In recognition of World AIDS Day 2014, New York Buyers’ Club hosted another installment in our ongoing free public seminar series, HIV+AGING. Held Tuesday December 2nd at City University of New York’s Graduate Center in Manhattan, the workshop was a great success and – like any good show – left folks craving more.
This thirst can now be slaked online – on NYBC’s new YouTube page, now featuring excerpts from the December 2 event – with more to come in the future!
HIV+AGING: What Can Complementary & Alternative Medicine Do for You? featured three outstanding and personable speakers presenting valuable information and insights gleaned from their years of experience in the field of health and HIV.
Panelists included: Dr. Vani Gandhi, Director of Integrative Medicine at Spencer Cox Center for Health at Mount Sinai’s St. Luke’s and Roosevelt Hospitals; Jackie Haught, Founder of Blue Lotus Acupuncture Center in NYC and an acupuncture practitioner for more than 30 years; and NYBC’s own Treatment Director, George Carter, also President of Foundation for Integrative AIDS Research.
Presentations were followed by a hearty and heartfelt Q&A session: attendees not only posed pertinent questions to the panelists, but also opened up with one another about their own personal “CAM” experiences, both positive and frustrating.
We are already planning the next event and welcome collaborators!
Tune in to New York Buyers Club’s new YouTube channel for excerpts from our latest HIV+AGING event and more.
Advances in treatment for HIV, hepatitis C, and other serious illnesses have been made over the last decade, and that’s good news! Many people also utilize nutritional supplements and other forms of integrative medicine to complement standard medical treatments, ameliorate adverse side-effects, and maintain health and well-being. However, many lack information and evidence about those approaches, and have difficulty affording them, since health insurance doesn’t usually provide coverage.
Two decades ago, in the darkest days of the AIDS epidemic, patients and their allies took action: we researched all kinds of possible treatments that might help – some proved helpful, others not. We also formed “buyers’ clubs” to provide information about and distribute experimental drugs, vitamins, and herbs. Thousands of lives were extended and saved. The award-winning film, “Dallas Buyers Club,” tells a story of one of them. Today, only one of these groups survives: We are New York Buyers’ Club.
Making available fully vetted, high-quality nutritional supplements at the lowest possible prices, and
Researching, simplifying, and disseminating the latest on how supplements can be powerful tools to reduce symptoms and drug side effects, and educating people about the most effective ways to use them – information accessible via our website, blog, newsletter, and social media.
NYBC offers online mail orders of more than 200 nutritional supplement products. Over the past decade, thousands worldwide have become Club members and benefited from our purchasing co-op and educational services. Our members especially value our personalized customer service to answer or research anyone’s questions.
New York Buyers’ Club is a vital resource for many people with serious illnesses such as HIV and hepatitis C. We have much potential to serve many more with other diseases such as cancer, diabetes, and heart disease. The evidence mounts daily about the power of nutrients to enhance health and well-being, and reduce the adverse side effects of standard medical treatments.
Your support for NYBC’s 2015 Indiegogo campaign will enable us to:
Compile more of the latest research on using nutrition to support people with chronic illnesses
Publish our SUPPLEMENT newsletter on complementary care more often
Mount a national campaign to promote membership in our purchasing co-op
Continue to improve our use of state-of-the-art digital technologies to put forth clear nutritional info
Engage various disease groups to build partnerships
Expand our efforts to attract major donors for new projects
Develop new efforts to address the crisis in access to affordable hepatitis C medicines
Your contributions are fully tax-deductible. We are the ONLY remaining non-profit buyers’ club in the USA helping people with serious illnesses. Thank you for your support to keep us going and growing!
You may have received an email from us last month informing you that we had made the painful decision to close the purchasing co-op component of the New York Buyers’ Club after ten years.
BUT NOW WE HAVE A PLAN FOR CONTINUING AND EXPANDING THE CO-OP!
