What makes clinical volunteers do what they do? Living with AIDS # 333
Whether it’s to test a vaccine or a microbicide to reduce HIV risk, clinical trials rely heavily on the goodwill of people. Without them, such trials won’t take place. But what motivates people to want to be part of these trials?
KHOPOTSO: Conversations with participants in various research studies over the years, point to one thing: A number of South Africans genuinely need to make a contribution in preventing the indiscriminate spread of HIV. For many, the need is unopposed even in the face of severe criticism from others.
S.M: I think HIV is not about who is positive or not. It affects all of us. So, I’m doing this for all of us. I don’t feel like a guinea pig. Somebody’s just said ‘you are a guinea pig’ (she laughs). I don’t feel that way at all.
KHOPOTSO: A 25 year old Soweto woman participating in a safety trial which began in April last year to test a vaccine called Fit-Biotech. Fit-Biotech broke new ground in that it was the first ever to be tested in HIV-positive people. Hence, it’s called a therapeutic vaccine. The participant, who prefers to be known as S.M, says in addition to doing something for her country, participating in the trial has also contributed a lot in her personal life.
S.M: I think I have already benefited because I have the knowledge about HIV, how it works, and the vaccines. Just to know that there’s something being done. That’s what I’ve benefited.
KHOPOTSO: Many kilometres north of Soweto, is another township area of Soshanguve, near Pretoria. There resides a 21-year old young lady whom we will name Lebogang. The third-year Internal Auditing student at the Tshwane University of Technology is a volunteer in a Phase III microbicide trial testing the efficacy of a seaweed-based vaginal gel, called Carraguard. In this study, only HIV-negative women were enrolled. Lebogang wanted to participate because she, too, wanted to make a contribution.
LEBOGANG: HIV is there. It’s everywhere.
KHOPOTSO: But she’s also aware that there are many people who will not participate in research trials – and for various reasons.
LEBOGANG: It is really saddening to see that people don’t want to involve themselves in such studies because there’s this fear, you know ‘ you don’t know whether you’re positive or negative; what’s going to happen; people knowing your private life.
KHOPOTSO: Participating in a research trial has been a positive life-changing experience for many. In 2005, Mmapaseka and Thabang, a couple living in Orange Farm Extension 4, south of Johannesburg, enrolled in a study investigating the impact of Acyclovir – a medicine used in the treatment of a sexually transmitted infection called Herpes Simplex Virus-2 – on HIV transmission rates in discordant couples. Earlier, research data had shown that if a person has HIV, and is also infected with HSV-2, the infection greatly increases their chance of passing on HIV to their uninfected partner.
MMAPASEKA: We like this study very much because it helped us to know what our status is’¦ because we came here (and) we know our status. We didn’t know our status (for) four years now, until we know two months now.
KHOPOTSO: Mmapaseka is HIV-negative. Thabang, her partner and father of her toddler, has both HIV and herpes.
THABANG: It’s also good to me because I used to drink too much every weekend. I used to eat everything that I liked, but now, at least I know what I must do ‘ even drinking now, I know I must limit ‘ not too much like before’¦ I also say thanks God to have this lady because she helped me a lot. Since we found out that I’ve got this thing she never ran away or changed. She’s still with me and she helped me a lot.
KHOPOTSO: From these conversations it’s clear that participating in clinical trials is an act of selfless giving. It’s also clear that participants gain a lot from the process. But, says Prof. Lynn Morris, a researcher specialising in HIV vaccines at the National Institute of Communicable Diseases, in Johannesburg, volunteers must be commended for their role in scientific research.
Prof. LYNN MORRIS: We have to remember that clinical trials are experiments in humans. That’s what they are because we’re testing something because we don’t know. And the people who participate in trials really have to be applauded because they are true altruists. I mean, these are people who are doing something, not for themselves, because we don’t know if it’s going to work’¦ If volunteers didn’t participate, we wouldn’t be able to run the trials’¦ They’re also giving up their time because they have to come to all these clinic visits, they have to take time off work, they have to adhere to a schedule, and these trials go on for years.