What makes clinical volunteers do what they do? Living with AIDS # 333

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?

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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.