurance or the cash to pay out of pocket for care, you're not getting on a transplant list.

Akeiisa Coleman, senior program officer for Medicaid policy at the nonprofit Commonwealth Fund, says, thanks to OBBBA, the entire adult Medicaid population is at risk of losing coverage or facing new barriers to care — especially in states that expanded coverage under the Affordable Care Act. To date, 40 states and Washington, D.C., have adopted the ACA's Medicaid expansion.

Technically, Coleman says, there is no language in OBBBA that mandates people to lose coverage. But the Trump administration's soon-to-be-implemented policy changes will definitively impact Americans' ability to get and stay covered through Medicaid.

The law also mandates states to add work requirements by Dec. 31, 2026. Adults on Medicaid will be required to log at least 80 hours each month at a job, performing community service, attending school, participating in a work program, or a combination of these activities. People considered medically frail are exempt, but each state will determine who gets that classification. The Centers for Medicare and Medicaid Services is required to issue guidance on exemptions to states by June 2026.

"People are going to be excluded from the program based on these policies. And some people may inappropriately lose coverage," Coleman says. "There's going to be significant variation across states on how they implement these statutes."

Faithful V says he spends six hours a day trying to keep himself alive — changing his bandages, taking medication, trying to shower with his LVAD, and wrangling with the health care system. For permanently disabled people like him, it's not feasible to work part-time to maintain health insurance. The new law also doubles Medicaid eligibility certification to twice a year, starting Jan. 1, 2027 — a change that could lead to more paperwork, delayed coverage, or even gaps in coverage for people fighting to stay alive.

The Reality of Racial Bias in Transplantation

In 2018, the United Network for Organ Sharing overhauled the U.S. heart allocation system to reduce disparities, shorten waitlist times, and prioritize critically ill patients. But according to a March 2025 journal article, racial disparities continue to affect Black and Hispanic transplant hopefuls.

Black people represent 28% of people who need organ transplants and make up the largest minority in need of one. Compared with white Americans, studies have found Black patients are 10% less likely to receive a heart transplant, yet have a 14% higher risk of post-transplant death. And the data shows Black Americans wait longer for organ transplants, are less likely to be placed on transplant lists, and often face bias in how doctors assess their pain and symptoms.

"I've asked more of my affluent or white friends to come with me [to the doctor's office] because I get treated differently," Faithful V says. "They wouldn't even consider me for transplantation until I had my sibling with me, who is very well spoken and knowledgeable. If there's a decision going on, I bring rich white people with me. Doctors listen to them, but they won't listen to me."

The Trump administration's policies are not only cutting Medicare and Medicaid, but also gutting and reshaping federal agencies in ways that will have life-altering effects on vulnerable minority patients and health care access. A ProPublica analysis found that the Department of Health and Human Services has lost about 18% of its workforce, the CDC cut 15% of its staff, and the Trump administration terminated more than 1,400 research grants.

In May, they cut funding for a National Institutes of Health-backed project that Dr. Anthony Watkins, surgical director of the kidney and pancreas transplant program at Tampa General Hospital, spent two years trying to bring to life. His equity-based research initiative aimed to increase access to transplants for Black patients.

"Our grant got terminated because of the new administration," Watkins says.

For Watkins, the loss of funding isn't just about his own research. It represents a setback to the broader fight for racial equity in organ transplantation. The African American Transplant Access Program, pioneered at Northwestern Medicine, focuses on the barriers Black patients in Chicago experience to get on the kidney transplant waitlist.

Watkins and his team planned to use AATAP as a blueprint, expanding it into a national model that would help Black patients across the country. Now, he worries about what the future holds.

"It's going to be interesting to see how some of these policy changes further exacerbate these underlying issues," he says. Without research like his now-defunded project, it'll be tougher "to get additional insight and help to address these challenges."

The Nicer the Room, the Worse You're Doing

In 2012, Faithful V began lactating. He says his doctor at the time told him it was odd, but not to worry about it. Then he gained 100 pounds — what he now jokingly calls "pregnancy weight."

It wasn't until 2019 that doctors finally tested his hormone levels. They found his level of prolactin — the hormone that stimulates breast milk production after childbirth — was the same as a pregnant woman's. Subsequent tests confirmed he had prolactinoma, a brain tumor on the pituitary gland that can trigger abnormal hormone production.

"So for three years we treated it with oral meds, Cabergoline, and we thought it went away," he says. "I call my brain tumor Tammy. It turned out, Tammy was still there, and Tammy was still going."