A longtime member with significant nonprofit experience and passion about NYBC’s mission, Bob Lederer, has presented a plan that the board has accepted, to lead an effort to revitalize the organization. Bob will spend the next 3 months fundraising for and conducting a needs assessment of current and former Club members. To the extent the fundraising is successful, he will then spend up to another 7 months researching ways to strengthen the Club’s online and in-person marketing, and exploring partnerships in NYC and nationwide with healthcare organizations and groups representing people with HIV/AIDS, hepatitis C, cancer, diabetes, and other chronic illnesses. Bob estimates that this work, and a very necessary upgrade of our software to a state-of-the-art online commerce site so we can better compete with supplement retailers, will require a total of about $100,000.
We have already begun to receive generous contributions and pledges. So we have decided to keep the purchasing co-op open, even as we continue to reorganize, and, most importantly, as we continue our fundraising campaign to stabilize and strengthen NYBC. Please spread the word to your friends! (Order through our website or (800) 650-4983).
We don’t know whether this revitalization effort will succeed, but we want to give it our best shot. Key to the plan’s success will be the involvement of our members. That’s where you come in. There are several ways you can get involved, whether you are in New York or ANYWHERE.
Please email us at email@example.com and tell us how you can help us revitalize by:
• Joining us at the first of a series of NYBC Membership Meetings on Thursday, July 17 at 6:00 PM at DC 1707 (the union that houses us), 420 W. 45th St., in Manhattan, bet. 9th & 10th Aves. (room to be announced). Refreshments at 6 PM, meeting promptly at 6:30. We will put forward our preliminary analysis of fiscal and technological challenges that we face, as well as our initial revitalization plans, seek your input and suggestions, and break into working groups to begin the tasks of outreach, fundraising, and marketing that are necessary to revitalize this grassroots organization! We are also arranging for remote participation using conference call, Google Hangout (somewhat like Skype), and perhaps other online methods – details to follow. Please RSVP.
• Making a donation. Please be as generous as you can. We are grateful to those who have already stepped forward.
• Reaching out to your friends and colleagues to raise funds. But note that while we always welcome any contributions that people can comfortably afford to give, at this time we are focusing on obtaining major donations of $1,000 or more. So we’d welcome any introductions to such potential donors. We can send a board or staff member along with you to a meeting with such folks if you’d like.
• Helping with:
o grant writing
o writing/editing educational or marketing materials
o doing design/layout work
o computer work
o outreach to other health and community organizations about our services.
• Offering suggestions either for fundraising or marketing to expand the pool of people we serve.
• Sending us a short testimonial (1 to 4 sentences) that we can use publicly about why NYBC’s services and/or particular products have been particularly important in maintaining your health or staving off symptoms or side effects.
• Joining us in a follow-up briefing/work session by conference call and/or online services such as Google Hangout, to be held later in the summer (details to be announced).
You the members are our strength. Together, we can save and grow NYBC!
Thanks for all you’ve done,
George Carter, NYBC Administrator/Education Director
and the Board of Directors of NYBC
The movie Dallas Buyers Club scored a couple of splashy wins at the Oscars on March 2: Best Actor for Matthew McConaughey (playing Ron Woodroof, the cantankerous founder of the early AIDS buyers’ club); and Best Supporting Actor for Jared Leto (playing Rayon, a transgender HIV+ woman who becomes Woodroof’s sidekick). Bravura performances indeed, and controversial, too (just read the blogs!).
Meanwhile for us at the New York Buyers’ Club… real life goes on. We think Dallas Buyers Club does an important job in casting its bright Hollywood lights on the work of buyers’ clubs in the fight against HIV/AIDS, beginning in the early days of the pandemic. But here at NYBC –the last HIV/AIDS buyers’ club standing- we would like to present our own award: to YOU! For being an NYBC member, and thereby participating in a long-running community effort to distribute the best available information about managing symptoms and side effects of HIV and HIV meds, while also helping to make beneficial supplements widely accessible through a nonprofit co-op. And a special thanks to the many contributors out there who lent their financial support to NYBC’s recent successful fundraising campaign—you’re our equivalent of the Hollywood producer, without whom the magic can’t happen!
