Julio Maldonado, 29, first heard of Aid for AIDS when he was living in Peru and he needed medication. Now he works in New York at the center.
BY Mai Bui-Duy
They all eventually end up in the same storage facility on Greenwich St., no matter what part of the country they originally came from. Boxes upon boxes of varying sizes are neatly stacked in the part of the Hudson Square office affectionately termed the pharmacy. Each box holds precious pill bottles that are meticulously wrapped in old newspapers. A volunteer at the eight-year old organization, Aid for AIDS, diligently empties out a bottle of Zerit, counting the skinny brown pills with a pill sorting tray and clean plastic knife. He checks the pills and carefully relabels the bottle with the name, dosage and expiration date of its contents before the final leg of its journey abroad. The white bottles line the shelves of the cool, utilitarian storage facility with a dizzying array of names: Sustiva, Zerit, Viracept, Kaletra, Invirase.
The numerous bottles are part of Aid for AIDS international treatment access program, which recycles donated anti-retroviral medications, providing approximately 600 clients in 35 countries with free H.I.V./AIDS treatment (with over 300 people on a waiting list). The nonprofit, founded by Venezuelan native Jesús Aguais, collects the drugs from friends in the medical field, patients who have switched drug regimes and relatives of patients who have passed away. It relies almost entirely on word-of-mouth to get the medications it sends abroad to its clients, with an emphasis on treating activists and community workers.
Whoever does preventative work is a priority for us, says Aguais, adding that these activists are the ones pressuring their respective governments to provide better treatment for H.I.V. positive people. Because Food and Drug Administration rules ban recycling drugs within the United States, Aid for AIDS can only collect medications in order to send them abroad as international humanitarian aid. Aid for AIDS has four satellite offices in Latin America and the Caribbean, though it also provides clients in Africa and Asia with free treatment.
One of the charitys mandates is that it keeps at least three months worth of medications per client in storage at its headquarters at Greenwich and Spring Sts.; inventory is taken very seriously and when numbers of certain drugs start running low, a call for meds is sent out to a network of over 5,000 doctors who have donated medicines in the past five years and approximately 600 regular donors. Right now, were running low on Videx EC (400 mg), but on the other hand, we have a lot of Crixivan, explains Dr. Jaime Valencia, the organizations staff doctor.
The story of how the organization started is familiar territory for 38-year-old Aguais but as he tells it yet again, his warm brown eyes clearly recall the memory of a countrywoman who, in September 1996, sold everything she owned at home in Venezuela including the familys cemetery plot in order to fly to New York to see Aguais. Her son and daughter-in-law were both dying of AIDS and she had heard stories about a fellow Venezuelan who worked at St. Vincents Hospital and collected AIDS medications on the side. The stories about Aguais proved to be true and, spurred by the womans story, Aguais soon formed Aid for AIDS out of his one-bedroom East Village apartment.
Aguais, who still works as an AIDS counselor at St. Vincents, remembers the days when he lived with 10 puppies in that apartment and points to a photo of a Dalmatian fondly tacked up on his bulletin board. Ajax here was born in 97 in the house where we were seeing clients, he reminisces, and in one room there would be people crying so we would send them to the bedroom to play with the puppies, which was kind of like therapy.
Much has changed since the charitys early days, including the overall AIDS crisis. Today, most of the media attention garnered by AIDS comes through an international lens. In 2003, sub-Saharan Africa bore the brunt of the 39.4 million people living with H.I.V./AIDS, claiming 66 percent of those infected, although the region itself is home to only about 10 percent of the worlds population.
Dr. Jaime Valencia talks with doctors and patients all over the world about medical doses.
As the epidemic takes on a more global focus, a split has begun to form within the AIDS activist community. On the one hand, there are international policy activists, such as Health Global Access Project, fighting for worldwide access to affordable medications; on the other hand, there are domestic advocates like Housing Works, one of the larger AIDS service organizations in New York City, who continue to fight to keep AIDS in the news at home. Both camps of AIDS activists are struggling for precious American attention, time and dollars to be channeled into their respective programs. Its a matter of energy, says Terri Smith-Caronia, director of NYC Public Policy at Housing Works. Domestic people are pissed off at global people because it seems easier to shed a tear for somebody far away when we spend 8, 10, 15 hours a day trying to find housing for somebody living with H.I.V.
Aid for AIDS has only six employees and additional volunteers, yet this tiny organization manages to bridge the gulf between the service and policy camps by focusing treatment on activists and community leaders abroad, who in turn are able to continue fighting for cheaper drugs and better care. We keep those policy activists alive, says Aguais emphatically, himself diagnosed in 1988 with H.I.V. We still have to keep people alive today.
One of those people Aid for AIDS kept alive was staff member Julio Maldonado, who was initially an Aid for AIDS client living in Lima, Peru. Maldonado, then studying tourism at university, was diagnosed with H.I.V. in 1996. I never thought, Oh, Im going to die, says Maldonado, 29. I wasnt sure what was going to happen, but I never thought I was going to just die.
