I am a fast reader. It is rare for me to have trouble finishing a library book before it is due. Last night I stayed up reading Helen Epstein’s illuminating and troubling book, The Invisible Cure: Africa, the West, and the Fight Against AIDS. It was worth the afternoon drowsiness today.
This book required the entire two week loan period to do it justice, not only because Epstein laid bare the fragility of humankind in ways that were hard to digest, but also because I began reading with the mistaken belief that I already understood her subject matter. It is time consuming to give up preconceived notions.
In late 1999, I was the mother of a two year old and was in the throes of a long process of growing into the person I hoped my children would look up to (I am not there yet, so many years later, I am afraid). In this period of discovery and questioning, I joined the peace and justice committee at the church my family attended. Not long after, I joined others in my community to help a Kosovar refugee family move into an apartment, learn English, find jobs and schools, and start over.
Becoming involved personally, getting to know someone from another culture, and seeing firsthand what a family of limited means faced as they tried to provide for their children opened my eyes and my mind. I began to learn about social justice and human rights issues.
As the new millennium approached, the peace and justice committee presented an issue I’d never considered before: international debt. I discovered the Jubilee movement, and began to write letters asking US and world leaders to forgive the debts of the most impoverished nations of the world, so that they, like the refugee family I got to know, could provide for themselves.
When I learned about debt, and as my family became interested in the work of nonprofits working in partnership with the poor (such as Habitat for Humanity International, and Heifer Project), I started learning about the developing world. And at the turn of the century, one of the developing world’s greatest challenges, and among the topics most frequently in the news here in the West, was AIDS.
While I was learning and growing with my young family, Helen Epstein was on the front lines of the fight against AIDS. She worked as a research biologist in Uganda, and later returned to Africa many times to observe and report on the AIDS epidemic, and to answer her own questions about how and why the epidemic occurred, why AIDS impacts countries differently, and in what ways the response on the part of both African and Western governments and aid organizations has sometimes succeeded and sometimes failed. In many cases she was asking things other people weren’t, discovering things for herself, searching for her own answers. I recognize this curiosity — Epstein is a fellow life learner.
The Invisible Cure is a challenging read, in large part because Epstein is such an unbiased observer, which forced me to examine my own views as I read. As I became more involved in AIDS advocacy during the past few years, I thought I had read fairly widely about the AIDS crisis. I attended the Global AIDS Alliance’s action conference in 2003, which featured many inspiring and informative speakers, including Millie Katana, a prominent advocate for Uganda’s AIDS victims and a member of the board of the Global Fund to Fight AIDS, TB, and Malaria, and Stephen Lewis, then the UN Special Envoy for HIV/AIDS in Africa.
Conference attendees participated in a lobby day on Capitol Hill regarding AIDS relief. Unable to stop thinking about what I’d learned, and with images of mothers like me trying to deal with the epidemic keeping me up at night, I started Southwest Georgians United Against AIDS (now defunct, and honestly, never terribly effective) in order to work on AIDS advocacy. The president of a local AIDS nonprofit in Georgia, which assists people living with HIV/AIDS in ten counties, asked me to join the board, and to spearhead that group’s effort to help a small group of AIDS orphans in a rural area of Uganda.
So I think of myself as a person who is fairly informed about global AIDS, and I opened Epstein’s book feeling like I knew what to expect. Within the first fifty pages I was amazed. Not only by the information Epstein provides on the possible origins of AIDS, the spread of the epidemic, the impact on various countries and within certain populations, and the response. But also by the fact that despite reading a wide variety of mainstream media and specialist literature, I was still misinformed on many aspects of the AIDS epidemic.
For example, I knew that abstinence has been the cornerstone of the Ugandan prevention program during the past several years. I did not realize that Uganda experienced a huge drop in HIV infections under a campaign called “zero grazing,” which did not push abstinence, but rather faithfulness, and that some of the scientific data from Uganda on the success of “zero grazing” has been suppressed or ignored by both pro-condom and pro-abstinence groups, including some of the most prominent world bodies, while ordinary Ugandans have suffered.
Despite the fact that I am a voracious reader, and my daily news intake usually includes two or more NPR programs, a daily newspaper, at least the lead stories from the NY Times online, and both weekly and monthly news magazines of various viewpoints, I had no idea the Global Fund has withdrawn grant money in some countries due to corruption charges and that it’s own leader stepped down amid mismanagement allegations — this is the fund that is touted as the transparent, grassroots, multilateral, effective way to fight AIDS. While I’m glad the anti-corruption mechanisms are working, I am distressed to think of how much money and time have been wasted while people die.
I also did not realize the extent to which the Western response to AIDS is frequently self-benefiting. For example, American aid programs spend large sums of donor money (in the case of USAID and PEPFAR, the government’s programs, that means taxpayers’ money) in America before anyone ever sets foot in Africa. Obviously, there are overhead costs to any program, but Epstein’s examples are stark, clear, and painful.
The Invisible Cure also reinforced my belief in the importance of local community decision making and ownership in any development work. My family prefers to support nonprofits who work with their constituents to find out what they need, rather than dictating one size fits all solutions to them. If some of the most influential forces in global public health could overlook their own interests and understand Uganda’s earlier AIDS prevention and home care successes, how many lives could be saved?
The most refreshing aspect of this important book is Epstein’s fairness. She exposes the problems with liberal, conservative, religious, secular, private and public aid. No one is spared her careful, considerate examination. Neither does she appear to target any one group or point of view for criticism — refreshing, when many activists’ writings simply blast anything to do with whomever they view as the opposition, without really going into the nuances of the points they make. If you’re tired of all the shouting in the public arena and want to read a measured, thoughtful book, this is it.
The one type of program Epstein praises repeatedly in The Invisible Cure are the small, very grassroots, often barely recognized community organizations which work to prevent AIDS and care for its victims. Her book has inspired me to seek out these local organizations somehow, and to channel more of my family’s giving budget towards this type of direct work.
One such nonprofit, a partnership between an African woman who knows her community and its needs and an American who wants to help her fund orphan care, is Zienzele Foundation. Although my motivation for buying a basket from this organization at an alternative giving fair a few weeks ago was partially to assuage my own feelings of guilt — I live in comfort, while across the world, by an accident of birth, people suffer needlessly — I am confident that my purchase truly funds an actual grassroots program, and that there are real people both helping and being helped.
As fragile humans, that is ultimately all we can do in the face of the AIDS crisis or any other overwhelming problem — help each other, as best we can. Thanks to Ms. Epstein’s excellent book, more help is possible for Africa’s HIV/AIDS victims and their families and communities.