Editor—Although many HIV positive patients play an active part in their treatment, it is proving increasingly difficult to recruit patients for clinical trials in the United Kingdom. There are reasons for this.
There is only a limited supply of “treatment naive” patients. Also, people living with HIV who are already taking antiretroviral drugs are seeing their lives improve. For those beginning treatment there are many drugs available. Combination therapy is working and patients’ health is improving. So why participate in a clinical trial? Perhaps if the highly effective antiretroviral treatment begins to fail, we may see an increase in recruitment for clinical trials.
To better attract participants, trials need to be topical and to fit in with a potential participant’s current drug regimen. People living with HIV need good, clear explanations of proposed trials. Detailed information about the uncertainties of the treatment, about the research that has prompted the trial, and about the potential risks and benefits of joining the trial need to be supplied to potential participants. Similarly, clear information about the progress of the trial must be provided regularly to participants, together with information on the final conclusions showing what has been learnt.
All this is essential, because many people living with HIV are well educated about the disease and may well be self taught in HIV medicine to a considerable degree. Many people living with HIV are better versed in using the internet to find information about HIV and new treatments than are their clinicians. Convincing such people—who may be influential in the community—of the necessity of a proposed clinical trial is a challenge for health service providers.
Only a small group of people living with HIV participate in clinical trials. However, because the disease is so new, all those living with the virus are actually participating in trials. This is in marked contrast to people living with other serious, chronic illnesses. All HIV positive people are answering important clinical questions. To motivate and encourage people living with HIV to participate in clinical trials, clinicians should emphasise the advantages of participation.