In the second of this 3-part series, Sara Gianella Weibel, MD, on behalf of Infectious Disease Advisor, talks with Jeff Taylor, community activist and long-term HIV survivor, about ethical concerns and practical barriers in end-of-life research and how the HIV community will embrace this type of research.
Infectious Disease Advisor: Jeff, can you tell us about your story and how you started getting involved in the HIV community as an activist?
Jeff Taylor: I was diagnosed with AIDS back in the 1980s, when there was no treatment or cure. It was literally a death sentence. When you got your diagnosis, you were told that you had less than 2 years to live. In that setting, I had heard about research with azidothymidine (AZT) and tried to actively search for access to that drug, as it was not yet available. The only way to do that was by volunteering to be enrolled in clinical trials. I first started at Northwestern University in Chicago, Illinois, and then soon afterward moved to San Diego, California, where I continued in 1 drug study after another in a self-serving attempt to keep myself alive by getting access to the latest HIV treatments. The University of California, San Diego, is part of the AIDS Clinical Trials Group, and early on they decided to include the community in the research process. They started community advisory boards, and the university asked me to help form the first community advisory board at their site in San Diego. So, that is how I first got started as an activist, and I’ve been advocating for research ever since.
Infectious Disease Advisor: Historically, the HIV community has been open to scientific research. It is thanks to the engagement of the entire community that we have been able to develop effective treatments. Do you think the HIV community will welcome and embrace this new idea of end-of-life research?
Mr Taylor: Absolutely. The HIV community has always been extremely receptive to research because that is how we have made the advances we have. People are aware of that, and many of them participated in the early clinical trials or have friends who did. They wanted to be able to do something in memory of the people who did not make it. So I think the entire community will be excited about this new opportunity. I do not foresee any pushback whatsoever.
As with any research, there are some people who will not be interested and others who will. I think any community, and especially the HIV community, as they have benefited so much from research, will embrace this as well.
Infectious Disease Advisor: Do you think some people in the community or any researchers might raise ethical concerns about performing end-of-life research in light of the vulnerability of people as they approach death? What do you think will be the main ethical concern?
Mr Taylor: Well, sure. This came up when they first started talking seriously about cure research after the Timothy Ray Brown case (known by many as the “Berlin Patient“). People would not even say the word “cure” back then. It was the “c” word, and they were afraid to speak its name. One of things the researchers told the HIV community was, “We’re afraid to do this research. We don’t want to give people false hope, and we don’t want people to stop their drugs to test these treatments.” They thought, “Nobody will sign up. They won’t think it’s ethical.” And it was the community that pushed for this. We did some of our own research to prove that the attitudes were very much in favor of this: People were supporting it, and they were willing to take those risks.
In terms of end of life, within the HIV community, so many of us have been there ourselves or watched friends go through it, so it is not as foreign and scary a concept as might be for someone who has never had to face the grim realities we did during the first 15 years of the epidemic. So no, we are not as vulnerable as people may think we are. It is up to us as a community to push back against some of that reluctance and say, “No, we do want this. The community wants it, the world needs it, and we are willing to take some risks and support it.” Of course, it needs to be done ethically, and we want to be at the table to help ensure that happens, as we have done with other HIV research.1 Historically, it has been health professionals who have been the ones most likely to override patients’ desire to participate in this research to make a final contribution and give some meaning to their remaining time. People at the end of life are legally empowered to make all sorts of important decisions such as a will, medical directives, and even to end their own lives in some states now. So to deny them the opportunity to make this decision for themselves is at best paternalistic, and at worst infantilizing. We owe them better.
Infectious Disease Advisor: Will you participate in the Last Gift if you qualify? Will you recommend it to some of your friends or family at end of life?
Mr Taylor: Absolutely. I already have a sticker on the back of my driver’s license from other studies I have been in, saying that my body is to go to science when I die so that they can do research. I think this is a wonderful program because it addresses important issues that cannot be studied any other way in HIV cure research. So if we are going to make the advancements we need to find a cure, this is absolutely necessary. I think people are very much in support of it, and we can find a way to do it ethically. But it will take a lot of work and a lot of involvement from everybody, from all sides. But I do think it is possible.
Click here to read part 1 of this series, in which Dr Gianella Weibel talks with Davey Smith, MD, professor of medicine and head of the Division of Infectious Disease at the University of California San Diego, about ethical concerns and practical barriers in end-of-life research and how this type of research could be an important tool to advance the field of HIV cure.
Click here to read part 3 of this series, in which Dr Gianella Weibel talks with Anthony B, a patient with HIV and end-stage amyotrophic lateral sclerosis and the first participant in the Last Gift study about his experience in this innovative research study.
Sara Gianella Weibel, MD, is an assistant professor of medicine at the University of California, San Diego, Center for AIDS Research.
- Bolt EE, Pasman HR, Willems D, Onwuteaka-Philipsen BD. Appropriate and inappropriate care in the last phase of life: an explorative study among patients and relatives. BMC Health Serv Res. 2016;16:655. doi: 10.1186/s12913-016-1879-3