JAMA declined to publish this letter on kidney donation

 JAMA recently published the following Viewpoint, whose title adequately summarizes its main point:

The End Kidney Deaths Act Risks Irreversible Harm to Organ Donation
by Thomas F. Mueller, MD, PD1; Maria A. Matamoros, MD2; Gabriel M. Danovitch, MD3; Sanjay Nagral, MD, JAMA. March 26, 2025. doi:10.1001/jama.2025.2409

I promptly submitted the letter below, in reply, and received a rejection from the journal yesterday. 

“Irreversible Harm to Organ Donation”? Strong opinions based on weak evidence 

Alvin E. Roth,  Ph.D., Word count: 391
 
 From 2002- 2022, the number of Americans newly diagnosed with kidney failure increased from 99,956 to 131,194 per year (1).  The total number of Americans suffering from kidney failure nearly doubled to over  800,000, with over 500,000 on dialysis (2).   In 2024 there were only 27,759 kidney transplants in the U.S. from both deceased and living donors, so most patients with kidney failure will die without  receiving  a transplant.

Mueller et al.(3)   claim that a proposed experiment involving modest compensation of a limited group of living kidney donors “risks irreversible harm to organ donation.” Their arguments are those also used to argue against compensation of donors of Substances of Human Origin generally (4).   But the case of blood plasma suggests these strong opinions are based on very weak evidence.

Five of the twenty-seven EU nations allow plasma donors to be compensated. Those five are the only EU nations self-sufficient in plasma. The twenty-two nations in which payment of donors is banned must import a significant portion of the plasma and plasma derivatives they need. Much of those imports comes from the U.S, which also has legal, regulated markets in which plasma donors may be paid for donation (5).   Consequently, many lives are saved by American plasma, in the U.S. and around the world.  Paying plasma donors  hasn’t reduced  plasma donation: any reduction in unpaid donation has been more than replaced by paid donors.

The regulation of markets in the U.S. has been strong enough that the catastrophic predictions of black markets, exploitation, and devastation of donors that support the establishment of bans on compensation in many other countries have not come to pass in the U.S.  This provides reasons to doubt the dire forecasts also made about the consequences of a U.S. experiment involving modest payments to kidney donors.
 

Kidney donation is not the same as plasma donation, so effective regulation of compensation for kidney donors would be different. We need to experiment to gather evidence of whether and how to proceed.  Pilot programs such as the tax credits proposed by the End Kidney Deaths Act would provide evidence.  
 

New markets and regulations may need modification as experience accumulates.  If the experiment increases non-directed donations, it could be expanded to include more kinds of kidney donation. And the experiment could be abandoned if generosity to donors turned out to be uncontrollably negative, as opponents predict.

References:

1  Annual Data Report | USRDS, https://usrds-adr.niddk.nih.gov/2024/end-stage-renal-disease/1-incidence-prevalence-patient-characteristics-and-treatment-modalities.

2  The National Forum of ESRD Networks. Quarterly National ESRD Census www.esrdnetworks.org.

3. Mueller TF, Matamoros MA, Danovitch GM, Nagral S. The End Kidney Deaths Act Risks Irreversible Harm to Organ Donation. JAMA. Published online March 26, 2025. doi:10.1001/jama.2025.2409

4  Cuende, Natividad, et al. "Promoting equitable and affordable patient access to safe and effective innovations in donation and transplantation of substances of human origin and derived therapies." Transplantation 109.1 (2025): 36-47. January  https://journals.lww.com/transplantjournal/fulltext/2025/01000/promoting_equitable_and_affordable_patient_access.6.aspx

5  Elias, Julio, Nicola Lacetera, Mario Macis, Axel Ockenfels, and Alvin E. Roth, “Quality and safety for substances of human origins: scientific evidence and the new EU regulations, BMJ Global Health, Volume 9, Issue 4 April, 2024,  https://doi.org/10.1136/bmjgh-2024-015122

Hospice care and its limitations

 I've recently posted about Medical Aid in Dying (MAID), which is quite controversial.  An alternative model of end of life care is a hospice, which offers palliative care to patients with terminal diagnoses.  But it turns out that Medicare only covers very limited hospice care, so that most patients who qualify medically have to be cared for by relatives at home.

