Can Community-Driven Treatment Programs Break Down Stigma And Fight HIV/AIDS?
by Kaylin Pennington
In dozens of sub-Saharan African nations, the need for HIV/AIDS treatment greatly exceeds available resources. The World Health Organization (WHO) estimated in a December 2004 report that 1.8 million Zimbabweans have HIV - the virus that causes AIDS - and less than 3% of the 300,000 people who need antiretroviral treatment have access to immediate care. With an estimated 6,000 people dying of HIV/AIDS in Africa each day, the most pressing question is how to best distribute a limited amount of antiretroviral medicine to the people who need it the most.
Dennis Israelski, MD, Clinical Professor of Medicine in Infectious Diseases and Geographic Medicine at the Stanford University School of Medicine and Medical Director of AIDS Empowerment and Treatment International (AIDSETI), has dedicated most of his career to addressing this problem. He has developed a solution known as Òcommunity-driven developmentÓ, an approach that gives control of planning decisions and investment resources to community groups and local governments. The community-driven development model demonstrates that a more sustainable system of HIV/AIDS prevention, care, and treatment can be created.
The Impact of HIV/AIDS
AIDSETI arose from the 2000 International AIDS Conference in Durban, South Africa, and has since become an international network of twenty-six community-based associations of People Living With HIV/AIDS (PLWHA). Through AIDSETI, Israelski and his colleagues have given nutritional support, psychological counseling, legal assistance, and financial aid by starting income-generating activities to severely impacted communities. Ultimately, this approach affects the distribution of limited antiretroviral medicine by giving priority to people in the community who actively promote HIV/AIDS prevention and treatment.
Dr. Seble Kassaye, a postdoctoral fellow in infectious diseases and member of IsraelskiÕs research team, believes this model is effective because it works with the political, social, and economic structures already in place now, and that it would be a mistake to Òwait until Africa becomes like the West.Ó The short-term solution of handing out medicine (the Òtop-downÓ approach, as Israelski has termed it) does not address the crucial social and psychological issues that underlie the HIV/AIDS epidemic. Although the stigma that accompanies the disease is not as prevalent as it once was, it remains a barrier that must be overcome. As an example, Kassaye explains that it is not uncommon for a daughter to be relegated to the maidsÕ quarters if her family discovers that she is HIV positive.
The Effectiveness of Community Empowerment
ÒOur community-driven model [has] not received a lot of publicity because itÕs flying against conventional wisdom,Ó says Israelski. By giving members of a community the responsibility to make their own decisions, international healthcare organizations must relinquish some of their control. It will take time to break down this inherently paternalistic relationship, since Israelski believes that the world system defaults into a top-down approach to health care.
Kassaye believes that a country in which the government welcomes the community-driven model will be more prosperous than a country that questions the model and continues to rely on distribution of antiretrovirals by various institutions. One of the best examples of this is in Burundi: despite more than ten years of civil unrest, there is nearly universal access to antiretroviral treatment due to the nationÕs transition to the community-driven method. ÒEmpowered communities can more effectively hold their governments accountable,Ó says Israelski.
Some opponents of the community-driven model say that strict regulation of HIV/AIDS drugs is imporant in helping to control the rapid mutation of the virus to drug-resistant forms. The biggest problem with dispensing HIV/AIDS drugs to communities is that the treatment regiment is not strictly controlled to ensure that no doses are skipped and there are enough drugs to consistently last an infected person a lifetime. Otherwise, the virus will mutate more quickly, creating a bigger problem for the HIV/AIDS challenge of drug-resistance.
However, Israelski believes that the community-driven model is not as haphazard as other models and organizations that simply try to get the drugs to Africa and then deal with how to distribute them and potential problems later. Many other models and organizations prioritize saving lives, but at what cost for the future? Israelski's model has a focus that intends to make sure the community understands why they are being given these drugs, what the drugs mean, and why they need to be responsible for making sure they are administered correctly. Israelski believes that communities will be empowered when they are given the resources to help themselves solve their own problems. ÒCommunity-driven development leads to an empowered community,Ó he explains. ÒThrough empowerment, vibrant communities are created that can overcome stigma and discrimination.Ó From his perspective, a few individuals who are committed to bringing a community out of silence can serve as a tipping point for the creation of sustainable HIV/AIDS health care.
Prevention, Care, and Treatment of HIV/AIDS
The central goal that continues to drive IsraelskiÕs research is determining the most cost-effective method of prevention, care, and treatment of HIV/AIDS and other diseases. Israelski was one of the founding members of the Worldwide AIDS Coalition, a nonprofit group that, while not synonymous with AIDSETI, hopes to function similarly as a mechanism to provide more service and resources to communities severely impacted by HIV/AIDS. Israelski calls it a Òpush-pullÓ mechanism: ÒWe will push [the necessary] resources to groups in the field that are most effective at health service delivery. In turn, these groups will pull the resources to where they can do the most good.Ó
The challenge, Israelski says, is getting funding for something so original. He points out an ironic paradox: ÒThere is an international agenda to combat HIV/AIDS and other communicable diseases in the developing world, but the profits that accrue from such activities have generally returned to the North and West. There is an economy being generated to find a solution to these great microbial killers of our time, but little economic benefit from these efforts has been observed in the most resource-constrained environment.Ó
At the forefront of his future research is an evaluation of the impact of coupling community-driven programs with corporate initiatives focused on social responsibility. Other groups and organizations advocate community-based work, but none of their strategies are as rigorously defined as the community-driven model. Israelski believes that a community-driven model fits into a niche that could not otherwise be filled.