Dying to Donate, Waiting to Live: The Crisis No One Is Fixing

Miami’s failed OPO made headlines, but it's the U.S. transplant system that's terminal.

On September 18, 2025, the U.S. Department of Health and Human Services took the extraordinary step of decertifying the Life Alliance Organ Recovery Agency, an organ procurement organization (OPO) based at the University of Miami. The move followed investigations revealing repeated safety lapses, chronic understaffing, administrative breakdowns, and at least one high-profile case in which a donated heart was rejected by the receiving surgeon due to protocol failures.

The announcement was delivered by Health Secretary Robert F. Kennedy Jr., who has positioned himself as a reformer of a long-neglected corner of U.S. healthcare. Kennedy declared that Life Alliance had “failed to uphold even the most basic standards of care” and that “the gift of life cannot be entrusted to institutions that cut corners with human dignity.” The decision marks one of the first decertifications of its kind—and one of the most aggressive moves yet in a broader push to reform how America manages, allocates, and transports donated organs.

But beneath the headlines, a deeper, more uncomfortable truth is emerging.

This isn’t just about one bad actor in Miami. It’s about the systemic rot hiding in plain sight—an organ donation and transplant system that mirrors everything most broken in American healthcare. This is a crisis not only of oversight, but of equity, geography, poverty, and policy design.

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Profit Without Accountability, Monopoly Without Regulation, Survival Based on Geography

The U.S. organ donation system is made up of 56 federally designated OPOs, each responsible for a specific region. These organizations operate as tax-exempt nonprofits, but in practice, many behave more like government-protected monopolies. Each OPO has exclusive rights to handle organ recovery within its service area. There is no competition, and no incentive to improve, except for the threat of federal decertification, which, until now, has been almost never exercised.

Most OPOs bill hospitals or insurance providers (including Medicare) for organ procurement and recovery services, generating millions in revenue. Executive salaries often top half a million dollars annually. Financial transparency is spotty. Performance standards were, until recently, vague. And despite glaring disparities in how many organs OPOs recover or waste, almost none have faced meaningful consequences for underperformance.

The decertification of Miami’s OPO may be a sign that change is coming, but it also highlights how long failure has been allowed to persist.

Rural America Is Dying and Taking Donors and Recipients With It

If you’re poor, rural, or both, your odds of successfully becoming or receiving an organ donor drop dramatically. And that’s not due to any lack of generosity or need—it’s the result of structural neglect.

Over the past two decades, more than 140 rural hospitals in the U.S. have closed or stopped offering inpatient care. Nearly 700 more are considered at risk. These facilities often lack the staff, ICU capacity, and surgical infrastructure required to support viable donation. Even if someone dies in a medically qualifying way, the window to retrieve their organs—often just hours—may close before a procurement team can arrive, especially if no nearby OPO is properly staffed or equipped.

For patients awaiting transplant, the geographic inequality cuts just as deep. People in rural or under-resourced areas often have to relocate—sometimes hundreds of miles—to remain within rapid access to a transplant hospital. Organ matches can come at any time, often with only hours ’ notice. Some hospitals won’t even list patients unless they can prove they’re living within range.

That means families must uproot their lives, rent temporary housing, leave jobs, and even split households. One recent transplant recipient in Missouri described living for four months in a camper in a hospital parking lot because it was the only way to remain eligible.

And even after a successful transplant, the burden doesn’t end. Patients must remain near their transplant hospital for follow-up biopsies, bloodwork, and emergency care. Immunosuppressive medications are lifelong, and while Medicare covers transplant surgery itself, coverage for these drugs ends 36 months post-op for many recipients. Without continuous coverage, rejection can follow.

So what starts as a medical need becomes a socioeconomic test. Can you afford to move? Can you keep paying? Can you survive not just the disease, but the system?

The Weight of Race and Mistrust

The disparities deepen along racial lines. Black Americans are more likely to develop end-stage kidney disease, less likely to be referred for transplant, more likely to wait longer once listed, and less likely to receive a living donor organ. Asian American and Pacific Islander patients are underrepresented in both donor and recipient pools, often due to both cultural distrust and systemic exclusion.

