One of my ongoing prayers during this current era of government interference in medical care has been that Health and Human Services Secretary Robert F. Kennedy Jr. doesn’t turn his attention toward organ transplantation. As someone who’s had another person’s kidney filtering my blood for more than five years, I don’t think I’ve been paranoid to worry that a health secretary so openly hostile to 20th-century medical innovations would eventually decide that people living happily after a transplant is a problem that warrants his solution.
One of my ongoing prayers has been that Robert F. Kennedy Jr. doesn’t turn his attention toward organ transplantation.
That’s why it was so frightening to read what Kennedy posted on X Monday: “Under my leadership, [the Department of Health and Human Services] is overhauling the organ transplant system,” he wrote. “We’ve exposed gross negligence, launched sweeping reforms, and will decertify any organization that violates the sanctity of human life.”
Kennedy’s post and the news interviews and press release that preceded it focus on a horrible scandal involving Kentucky Organ Donor Affiliates (which, after a merger, is now called Network for Hope) that was exposed last year. Over a four-year period, according to the federal Health Resources and Services Administration, more than five dozen people who were on life support and not expected to recover nearly had their organs removed while they were still alive. A common issue, according to reporting, appears to be the way some drugs (illicit ones and those used by hospitals as sedatives) masked the patients’ neurological functioning, so they appeared dead when they weren’t.
Most of those people died soon after, but a small number of people whose organs were nearly retrieved while they were still living recovered well enough to be discharged from the hospital. As of a late-July report in The New York Times, at least one of them, 36-year-old Anthony Thomas Hoover II, who had an overdose in 2021, was still alive. The newspaper, quoting his medical records, said that as a medical team was preparing Hoover for organ retrieval in 2021, “he cried, pulled his knees to his chest and shook his head.” The newspaper said two former employees of the procurement organization said higher-ups in their organization pressured the doctor to proceed with the retrieval but that the doctor refused.
The HSRA report does not mention any of Hoover’s doctors being pressured to remove a patient’s organs.
“Patient safety is our top priority,” Network for Hope’s CEO Barry Massa said in a July 22 statement. “Network for Hope looks forward to working collaboratively with the United States Department of Health and Human Services (HHS) and Health Resources and Services Administration (HRSA) and encourages the development of policies that support the betterment of the organ transplant system as a whole.” That same day, after a congressional hearing on organ procurement agencies, Massa released another statement: “We hold ourselves to the highest standards and are committed to ongoing improvement as we carry out the sacred responsibility of honoring each individual’s decision to become an organ donor.”
The allegation that a procurement agency would push a doctor to remove organs from someone who was still viable is the stuff of nightmares. Every government agency that has jurisdiction should investigate and take whatever corrective steps are necessary to guarantee patient safety and whatever punitive steps are necessary if there were any crimes or ethical violations.
The agencies looking into the matter should include HHS. And, indeed, if any of our country’s past health secretaries had vowed to address the Kentucky scandal, we would likely take comfort in that. But Kennedy’s vow registers more as a threat because he has shown himself to be incapable of fairly assessing the risks and rewards of medical innovation.
Notice that Kennedy didn’t say that the Kentucky situation needs to be addressed. He said he’s “overhauling the transplant system” as a whole. A press release issued by his office at the end of July calls out the offenses of “a major organ procurement organization” but doesn’t immediately point out that the scandal was specific to Kentucky Organ Donor Affiliates. Nor does he attempt, in his Aug. 4 post, to pinpoint the damage he refers to.
If any of our past health secretaries had vowed to address the Kentucky scandal, we would likely take comfort in that. But Kennedy’s vow registers more as a threat.
His messaging is inexcusably and irresponsibly broad when he writes, “Hospitals began organ harvesting while patients still showed signs of life,” in a post that was catnip to conspiracy theorists. The first response I saw to Kennedy’s X post suggests that all such organs are improperly removed, that there are no cadaverous donors and that all organs come from people who are alive but medically immobilized. That’s absurd, but it’s no more absurd than Kennedy’s assertion that Black people’s immune systems are so strong we should be on a different vaccine schedule, his insistence that HIV doesn’t cause AIDS or his argument that Covid was “targeted to attack Caucasians and Black people” and spare Jews and Chinese people.
It’s proper for an HHS secretary to talk about a scandal at an organ procurement agency. Just not in a way that casts aspersions on the whole system and will likely have the effect of discouraging people from organ donation, which can only lead to more deaths for those waiting for lifesaving organs.
All the transplant patients and living donors I know have essentially become advocates for organ donation. I am. The cousin who donated a kidney to me is. And other family members of ours have joined us in our advocacy. But there’s one major fear that keeps many people from even considering signing up to be an organ donor. They’re afraid that if they indicate such wishes, in end-of-life situations hospitals will treat them less like a person and more like a bag of organs. They’re afraid that they’d be giving a hospital permission to put the lives of people on a transplant list over their own life.
That's why, unless there's evidence otherwise, a responsible health secretary would point out that what happened in Kentucky is a scandal and not the norm. That organ transplantation saves lives and that the federal government’s goal is to give people volunteering to be organ donors the comfort that their lives won’t be disregarded, and transplant recipients the comfort that their new organ was properly and ethically obtained.
Instead, Kennedy speaks broadly of “overhauling” things. I’m afraid of what that might mean.