Of course much has changed, and a great deal has changed for the better, since the days depicted in Dallas Buyers Club. Some may even ask why we need a buyers’ club, given that HIV meds have advanced so much in the past 20 years. Unlike Ron Woodroof’s Dallas Buyers Club, NYBC is not importing unapproved drugs or trying novel therapies—that desperate search for any sort of treatment has abated (at least in the wealthier countries). We can look back at the time when New York was home to the PWA Health Group and DAAIR (from which NYBC arose), and there were buyers’ clubs for people with HIV/AIDS in Boston, Houston, San Francisco, Chicago, Atlanta, and Phoenix, among other places. But what need does the New York Buyers’ Club fill today?
Some ask why we need a buyers’ club,
given that HIV medshave advanced so much
in the past 20 years?What need does
the New York Buyers’ Club fill today?
Well, recent research brings into sharper focus what we have understood for quite a while: living long term with HIV is a huge challenge. Antiretroviral (ARV) therapy works to reduce the risk of an AIDS-defining illness to nearly zero, while offering the prospect of a normal life span. But problems abound. First, several non-AIDS-defining conditions become more common. These include several cancers, some stemming from infections like HPV. Then there are the longer term effects of ARV, which can threaten quality of life and increase mortality risk, including challenges to the cardiovascular system, nerves, cognitive function, liver, kidneys, and bones.
These side effects are being understood today by some old mechanisms that are getting new attention. At NYBC’s community event on HIV and Aging, held last March, our speaker Steve Karpiak, Ph.D. emphasized the inflammatory processes that continue throughout HIV infection and the cascade of damage that persistent inflammation causes, even as ARV therapy holds the virus in check. And just last October, we were interested to read a comprehensive review on the health effects of chronic inflammation during HIV infection. According to this overview, many markers of inflammation remain high during HIV infection, and those inflammatory problems are linked to elevated risk of cardiovascular, liver, kidney, bone, and neurologic diseases. But none of this is really news to us: addressing the chronic inflammation that accompanies HIV has been central to our work at NYBC—and between those of us at NYBC and those who go back to DAAIR days, we’ve been addressing this model of the disease for over 20 years!
Probiotics may help in countering
the damaging inflammatory processes that are found in HIV infection,
even when the virus is held in check by meds.
The recent review of inflammation effects during HIV did suggest that probiotics, for example, may hold promise for countering inflammatory processes that are concentrated in the gut. Indeed, probiotics have been a staple in the NYBC catalog from the start, even when we were simply recommending them to support gastrointestinal health and improve absorption of nutrients. Now we’re looking forward to new research on supplements, which in this case may help us understand the additional benefits of probiotics as anti-inflammatories. Meanwhile, NYBC continues to search out the latest news about a wide array of topics, from hepatitis C coinfection, to alternative treatments for sleep and mood disorders, to the value of a daily multivitamin + selenium for people with HIV.
In conclusion (music coming up now, so we must hurry), see Dallas Buyers Club, both for the Oscar-winning performances, and for its slice of history about HIV/AIDS buyers’ clubs. But please remember to think of the New York Buyers’ Club as well, and what it’s doing for you today!
Enid Vazquez. “Houston Buyers Club: Desperate Days Beyond Dallas.” Positively Aware, Jan-Feb 2014.
An excellent review of Dallas Buyers Club, with much background on the HIV/AIDS buyers’ club movement
Deeks, Steven G et al. “Systemic Effects of Inflammation on Health during Chronic HIV Infection.” Immunity, October 17, 2013
As we reach the finish of the New York Buyers’ Club fundraiser, we thought it was time to circulate the “Top Ten Reasons” to support NYBC–in case there are those of you out there who aren’t familiar with the unique contributions this nonprofit co-op and information exchange makes to the lives of people with HIV and/or Hepatitis C.
TOP TEN REASONS TO SUPPORT THE NEW YORK BUYERS’ CLUB
1. ThiolNAC. NYBC is the only source for this formula combining two widely recommended and well-researched antioxidants, alpha lipoic acid and NAC (N-acetylcysteine). ThiolNAC is especially useful for people with HIV and those with liver disease. NYBC’s combination formula reduces both cost and pill count.