Slate has the story, by a hospice doctor.

“But They Are Dying.”  Hospice physicians like me can’t usually offer patients the care they need.
By Charlotte Grinberg 

"A patient qualifies for hospice when they have a terminal illness with a prognosis of six months or less based on the natural progression of their disease. Hospice does not usually provide 24/7 private care or the physical place of residence for the dying; typically, people with a terminal diagnosis who opt against further medical interventions die at home, and with significant caregiving duties provided by someone in their family or hired privately. The only place where people receive 24/7 care by hospice-trained professionals are inpatient hospice facilities.

...

"I also work with patients who are under routine care at home or in an assisted living or a nursing facility. To me it’s clear that continuous attention provides a better experience, for patients and their loved ones. But most hospice patients will never be able to access inpatient hospice care. In fact, most hospices across America don’t even have inpatient hospice facilities because they are expensive to build, staff, and maintain, and ultimately depend heavily on philanthropy to both build and cover ongoing operations. Instead, dying patients only see a hospice nurse approximately once per week and are able to call a hospice triage nurse 24/7. They rarely—or never—see a hospice physician.

"The average cost of routine hospice at an inpatient hospice facility is $350 a day. Medicare will only cover inpatient hospice care under very specific circumstances. Families can request “respite care” for five days at a time to get temporary relief from serving as caregivers. Patients can also meet a General Inpatient Hospice level of care. The GIP level of care is intended to cover the time it takes to stabilize a crisis of acute symptoms that cannot be managed in any care setting other than a Medicare-certified inpatient hospice facility (or a contracted hospital or nursing facility). Once a patient’s symptoms are stabilized, the payment for room and board ceases, and the patient is considered to be in a routine level of care.

GIP is only approved when there is a crisis of physical symptoms such as pain, vomiting, seizures, or difficulty breathing. In 2021, only about 1 percent of all hospice days in the United States qualified for the GIP level. Medicare specifies that GIP is not appropriate for situations where a patient’s caregiver support has simply broken down. Complete caregiver breakdown would also not qualify someone for respite care, because respite care is specifically designed to be temporary relief. The primary burden still falls on the patient’s support system, if they have one, to simply figure out how to manage."

Medical credit cards and high interest medical debt for services often not covered by insurance

Borrowers beware.  Medical procedures that are often not covered by insurance can be paid by credit card.  Special medical credit cards offer an extended interest-free period.  But when that period expires, a high interest rate is applied back to the time the card was charged (i.e. interest is charged for the period that would have been interest free if the balance had been paid in full.)

Bruch, Joseph Dov, Cal Chengqi Fang, and Betsy Q. Cliff. "Prevalence of Medical Credit Cards by Specialty." In JAMA Health Forum, vol. 6, no. 4, pp. e250174-e250174. American Medical Association, 2025. 

"Financial institutions are increasingly marketing medical credit cards as a solution to rising medical debt.1 Medical credit cards offer deferred interest terms, allowing patients to avoid interest payments for a promotional period of 6 to 18 months. However, if the balance remains unpaid by the end of this period, accrued interest from the start date is added to the balance.2 While the promotional period has the potential to allow relatively frictionless borrowing and alleviate financial burdens for patients, the average annual percentage rate on medical credit cards is 26.99%, which tends to be higher than other payment types. A recent survey found that about a quarter of patients who financed through medical credit cards did not pay off the balance in time to avoid the deferred interest.3 Medical credit cards were used to pay $23 billion in health care expenses, resulting in $1 billion in deferred interest payments from 2018 to 2020.2"