In Dec. 2023, on his 37th birthday, Faithful V. was admitted to MedStar Georgetown University Hospital, and told he was in end-stage heart failure. Doctors were unclear if the prolactinoma caused his heart to deteriorate.

"I've learned the hard way, the nicer the room you have, the worse you're doing," Faithful V says. "I was alone on my birthday, alone on Christmas, and alone through the New Year's. I was just crying in my room. I didn't have insurance at the time, so I was applying for Medicaid."

The hospital discharged Faithful V on Jan. 17, 2024. He says staff told him they couldn't do anything else for him without health insurance coverage.

When asked generally whether the hospital discharges patients for lack of insurance, a spokesperson responded by email: "MedStar Georgetown does not discharge patients from ongoing care as a result of loss of insurance coverage. During the postoperative period, patients are provided with education for wound care and if needed, arrangements are made for home health services to assist with ongoing care needs."

Three months later, Faithful V still didn't have Medicaid when he landed back at MedStar for a right heart catheterization, a procedure that measures heart function. Doctors discovered he was in cardiogenic shock, a life-threatening medical emergency where the heart can't properly pump blood and oxygen to the rest of the body. Faithful V says they performed the catheterization on March 18, without requesting payment. The following day, doctors came to his hospital room and told him he needed a left ventricular assist device, or LVAD — a mechanical pump that helps the heart circulate blood — or he would die.

For 10 days, he lay in a hospital bed, hooked up to machines that kept him alive. Faithful V says that within hours of finally securing Medicaid coverage, doctors rushed him into emergency surgery to implant the LVAD.

"It took three months to get Medicaid," he says. "I was literally living on a thread, hoping I got insurance before I died."

'Cuts to Medicaid are Direct Attacks on Disabled People'

President Lyndon B. Johnson created both Medicare and Medicaid in 1965 as part of his Great Society initiatives — programs meant to eliminate poverty, address racial injustice, and create social safety nets. President Barack Obama expanded those safety nets to millions more Americans with the ACA. Now that Trump's OBBBA is law, advocates warn Medicaid denials could become the norm, not the exception.

"Cuts to Medicaid are direct attacks on disabled people," says Dom Kelly, president and CEO of New Disabled South, a policy and legislative advocacy organization that works in 14 Southern states. He says Black disabled folks will likely bear the brunt of federal funding cuts brought about by OBBBA. The work requirements, he says, are unreasonable for people who are neurodivergent, living with a disability, or managing chronic illness.

"It adds more of a burden and makes it deeply harmful to a population of disabled people," he says.

In August, the National Health Law Policy Program called the changes "the harshest work requirement policy ever enacted" and warned of a "devastating" effect on people with disabilities. Research shows that work requirements don't increase employment but instead drive high numbers of eligible people off Medicaid because of paperwork and system failures. Anyone who loses Medicaid because they fail to meet work requirements will also be barred from receiving health care subsidies under the ACA — essentially leaving them without access to budget-friendly health insurance.

Black Americans have long had higher-than-average rates of chronic disease due to disparities in income and education, limited access to health insurance, housing, and healthy food, and the "weathering" of racism-related stress. Kelly says the Trump administration's cuts to Medicaid will deepen health inequities and worsen health outcomes for Black folks.

"We live in a country that does not value people's lives. It devalues [life] so much that disabled people and people who need organ transplants … are seen as expendable. It's horrific," Kelly says. "It's horrible to think that people are going to die waiting for organs because we cut Medicaid to quote unquote save money."

Officials at The Centers for Medicare and Medicaid Services pushed back against that critique.

In an email, a spokesperson said the agency "rejects the premise that policies in the Working Families Tax Cuts Act are intended to harm people with disabilities." Instead, "CMS' implementation is centered on safeguarding coverage for eligible individuals and sustaining Medicaid for the long term." They emphasized that none of the policy changes take effect immediately: "For example, work requirements will not be implemented until 2027."

Disabled and Uninsured. Where Do Patients Go?

It's been five months since Jerrod last saw a cardiologist. They lost their job in April, and with it, their UnitedHealthcare insurance. Overnight, access to primary care or specialty care vanished. Instead, they are left at the mercy of what they can afford to pay out of pocket.

"I have recognized the correlation of stress with my condition," they say. To keep themselves calm and centered, they practice Hoodoo, a set of African American spiritual and healing traditions.

"I lean into joy so much easier," they say. "I am always dancing. I got my one-legged twerk back. So it's a dramatic improvement from not being able to lift my leg" due to stage four edema.

Jerrod says there are fewer days when they feel like their condition is "whooping" them and their body feels stronger. But they really have no idea how well their heart is functioning.

