When the AIDS epidemic was at its deadliest, people with HIV were getting medications on the black market in many major U.S. cities.
Bobby Stansberry remembers the trips to a gritty, back-room office in the gay district of Dallas in 1984.
They’re not good memories. He would go there to find medication for his dying boyfriend and, later, himself. There was nowhere else for a person with AIDS to go, since there were no AIDS medications yet approved for use in the U.S.
“There were all these people there, and they were gaunt and sick,” Stansberry told Healthline. “People in line would say, ‘Where’s so and so,’ and he would have died. Other times people would show up with the deceased person’s meds and give them out.”
This was one year before Ron Woodroof, the inspiration for Matthew McConaughey’s character in the hit film Dallas Buyers Club, received his AIDS diagnosis. Woodroof went on to become a global drug smuggler who provided life-saving medications to people in the U.S., including himself.
Even before Woodroof launched the “buyers club,” people were already doing all that they could to get drugs to the sick. Operations like Woodroof’s club were operating in big cities everywhere, Dr. Demetre Daskalakis, medical director of the HIV/AIDS Ambulatory Care program at Mount Sinai Hospital in New York City, told Healthline.
“Dallas was not the only city where people created these sort of semi-legal, semi-illegal ways of accessing drugs and staying alive,” Daskalakis said. “There were lots of approaches involved.”
The U.S. Food and Drug Administration (FDA) did not approve the first HIV drug, zidovudine (AZT) until 1987. Before that, it could be legally prescribed in the U.S. only to people who were enrolled in clinical trials.
But even those people had a system for trying to stay alive, Daskalakis explained. People participating in the trials, not knowing whether they had been given AZT or a placebo, would get together and mix up their meds. The idea was that, statistically speaking, everybody would at least get a small dose of the real thing.
Stansberry said that he has not seen Dallas Buyers Club. He’s worried that it “may just be too much.” But he has heard about the character of Dr. Eve Saks, a compassionate doctor played in the film by Jennifer Garner. He said her actions describe those of the doctor who told his boyfriend where to go for the help she could not provide.
“She told us to go to a place on Cedar Springs and Throckmorton,” he said. “It was in the back of a building and you had to go down some steps, and it was pretty creepy. There was this old brown shag carpet, wood paneling, and a room with boxes in it. The boxes were filled with pills.”
Unlike members of the club in the film, who paid $400 a month for illegal medications that had been smuggled into the U.S., Stansberry said he and his boyfriend, Kemmy, paid nothing.
And unlike those who joined the fictionalized Dallas Buyers Club, Stansberry had access only to AZT, and not zalcitabine (DDC) or peptide T, which were portrayed as superior drugs in the movie.
DDC was approved by the FDA in 1992. Peptide T, a protein thought by some to relieve symptoms of dementia, has yet to be approved in the U.S.
Stansberry, who now requires third-line antiretroviral therapy and takes the latest HIV medications available, never took DDC or peptide T, nor did he have problems tolerating AZT, although he said Kemmy did.
Stansberry’s partner, Kemmy, received his diagnosis first.
“Kemmy lay sick for weeks, and I made him go to Presbyterian Hospital by our apartment,” Stansberry said. “They did some tests, and of course he came back positive and had AIDS.”
The AZT made Kemmy even sicker, Stansberry said. Kemmy told him that it was like taking poison. Stansberry watched Kemmy, a once-muscular gymnastics teacher, waste away until he weighed just 80 pounds. He died after being hospitalized for 97 days.
Daskalakis said the problem with AZT, which is still widely used today, was the dosing. Patients in the 1980s were being given too much. “People had anemia and were barfing their guts out and their hair was falling out,” he said.
Stansberry confirmed that the dose seemed extreme: four pills, four times per day. But he said he’s never missed a dose of medication—not when he was taking the smuggled AZT in 1985, and not with any HIV drug he has taken since. Today, Stansberry’s viral load is undetectable.
Now, Stansberry is back in his hometown of Davenport, Iowa. He works part-time at a bar, Mary’s on 2nd.
He admits it does seem amazing that he’s alive today, particularly after surviving a later battle with cancer caused by the human papillomavirus (HPV). For a while, he would tend bar while a pump attached to his waist administered chemotherapy.
Stansberry wants young men to know about the risks associated with contracting HPV. HPV is a common sexually transmitted infection and can be prevented by using condoms. A vaccine is also available and is recommended by the
Daskalakis said that the Dallas Buyers Club and other illicit medication distribution systems were from an era when “the system, working as it does, was slow and clunky.”
He currently sits on an FDA advisory board whose goal it is to speed up the approval of life-saving medications. “The pipeline was really slow at the beginning,” he said. “HIV has taught the system to work better.”