August 4, 2000
AID for AIDS, a medicine recycling program based in New York City, collects antiretrovirals which otherwise would be thrown away in the U.S. and distributes them without charge to persons with HIV in Latin America. The program has been operating for four years, and recently presented results at the XIII International AIDS Conference in Durban, South Africa.(1) The organization has a Web site, http://www.aidforaids.org , and its board includes well-known AIDS writers Tim Horn, Michael Barr, and the late Stephen Gendin. On August 4 AIDS Treatment News interviewed founder Jesùs Agüais.
AIDS Treatment News: Tell us about your program.
Agüais: My name is Jesùs Agüais, and I'm one of the co-founders of the nonprofit organization based in New York City, called AID for AIDS. We collect drug donations from people with HIV in the U.S. who no longer need the drugs for a variety of reasons, and we send them to individuals in Latin America and the Caribbean who otherwise would have no access to these life-saving treatments.
We have developed a pretty reliable system to minimize the most obvious complications of such a program: to verify the HIV seropositivity of the people who are receiving these medications; to ensure that the drugs are not simply being re-sold on a local black market; and to do all in our power to see that our clients are taking the medications correctly.
We began this operation four years ago in 1996, helping five people, through the Emergency Medical Subcommittee of the Venezuelan Gay and Lesbian Association in New York. For the first year and a half, we were doing this work out of my apartment, and then out of donated office space from the Puerto Rican Association of Community Affairs (PRACA). For a long time we had only one paid staff member because that's all we could afford. We now have five staff members, but the workload is really tough on them -- and they are not well paid. We rely heavily on volunteers, pro bono work and in-kind contributions.
I work in a major AIDS hospital in New York, and had been sending donations from my patients to a woman in Venezuela. Today we have almost 250 people in 14 countries in Latin America and the Caribbean who receive antiretroviral and opportunistic infection medications on a monthly basis free of charge. Unfortunately, we also have a waiting list about twice that size.
ATN: Many people agree that this work is commendable, but also they doubt that medicine recycling by itself will ever meet 1% of the need. How can these projects help to move toward larger institutional programs, which could reach more people?
Agüais: That is one of the most frequent criticisms of our program, and one to which we have given a lot of thought. Providing medicine is really only a short-term, albeit immediate, goal of Aid for AIDS. We readily admit that it is little more than a Band-Aid solution to enormous systemic insufficiencies. The ripple effect of our involvement in these communities, though, is what gives us hope for more substantial, long-term improvements in these countries. By supporting the existing community and activist networks, which already exist in Latin America, we are leveraging the local activist power and realizing surprisingly rapid results.
We have HIV-positive activists in Chile, for example, who because we have basically kept them alive by providing them with medication for the past three years, were able to organize the first national HIV/PWA meeting in that country. They then successfully lobbied the government to provide antiretroviral therapy to 125 people. Now that's still a far cry from a national drug program which, for example, was recently instituted in Brazil, but it's very encouraging. And we are seeing similar developments in Peru, Bolivia, the Dominican Republic, and Venezuela, as well as in some Central American nations.
Sending medications is only one of AID for AIDS' programs. We also have an extensive treatment education program. In 1997 we organized, along with several local organizations, the first national AIDS conference in Venezuela where, for the first time, community people, people with HIV, physicians and government health ministers were brought together in the same room for a full day of discussions and presentations. Later that year, the activists in Caracas opened a satellite office of AID for AIDS just outside of the city. These people, in turn, are empowering people with HIV all over the country to make changes in their own communities. In Peru we recently established contacts with a terrifically organized group of activists there. They have chosen to call their new organization AID for AIDS Lima, and we now work very closely together. Within the next few weeks, we will also participate in the founding of an office in Santiago (Chile), and, later this year, in Santo Domingo (Dominican Republic).
So we have been effective at identifying the leaders in the local communities and supporting them -- with either technical assistance or life-saving medications or both -- and enabled them to continue and build upon their very important political work. But we have a long way to go.
ATN: What did you learn at the International AIDS Conference in Durban?
Agüais: I presented our internal analysis of the effectiveness of our drug-recycling program. I was astounded to learn that we are probably the largest such group working in this systematic way: doing case management, clinical follow-up, and treatment education.
In Durban I met with other people doing medicine recycling, for example, Lee Wildes from African AIDS Network, who like us is working very closely with recipients, sending AIDS medications to 90 people in Africa. I was also able to participate in two different panels and in a press conference where I offered to share our experience with anyone interested in creating a similar program in their city. I sat down with some people from Australia, for example, who were interested in starting a recycling program to send medications to the Philippines. The Durban meeting was almost entirely about access to medications, as you know. But I had no idea that this issue was going to receive so much attention there.
ATN: What about the stability of the program -- making sure that when somebody starts on medication, there is enough to continue?
Agüais: We have a medical review committee, which reviews all our clients' paperwork and stats at the end of each month. At that time we also do an evaluation of inventory, primarily to see if we are able to add any new clients from the waiting list. We want to have at least a three-month supply of medications for a person before we add them to the program. It's not very scientific, but in four years no one has been left without medicines. We have a fairly reliable network of people around the U.S. who regularly send us meds, and we are currently working to expand our community canvassing both within New York and to other cities in the northeastern United States and Canada. Ideally, we would like to take out small ads in some of the community press, but right now that is not within our financial reach.
ATN: What medications do you accept? If somebody has a half-month or month supply of something they don't need, how do they proceed?
Agüais: We accept any unexpired medications, even in opened bottles. We count all the pills, verify dosages and check for damage and possible tampering. We then send the antiretrovirals directly to our clients, to make sure they are getting them; and we request twice-yearly chemistries, CD4 counts and, where possible, viral loads, to make sure the clients are taking the medications correctly, that the doctor is fully informed about these medicines. We handle all the antiretrovirals: nucleosides, non-nucleosides, and protease inhibitors.
We also receive all kinds of opportunistic infection medications, nutritional supplements, and medical supplies, but we send these to institutions in Latin America. We send them to our offices in Venezuela, or to other institutions that work with us. We even send some of these drugs, supplements, and supplies to Africa.
ATN: If somebody has drugs or supplies to donate, what is the first step?
Agüais: We encourage people to mail them to our office in New York. Send them to AIDS for AIDS, 515 Greenwich St., Suite 506, New York, NY 10013.
Our phone number is 212-337-8043. If someone has a large shipment and does not have money for the shipping, we have an account with an express mail company so that the donation can be picked up anywhere in the U.S. and sent at our expense. Even ritonavir, which needs to be refrigerated, can be accommodated. But we have very little funding, so we encourage people to pay for the shipping if possible.
ATN: Is there anything else you would like to add?
Agüais: From day one, we knew that some of our activities would be controversial, but I think that after our Durban presentation we have shown in a fairly rigorous way that we are doing a good thing, that we are keeping people alive. And we are reaching out to people in Latin America and the Caribbean who are fighting for change in their own communities who will ultimately enable treatment to reach many more people. We have to keep supporting them -- and we need your support in order to support them.
1. Horn T, Barr M, Gendin S, Agüais J, Velencia J, Delgrado A, and Agüais T. AID for AIDS and the Feasibility of Drug Distribution Programs for People Living with HIV and AIDS in Developing Nations. XIII International AIDS Conference, Durban, South Africa, July 9-14, 2000 [poster # ThPeB5199]. This poster reports an average CD4 count increase of 206, and viral load drop of approximately 3 logs, in patients for whom full long-term data was available.
ISSN # 1052-4207
Copyright 2000 by John S. James. Permission granted for noncommercial reproduction, provided that our address and phone number are included if more than short quotations are used.
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