For years, HIV-positive individuals were prohibited from donating their organs after death. However, due to recent changes in federal and state law, Duke recently performed its first HIV-positive organ transplant.
In December 2017, Tennessee native Stanley Boling—who is HIV positive—underwent transplant surgery at Duke Hospital to receive a liver from an HIV-positive donor. Boling, who is recovering well after the operation, benefited from the HIV Organ Policy Equity (HOPE) Act passed by the federal government in 2013 and subsequent changes to North Carolina state law.
“When Stan came to meet us at that time, we recognized that he had HIV that had been very well controlled for many decades,” said Carl Berg, a transplant hepatologist at Duke Hospital who is Boling’s current primary physician. “Actually, it turns out he’s a nurse by training and he’s very knowledgeable about his health care and seemed like a good candidate for transplantation from a medical perspective.”
As one of 22 centers in the United States authorized to perform transplantations of organs from HIV-positive donors, Duke Hospital was able to provide Boling with a better chance of receiving a transplant when he needed one. By having his name on the list for both HIV-positive and HIV-negative organs, Boling had access to a larger pool of organ donors than an HIV-negative patient would.
The first transplant
Boling was initially infected with Hepatitis B, a liver disease, in the 1980s. And he lived with the disease for decades with little hindrance in his everyday life until the fall of 2016, Berg said.
That was when Boling developed a condition known as pulmonary hypertension, a type of high blood pressure affecting arteries in the lungs that can lead to shortness of breath. Berg explained that a pulmonologist in Tennessee realized that the ultimate culprit behind Boling’s lung-related problems was his liver and referred him to Duke in the summer of 2017.
There was just one issue doctors had to contend with—Boling had HIV, which he was diagnosed with in the 1990s, Berg noted.
Although having HIV can be a problem when looking to obtain an organ transplant, it was not a major hindrance in Boling’s case.
“We have known for a number of years how to successfully transplant individuals with HIV that’s well controlled, so his having HIV was not a concern to us,” Berg said. “We worked with our colleagues in infectious diseases to make sure he had well-controlled HIV disease, and he did.”
Berg explained that when evaluating Boling for a transplant, doctors first examined general factors that determine whether any patient would be eligible receive a transplant, regardless of HIV presence.
Did Boling have an understanding of the “complicated medical regimens” that come alongside surgeries? Would he be compliant with doctors’ orders, and were his other organs healthy and unlikely to be damaged during surgery?
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To all of these questions, Boling’s team answered “yes,” but they were nevertheless concerned about his nutrition.
“He lost a lot of weight from his disease, so we worked actually quite diligently with him last fall to work on nutritional supplements and increase his protein intake to strengthen him up,” Berg said.
After clearing Boling on the HIV-nonspecific criteria for a transplant, Berg turned to Cameron Wolfe, an associate professor of medicine. Wolfe—who works with HIV as an infectious disease specialist and is also a subspecialist in transplant infectious disease—evaluated Boling’s medical history of HIV and cleared him for a transplant.
With this approval, Boling’s name was added to the regular liver transplant list. However, that fall, Duke received the authorization to participate in the HOPE Act program, which would enable HIV-positive patients to receive organs from HIV-positive donors, Berg explained. Boling was then added to the second list, where he would eventually find a match for a new liver later in the fall.
As soon as the news of an available liver arrived, Wolfe and other infectious disease specialists had to work quickly to evaluate the donor’s history of HIV and whether it would be compatible with Boling’s.
“There’s sort of an unquantified risk that a donor may bring other things with them, so some people’s history of HIV is very complicated, and they’ve had lots of infections or malignancy,” Wolfe said. “You want to be particularly careful when you choose a donor that you’re choosing someone who doesn’t bring other infections or cancers with them.”
Berg added that the team verified that there were no apparent risks between donor and recipient, and they concocted a regimen of medications that would control the HIV after transplantation.
Aside from the extensive precaution that doctors typically take before transplant surgeries, Berg noted that there was relatively no difference between Boling's operation and that of a typical liver transplant.
“At the end of the day, we already have a fair [amount of] experience with having recipients who are HIV positive,” Wolfe said.
‘Not a walk in the park’: Changing the laws governing HIV-positive organ donation
An amendment to the National Organ Transplant Act in 1988 prohibited HIV-positive individuals from donating their organs. The driving force behind the bill, Berg explained, was researchers’ and doctors’ inability to adequately treat patients who had HIV.
“There was great fear that HIV-positive organs might get into the transplant pool and inadvertently infect someone that didn’t have HIV,” he said. “That, of course, back in those days, would have been a death sentence because we couldn’t control HIV in the mid-1980s.”
Berg noted that years later, successful kidney transplants from HIV-positive donors in South Africa and Europe prompted the medical community to reconsider their position.
Wolfe explained that as a result of lobbying from medical organizations, President Obama changed the federal law surrounding HIV-positive donors when he signed the HOPE Act in 2013. However, the restriction was lifted for only hospitals that “have already shown and demonstrated that they’ve got really good experience using HIV recipients,” Wolfe said.
Currently, 22 hospitals—including Duke Hospital—have applied for a waiver and currently participate in the HOPE program, according to its website.
“Not any hospital can decide they’re just going to do this—you actually have to demonstrate expertise, and you have to have IRB-approved research protocol for follow-up of the patients, you have to report your data into a national database,” Berg said.
Since the HOPE Act was passed, 23 kidney transplants and 11 liver transplants had been performed at accredited hospitals as of November 2017, according to the HHS website.
However, the battle wasn’t over after the federal law was changed—there were still many state laws on the books prohibiting HIV-positive organ donation, Wolfe explained. He and other professionals visited Raleigh to present their medical opinion on the issue and to ensure that the law was amended.
“As you can imagine, asking the state government to change state law is not a walk in the park,” he said. “Asking the federal government to sign a law was a multi-year effort that eventually resulted in President Obama changing that law.”
A more inclusive future
Despite the federal law’s passage in 2013, the first HIV-positive donor transplant at Duke Hospital was not until Boling’s operation in December 2017.
Wolfe explained that the reason behind the delay was largely due to precautions and making sure that the system was implemented effectively.
The National Institutes of Health had to come up with the scientific guidelines describing how to evaluate donors and recipients for the program, and the Organ Procurement and Transplantation Network was charged with developing the logistics of the system to ensure that an HIV-negative patient would not accidentally receive an organ from an HIV-positive donor.
Boling was also not the first person to sign up for the HIV-positive donor list at Duke Hospital, Wolfe added.
“We’ve had people who have been on our [HIV-positive donor] waiting list since early last year,” he said. “It just so happened that a number of those people were fortunate enough to receive organ transplants that just happened to come up with HIV-negative [donors].”
Berg and Wolfe agreed that Duke Hospital was likely to see an increase in the number of recipients signing up for and receiving organs from HIV-positive donors. In fact, Berg mentioned that an HIV-positive patient was referred to him just last week after the referring physician had seen the press release detailing Boling’s successful operation.
They added that the change of laws will also benefit individuals with HIV who want to become organ donors but were previously barred from doing so.
“I suspect that there are HIV-positive individuals that felt excluded by the legislation previously that precluded them from being organ donors,” Berg said. “I think it’s important to get the word out now to people with HIV that that’s no longer true—if they want to be an organ donor, they should sign up.”