In-Depth: Should long COVID sufferers be organ donors?

Heidi Ferrer
Posted at 7:34 PM, Nov 12, 2021
and last updated 2021-11-17 12:20:50-05

SAN DIEGO (KGTV) -- When medical staff told Nick Guthe they planned to move forward and collect organs from his deceased wife, one word came to his mind: “insanity.”

His wife, Heidi Ferrer, had battled debilitating long COVID symptoms for 13 months, starting with painful COVID toes, then brain fog, then seizures, and tremors.

A Los Angeles-based screenwriter on Dawson’s Creek, Ferrer’s symptoms grew so intense and widespread she lost the ability to read the books she loved or get more than an hour of sleep. In May, she died by suicide.

“I said to them, this is a bad idea. I don’t approve of this. My wife would not want her organs put in anybody else given how her body had been broken down,” Guthe recounted. “I said we’re in the middle of a pandemic. We’re trying to stop the virus from jumping hosts. You are going to take organs out of her and put it in other people. This is insanity.”

Across the country, there’s an evolving debate about when it is safe to use organs from COVID patients. Doctors routinely screen prospective donors for a host of infections, and so-called “donor derived disease” is rare. But last year, an organ recipient in Michigan died after contracting COVID-19 from a lung transplant.

Since then, doctors have revamped the way they test donors for the coronavirus. Typically, hospitals will not use organs from donors who actively test positive, but there are certain exceptions.

Some of the nation’s top transplant groups have taken different approaches on when to use organs from COVID-positive patients.

In the beginning of the pandemic, transplant organizations wrestled with the question of whether they should use organs from patients with a past history of COVID-19 at all, said Dr. Olivia Kates, an assistant professor at Johns Hopkins who specializes in infectious diseases affecting transplants and bioethics.

Later, the debate shifted to how recently the patient experienced COVID-19 symptoms. Under the American Society of Transplantation’s guidelines, at least 21 days must elapse after an organ donor first experienced COVID symptoms. Those symptoms must be resolved and the donor must test negative for the virus at the time of the procedure.

“Now it’s really becoming, do we have to wait at all?” Kates said. “Are there some donors who are testing positive for COVID-19 whose organs we can still use?”

The AST guidelines allow a limited exception in the event a donor tests positive. It’s only appropriate when the donor is likely “persistently positive,” a mysterious scenario when the individual continues testing positive for weeks or months due to fragments of viral code.

Some hospitals are moving beyond that, using organs from COVID-positive donors more broadly in the context of clinical studies, Kates said. In those cases, the lungs are likely too risky to use, but other organs like the kidneys and liver might be viable, especially in cases of extreme medical need, she said.

“I think the big question here is, do we believe that there’s a virus in these tissues that’s capable of setting up an infection at all? And I think for many of us, the answer is more and more consistently: no,” she said.

But what about individuals with long COVID? In many cases, long COVID sufferers don’t test positive, but researchers theorize the virus might be hiding in reservoirs we can’t detect.

“There’s got to be something driving long COVID symptoms, and it’s not clear what it is. There are so many people with long COVID with really debilitating symptoms that all the normal blood work comes back normal,” said Julia Moore Vogel, a scientist who studies long COVID at Scripps Research Institute and has the condition herself.

Studies show the virus can linger in the small intestines months after infection, so transplants from long COVID patients might carry some risk.

At the same time, 17 people die each day while waiting for an organ on a transplant list. Turning down donors with long COVID would turn down a lot of organs.

“There are estimates that range between 10 percent and 30 percent of COVID-19 patients end up with long COVID, which puts us at many millions of people in the US and probably approaching 100 million worldwide,” Moore Vogel said.

She supports transplants from patients with long COVID as long as the recipient is adequately informed of the risks. “Then they can make a decision,” she said.

Dr. Kates of Johns Hopkins acknowledges there are some uncertainties surrounding long COVID, but she thinks the risk of passing an infection from someone with long COVID to a recipient is low. Surgeons also take steps to screen organs and ensure they function properly.

“When we do these transplants, the tissues are actually biopsied and examined directly to make sure that they’re in good enough condition for transplant, which I think would do a pretty good job of catching any problems that we didn’t want,” Kates said.

Two men in California received Heidi Ferrer’s kidneys. Her husband said he’s still hoping to meet them one day or at least get an update on how they’re doing.

“I don’t know if those men were informed of what my wife went through,” he said.

He says he supports organ donations from COVID survivors who have actually recovered. But in patients who had lasting symptoms, like his wife, Guthe thinks their tissues should be used for research instead.