'Mr
HIV RESEARCH Ltd.'"Research, research...are we animals? Why so many research studies and why do they all seem to be aimed at us Africans?" I was confronted with these questions recently when I was a researcher for two studies, the Padare Project examining the HIV knowledge and sexual attitudes of Africans in London, led by the able Martha Chinouya, and Sigma Research's Project Nasah which looked at their treatment information needs.
So why am I all for research? Because so many issues need to be addressed by our community. Being part of these two studies enabled me to fully understand and further appreciate the problems of African people living with HIV/Aids; for example, why people present late for testing and treatment services. This kind of research fulfils a good purpose, and people should look harder at the long-term benefits of research to the community.
One of the reasons that people are apprehensive about participating in research is perhaps because there isn't enough feedback from organisers; the research hasn't been used directly to encourage changes in peoples lives. I hope that one day, the findings of the two studies will influence general change.
If you read the Sigma Research report, you will see clearly that little is known about the HIV treatment needs of African people with HIV. "Even here in London," it says, "there were relatively few treatment information interventions aimed exclusively at the African audience. The ones that did exist had been developed on the basis of limited and largely anecdotal understanding of need."
We know so little about African people with HIV because, despite some of my interviewees' feelings, this group has in fact historically received little priority in research. Adequate funds have not been allocated in this area. HIV support groups organise things with their tiny grants like traditional dances that don't directly improve our well-being. So when a precious little does get set aside for research, I feel we should celebrate, not protest.
We deserve more and better consideration. Why should other people lobby, campaign and talk on Africans' behalf when there are so many able African women and men around, including me, who could do the job? Now is the time to talk for ourselves and inform others, as we know our issues too well. And this includes getting involved in research. This is the only sure way of providers meeting our needs.
We need to move away from the culture of suspicion and get involved in our destiny. So many times I have overheard people asking "are we guinea pigs?" If we are not pleased or ready, we should just say, "Sorry, I can't participate".
We also need to read more and access as much information as possible. This goes especially for us men! We must not simply rely on our women to be the couriers of leaflets and magazines. More women are getting exposed to what's occurring on the ground level, and that's enabling and empowering them to lead more decent and informed lives. But this doesn't seem to be happening for the men. Like my good friend once asked me, should we continue begging for information and other resources from our own women?
The
Sigma report concluded with a list of needs to be met. Africans need to live in
adequate and secure houses, not like the pantry I once lived in (joke!). They
must have privacy, if and when they want it. They should have enough money, be
able to sleep well, eat and drink adequately and lastly must be able to keep or
be joined by their children.
As for the Padare report, this study's findings were in many cases so unexpected that the authors immediately recommended that a larger study be undertaken to assess the levels of HIV-related knowledge, attitude and behaviour in our whole community. I encourage anyone out there interested, to get involved, so that more effective services can be developed and tailored to our needs.
We HIV positive people need care all the time. Because once HIV creeps in, it does not leave, it becomes part of our company. So I will leave you with this sign-off: 'Mr HIV Ltd says: I LOVE YOU ALL'.
