Last Gift Study: A Participant's Perspective on End-of-Life HIV Research
Anthony B talks about the opportunity to participate and provide a last gift to the HIV community.
In the third of this 3-part series, Sara Gianella Weibel, MD, on behalf of Infectious Disease Advisor, talks with Anthony B, a patient with HIV and end-stage amyotrophic lateral sclerosis and the first participant in the Last Gift study, the end-of-life HIV research program pioneered at University of California, San Diego, by Davey Smith, MD, and his team, about his experience in this innovative research study.
Infectious Disease Advisor: Anthony, can you tell us about your story?
Anthony B: I have been HIV infected since 1987, and similar to Jeff Taylor, I participated in many clinical trials of early antiretroviral therapy to survive. During those years, I lost dozens of close friends to HIV, and I witnessed hundreds of people die. Some of my closest friends decided to sell everything and leave for a long vacation around the world when they were told there was no hope. Instead, I refused to give up, and I survived until now. I found a lovely partner, and together we had a happy life for more than 42 years. Recently, I started noticing muscle weakness and fasciculation in my arms and legs, and I was falling down frequently. The physicians did many tests (spinal taps, magnetic resonance imaging of my spine and head, blood tests, electromyography), and we tried many therapies. I even had spinal cord surgery and a shunt placed in my spinal cord because the physicians believed my weakness was caused by a fluid-filled cavity within the spinal cord (syrinx). Nevertheless, it kept getting worse and worse. I felt helpless and sometimes frustrated, but the physicians were doing everything in their power to help. Three weeks ago, I was finally diagnosed with amyotrophic lateral sclerosis, and it was clear there was nothing else to do.
Infectious Disease Advisor: This has been a very short time to adapt to your disease. What did your grieving process look like?
Anthony B: This caught me by surprise, and we cried a lot at the beginning. I could not believe this was the end. I have been there before, but this time it was for real. I kept getting worse until I decided to enter hospice last Monday. At that point, I also decided to stop all therapies, including the HIV medications. I started looking for ways to help and give a purpose to my last weeks of life. This is my way of grieving. I was told that I am 1 of 40 cases of HIV and amyotrophic lateral sclerosis and that my story is very interesting to the medical community.
Infectious Disease Advisor: How did you hear about the Last Gift study, and why did you choose to donate your body for research?
Anthony B: I heard about the Last Gift from my neurologist, Dr Ronald Ellis, and I was immediately interested. The timing was perfect, as I was looking to find a purpose for my last weeks, and this was just the perfect opportunity for me and for my family. It was my decision, but my family has been very supportive. I think this is exactly what I was supposed to do, and it feels empowering and invaluable in this moment for all of us. Dr Ellis was very positively surprised about how fast and easily I embraced this opportunity, as I just learned about my devastating prognosis. It just seemed the right thing to do.
Infectious Disease Advisor: How did the research team approach you?
Anthony B: The team has been extremely professional. Susanna Concha-Garcia (the main outreach person for this study) has been fantastic. She talked to us with kindness, but very directly, and provided lots of details about the process. She came back multiple times to make sure we were ready and well informed. I also met the physician multiple times. The team took the time to discuss every point and made me feel special and part of a big story. They helped my partner and me with many practical issues and with the paperwork. They made sure my family was involved and on board, but they always respected our privacy. This is very important, as my family will need to be ready for the final moment so that they will let my body go without regrets. They know that this is what I want, and how important this is for me.
Infectious Disease Advisor: What do you hope that the outcome will be for the HIV community?
Anthony B: I hope my blood and my body will make a difference and will help researchers better understand where HIV hides in the body and eventually find a cure. As a long-term survivor, I care deeply about the HIV community, and I am thankful for the opportunity to participate and provide this Last Gift to my people.
Infectious Disease Advisor: How do you feel this research experience has affected your quality of life during the last days of your life?
Anthony B: Very positively. I did participate in many studies of antiretroviral therapy at the beginning of my HIV infection. But I did not have the opportunity to be involved in HIV cure research. Being able to participate in Last Gift at this point of my life makes me happy, and I am particularly proud to be number 1. It provides me comfort and peace to know my remaining blood and tissues will help somebody else. It was really important to meet the Last Gift research team and talk about their work and share my story. This program helped me in a large way. Everybody in my family is proud of me, and we all gained strength from this experience. I am happy to leave this little piece of myself behind. In this way, I feel my legacy will not die with me.
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 2 of this series, in which Dr Gianella Weibel 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.
Sara Gianella Weibel, MD, is an assistant professor of medicine at the University of California, San Diego, Center for AIDS Research.