Kalter: Living with HIV 30 years later

Everyday battle for Braintree man

Lindsay Kalter Tuesday, November 22, 2016

Credit: Lisa Hornak

DIAGNOSED IN 1985: Adam Barrett, 55, of Braintree, above, has been living with HIV for over 30 years and credits his progress to the work of researchers such as AIDS Clinical Trials Group Network Principal Investigator and Chief of Infectious Diseases at Brigham and Women’s Hospital Dr. Daniel Kuritzkes.

Adam Barrett of Braintree was just 23 when his doctor told him to prepare for death. It was 1985 and he had been diagnosed with HIV, the same mystery virus that turned countless friends into ravaged shells of their former selves, ultimately taking their lives.

“What I knew about the disease at the time was, you got sick and you died, and it was ugly,” said Barrett. “It was painful and it was emotionally ugly. These were the days when families were abandoning family members.”

He remembers his doctor telling him, “Get your affairs in order and we’ll see where things are in 18 months or so.” He didn’t expect to see his 25th birthday.

Against all odds, he lived to see 25 and decades beyond. Now 55, Barrett credits his survival to years of clinical trials that turned an HIV diagnosis from a death sentence to a life sentence. Barrett was one of the early participants in the AIDS Clinical Trials Group, or ACTG, formed on Dec. 2, 1986, by a group of infectious disease doctors at Massachusetts General Hospital. As ACTG comes up on its 30-year anniversary, Barrett and local infectious disease scientists are urging patients to take part in a new chapter of research.

“I would ask someone to think about why they or someone they care about might still be alive today. Where would we be if people who were ill didn’t say, ‘We need to push things ahead somehow’? ” he said.

The network has surpassed that early goal of basic survival by light years, now aiming to combat the inflammation that puts HIV/AIDS patients at greater risk of heart attack, kidney and liver disease. And scientists are working on new antibody therapies for vaccines and potential cures to eradicate the disease entirely.

When Barrett enrolled as a participant in the ACTG, he was resigned to early death. He pulled out of nursing school, and the “future” was now a day-to-day concept.

“It was just a constant sense of, ‘When is the rug going to be pulled?’ ” Barrett said. “I had a friend once who said it was like being a Jew in Nazi Germany and you’re just waiting for a knock at the door.”The illness inspired a pervasive fear that led to social isolation. Barrett remembers hearing the nurses outside his hospital room door arguing over who would be the one to step inside.

 

Doctors watched helplessly as the devastating effects took hold of their patients: lung infections, blindness, skin lesions.

“We were just hoping to keep people alive as long as we possibly could,” said Dr. Daniel Kuritzkes, chief of Infectious Diseases at Brigham and Women’s Hospital, who at the time was a fellow at MGH. “We had no idea how to treat the virus itself.”

The mid-1990s brought pivotal changes with various antiretroviral drug cocktails, he said. Patients hanging on by prayers who had already bid their goodbyes were suddenly given life, a phenomenon eventually dubbed the “Lazarus effect.”

Now, a patient living with HIV can live a full lifespan — but there is still work to be done.

“Even though it’s a treatable disease, it still comes with a ton of stigma,” said Dr. Rajesh Gandhi, MGH Clinical Research site leader. “If we could cure HIV it would transform lives in a way that would become very meaningful.”

Barrett eventually went back to school, and was a nurse at a local hospital that — because of that remaining stigma — he has chosen not to disclose.

Dr. Daniel Barouch, director of the Center for Virology and Vaccine Research at Beth Israel, said although it has faded into the background of infectious disease headlines, HIV/AIDS is the “defining epidemic of our lifetime.”

And although it is impossible to predict when a vaccine or cure will be made available, promising strides are being made in both areas.

“The field is testing several concepts,” he said. “We’re hopeful.”

 

DECADES OF RESEARCH

Key moments in HIV/AIDS progress:

  • 1985: First commercially available test for detecting HIV in blood available
  • 1986: First patient enrolled in an AIDS Clinical Trials Group
  • 1987: AZT, an antiretroviral, approved in the U.S., but it caused debilitating side effects
  • 1995: The three-drug cocktail of AZT, 3TC and indinavir was approved for use, making “undetectable levels of HIV” possible — FDA also approved the first protease inhibitor Saquinavir, causing the “Lazarus effect.”

 

More than 1.2 million people in the U.S. are living with HIV, according to the Centers for Disease Control and Prevention. About 1 in 8 are not aware of it.

http://www.bostonherald.com/news/columnists/2016/11/kalter_living_with_hiv_30_years_later

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