HLA compatibility—the complex immune factors that determine whether a donor and recipient match—is genetically inherited. That means patients from underrepresented groups benefit most when donors from their communities are registered. But decades of medical racism, unethical experimentation, and broken promises have eroded trust. Even today, consent rates remain lower in many communities of color, not because people don’t want to help, but because they don’t trust the system with their bodies or their loved ones.

Every scandal, every story of a mishandled donor, a lost organ, a questionable brain death call, deepens the wound.

Reform That Only Punishes, Without Rebuilding, Will Fail

Secretary Kennedy’s willingness to take on failing OPOs is long overdue. But reform cannot stop at punishment. Decertifying one organization doesn’t rebuild a failing system. The U.S. transplant infrastructure is a fragile chain, characterized by outdated technology, fragmented databases, low adoption of advanced organ preservation methods, and logistical gaps that make it impossible to guarantee that even a perfect-match organ can reach the person who needs it in a timely manner.

Other countries do this differently. Spain, long held up as a global model, uses a centralized system with trained transplant coordinators embedded in every ICU. Canada tracks national equity metrics and adjusts policy accordingly. Several nations, including the UK and the Netherlands, have adopted “opt-out” donation systems, meaning all citizens are presumed to be willing donors unless they state otherwise. The U.S., by contrast, still relies on individual registrations, underfunded OPOs, and a patchwork of regulations.

Without universal healthcare, these reforms will always be partial. Until every American has equal access to diagnosis, referral, surgical care, and post-op medications, the system will continue to sort the saved from the sacrificed by income and location.

This Is Not Just Policy. It’s Personal.

Each year, thousands of people die waiting, people who could have been saved if the system functioned as it should. And every time a registered donor’s family overrides their wishes because they’re scared, or confused, or unaware, another opportunity is lost.

What’s tragic is that Americans are willing. Ninety percent say they support organ donation. But only around sixty percent are actually registered. And even among those, only a fraction die under the specific hospital-controlled conditions that make donation possible. The system demands near-perfection in circumstances, and yet it offers only brokenness in response.

We don’t lack generosity. We lack infrastructure. We lack trust. We lack leadership.

If the government truly wants to reform this system, it must invest in the things that make matching possible—technology, transport, rural capacity, community engagement, and public health. It must close the gap between death and delivery, match and medicine, will and outcome.

Because a system that only works for the wealthy and the well-located isn’t a system at all. It’s triage, wrapped in nonprofit branding.

And as long as that remains true, the tragedy won’t stop with Miami.

Stay Informed. Stay Loud.

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Sources:

• “HHS to Close University of Miami’s Failing Organ Agency” — U.S. Department of Health and Human Services Press Release

• “Trump administration to close Miami organ donation group it calls ‘failing’” — The Associated Press

• “HHS moves to bar Miami organ transplant agency” — Axios

• “HHS moves to decertify Miami organ transplant group amid efforts to reform organ donation system” — FierceHealthcare

• “HHS Finds Systemic Disregard for Sanctity of Life in Organ Transplant System” — HHS / HRSA (Press / Reform Statement)

• “AOPO Statement on HHS Announcement Regarding Organ Donation System” — Association of Organ Procurement Organizations

• “AOPO Highlights Disturbing Crisis: Thousands of Kidney Patients Who Died Waiting for Organs in 2023 Could Have Been Saved” — AOPO

• “A Sneak Peek Into the Future of Kidney Transplant Technologies” — National Kidney Foundation

• “Opportunities and challenges with the implementation of normothermic machine perfusion in kidney transplantation” — PMC / NCBI (TJ Rabelink et al.)

• “Transplants For All: Saving Lives, One Kidney at a Time” — National Kidney Foundation

• “New Report Recommends Changes to U.S. Organ Transplant System to Improve Fairness and Equity, Reduce Nonuse of Donated Organs and Improve the System’s Overall Performance” — National Academies of Sciences, Engineering, and Medicine

• “University of Miami organ procurement agency being closed by HHS citing safety issues” — NBC Miami

• “Whistleblower says U.S. organ transplants corrupted by greed and bias” — The Washington Post