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HIV Survivors Give Their 'Last Gift' In A New San Diego Study

September 11, 2017 1:15 p.m.

HIV Survivors Give Their 'Last Gift' In A New San Diego Study


Dr. Davey Smith, professor, UC San Diego School of Medicine

Related Story: HIV Survivors Give Their 'Last Gift' In A New San Diego Study


This is a rush transcript created by a contractor for KPBS to improve accessibility for the deaf and hard-of-hearing. Please refer to the media file as the formal record of this interview. Opinions expressed by guests during interviews reflect the guest’s individual views and do not necessarily represent those of KPBS staff, members or its sponsors.

This is KPBS Midday Edition. I am Maureen Cavanaugh . When HIV first started spreading in the US, it was a death sentence for many. Today, it is manageable for those with access to the right drugs. There is still no cure. A team of researchers in San Diego says to get there, scientists need to study patients at the end of their lies. David Wagner tells us about the ambitious new study and the people signing up for.


Blake Miller comes to life when he opens the door for his little dog

This is Sage. This is sentiment.

Cayenne and ginger round out the pack. He calls them the Spice Girls. These days, the house is quiet. Miller's long term partner died from ALS. They were both in the military when you could get kicked out for being gay. It was a different time but for anyone like Miller's partner who was HIV positive.

He probably -- he probably lost 100 mice. The mind that he did have, they were sick and they live to the fullest they could.

Against the odds, Bennett survived to see HIV become something people could live with. Along the way, he participated in research studies and went ALS give him a month to live, he wanted to keep giving back.

Over the years, you get to learn to know somebody and his biggest thing was helping others.

That is why a new research effort came in, the last gift study focuses on HIV patient at the end of their lives. Patients stop taking the drugs towards the end and they let researchers draw blood regularly to monitor the activity of the virus. They consent to having bodies autopsied within hours of death.

When he asked if he would donate his body. We both smiled and he said yes. Anything you want.

Davey Smith leads the study. He says the goal is to find out how the virus persists in patient's bodies how changes and how it comes back when drugs do not keep it under control.

The vast majority, the virus comes back in 4 weeks. Where it is hiding is a no.

This is what is needed to advance research towards developing a and it is ethical to study HIV patient who stop taking the meds when they are already at neared death.

We are not trying to cure what is causing them to be terminally ill. When they participate, they are doing so of the goodness of their heart. Specs are they a is an outreach coordinator and she talks with people who lived through the AIDS crisis of the 80s and 90s and had to watch friends die.

They did not know why they didn't and they made. They want to give something back.

They realized this study asks a lot of patience and the loved ones. Jules wonders if it is work it.

In the end, are we really going to find a cure ?

He thinks too much research is focused on a cure when HIV patients are dealing with aging related problems like cognitive impairment, frailty and higher cancer rate and he says those are not adequately addressed.

Should we do cure research? Yes.

But it is sucking the air on the aging problem.

He agrees the more immediate needs are important to address but he thinks efforts like the last gift study are important also.

We need a cure because thousands of people still get infected every year and thousands die. There is still a stigma attached to it. Anthony Bennett is the only patient to have completed the study and researchers say it is too early to report results. Blake Miller says he is proud of his partner.

Knowing it was the laughed thing he could do, it made great.

They aim to enroll five patients per year over the next five years. KPBS news

Joining me is Doctor Smith, the leader of the last gift study. Welcome to the program.

For having.

We heard he wanted to autopsied the bodies within hours of death. Why so quickly?

HIV virus is a fragile virus. It is made of an asset called RNA. In doing autopsy studies, infective individuals, the virus degraded quickly. We needed a way to preserve the virus before it degraded so we could study it. When this study -- we have a short period of time between death to autopsy so we can preserve as much is there for the study.

What kind of information might you find these autopsies that you would not from a patient who actually died of complications from HIV/AIDS.

These are controlled. These people are dying of other things. We all die so they die of cancer and ALS but in this situation, since it is very control, the virus is coming back and we can see where it populates in the different parts of the body.

Does going without the meds in the last weeks or maybe a month or so of a terminal patient's life cause them additional health problems?

It might. It is their choice. What we saw when we were preparing for the study is that people who were infected and were going to die of something else, they did not want to take medicines anymore. About half of the individuals decided that. That left us an opportunity to study them during that time. It populates the different tissues that we are looking for at that moment, we can then figure out which virus was new and which was old and which was alive and which is old. We can develop therapies to eradicate it.

You say this research could lead to more aggressive form of experimental treatments. Is anyone doing that work now for HIV patients ?

They are. There are cure efforts across the country and the world. They are using new medications called immune modulators. Those therapies can be rather risky. At the moment, they are trying to minimize the risks but they are tried in people who are otherwise healthy. They will live long and productive lives but they want to get back to the community so they are undergoing the cure studies. Those medications, especially the immune modulators might carry a risks or a lot of risks. What we found during our preparation for the current study is that some people would be interested at the end of their life. They accept more risk.

Does that risk involve the risk of death for the healthy people who are undergoing these test ?

Perhaps. At the moment, none of those studies are ongoing. This is hypothetically thinking about is this an ethical way to test the more risky compounds.

There has been a person who has been cured of HIV. Isn't that right ?

Tell us about "First Person" .

Just like our patient who was adamant that we use his name, the Berlin patient, his name is Timothy Brown and he was cured through multiple transplants with a specific type of bone marrow. It was very risky but it was to save his life from leukemia.

There has been no detectable HIV virus in this patient, even though he is not on medication ?

He is not on therapy and the virus has not come back. There is reports that they can small bits of virus but it does not looks like that virus is alive.

Is that the thing that could be replicated in other patients ?

Yes. That is a big effort, to figure out what happened with Mr. Brown and why the virus is not able to come back.

Back in the 1990s, I believe, when you were in medical school, AIDS was for many people a death sentence. What do you think the future holds for people living with HIV ?

That is a good question. I started internship in 1986 and the hospital was full of individuals dying of AIDS. I witnessed a modern medical with the new medications and people got up and walked out and lived normal and happy lives as long as anybody else. We did not believe that was possible until it happened, which was amazing. The same thing can happen with the cure efforts. Nobody believes it can happen but one day, it will happen and they say it will be possible. I think that is what we are shooting for but people now are growing older and they are getting age-related disease and everything that we all get and we all die of something. Luckily, people can take the medicines and do well that we currently have. They have no increased risk of mortality.

You are hoping more people will be willing to donate bodies to this research. Have people in the HIV community been receptive to this?

It is funny. When I talked to some of my colleagues, they are saying you cannot. This is a vulnerable population. You have to be careful with research. I agree. We engage in lots of emphasis before him. My colleagues can be paternalistic and you cannot engage people but when we went to talk to people about the research study when it was hypothetical, these are the last few moments I have, I feel like they are wasted because I am not giving back to the community. Come to my community.

It was uplifting to hear those things. This study was available, it was last your, I would anticipate.

When I asked my colleagues, if you were at the end of your life and you had an opportunity to do research, would you do it ?

I never thought about that. Yes, I would be interested. It is more of a balance between being the participant and the researcher and thinking about different aspects of it.

I have been speaking with Doctor Smith. He is the leader of the last gift study. Thank you.