HIV-Positive Wellness Can Be a Cooperative Push
Saved under Health, National, NY State, NYC
Tags: AIDS, anti-retrovirals, Blue Diamond Society, Carola Burroughs, Direct Access Alternative Information Resources, Foundation for Integrative AIDS Research, Fred Bingham, George Carter, HIV, Jared Becker, Mark Hannay, New York Buyers' Club, Sean-Michael Fleming, supplements
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BY JOSEPH EHRMAN-DUPRE | It was a very adventurous time,” explained Jared Becker, co-founder of the New York Buyers’ Club.
There was only a moment’s pause before George Carter, another co-founder added, “It was a desperate time.”
The challenging period in question was the rise of the HIV/AIDS epidemic from the mid-1980s into the early ‘90s. During those years of crisis, a series of drugs became available — after many demands and protests from groups like ACT UP — including AZT, what Carter described as “a nasty, shitty drug that might’ve brought you back from the brink” but ultimately did a great deal to damage HIV-infected bodies.
“HIV meds stop the collapse of the immune system,” said Becker, “but there are lots of inflammatory problems still there.”
The New York Buyers’ Club plays unique role in supplementing anti-retroviral treatment
The pitfalls and dangers of the earliest HIV treatments inspired the creation of Direct Access Alternative Information Resources, a pioneering predecessor to the buyers’ clubs that later sprang up around the country. Founded in the ‘90s by Fred Bingham, who survived on vitamin and other nutritional supplements for years before turning to anti-retroviral treatment, DAAIR was one of the first organizations to bring protease inhibitors, already approved in other countries, into the US almost two decades ago.
After DAAIR was disbanded, Becker and Carter transitioned into a new venture, the New York Buyers’ Club (NYBC). Founded in 2004 with the support of Carola Burroughs, Mark Hannay, and Sean-Michael Fleming and gaining official nonprofit status in 2006, this collaborative effort has two missions — education and sales.
“Basically what we are trying to do is to understand how to use dietary supplements in the management of HIV disease and anti-retroviral side effects,” Carter said.
Although the organization recognizes and flags the negative effects of certain HIV medications, it encourages its members to take supplements and anti-retroviral drugs in tandem, helping to both reduce viral load and improve overall health. It is a unique method of care that many have scoffed at over the years.
“Younger people” in particular “don’t have an awareness of supplements,” Carter noted. But the benefits of taking charge of one’s own health care and formulating an individualized supplement plan, NYBC asserts, should make them — and everyone else — take notice.
“Our goal is to help teach people how to use [supplements], teach them what benefit they might have, if there’s any side effects or drug interactions that they might have, what to be alert for, and how to measure whether what they’re using is working for them,” said Carter.
The organization’s work is based on the recognition that each person is different and as such requires different treatment.
Supplements are an inexact science, however, and the co-founders do not shy away from admitting as much. A good portion of what is known about supplements and other alternative medical treatments comes from meta-analysis of prior studies.
“We just completed one on cannabis and neuropathy,” Carter mentioned with a chuckle, referring to a study that another organization he started in 2001, the Foundation for Integrative AIDS Research (FIAR), completed in a partnership with Mount Sinai Hospital. “We’d love to be the first medical marijuana buyers’ club in New York if it becomes legal.”
While meta-analysis does not necessarily yield 100 percent accurate results, the procedures utilized by the Buyers’ Club hew as closely to the scientific method as possible, Carter and Becker said.
The membership-based cooperative encourages people from around the country, and even organizations from abroad, to buy health supplements at the reduced prices NYCB can offer.
“One of the things that we do to try to control cost for people is we developed an off-the-shelf close equivalent to K-PAX,” among other scientifically-researched, FDA-approved supplement packs. Coverage of supplements and certain HIV medications by state Medicaid and AIDS Drug Assistance Programs (ADAP) is minimal, so NYBC works hard to make cheaper options available to its membership.
The problem, as described by Carter, is that many poor people do not attend to — or even learn of — their HIV infection until symptoms of illness appear, at which point very little help can be provided by supplements.
“We help people who have little or no income figure out how to get access to things,” Carter said, whether through Medicaid, ADAP, or discounted products found on NYBC’s shelves.
And those shelves are stocked. The Buyers’ Club offers more than 200 different supplements to its membership, who pay anywhere from “$5 for people on disability to $100 for a lifetime membership.” After joining, members can purchase the supplements at a sliding-scale cost.
“Our business model isn’t really about how many pills we can sell,” noted Carter, again chuckling, apparently at his organization’s ability to survive. “We don’t really give a shit about that.”
Though NYBC’s efforts seem focused largely on the New York metropolitan area, with a third of its clientele within a couple of hours’ driving distance of Manhattan, the group has visibility internationally.
Working with the Blue Diamond Society, a Nepalese LGBT-focused organization, NYBC periodically ships donated supplements to that Himalayan nation. FIAR has also assisted Blue Diamond, providing the group with condoms and lubricant for an education initiative.
Just across the pond, the Buyers’ Club has worked closely — as a supplement supplier and consultative partner — with London’s Helios Center, which describes itself as a “specialist holistic health charity… which grew over 20 years in response to the AIDS crisis.”
NYBC also has its sights set on the millions of people living with HIV/ AIDS in Africa and other less-developed countries around the world. The club recently finished a meta-analysis on multi-vitamins, which “in the context of Africa” could cost a meager “$8 to $40 a year per patient.” Such an intervention, the Buyers’ Club asserts, has been proven to slow “disease progression by 39 percent.”
Even as the group’s international ambitions grow, its historical roots as a supplement co-op continue to thrive.
“We have a steady influx of new members all the time,” said Becker, pinpointing specific pockets of buyers in San Francisco, Florida, and Massachusetts. Carter estimated that the organization helps about 1,000 members attain supplements annually.
And, he added, “People do get older every year.” The side effects of aging accompanied by those that arise from treating the virus, Carter pointed out, require a greater use of supplements. By 2015, the CDC estimates, 50 percent of Americans living with HIV will be over the age of 50. The aging of those already infected is only part of that equation. New infections among that age groups also play a role.
With all the activities the New York Buyers’ Club has taken on, its vibrancy masks an unsettling reality: With the shuttering last year of the Houston Buyers’ Club, it survives as the only effort of its kind in the US. Broadway Cares/ Equity Fights AIDS has stepped up with small grants and the club hosts its own member fundraisers, but Carter acknowledged that more such efforts are needed. Still, he and Becker voiced confidence in the state and strength of their organization.
The key to this small non-profit’s success, they said, is “the continuity of the people working on it.” Many of the activists involved in the Buyers’ Club are also engaged with FIAR and were earlier a part of the DAAIR effort. The two men clearly trust that this is the sort of commitment that will sustain NYBC in the city that remains the epicenter of the ongoing AIDS battle in the US.