Taking part in HIV cure research at the end of life
By Sara Gianella, Jeff Taylor, Davey Smith, and the Last Gift Research Team

‘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.’ Tony Bennett (above, surrounded by his partner Blake and a cousin) was the first to take part in The Last Gift.

“When we love and give without expectation, we are at our finest.”

—Patrick Gray, author and activist

Most HIV research today is conducted with blood samples. But to cure HIV, we need a better understanding of how the virus hides in all the tissues. We also need to know if the virus circulating in the blood is the same as (or different from) the virus in the heart, lymph nodes, liver, genital tract, or any other tissues throughout the body.

The Last Gift is an end-of-life HIV research program being performed at the University of California San Diego (UCSD), with the goal of understanding the behavior of HIV throughout the human body. Altruistic people living with HIV who are terminally ill are eligible to participate in the Last Gift study. These people provide: 1) detailed clinical, risk, and socio-demographic information before their death (e.g., use of antiretroviral therapy [ART] and other therapies, surgical procedures, other infections, etc.); 2) regular blood draws while they are alive; and 3) donate their entire bodies after they die for the purpose of a rapid autopsy. So far, eleven people have enrolled, seven of whom have passed away. The Last Gift team was able to successfully perform each autopsy within the six-hour timeframe necessary to optimally preserve the integrity of the virus and tissues collected. These unique samples are invaluable in providing an insight to where the virus hides—so we can find ways to combat it, and hopefully find a cure one day.

Tony (Anthony) Bennett was the initial Last Gift participant. He enrolled in June 2017, after being diagnosed with end-stage Amyotrophic Lateral Sclerosis (ALS, aka Lou Gehrig’s disease) and donated his entire body to HIV research after passing away July of the same year. Tony was a smart, kind, and altruistic person who loved dancing and always saw the positive in life. After learning about the end-of-life study, he immediately signed up with the support of his partner, Blake, and the rest of his family. During study interviews, Tony expressed what the study meant to him:

“It was really important to meet you and the Last Gift research team at this moment of my life to talk about your work and to 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 that my legacy will not die with me.

“Being able to participate in Last Gift at this point of my life makes me happy, and I am particularly proud to be number one. It provides me comfort and peace to know my remaining blood and tissues will help somebody else. …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.”

Michael (Max) Danielson was another generous Last Gift participant who donated his body to HIV cure research in March 2019. Like Tony, Michael was a long-term survivor of HIV who had been diagnosed with end-stage ALS. Michael quickly became a passionate advocate for the Last Gift study and a close friend to the entire team. He spent his last months of life maintaining his good spirit, tirelessly raising awareness and funds for HIV and ALS research, and advocating for the End-of-Life Option Act in California, which is currently being disputed in court. Below are a couple of quotes from Michael which exemplify his dedication to the study and HIV research:

“My death will not be in vain. It will allow me to leave a positive legacy and inspire others to give back.

“I believe in the work that is being done. I believe in the study’s philosophy.”

As a former publicist in Hollywood, Michael, with the help of his friend and award-winning director Terry Parrish, decided to document the last months of his life—including an extraordinary look into the day of his passing. This was part of his personal desire to advocate for greater participation in, understanding about, and support for the causes he championed, including The Last Gift Project. While in the midst of the documentary’s production (running title: Terminal Kindness) Michael said:

“I’m grateful for the opportunity to do something that is, that will make all this meaningful. …I’m in a unique place to be able to participate in it. So, I’m glad that I can—with this documentary that’s being produced—I’m glad I can provide a voice and maybe open the dialogue for people to talk about mortality, talk about how their lives can benefit others, and find meaning in all of this.”

Tony and Michael are two examples of our exceptional cohort of Last Gift study participants. These two men lived with HIV for a long time, and at the end of their life decided to give the ultimate last gift to HIV cure science. Each of our study participants is unique and provides an indispensable piece to the big puzzle of HIV cure research. We hope to be able to further honor their important legacy by contributing to the field of HIV research.

“From our first breath to our last, each of us tells a unique story. Here, we honor our Last Gift participants for their altruism to further research into HIV and the human condition. We take this moment of silence to honor their gifts and express our gratitude for all the discoveries their selfless donations will yield.”

—Statement read before the minute of silence preceding each Last Gift autopsy

For more information about the Last Gift study, go to lastgift.ucsd.edu.