Interview with Nontombi Gungqisa, a TDF2 trial participant
GABORONE - Nontombi Gungqisa, a 25- year-old University of Botswana student, is participating as a volunteer with BOTUSA in the TDF2 Trial. An avid believer in "doing your part to help your country," Gungqisa shares what it's like to be a participant in a clinical trial.
1. When did you first learn about the clinical trial and what was your first impression?
The first time I heard about it was in January of 2006 from a friend who works in the field and knows me well, she knows what inspires me and what interests me. She knew that I have always worked in some fashion in HIV/AIDS, and I care about the issue very much. Our President Festus Mogae said we should all take part in doing something about this epidemic, and so I responded in the way I knew I could. I did not have lots of money, but I knew I could volunteer my time in order to benefit myself, my community and my country. So I did.
2. Has your attitude about the trial changed at all since you first enrolled?
Not really my attitude, but there have been several changes in the role of trial participants. At first I think things seemed more discrete, like we were hiding from each other and the public. But we participants said it shouldn't be that way. We are very proud to be a part of this, so things are more transparent now. We have even formed a Participants Advisory Group to discuss any challenges we face as trial participants and to have a more unified voice when addressing issues with the research staff.
3. Do you know people infected or affected by HIV/AIDS and did it play a role in what motivated you to volunteer for the TDF2 trial?
Like I said before, it's just the kind of person I am. I have always been interested and volunteered to work on HIV/AIDS issues. At one time, I thought it was a dreadful and hopeless disease, but after working with people living with AIDS, I came to realize it's something you can live with positively. I became a peer educator at my workplace, and later helped train other peer educators to counsel people on HIV/AIDS issues and condom use. I still help with peer training and orientation of new students at UB. If there is anything I can do to help further the fight against HIV/AIDS than I will do my best to help. And that's what this TDF2 trial is all about.
4. As a volunteer for the TDF2 trial, how much time do you have to give?
Really, I spend about 30 minutes to an hour each month. You are given free counseling and a check-up with the doctor once a month which takes about 30 minutes. On your first visit, it may take slightly longer because they have to explain, in-depth, the risks and benefits to being a volunteer in the trial. They want to make sure participants fully understand what they are doing. Since I am on the Participants Advisory Group I can spend maybe another 30 minutes per month in meetings.
5. Are there any drawbacks or worries to being a trial participant?
There have been no real drawbacks or worries. I am doing this with passion because I know it benefits me and my country. Some people think it will be difficult to take a pill every day. But you can decide what time of the day you are going to take that pill, then you just take it. If you enjoy what you are doing and know why you are doing it, there is nothing difficult about it. The BOTUSA researchers explained that since this is a trial to find out if Truvada works, some of us might get Truvada and others might get a placebo (a pill that looks and tastes like Truvada but has no medicine in it). Since there is no way to know if you are getting the medicine, you know that you cannot indulge in risky behavior. And participants are likely at lower risk of infection because of the prevention services offered to them.
6. What are the personal benefits to being a trial participant?
It is beneficial to me because I get a free check-up and health advice from a doctor once a month. I know I am a safe and healthy person because of this. During these checkups they say they will take care of you, and they really do. You get an HIV test, a pregnancy test for women, male and female condoms, and sometimes physical examinations and blood work. You can be told about how to reduce risks in your life and how to watch for other diseases like breast cancer or sexually transmitted diseases. On top of it all, you get transport money to come to your appointment once a month. These days it's expensive to see a private doctor for this kind of care and public health clinics don't really have time for you unless you are already sick.
7. What do your family and friends think about you participating in a clinical trial?
They were not shocked and my family was very supportive. They know I am passionate about such issues, so it was only natural that I would volunteer for this. In fact, it has been educational for all of them to learn through my participation. They saw me as a role model and I have actually convinced several of my friends to also volunteer for the trial.
8. Do you have any advice for others considering participation in the trial?
I would just encourage young people to come forward and take part in this fight against HIV/AIDS. This is not about money, it's just something you can do to add value to your life and to help the country. Personally, I have faith and hope that someday soon we will beat this virus. If this Truvada does work, than we will have another prevention tool in the fight against HIV/AIDS. That will take us one step closer to our nation's vision of "no new infections by 2016."