Table 1.

IRB-approved interview guide: perspectives of diverse long-term survivors of HIV on interventional HIV cure-related research at the end of life (2023–2024)

Introduction

First, thank you so much for your time in participating in this interview about HIV cure-related research at the end of life, which we are now recording.

Acceptability of Testing Interventions in People with HIV at the End of Life

To date, end-of-life HIV cure-related research has been limited to observational assessments – for example studying what happens to HIV reservoirs deep inside the body when ART is maintained or interrupted by the study participant. This type of research is providing scientists with priceless insights into the HIV reservoir that cannot be gained in any other way. This is the reason for the study name. Through their last gift of permitting study of their bodies after death, participants make a unique contribution towards an HIV cure for others in the future.

Because of the success of these observational end-of-life HIV cure studies, there is now growing interest in the possibility of testing HIV cure interventions. PWH would undergo study interventions, or procedures, solely to advance HIV cure-related research, not in the hope of staying alive or prolonging life. PWH enrolling in this type of research would do so entirely for altruistic reasons, to help others and with no expectation of medical benefits to themselves for their HIV or other illness.

• In general, do you think people with HIV who are approaching the end of life should be offered the opportunity to participate in interventional studies? Why or why not?

• Next, I will describe briefly several types of such interventional studies. Please tell me your views about offering the opportunity to participate in each type.

o Latency-reversing agents (compounds that would reawaken HIV that has become dormant inside the cells so that the virus can be targeted for clearance by an intervention or therapy)

o Immune-based strategies (approaches that are aimed to strengthen the immune system)

o Cell and gene approaches (approaches that are aimed to make cells resistant to HIV infection and may involve gene changes that would not be passed to your children)

o Block and lock strategies (approaches that block reactivation of HIV in dormant cells without eliminating them, then locks them in that sleeping state)

o Combination approaches

• Do you think participants in these types of studies should have the option, as some PWH desire, to interrupt HIV treatment as they approach the end of life?

o Why or why not?

o What types of safeguards should be put into place for underdoing HIV treatment interruptions at the end of life?

Closing

• Is there anything else you would like us to know about HIV cure-related research at the end of life?