At the international conference on AIDS in Barcelona, a doctor working in rural Haiti reported that even in circumstances of extreme poverty, it is possible to deliver effective anti-HIV treatment. Failure to do so says more about those of us living in richer countries than it does about Haiti.
Dr Paul Farmer from Harvard Medical School is the director of an HIV prevention and care service which follows 2000 people with HIV, of whom around 200 were on directly observed combination therapy by spring this year. This is one of a very few programmes, anywhere in the world, that currently provides treatment to people living in extreme poverty.
Reports from Africa had mostly been of what Dr Farmer called “patient supported” treatment efforts, referring to the substantial costs inflicted on patients and their families in projects that provided only partial subsidies for the cost of treatment, and clearly could not reach the poorest people affected by HIV.
Dr Farmer observed that what had been achieved in Haiti had been no thanks to any of the international foundations or government donors, which had been and remain extremely reluctant to fund treatment. This would only change this year, if the Global Fund supports a Haitian funding request, but they could and should have been in a position to provide far more treatment to many more people, far earlier. In the meantime, they had relied on a range of funding and support which had included drugs “recycled” from people with HIV in other countries.
This meant that we simply didn’t know the answers to such questions as the extent to which providing treatment influences prevention efforts – though in Haiti, uptake of HIV antibody testing had increased five-fold when some treatment was made available.
Why would we want to introduce antiretrovirals to settings of great poverty?:
Firstly, because while current treatments are not really “highly effective” they certainly are effective and reduce suffering.
Secondly, there is an issue of social justice, of which people living in poverty are keenly aware.
Thirdly, because we can reinforce prevention efforts by paying attention to people with HIV and their families need.
Fourthly, because this is what people with HIV and AIDS and their families have been asking for, for many years.
Why doesn’t this happen?
We hear a lot about lack of infrastructure, but we need to ask more critically what sort of infrastructure is needed. If we continue to use this argument we’ll continue denying access to those who need it most. Even if we only wanted to do good prevention work, we’d still need an infrastructure to deliver it.
Dr Farmer referred critically to two recent papers from the Lancet from researchers in the USA and Europe about cost-effectiveness of treatment compared to prevention. Reasons for such researchers to be humble about the value of their work included the fact that costs are changing and are likely to change further, the fact that we don’t understand the impact of treatment on transmission, especially in a setting of extreme poverty, and a question about whether we are going to accept a situation where the gap between rich and poor continues to get wider. Also there had not been relevant operational research on how to deliver care and treatment, and such research cannot be done unless there are “operations.”
Do we really want the poor to bear the burden of proof, that services should be provided?
In 1986 the first case of AIDS had been diagnosed, in 1988 his service introduced antibody tests, but people weren’t interested when there was nothing to offer. When AZT was introduced into antenatal clinic uptake of antibody testing went up to 90%. No way round HIV treatment – can’t just deal with it by treating TB, although his service had done so for many years.
Dr Farmer said they had been slow to get antiretrovirals into use in rural Haiti, but they have done so. From 1998 they have applied the model of directly observed therapy, used in TB treatment, to the treatment of HIV with antiretrovirals, in order to prevent the development of resistance to drugs in a setting where there are neither CD4 counts nor viral load tests available to monitor therapy. (Although he said that when they do send bloods to Boston to get viral load tests done, they show very effective suppression.)
They have introduced directly observed therapy and said this is the way to move forwards in the poorest communities. They have used community health workers known as ‘accompagnateurs’ to carry out this role, many of whom are themselves people with HIV.
The programme has reduced hospitalisation and the only death so far was in a person who died a few days after starting, because they started too late.
“Care has to be available based on need. If we allow only market mechanisms to settle this affair we are going to have lots more MDR HIV.” Patients won’t stand by and die if we don’t treat them, even in the slums of Haiti, they’ll do what they can to get hold of treatment, however inadequate.
We can’t forecast demand; what we need to do is to forecast our own ability to stop ignoring demand.
We need a way to respond to what the Haitians say is “indecent poverty” which he noted implied the existence of something called “decent poverty” – the difference, perhaps, between living in a house with a concrete floor and a house with nothing but a dirt floor, or a tin roof and a thatched roof which lets the rain in. If corruption means hungry people raiding stores of milk provided for HIV positive women’s children, where is the problem? With the corruption of those local people or the failure of the wealthy parts of the world to address such poverty?
Dr Farmer closed with some questions about the Global Fund. What is the purpose of the GF? To remediate problems with access to proven remedies – not to do research. It is for others to do that research. The implication being that the criteria used for deciding where to set up research projects were not appropriate when deciding where to establish services to support people with HIV and AIDS.
Some people say we can’t use antiretrovirals on account of stigma. He showed the photos of a man with AIDS, called Samuel, who had asked that the conference be shown photos of himself before going on treatment and two months later; and that his name be used. Dr Farmer quoted Samuel as saying that his children were no longer ashamed to be seen with him in the street.
Farmer P. Introducing ARVs in resource-poor settings: Expected and unexpected challenges and consequences. Fourteenth International AIDS Conference, Barcelona, 7-12 July, abstract ThOr240, 2002.