Back when HIV first started spreading in the United States, it was for many a death sentence. Today, it has become manageable for those with access to the right drugs. But there is still no cure. And a team of researchers in San Diego says to get there, scientists need to study HIV patients at the end of their lives.
The Last Gift study at UC San Diego is a unique new research effort focusing on HIV patients with a terminal illness such as cancer, ALS or advanced heart disease. Participants must have a prognosis of less than six months to live. When they near the end of their lives, they stop taking their HIV medications and let researchers draw blood regularly to monitor the activity of the virus. They also consent to having their bodies autopsied within hours of death.
UC San Diego School of Medicine professor Dr. Davey Smith leads the study. He said the goal is to find out how the virus persists in patients' bodies, how it might be changing in different organs and how it fights back when drugs are no longer keeping it under control.
"When people stop their medications — the vast majority of them — the virus comes back within about four weeks. And where that virus comes from, and where it is hiding while the therapy is on, is still unknown," Smith said.
Careful observations at the end of life, rapid autopsies and virus genome sequencing are what is needed to advance research toward developing a cure, Smith said. And since it would not be ethical to ask otherwise healthy HIV patients to stop taking their medications, this kind of research can only be done on those already near death.
"Here, it is very clear: they are not going to benefit from this study," Smith said. "We are not trying to cure whatever is causing them to be terminally ill. So when they participate, they are doing so really out of the goodness of their hearts."
The first participant to go through the study was Anthony Bennett, who died in July a few months after being diagnosed with ALS.
Bennett lived in Oak Park with his long-term partner Blake Miller and their four energetic little dogs Cayenne, Ginger, Cinnamon and Sage. The couple called them their "Spice Girls."
"This is him in his Army uniform," Miller said, holding a photograph of Bennett as a young soldier.
They were both in the military back in the 1980s, when you could get kicked out just for being gay. It was a different time. Not just in the military, but for anyone — like Bennett — who became HIV positive.
"He probably lost over a hundred friends that died of HIV," Miller said. "And the friends that he did have were of the mind that, you know, we're sick. We could die. But we're going to live. And they lived to the fullest that they could."
Against the odds, Bennett survived long enough to see HIV become something people could live with, thanks to antiretroviral drugs. Along the way, he participated in many studies. Miller said Bennett was motivated to participate in research in part due to feelings of survivor's guilt. And when ALS gave Bennett only months to live, he wanted to keep giving back in some way.
"Over the years, you get to learn to know somebody," Miller said. "And his biggest thing was helping others."
That was where the Last Gift study came in. Researchers discussed the aims of the study with Bennett, and he consented to it. Miller was also on board.
"When they asked us if he would donate his body, he looked at me and I looked at him. We both smiled and he said 'yes, anything you want,'" Miller said.
Susanna Concha-Garcia is an outreach coordinator for the study. She talks with lots of people like Bennett, who lived through the AIDS crisis of the 1980s and '90s, and had to watch their friends die.
"Or they were caretakers themselves," Concha-Garcia said. "They took care of friends who eventually died. And they don't know why they didn't. They're the ones who made it. And they want to give something back."
The researchers realize this study asks a lot of patients. It also asks a lot of their friends, family and partners, who must call researchers as soon as they can after their loved ones die. The Last Gift study has doctors on call, with the goal of completing autopsies within 6 hours of death in order to get as accurate a picture of viral activity throughout the body as possible.
National AIDS Treatment Advocacy Project executive director and HIV activist Jules Levin wonders if all of this is worth it.
"In the end, are we ever really going to find a cure?" he asked.
Levin said he thinks too much research is focused on a cure at a time when more and more HIV patients are dealing with aging-related problems like cognitive impairment, frailty and higher cancer rates — problems that he feels are not being adequately addressed.
"Should we be doing cure research? Yes," Levin said. "But it's sucking all the air out of the aging problem in this country."
Smith agreed that the more immediate needs of an aging HIV population are important to address. He said his colleagues at UC San Diego are working on that in other ways. But he thinks efforts like the Last Gift study are important too.
About a decade ago, a man known as the "Berlin Patient" was effectively cured of HIV. And researchers like Smith have been working to find out if cures could be developed for others too.
"We need a cure for HIV because thousands of people still get infected in the United States every year. And thousands of people die," Smith said. "And there's still a stigma attached to it. So, having a cure for HIV would be one of the modern miracles, if possible."
For now, the Last Gift study is only doing observational studies on patients at the end of their lives. But Smith says this research could eventually progress to more aggressive experimental treatments, perhaps tweaking patients' immune systems in attempts to completely eradicate the virus.
So far, Anthony Bennett is the only patient to have completed the study, and the researchers say it is far too early to report any results. Blake Miller said he is proud of his partner.
"For him, knowing that it was the last gift, the last thing he could do… it just made him very happy," Miller said.
The Last Gift study aims to enroll about five patients per year over the next five years.