A recent multi-center study reveals that people are willing to risk everything to contribute to a cure for HIV. In fact, the study uncovered that nearly 25% of people living with HIV were willing to risk near-certain death in a clinical trial if such a study would contribute to the quest for a cure of the deadly disease.
A Bigger Cause
On study interviewee declared, “I am not going to live forever” and further exclaimed, “It’s about the next man, the next woman, and you have the mindset to care about people, which I do.” Another person pointed out, “I’m willing to go the course for the cure and for the HIV community. I can’t imagine how many people’s lives would change if there was a cure.”
The investigators interviewed 22 HIV-positive individuals to identify the extent of risk they would be willing to take and accept if it meant finding a cure for HIV and hence preventing the death of others—however, perhaps not themselves. The subjects in the study included 16 men and 6 women. The average age was 49 years old and, on average, they had been HIV-positive for 6 months to 27 years. Their personal health information was deidentified.
Nearly 25% of these participants would expose themselves to risk of “near-certain death” (99%+ chance of dying) if the study could lead to a cure for the disease. Their rational was segmented by the following categories:
- Altruism: “I would volunteer to be the one to die if 99 could be cured. It’s humanity. It’s human compassion.”
- Nothing to lose: “I got to be positive that I might die, and I would be—I’d be content with that.”
- Psychosocial benefits: “That would probably be the only reason I would want to take a cure, is to remove that element, to not feel in any way disadvantaged or stigmatized.”
- Avoid future health changes from continued HIV infection: “I think HIV is going to shorten my life.”
- Positive attitudes toward health care research: “I am 100% behind, you know, any type of research. If it doesn’t help me, it’ll help the younger generation and the people to come.”
- Multiple reasons for risk of death: “I am a strong person, and I am not going to live forever. It is about the next man, the next woman, and you have to have the mindset to care about people, which I do.”
For those not willing to risk their lives, they fell into the following categories:
- Negative attitudes toward healthcare research: “I don’t do clinical trials…I am not a guinea pig.”
- Cure not worth it: “I have no risk of dying from the medication at this point, and I have no risk of getting reinfected.”
- General unwillingness to risk death: “A cure would be wonderful, but going through it…and then I might croak…I cannot risk that.”
- Uncertainty about risk taking: “I’d be scared. And most likely, I probably wouldn’t…Because I still [have] my life ahead of me.”
Modified Ethical Standards
What if people are willing to put it all on the line to contribute to a bigger mission, such as a cure? How does that impact the ethics of the trial. The study’s authors suggest that if there are individuals living with HIV that are permitted to enroll in risky HIV clinical trials, there should be additional ethical safeguards. There are and should be ethical boundaries. For example, the profit motive needs to be scrutinized and checked in such situations. A framework that factors in patient preferences should represent a major consideration in high risk trials but there are situations where the commitment and dedication of individual patients could be exploited by entities seeking profit maximizing as the end goal and that cannot be allowed.
Challenges With Study
The study sample size isn’t large, and we believe academia can harness its talents, resources and energies into concrete, pragmatic endeavors that can boost the quality of life for those living with HIV today. We applaud the researchers’ intent and creativity to identify and tap into this patient population sentient. We think precious academic research resources can be mobilized directly in communities, for example, to generate rich research that helps bolster community care coordination and “Whole Person Care” scenarios where goals of improved individual and community HIV health outcomes could be achieved. Moreover, the improved understanding of HIV patient psychosocial, environmental, health and other factors help direct potential study candidates to studies that can make a difference.
Current Drug Status
Today, there are 55 therapy treatments (individual and combination drugs) available to treat HIV and AIDS. However, despite this, 32 million people died of HIV and 37.9 million were living with the disease at the end of 2018. About 1.1 million of these individuals resided in America. There are at least 32 clinical trials—with another 12 clinical trials ongoing investigating a number of combination treatments for even better patient results. But a cure continues to remain elusive.
· Allison Kratka, Internal medicine resident at Brigham and Women’s Hospital
· Peter A. Ubel, Professor in the Fuqua School of Business at Duke University
· Karen Scherr, Internal medicine resident at the University of Washington
· Benjamin Murray, Internal medicine resident at the University of Washington
· Nir Eyal, Directs the Center for Population‐Level Bioethics at Rutgers University
· Christine Kirby, Program coordinator in the Center for Health Equity Research at Northern Arizona University
· Madelaine N. Katz, MPH candidate at the Gillings School of Global Public Health at the University of North Carolina at Chapel Hill
· Lisa Holtzman, Program manager in the Department of Global Health and Population at the Harvard T. H. Chan School of Public Health
· Kathryn Pollak, Professor in Population Health Sciences and is the associate director of population sciences in the Duke Cancer Institute at Duke
· Kenneth Freedburg, Director of the Medical Practice Evaluation Center and is a professor of medicine in the Divisions of General Internal Medicine and Infectious Diseases at Massachusetts General Hospital and Harvard Medical School
· Jennifer Blumenthal‐Barb, Associate director and Cullen associate professor in the Center for Medical Ethics and Health Policy at Baylor College of Medicine