2. NYBC stocks a unique lineup of high quality, specially formulated multivitamins, including Added Protection and Ultra Preventive Beta from Douglas Labs, and the Super Immune Multivitamin and Opti-Energy Easy Swallow from SuperNutrition, Member pricing for these multis is very low—in fact, Douglas asked us to hide the Member price from the general public!
3. NYBC’s MAC Pack and Opti-MAC Pack provide a mix of antioxidants and micronutrients very similar to those in K-PAX®, but at half the price. (Included in many formularies, K-PAX®, is based on Dr. Jon Kaiser’s 2006 journal article that reported an increase in CD4 count for people with HIV taking the nutrient combination.)
4. NYBC stocks a wide selection of Traditional Chinese Medicine supplements, from suppliers like Health Concerns, Pacific Biologic, and Zhang. (NOTE: Zhang products are available only if you log into the NYBC website as a Member.)
5. PharmaNAC®. This effervescent, extremely stable form of NAC (N-acetylcysteine) supports respiratory and immune function. In particular, it holds promise for people with cystic fibrosis, according to recent clinical trials conducted at Stanford. NYBC has stocked an effervescent form of NAC since 2004, based on its well-supported usefulness for chronic conditions.
6. NYBC specializes in probiotics like Florastor® and Jarro-Dophilus EPS. Probiotics support gastrointestinal health, a foundation for general health. And, a recent review in the Journal of the American Medical Association found probiotics effective for preventing and treating antibiotic-related diarrhea, a common side effect.
7. NYBC monitors and presents to its Members the latest research on supplements to support cardiovascular health, including fish oil, CoQ10, plant sterols, and Vitamin D.
8. NYBC annual membership is a tremendous bargain at $5 (low-income, unemployed), $10 (middle-income), or $25 (higher income). Do you know of any other organization that offers annual memberships as low as $5, yet gives you such significant savings?
9. The NYBC Blog alphabetically indexes more than 400 informative posts, providing the latest research news about supplements in an easy-to-read online format.
10. Yes, you can talk to a live person at NYBC! Our Treatment Director, George Carter, has two decades of experience with supplement research, especially for people with HIV and/or liver disease. Reach him at our toll-free number 800-650-4983.
The New York Buyers’ Club, your community-minded nutritional supplements co-op, provides access to low-cost, high-quality supplements especially selected for people with HIV, Hepatitis C and other chronic conditions. NYBC also reports on the best and most useful scientific information on using supplements to stay healthy–see, for example, our previous post on a ground-breaking November 2013 study in the Journal of the American Medical Association, which points to an important role for multivitamins and selenium as a means to slow progression of HIV.
Please help us continue our important work—donate today:
We urgently need your help to continue the important work of the New York Buyers’ Club, your nonprofit supplements co-op and source of information on supplements for people with HIV, hepatitis and other chronic conditions.
NYBC gives tremendous value to the HIV+ community. You may have attended our March 28, 2013 event “HIV & Aging: Living Long and Well” with Steve Karpiak, Ph.D., which offered some eye-opening perspectives on the growing population of HIV+ people over 50. And you may have read the feature article about NYBC in the April 24, 2013 issue of Gay City News: “HIV+ Wellness Can Be a Cooperative Push”–a great story if you want to understand the crucial role of a nonprofit co-op like NYBC in helping people survive and thrive through the AIDS epidemic.
PLEASE MAKE A CONTRIBUTION TODAY by going to our website’s DONATION PAGE. You’ll be helping the New York Buyers’ Club continue its mission of supplying a unique catalog of low-cost supplements to people with HIV. You’ll be helping us continue offering information-rich, life-enhancing events like “HIV & Aging.” And you’ll be helping us provide careful reporting of research about supplements on our website and Blog, information that’s been essential to many in maintaining and improving their health and quality of life.
YOU CAN ALSO MAIL YOUR DONATION TO US:
420 W. 45th St
New York, NY 10036
Remember, your contribution to NYBC is tax-deductible because we are a 501c3 nonprofit, recognized by the IRS.