The first donor living with HIV wants to raise "the veil of HIV-related stigma": NPR

Nina Martinez became the first living donor living with HIV in the world.

During a medical breakthrough, Johns Hopkins hospital surgeons at the end of last month were able to transplant one of his kidneys to an equally HIV-positive recipient.

"I feel wonderful," said Martinez, 35, in an interview with Michel Martin of NPR, 11 days after his recovery. The patient who received her kidney chose to remain anonymous, but is fine, says Martinez.

"They are doing wonderfully well and they have an organ that they desperately need and that's all I could ask for," Martinez said.

Advocates of HIV celebrate this achievement as an important step toward lifting the stigma around a disease that affects an estimated 1.1 million Americans. In 2017, about 18 patients died each day while waiting for an organ transplant. Many of these deaths involved HIV-positive patients who had traditionally had access to a much smaller pool of potential organ donors.

The decision to donate

Martinez contracted HIV through a blood transfusion when she was small in the early 1980s.

"I think that my lack of discomfort in talking about HIV makes people more comfortable with the idea, and I attribute this to being diagnosed at one if young age, "she said. "I did not know that HIV was supposed to be something I was ashamed of."

She said she first considered becoming a donor last year, when Johns Hopkins became the first hospital in the United States to announce plans to carry out organ transplants for HIV-positive donors. HIV. Previously, doctors only transplanted organs into HIV-positive recipients from deceased donors.

"Like most living kidney donors, I started this process for a friend of my acquaintance who needed a kidney," Martinez said.

Then her friend died in November, while Martinez was undergoing a rigorous evaluation process. "I knew it was a lot of medical expense to not try to do anything," she said. Johns Hopkins found another recipient.

Explaining why she felt compelled to tell her story, Martinez pointed out that Johns Hopkins performed the first transplants of HIV-positive donors who died in two anonymous patients in 2016.

"It was important for me to be able to give a name and a face to this story to show that the need for HIV-positive organs is real and really benefits everyone," she said. "By removing someone from the waiting list of the deceased donor who is HIV-positive, it means that everyone goes up the waiting list, whether they are HIV-positive or not."

In the United States, more than 113,000 people – including people living with HIV – are waiting for organ transplants, according to the United Nations Network for Organ Sharing (UNOS).

A long drive

The operation last month marked the culmination of a multi-year effort to expand organ donor access to organ donors.

In 2016, UNOS gave Johns Hopkins permission to first transplant an HIV-positive donor to an HIV-positive patient, putting an end to the two-year-old efforts of Martinez's surgeon, Dorry Segev, to to legalize such procedures.

Prior to that, Segev, an associate professor of surgery at the Johns Hopkins University School of Medicine, had been involved in drafting the HIV-related Organs Policy Act. signed by President Obama in 2013. This measure overturned a 1988 law preventing doctors from procuring infected organs the HIV status of the recipient.

Segev, in conversation with NPR in 2016, said that he was motivated to tackle the "outdated law" when he had found that the need for organ transplants in patients with HIV had increased since the beginning of the AIDS crisis in the 1980s.

Segev said that he became frustrated as he saw potentially vital organs getting lost. In a 2011 study, he and his colleagues estimated that between 500 and 600 potential donors of HIV-infected organs would die each year. If they had been allowed to donate while alive, they could have saved more than 1,000 lives a year.

"We were throwing away HIV-infected organs that could be used to help HIV-positive people," Segev said.

Today, a diagnosis of HIV is no longer the death sentence that it has been. "People live their lives with it," said Segev. "They just need to take antiretroviral drugs."

But patients who use these antiretroviral treatments – as well as other drugs used to treat the disease – also run a higher risk of kidney and liver failure and are often on the waiting list for organs.

Keep transplants safe

Given the risk of kidney disease associated with HIV, the medical community has considered until recently that it was dangerous to leave a potential donor with only one kidney.

But it is believed that the new drugs are both more effective and safer, and in order to guard against possible complications, Martinez has had to undergo rigorous tests for months to ensure the success of the drug. ci and its beneficiary.

"They determined that my future risk of kidney failure was really very low," Martinez said.

Martinez hopes that his visibility and openness to his illness will inspire others to realize that they can be part of the new advanced treatments that enable people living with HIV to lead healthy lives.

"I hope that people who are not living with HIV and who do not normally consider themselves living kidney donors would consider it seriously, as well as people living with HIV who are undergoing quality treatment. "

NPR's Emma Talkoff produced this story for broadcast.