Early in the AIDS epidemic: “Taking them through to their death”

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The following is the fourth installment in a Science Speaks series commemorating the 30th anniversary of the first scientific reports of what would become known as HIV/AIDS in June of 1981. John Donnelly reports on some important memories revealed by Dr. Eric Goosby of the Office of the Global AIDS Coordinator, responsible for running the President’s Emergency Plan for AIDS Relief (PEPFAR) program.

A young child from the Democratic Republic of Congo recently diagnosed with HIV/AIDS in April 2010.

When Dr. Eric Goosby, the U.S. global AIDS ambassador, opened a roundtable discussion with journalists this week, he said he welcomed the chance to reflect on the 30 years since the publication of a report describing what would later be known as AIDS. He opened the meeting by showing a picture of a two-year-old girl from the Democratic Republic of Congo.

She looked desperate, malnourished, and she tested positive for HIV.

Then he showed a second picture of her five months later. She was almost unrecognizable with a huge grin. AIDS treatment, bolstered with a nutritional diet, had made her healthy. Her weight doubled.

“This is the before and after (due to) this remarkable program that has been so successful,” Goosby said, referring to the PEPFAR program.  “I continue to be humble and proud to be part of this contribution.”

Goosby, board certified in infectious diseases, has made a longtime contribution, starting when he finished as chief resident at the University of California, San Francisco in 1980. He basically became an AIDS physician over the next decade and beyond.

The child in September of the same year after receiving antiretroviral medication and bolstered nutrition.

Over the coming years, he said, 500 of his patients died.

“The first time I met them I knew I would be taking them through to their death,” he said of the pre-antiretroviral (ARV) drug era. “We were effective at controlling opportunistic infections – for the first one or two or three of them. The fourth of fifth one would take them.”

The advent of ARVs almost overnight allowed physicians such as Goosby to save the lives of patients. But in the late 1990s, he travel to Zambia, South Africa, and Kenya – places where just a tiny minority of those who were infected had access to ARVs.

The scene in hospitals then left an indelible mark on Goosby.

“There were three or four people in the bed, there were people under the bed, people in the hallways,’’ he said. “You stepped over people to get to patients in the ward. That was the norm of every hospital I visited.”

The scene in San Francisco in the early days of the epidemic was just as full with death, he said.

Asked how he dealt with the emotional toll, he said, “It was one of the more profound things to have happened to me in my life, to be a doctor and attracted to medicine and disease that I could throw magic bullets at. I wanted to treat diseases that I could cure, not a chronic progressive disease.  … I had to go through a process to look at whether this was a failure as a physician. Was I failing the patient and the family with the death of the patient?

“All of us who were in the clinic at the time, after seven years, we all began to have more emotional [moments] than any of us had before. I remember seeing a stray dog on the street and that would upset me disproportionately. I remember watching that commercial on TV, ‘Just phone home with AT&T’ and that would make me well me up [in tears]. Everyone in the clinic had exactly that same thing. It was post-traumatic stress we were all going through at the same time. Internists would rather shoot themselves in the foot than talk about these things – until eventually we realized we had to talk.

U.S. Global AIDS Ambassador Eric Goosby, MD.

“We met once a week, wrote down the names of people who died that week, the 15 to 30 people who died, and we talked about whether something could have been avoided. But we also acknowledged that these patients were people we had lost, and we grieved over them. We could do that and it made a huge difference for us.”

At that time, his wife gave birth to their first child, a son, Eric Jr.

“I realized everyone we had been with had been someone’s son, and had parents who loved them as much as I loved my son,” Goosby said. “That put me through a crescendo moment. And virtually every physician and every nurse went through the same thing. The only thing that relieved it was talking to the other s about it. Not talking to outsiders, but talking to each other.”

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