On top of decimating Medicaid, OBBBA included $186 billion in cuts to the Supplemental Nutrition Assistance Program. Jerrod receives a monthly SNAP benefit, but without access to insurance or funds to buy food, they worry about their survival.

"This is terrifying. I'm looking at a government that's looking me in the face and they're saying 'your life does not matter,'" Jerrod says. "And Baby, I know my life has value."

Without insurance, Jerrod must pick and choose which medication they can afford to take. Doctors prescribed three drugs — Eliquis, Entresto, and Jardiance — to treat heart failure or atrial fibrillation. Each 30-day supply ranges from $606 to $875. Jerrod hasn't taken any of them in months, since they can't afford it. It's already a struggle to pay about $150 each month for other prescriptions they take.

Since their diagnosis, Jerrod estimates they have racked up more than $100,000 in medical debt from hospital stays, telehealth visits, and prescriptions. To stay afloat, they lean on credit cards and occasional crowdfunding campaigns.

"I've faced my own mortality several times," they say. "There were times where, shit, I was ready to go. If it wasn't for my community, I would not be here."

After losing their job, Jerrod applied for Medicaid — and was denied a month later. They immediately appealed and applied again. To help with appeals, Jerrod now uses ChatGPT to tailor the language of their claims. A recent Pew Research Center survey found that 41% of adults aged 30 to 49 have used ChatGPT, and like Jerrod, many seek help navigating the health care system. A 2025 Drip Hydration survey found that 31% of adults who turn to AI use it to help prepare questions for doctor visits, and 17% use it to avoid perceived health care bias.

Jerrod and Faithful V know a single denial can mean the difference between life and death. To even qualify for a heart transplant, Faithful V must meet strict requirements, including a body mass index of less than 35. A side effect of his brain tumor and heart failure led to significant weight gain. Doctors recommended he take a GLP-1 medication, such as Ozempic or Wegovy — but Medicaid denied the prescription. Instead, one year to the day after his LVAD surgery, on March 28, 2025, he underwent Medicaid-approved bariatric surgery.

The day after the surgery, D.C. Medicaid dropped his coverage. Faithful V says a MedStar Hospital social worker told him he lost his benefits because he was approved for SSDI. As a result, he says, hospital staff told him to leave even though he had an open wound on his abdomen.

When asked if, in general, a patient would be discharged if they underwent surgery at MedStar and lost insurance coverage within days of the surgery, a hospital spokesperson replied, "No, medical care would be completed and then the patient would safely be discharged based on the physician's guidance."

Several weeks after leaving the hospital, Faithful V says a bill arrived for the weight loss surgery, plus charges for his heart failure and brain tumor medication.

He also turned to AI to help with appeals to the Medicaid office and the SSDI office. His fight with them lasted six weeks. Without ChatGPT Pro guiding his responses, he says, it's unclear how long it would've taken him to restore his coverage.

Now, after a move to Maryland, Faithful V has new state Medicaid coverage. He hopes to get on the transplant list at Johns Hopkins University Hospital instead of MedStar Hospital. He still relies on AI chatbots to walk him through his first round of heart transplant evaluations and the maze of insurance paperwork.

"The road to transplant is not meant for everyone to make it," Faithful V says. "It feels like the Hunger Games. I'm a smart, capable individual with family and support, and this has been one of the hardest things I've had to deal with in my life."

A System Operating as Designed

With new work requirements and more frequent eligibility reviews on the way, Coleman, the policy advisor at the Commonwealth Fund, says patients like Faithful V and Jerrod face an even greater risk of losing coverage.

"Maintaining Medicaid coverage is not always an easy, simple, and straightforward process. Sometimes there are lots of hoops to jump through," she says. "It can happen that people fall through the cracks and have to advocate for themselves to maintain their coverage."

In an equitable society, Jerrod says they would be able to get the care they need. The fact that they can't is "not a bug, it's a feature."

In his friend's basement, Faithful V is surrounded by musical instruments, "which sounds like a godsend, but it almost feels like purgatory," he says. "I can't do anything, I can't really go anywhere. I'm just stuck here making music."

He just wants what many Americans want: a stable income, to spend time with his friends and family, and children of his own. But the truth is simple and brutal: Without a new heart, his days are numbered.

Anissa Durham reported this story as one of the 2025 U.S. Health System Reporting fellows supported by the Association of Health Care Journalists and the Commonwealth Fund. The Commonwealth Fund also supports Word In Black's health reporting.

This story originally appeared here and was fact-checked by Word In Black's editorial team using medical records or other documentation provided by sources and through verifying details with experts.

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