As Time Goes By (Millions Die)
My personal take on this conference is clouded by a sense of disbelief that the Durban meeting actually happened two summers ago -- not one. In Durban the struggle was clear: global access to treatment was necessary and inevitable. But powerful opposition forces had to be pushed out of the way first: The big funders, who only saw cost effectiveness in supporting prevention; the big drug makers, who only saw a threat to patents and profit; and a host of big jerks who didn't believe Africans could learn to take pills or tell time. In Barcelona these forces were, if not absent, at least discredited and pushed underground. But it's taken two years to get over that obstruction, and of course now, a mountain lies ahead. The World Health Organization (WHO) has articulated a goal of extending treatment to three million people in the developing world over the next three years -- a period in which over nine million more will die. There may be no roadmap for the journey, yet the clear consensus at this conference was to put one foot after the other and march.
Durban was different in so many ways. In Durban we rallied with Winnie Mandela. In Durban we marched with the proud HIV-positive people of TAC! I knew Barcelona would not be like Durban; in fact I was counting on it. I had hoped for a boring conference, full of detail and best practices about how many small programs and communities were starting to offer treatment and hope. The level of intention was very high but examples were few and mostly familiar. In Haiti, Partners in Health continues to prove communities and families can play a crucial role in making ART work, even where CD4 counts are scarce. Brazil's successful program to treat its people with HIV is the grand exception and still accounts for half the number of patients receiving treatment outside of the rich northern countries.
At their satellite session, Medecins Sans Frontieres (MSF), which has been so important in rallying opinion around the world to demand affordable access to essential medicines, presented a farmer from Malawi named Fred, who powerfully made the case that treatment dispels stigma -- that what people really fear is their own death -- not the disease. When neighbors see people virtually "return from the dead" they see hope and are more willing to provide care, understanding and even get tested. However, MSF's report on their treatment programs gave less insight than I'd hoped about how they've managed to place 750 people on ART in nine sites around the world. More instructive were presentations by private sector entities who have undertaken offering ART to their employees. In particular, the Danish brewer Heineken reported fully about its experience in researching options, arriving at the decision to treat, formulating policies and deploying a program. In East Africa last year, the company estimates their program averted the deaths of 10 employees.
So it's been slow going and not likely to change overnight. I'm torn between anger at the glacial pace of process and admiration for the patient persistence of those who press ahead. As small, successful efforts by community-based organizations (CBO) and non-governmental organizations (NGO) scale up, I'm becoming nervous that the produce of bureaucracy -- of needs assessments, deliverables, accountability and programmatic goals -- may come to stand for action and progress. Funders have a responsibility to see that the money they provide is well spent, but as we heard in a satellite session sponsored by the NGO/CBO support program, International HIV/AIDS Alliance, those expectations come with costs attached.
Milly Katana of Uganda, a board member of the Global Fund for AIDS, Tuberculosis and Malaria (GFATM), said that NGO support mechanisms need to change their orientation. "Currently, support systems are designed for North-South relationships. NGO support systems need to build South-South mechanisms. Northern-based agencies have almost UN program status -- which is costly." When funders ask about auditing and organizational structure it can hurt the local enthusiasm for acting, which is the core capital of most groups. These structures may reassure funders but the expectation of accounting systems can also slow down responses. If a group deserves money because they have a creative way of working with young homeless people, how much time and money should they spend preparing reports?
An audience member proposed that grants should come attached with the overhead and technical assistance that will be needed to satisfy accountability. "Don't make reporting demands lightly without providing funding or you risk turning service organizations into reporting organizations."
Tim Lee, who works in Zimbabwe asked, "Can donors be more flexible? Could they accept programs and results in lieu of reports? Maybe some groups should stay as informal groups -- not everyone needs to become an NGO. The important thing is that CBOs are able to do what they do what they do best."
Katana asked: "Why is this such an issue? How do uneducated people in the community manage money for their families and businesses? They do it!"
All this stands in stark contrast to Tommy Thompson's thoughtless assessment that, "The worst thing would be to put money into programs that fail." But in the Ukraine, with incidence rates up 1,300%, the worst thing is already well underway.
One audience member commented that it might be time for funders to ask something different of their beneficiaries. Not "Where did every penny go last month?" but "How many risks did you take last month? CBOs should be encouraged to try things and fail. Maybe the expectations of funders will have to change."
In his plenary talk opening the Barcelona conference, Peter Piot of UNAIDS marked this meeting as a staging ground where the world embarked upon action: "We didn't come here to renegotiate commitments. The next World AIDS Conference in Bangkok will be the time for accountability. Now is a time for a movement to turn up the heat."
This article was provided by Gay Men's Health Crisis. It is a part of the publication GMHC Treatment Issues. Visit GMHC's website to find out more about their activities, publications and services.