But perhaps the whole emphasis on the testing strategy is somewhat premature, and health care providers, community based organisations and advocates should primarily focus on protecting the patient and providing them with greater incentives to test (providing ART to those who need is just one aspect of this).
Before moving on to more aggressive testing, perhaps we need to ask ourselves: What systems or efforts are being established for making certain that appropriate post-test counselling is always available, and that referrals to appropriate services are in place wherever and however testing is performed?
What do we do to improve the quality of counselling, and increase the number of counselling staff available? How could expanded testing programmes provide the right amount of information to people during the testing process when human resources are so stretched?
People who test positive often suffer from debilitating depression, choose destructive coping mechanisms and are at a very real suicide risk — but mental health services in most resource limited settings have long been neglected. What efforts are underway to change this in your setting? Would these changes be adequate to support thousands, or even millions, of people who suddenly learn their status?
It is fine to call for legal protections for people with HIV, but in how many resource-limited settings do they actually exist? What are the barriers to introducing such legislation? How can we leverage work and funding in this field to try to ensure that the rights of people with HIV, and of vulnerable groups, are protected?
There should always be ongoing operational research evaluating testing programmes — beginning with existing VCT services and moving on to whatever other testing approaches are adopted or experimented with. These should look at overall health and well-being outcomes for the communities involved — not just at the number of people tested, incidents of abuse or how many people went onto treatment. Overall outcomes from VCT or routine testing programmes should be compared directly to each other — at present there is little to no comparative data to guide policy.
Finally, in some settings, such operational research or even quality improvement programmes look suspiciously like criticism of the government programme — and this can pose a problem in countries that view their programmes as a source of national pride. How do we encourage policy makers and programme managers to conduct regular, honest, and transparent appraisals of their programmes?
“We need to find the least bad way to achieve the objective,” said Green. “On the whole, I'm on the side of more aggressive testing. We have to find a better balance between protection of the right to testing with due process and access to treatment.”
Dr. Venter isn’t entirely sure whether most people really want these choices.
“One of the things I sometimes wonder about is whether or not it’s a westernised thing — this worry about consent. I do sometimes think the language used is met with bewilderment by patients,” he said. “At the recent PEPFAR consultation, Dr. Ernest Darkoh [who was involved in the Botswana government programme] used this amazing quote: ‘The traditional healers kick our ass and it’s because to them there’s no grey.’ It’s black and it’s white; it’s like: “you must do this. This is what you must do; you must follow these tablets, you must have these tests and you will get better.” None of this: ‘...ooh, are you ready, prevarication.’”
“The traditional healer takes control in a situation where people are feeling powerless and actually takes on the decision making for that person and I think patients actually want that. I think some don’t, but most do. I always think that when I’m sick, I just want you to give me the sodding tablets. Don’t sit and negotiate with me. Tell me what’s the best for me. Tell me if I’ve got other options and if I need to make that decision, then I’ll come to that decision myself. But by and large, give me a decision. Don’t sit there and try and negotiate with me when I’m feeling sick.”
“I think those sort of issues aren’t debated enough. Those around how much patient autonomy do they actually want, how much do you hand to them and how much of it actually scares the hell out of people and how much of it’s culturally based. That’s what scares me. I think that what works for me, may not work for the person in deep Hillbrow, may not work for rural Limpopo; may not work for Zimbabwe and I think that there’s not enough discussion of that.”
Green believes the empowerment to make such decisions — and to make more services available — may only come after more routine testing.
“In the end, perhaps we must come back to reality. The services we need are unlikely to be in place in the next 5-10 years. Indeed, what has driven much of the development of such services as now exist is the activism resulting from increasing numbers aware of their infection demanding services. Recall that if we had waited until everything was in place before starting 3 by 5, we'd still be just talking. More people aware of their infection, by whatever means, will drive demand – and provide the human resources to support some of it. It will help 'normalise' HIV more quickly, and thus encourage more HIV-positive people with professional capabilities (who are currently unwilling to be identified) to contribute to the response.”
“We should strive to improve, but the rights of people to be aware of their infection should be given greater weight than their right to 'due process' in testing.”