Strident, but essential: the voices of people with aidsBMJ 1997; 314 doi: https://doi.org/10.1136/bmj.314.7084.888 (Published 22 March 1997) Cite this as: BMJ 1997;314:888
- Peter Busse, executive committee member, NAPWAa
In the developed world the voices of advocacy groups for people infected with HIV have long been strident. This stridency arose from the behaviour of drug companies, which, together with physicians, were controlling access to, and knowledge about, antiretroviral treatments. Many such groups have a good understanding of the required protocols for drug trails and the available treatments which may prolong lives.
In South Africa the community of people infected with HIV has yet to raise its strident voice. Its stand is largely tentative, unarticulated, and mostly ignored. As a member of NAPWA–the National Association of People Living With HIV/AIDS–I am part of the growing community of HIV infected people working to change this. I attended a meeting of the ethics committee chaired by Professor Cleaton-Jones at which a proposed trial protocol was being evaluated. It was the first time that a member of an advocacy group had been present. It is, as Cleaton-Jones said in his article, our “safety, integrity, and human rights” which are being decided on, and we must have a voice and be heard in the debates about which trials will be supported and undertaken and which will not.
Yet, I found it difficult–because of the diversity of views and of our ignorance about the debate about treatment–to confidently articulate the views of my community on trials of drugs for treating HIV. There is a tension between investigators and clients with regard to these trials. To researchers the trials are often seen as experiments and we are research subjects, whereas to people like myself the trials are something far more important: they are seen as treatment rather than research–and are often the only way in which we in South Africa have any access to treatment–as well as being a source of hope that the new drug combination will prove to be the “magic bullet.” This tension is particularly acute because the quality of medical care is highly variable and there is little recognition from the government or the drug companies of the need to make effective treatments available at a price that most people could afford. The final tension is, as Cleaton-Jones points out, what happens to the research subjects once the trial is over.
Although there is a strong feeling that it is unethical to allow people to enter trials when the treatment will cease after a specified time, many people feel that access to limited and potentially beneficial treatment is better than no treatment at all. There is always the hope that a way will be found for beneficial treatments to continue. Both these views are debated in the community of HIV infected people. This is essential so that when members of our community are asked to give “informed consent” they have been well prepared, given Cleaton Jones's recognition of the inability of many researchers to explain the protocols clearly and effectively to those “insufficiently educated to understand the implications of what they are consenting to.”
These tensions need to be resolved. Our voice must be heard, not in a patronising and glib way, but in a manner which indicates a real commitment to seeing our concerns as genuine worries rather than irritating stridency. Of course, the widely divergent community of HIV infected people at present allows for investigators to exploit our differences and lack of detailed knowledge to engage some sectors but not others. Cleaton-Jones's article highlights the need for NAPWA to develop a clear and well articulated stand on trials that all people infected with HIV will feel confident in supporting.
People infected with HIV have a right to decide whether they participate in trials. Investigators and drug companies have an obligation to share their knowledge and debates about treatment with the community that they wish to enrol for further research. Failure to do so will ensure that HIV infected people remain suspicious both of their intentions and commitment to finding an affordable treatment from which we can all benefit.
With special thanks to Mary Crewe for support and encouragement over the years