Greenwich Village group collects unused AIDS medications for the developing world
They all eventually end up in the same storage facility on Greenwich Street, 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 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 re-labels 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 confounding 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 HIV/AIDS treatment. More than 300 people are on a waiting list.
The non-profit organization, founded by Jesús Aguais, an immigrant from Venezuela, collects the drugs from a wide network of friends, acquaintances and contacts in the medical field, patients who have switched drug regimes and relatives of patients who have passed away. The group 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,” Aguais said, adding that these activists are the ones pressuring their respective governments to provide better treatment for HIV-positive people.
Because the federal Food and Drug Administration (FDA) 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. The group has four satellite offices in Latin America and the Caribbean, though it also provides clients in Africa and Asia with free treatment as well.
One of the group’s mandates is that it keep at least three months’ worth of medications per client in storage at its headquarters at Greenwich and Spring Streets. The inventory requirement is taken very seriously and when the supply of a particular drug starts running low, a call for meds is sent out to a network of more than 5,000 doctors who have donated medicines in the past five years and approximately 600 regular donors.
“Right now,” explained Dr. Jaime Valencia, the organization’s staff doctor “we’re running low on Videx EC, 400 milligrams, but on the other hand, we have a lot of Crixivan.”
When the 38-year-old Aguais related the story of the organization’s founding, his warm brown eyes clearly reflected his memories of a Venezuelan woman who, in September 1996, sold everything she owned in her homeland—including the family’s cemetery plot—in order to fly to New York to see Aguais. Her son and daughter-in-law were both struggling with AIDS and she had heard stories about a fellow Venezuelan who worked at St. Vincent’s Hospital in Manhattan and collected AIDS medications on the side. The stories about Aguais proved to be true and, spurred by the woman’s story, he soon formed Aid for AIDS out of his one-bedroom East Village apartment.
Aguais, who still works as an AIDS counselor at St. Vincent’s, remembers the days when he lived with 10 puppies in that apartment and fondly pointed to a photo of a Dalmatian tacked up on his bulletin board.
“Ajax here was born in ‘97 in the house where we were seeing clients,” he reminisced, “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 organization’s early days, including the scope and perception of the global AIDS epidemic. Today, most of the media attention garnered by AIDS is focused on the surging epidemic in developing nations, particularly in Africa, South and Southeast Asia and China.
According to figures from U.N. AIDS, as of November 2004, sub-Saharan Africa bore the brunt of the 39.4 million people living with HIV/AIDS, accounting for roughly two-thirds of those infected, although the region itself is home to only about ten percent of the world’s population.
The staggering emergence of HIV in the developing world raises enormous challenges, both in terms of treatment and policy. Aid for AIDS, a tiny organization—there are only six employees; everybody else volunteers their time—manages to address both immediate treatment gaps and the broader policy issues focusing its efforts 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,” Aguais, who was diagnosed with HIV in 1998, said emphatically. “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 in college, was diagnosed with HIV in 1996.
“I never thought, ‘Oh, I’m going to die,’” said Maldonado, 29. “I wasn’t 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” “HIV” and “treatment” and came across the Aid for AIDS Web site. Once he got in touch with the doctor on staff—then Dr. Diana Ramirez—she recommended that he get a visa to come to New York for immediate treatment because he already had Kaposi’s Sarcoma. Maldonado still considers it a miracle that he was granted the visa.
“If the consulate knew that I had AIDS…” he said, his voice trailing off as he shook his 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. Vincent’s 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 focuses its enrollment efforts on clients with a CD4 count of less than 250 and a viral load of at least 100,000. Maldonado’s CD4 count clocked in at 4 while his viral load topped 3 million.
He found a place to stay with a friend in Astoria 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 HIV-positive immigrants in New York City.
“The first reaction if you find out you’re HIV-positive in Peru,” explained Maldonado, his wide face expressing a range of emotions, “is automatically that you’re going to die.”
He paused and lowered his voice.
“But honestly, if you ask me if I’m proud to be HIV-positive, I am,” he said. “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 the Internet. Instead of virtual, Web-hosted conferences, Dr. Valencia uses what he views as the more practical tool—the telephone—to regularly touch base with doctors and their patients about specific drug regimes and general HIV treatment education. He often reminds doctors by phone to send him their patients’ CD4 and viral load counts every six months.
“We need to be careful with the patients we enroll,” Valencia said. “If we can’t communicate with the patient, then we can’t enroll them because we can’t follow up.”
For example, there are no Haitian clients, despite the group’s satellite office in the neighboring Dominican Republic and despite the fact that Haiti has the highest HIV prevalence rate in the Caribbean. Because there are not enough diagnostic facilities in Haiti to do the tests, follow-up is virtually impossible.
Even where it is possible to get tests done, they are often expensive; and the situation for many people living with HIV in the developing world is more dire than it was in the early days of AIDS in the U.S., when people routinely had to juggle to pay for food, housing and treatment, which at that time had only limited efficacy.
Hector Acevedo, a 39-year-old Aid for AIDS client, lives in the Dominican Republic. Valencia periodically must phone Acevedo’s aunt in the United States to ask her to send money to her nephew back in the Dominican Republic so that he can get the tests done. Acevedo’s aunt sends him a monthly stipend of 4,500 pesos (about $161) but the necessary tests cost 10,000 pesos.
“She’s doing her best to get the money to me—I can’t ask her to send more money,” Acevedo explained.
In his third year of treatment with Aid for AIDS, Acevedo used to live in New York until his green card was stolen. He said that when he tried to re-apply for a green card, he was deported to the Dominican Republic. The urgency in Acevedo’s voice, speaking from San Pedro, was clear though the phone connection failed a number of times.
“Even if it’s illegal, I’m going to try and come back to New York,” he said. “The problem is that for any job here they take your blood and do an HIV test right away, so I can’t work.”
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 (ADAP), which provides medications to people with HIV/AIDS who cannot get them through private insurance or Medicaid. ADAP eligibility is independent of immigrant status. Each year, about 135,000 people receive services from ADAP, according to the National ADAP Monitoring Project.
In light of the difficulties many Aid for AIDS clients have simply covering the cost of testing and the delivery of medications, the group recently launched a new fundraising effort called Campaign For Life, where donors cover those costs for patients who cannot afford to pay for them. So far, the year-old campaign has enrolled about 15 individuals who have committed to paying for testing in the Dominican Republic and Peru, where some clients 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 more than $15 million worth of medications abroad in its eight years of existence, despite a less-than enthusiastic view of the effort from the FDA.
“I can tell you that the Food Drug and Cosmetic Act allows the export of drugs under only certain conditions,” said Richard Klein, HIV/AIDS program director at the FDA, questioning the quality and purity of the recycled medications.
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, acknowledged Aguais, Aid for AIDS is not the answer to solving the AIDS crisis.
“It’s more complex than just sending medications,” he said. “We need infrastructure for medical care—in Latin America. People don’t 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 there’s not only one way to do it,” Aguais explained. “The most important thing is that you believe in what you’re doing.”