Frequently Asked Questions
Who is eligible to participate?
People living with advanced HIV/AIDS that have less than six months to live due to a terminal illness are eligible to participate. Terminal illnesses may include cancer, neurological conditions like Amyotrophic Lateral Sclerosis (ALS), an end-stage organ disease, or other illness that leads to death.
What should individuals do if interested?
Those interested in participating should call (619) 543-5000 and ask to arrange a brief (30-40 min) no-obligation Last Gift screening interview. The interview can be held at the HNRP facility or at another convenient location. During this visit, individuals and their loved ones will have a chance to ask questions about the study and understand all the parts of the study.
What will participants be asked to do?
Eligible individuals who wish to enroll will be scheduled for an initial evaluation. Surveys will be conducted and blood will be drawn during this visit. After the initial visit, we will be in contact with the enrolled participant on a regular basis to talk and discuss current health status. Blood will be drawn regularly. Additionally, our team will strive to develop a lasting bond during this difficult time. Interviews may also be conducted if permission is granted. Lastly, loved ones will be asked to prepare for a rapid autopsy procedure. In other words, the autopsy will have to be performed less than six hours after the time of the participant’s death. This is important to consider as a reality of this study because it might pose as an inconvenience to loved ones during this delicate time.
What if the participant is too sick, tired or busy to come into the clinic?
Our team understands that individuals with advanced illnesses may be very fatigued, which is why we will make every effort to accommodate every study participant. This may include traveling to another location, shortening evaluation time, or allow participants to temporarily forego assessments.
What are the benefits of becoming a participant?
There are no direct benefits of participating in the Last Gift study. However, indirect benefits may include the participant’s satisfaction of knowing they have made an invaluable contribution to the scientific community in its effort to find a cure for HIV/AIDS. Lastly, as the Last Gift team will meet with the participant regularly, they will have the option of connecting with a group of researchers, hopefully allowing for greater comfort during the end of life.
Is there compensation for the time I spend involved in the study?
Yes. Compensation is provided.