What did happen was that he searched the Internet for the terms access H.I.V. and treatment and what he came across was the Aid for AIDS Web site. Once he got in touch with the doctor on staff then Dr. Diana Ramirez, now Dr. Valencia she recommended that he get a visa to come to New York for immediate treatment because he already had Kaposis sarcoma and skin cancer. Maldonado still considers it a miracle that he was granted the visa. If the consulate knew that I had AIDS... he trails off, shaking his dark head.
Maldonado flew into New York on the evening of December 21, 1998, sick and alone on his first trip away from home. Dr. Ramirez immediately referred him to St. Vincents Hospital where he got the two most common tests to monitor the progress of his disease: a CD4 count, measuring the strength of the immune system, and a viral load test, measuring how quickly the virus was reproducing. Normal CD4 counts range from 500 to 1,500 per cubic millimeter of blood, and a low viral load varies from 200 to 500. Aid for AIDS tries to enroll clients with a CD4 count of less than 250 and a viral load of at least 100,000. Maldonados CD4 count clocked in at 4 while his viral load topped 3 million.
He found a place to stay with a friend in Astoria, Queens and started working at Aid for AIDS. After helping to open up the Lima satellite office, Maldonado volunteered in the pharmacy, checking pills, and eventually worked his way to running the New York Immigrant AIDS Link program. The program provides support services though not treatment for H.I.V. positive immigrants in New York City. The first reaction if you find out youre H.I.V. positive in Peru, explains Maldonado, his wide face expressing a range of emotions, is automatically that youre going to die. He pauses and lowers his voice. But honestly, if you ask me if Im proud to be H.I.V. positive, I am, he says. I am not ashamed because I have medications and I am doing something for the community.
With all the international work that Aid for AIDS does, it is surprising that most of its communication takes place via phone, rather than via Internet. Instead of virtual, Web-hosted conferences, Dr. Valencia uses the more practical telephone to regularly touch base with doctors and their patients about specific drug regimes and general H.I.V. treatment education. What he often reminds doctors by phone though, is to send him their patients CD4 and viral load counts every six months.
We need to be careful with the patients we enroll, Valencia says. If we cant communicate with the patient, then we cant enroll them because we cant follow up. For example, there are no Haitian Aid for AIDS clients, despite the nonprofits satellite office right next door in the Dominican Republic and despite the fact that Haiti boasts the highest prevalence rate in the Caribbean. Because there are not enough machines in Haiti to do the tests though, follow-up is virtually impossible.
And even when it is possible to get tests done, they are often expensive; the situation is reminiscent of AIDS early days in the United States when people had to juggle paying for food, housing and treatment.
Hector Acevedo, a 39-year-old Aid for AIDS client, lives in the Dominican Republic, but when he needs his test results, it is Valencia in New York who must phone Acevedos aunt in the United States to ask her to send money to Acevedo back in the Dominican Republic so that he can get the tests done. Acevedos aunt sends him a monthly stipend of 4,500 pesos (about $161) but the necessary tests cost 10,000 pesos. Shes doing her best to get the money to me I cant ask her to send more money, Acevedo adds. Acevedo, in his third year of treatment with Aid for AIDS, used to live in New York until his green card was stolen; when he tried to reapply for another green card, he was deported to the Dominican Republic. The urgency in Acevedos voice, speaking from San Pedro, is clear though the phone connection gets dropped a number of times. Even if its illegal, Im going to try and come back to New York, he says. The problem is that for any job here they take your blood and do an H.I.V. test right away, so I cant work, referring to discrimination against people with H.I.V.
If Acevedo does manage to come back to New York, his drugs would no longer come from Aid for AIDS, which donates solely on an international level, but rather from the federally-funded AIDS Drugs Assistance Program, which provides medications to people with H.I.V./AIDS who cannot get them elsewhere, independent of immigrant status. Each year, about 135,000 people receive services from ADAP.
In light of Acevedos current situation, however, the charity recently launched a new fundraising effort called Campaign For Life, where donors cover the cost of CD4/viral load testing and mailing of medications for individual Aid for AIDS patients who cannot afford to pay for these services. So far, the one year-old campaign has enrolled about 15 or 16 individuals who will be paying for test results in the Dominican Republic and Peru where some patients are behind in sending in their test results.
While the Campaign For Life is still in its infancy, Aid for AIDS can claim success by the fact that on an annual operating budget of less than $300,000, it has managed to send over $15 million worth of medications abroad in its eight years of existence, although the F.D.A. casts doubt on the legality of recycling drugs. I can tell you that the Food Drug and Cosmetic Act allows the export of drugs under only certain conditions, said Richard Klein, H.I.V./AIDS program director at the FDA, questioning the quality and purity of the recycled medications.
However, Aid for AIDS does not accept liquid medicine and each pill is checked for integrity by staff, occasionally aided by Bristol Myers Squibb representatives who donate their time. Even so, Aguais says, Aid for AIDS is not the answer to solving the AIDS crisis.
Its more complex than just sending medications, he says. We need infrastructure for medical care in Latin America. People dont have the money to go and even see a doctor who might work in the next town over.
Still, Aid for AIDS is doing its part to fight the epidemic the best way it knows how. Activism is about making a change and you decide how you want to make a change, but theres not only one way to do it, Aguais says. The most important thing is that you believe in what youre doing.