AIDS activist Ida Nambeya Mukuka, right, talks to two young women in Zambia about HIV awareness and prevention. This is part of the critical work of community-based organizations working on AIDS in Africa. (ALEXIS MACDONALD / STEPHEN LEWIS FOUNDATION)
We all know if a member of our family had a life-threatening illness, it would be a tremendous relief to know that drugs to prolong their lives were available through our health care system.
But we would also be very aware that our own work had just begun: endless trips to the doctor, coping with the side-effects, and urgently moving to find emotional and psychological support to protect our loved one from despair. We would be managing the family’s emotional crisis; dealing with the economic consequences of lost income if it’s an adult, and the visceral need to hang on to hope for the future if it’s a child.
The international community has finally mobilized around the delivery of drugs for HIV to Africa. Currently under half of those who need the medication have access, the commitment at least has been made to ensure 90 per cent will be reached.
The heartbreaking reality is that this single-minded focus on delivering drugs has come at the expense of support for the human dimensions of the AIDS crisis. Community-based organizations — which are working directly on the front lines with millions of HIV positive people — are voicing their alarm: Drugs are desperately needed, but drugs are not enough.
So the drugs arrive at a community clinic, now what? How do families infected and affected by HIV and AIDS reclaim their health and lives? Community-based organizations are providing the answer. Legions of home-based care workers are testing and counselling their neighbours. Nutrition counsellors and food supplements ensure people’s bodies accept the drugs.
And then there’s the all-important ongoing work to break though stigma and shame. You can imagine the grief and fear of disclosing an HIV diagnosis to your family.
A home-based care worker, often an HIV-positive woman, helps you through it. And when your adolescent child balks at taking the drugs forever, a peer support group will save their lives. When you’re afraid to get your granddaughter tested because you can’t bear the spectre of more suffering, a community counsellor will hold your hand and get you through it, and teach you how to administer the drugs. When your family has been economically decimated by AIDS, an income generation project can get you back on your feet and get the children (particularly girls) back into school.
The availability of drugs means HIV is no longer a certain death sentence. But it’s the work of community-based organization that is resurrecting life.
The fact that CBOs are doing all this work on their own, with woefully inadequate funding, has become a huge dilemma for the international HIV and AIDS response. The Global Fund to Fight AIDS, Tuberculosis and Malaria received its $13 billion, but only a fraction of this will go to community-level work. The Lancet Commission and the UN political declaration on HIV have called for a massive infusion of funds for grassroots work. Still the money is nowhere in sight.
It’s time to get real. We join the families across Africa sighing with relief at the long-awaited arrival of HIV medication, but everybody knows drugs are not enough. Everybody knows that the work being done by community-based organizations must be funded. Why are we waiting?
Ilana Landsberg-Lewis is co-founder and executive director of the Stephen Lewis Foundation.
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