The Road to HOPE

Published in Dome - July/August 2016

Andrew Cameron’s cellphone rang as he drove to work on March 18. It was 6:30 a.m., the sky beginning to brighten.

Cameron, a liver transplant surgeon at The Johns Hopkins Hospital, got calls like this about 100 times a year. A New England woman had died; her grieving family wanted her organs to live on. But this time was different: The woman had human immunodeficiency virus—HIV.

For the next two days, infectious diseases specialist Christine Durand gathered information about the donor to ensure that her liver and kidneys were suitable for transplant.

On March 20, Cameron performed the nation’s first transplant of an HIV-positive liver. The same day, Johns Hopkins kidney transplant surgeon Niraj Desai performed the nation’s first HIV-positive kidney transplant.

Only HIV-positive patients can receive HIV-positive organs.

Although the surgeries were no more complicated than usual, “we knew there was more to it,” Cameron says. The milestone represents the triumph of science over stigma. 

Both organ recipients are home and healthy, their doctors say. Their lifesaving surgeries were possible because Dorry Segev, another Johns Hopkins transplant surgeon, pushed to reverse a 1988 federal law forbidding the use of the use of organs from donors diagnosed with HIV. At that time, AIDS was new, poorly understood and almost always fatal.

The HIV Organ Policy Equity (HOPE) Act, which became law in November 2013, allows HIV-positive organ transplants. For the first time, it also allows people with HIV to volunteer to become organ donors.

The hard-earned policy reform highlights the progress made since the bleakest early days of the AIDS epidemic 35 years ago.

Earlier this year, under Segev’s leadership, The Johns Hopkins Hospital became the first hospital approved for such surgeries.

Peering into the Dark

Johns Hopkins clinicians were among the first to move past the fear of treating deathly ill patients and begin to understand AIDS and the virus that causes it, HIV. Epidemiologist B. Frank Polk began studying AIDS in 1982, when it was still known as GRID—gay-related immunodeficiency disease. Reported deaths were in the single digits, but Polk’s prediction that the disease would “be a big one” proved correct. In 1984, 3,665 Americans died of AIDS; a decade later, the disease claimed 32,330 U.S. lives.

When Johns Hopkins began outpatient treatment at the Moore Clinic in 1983, “there was a huge stigma attached to this disease,” says Thomas Quinn, an infectious disease specialist at Johns Hopkins since 1981. “There was no treatment. Fear permeated not just the general public but also clinicians who were afraid of getting infected.” 

Johns Hopkins forged ahead. Pediatrician Nancy Hutton started a pediatric HIV program in May 1985. Obstetrician-gynecologist Jean Anderson created the HIV Women’s Health Program in 1987.

In 1988, Johns Hopkins Hospital President Robert Heyssel opened the nation’s second inpatient AIDS unit, after one in San Francisco. “The nurses ran that unit. They knew the patients, knew the families and knew the street drugs,” recalls John Bartlett, infectious diseases chief from 1980 to 2006.

Johns Hopkins research showed the devastating reach of the disease among injecting drug users in Baltimore, propelling the city to establish a lifesaving needle exchange program in 1994.

When antiretroviral therapy, a combination of drugs to suppress HIV, was introduced in 1996, it saved even more lives and turned a death sentence into a chronic disease. Patients with HIV can now keep the virus at bay—and dramatically reduce the risk of HIV transmission—with one to three pills per day. And PrEP, or pre-exposure prophylaxis, is a new prevention method in which people who do not have HIV take a pill every day to reduce their risk of acquiring the virus.

But even streamlined regimens can be challenging, particularly for people who are poor or unstably housed, says Errol Fields. The pediatrician and other Johns Hopkins experts are working to cut a diagnosis rate that stubbornly hovers around 50,000 U.S. cases per year, while researchers zero in on strategies that could lead to a cure.

A Chance to Participate

People with HIV now live long enough for their livers and kidneys to wear out—the damage accelerated by cancer, cirrhosis, hepatitis C and therapies for HIV. About 30 percent of people with HIV suffer kidney damage, says nephrologist Derek Fine. A transplanted kidney adds years of life and ends uncomfortable and time-consuming dialysis.

The goal now is to give more people opportunities to receive HIV-positive organs. Johns Hopkins doctors are studying how organ recipients cope with strains of the virus that are different from their own. And they’re assessing the risks and benefits of allowing people who are living with HIV to donate a kidney or a portion of their liver—as people without HIV do.

That opportunity would mean a lot to Juliano Innocenti. He contracted HIV in 1997, when he was a 17-year-old ballet dancer in New York City. He managed to stay healthy by lucking into a study that treated HIV to prevent the clinical progression to AIDS, a now-standard protocol. Leaving dance, he worked in HIV prevention programs and fundraising campaigns in the U.S. and overseas. He has been an acute care nurse at The Johns Hopkins Hospital since 2014.

Now, thanks to the HOPE Act, Innocenti can volunteer to be an organ donor. When he learned that the nation’s first HIV-positive transplants would take place in his own hospital, he sent Segev an email.

“It said, ‘Thank you so much. What an amazing accomplishment this is!’ I told him how important it is for me, how many times I had thought about being an organ donor.

“When you get a chance to participate in something you were not allowed to participate in, it’s a pretty fantastic feeling.”


Read More

The Road to HOPE: Redoubling Efforts to Extend Life

The Road to HOPE: HIV and AIDS Timeline

The Road to HOPE: HIV and AIDS Timeline

Key moments in HIV and AIDS progress at Johns Hopkins and around the world


The Road to HOPE: Redoubling Efforts to Extend Life

Transplant surgeon Dorry Segev pushed to repeal a federal law banning transplants of HIV-positive organs.

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