SUPPLEMENTS AND OTHER SMART STRATEGIES FOR LONGER LIVING – A panel discussion on traditional, complementary and alternative treatments for HIV

We reprint below our report on this June 2009 forum, which brought together a range of views on managing HIV:

SUPPLEMENTS AND OTHER SMART STRATEGIES FOR LONGER LIVING was the title of a panel discussion on traditional, complementary and alternative therapies for HIV presented on June 25, 2009 by the New York Buyers’ Club in celebration of its fifth anniversary. The event brought together experts whose knowledge spans East and West, and whose experience ranges from community organizing and scientific writing, to clinical research and the practice of medicine, whether as an M.D. or as a licensed acupuncturist and specialist in Chinese herbalism.

NYBC was especially proud to host our Guest of Honor, Sunil Pant, the first openly gay Member of Parliament in Nepal, and Founder/Director of the HIV-support organization the Blue Diamond Society, which was recognized by the International Gay and Lesbian Human Rights Commission in 2007 as “one of the most effective human rights groups in the world.” At the start of the panel discussion, our Guest of Honor gave a moving account of the work he and his organization have done over the last decade in securing rights for sexual minorities in Nepal, and in fighting for decent treatment of Nepalis with HIV/AIDS. Sunil also took a moment to recall the many years he has known and worked with our own George Carter, who has directed NYBC efforts to provide supplements and other aid to BDS.

We also felt privileged to hear from our other panelists: Dr. Paul Bellman, a NYC physician who has been treating people with HIV/AIDS since the start of the epidemic; Tim Horn, President and Editor of AIDSmeds.com; Alex Brameier, a licensed acupuncturist and herbalist; and George Carter, Director of the Foundation for Integrative AIDS Research. It’s true that the first two of these panelists are in the mainstream of AIDS treatment practice, by which we only mean to say that their main area of expertise is antiretroviral pharmaceuticals. Yet Dr. Bellman also spoke of the usefulness of several supplements that NYBC and its predecessor DAAIR have long recommended: alpha lipoic acid, carnitine, and CoQ10. Tim Horn, whose website focuses largely on pharmaceutical treatments, nevertheless also acknowledged that the “holistic” approach to long-term health for people with HIV makes a lot of sense. And he went on to say that he recognizes that a whole range of “therapies” (including even diet and exercise) may be needed to address worrisome trends in heart and lung disease among people with HIV who are taking ARVs.

Alex Brameier, the Lic. Ac. on our panel, engaged our audience with an impromptu survey on how people view their acupuncture treatments. She then discussed some of the conditions that lend themselves to acupuncture, based on clinical experience: pain relief, stress reduction, neurological and musculoskeletal disorders, to name a few. Very useful as well was the contrast she drew between acupuncture as practiced in China and Japan (where treatment may be daily or every other day), and the West, where time and financial constraints often dictate otherwise. Her tips on how to get the best out of acupuncture and how acupuncture and herbs can work together were also very valuable.

Last but not least among our contributors was George Carter, who’s had two decades of experience with supplements, from clinical research to acting as NYBC Treatment Director. George, as all who know him can attest, is nothing if not thorough, and for this event he prepared a “Short Primer on Side Effects,” a compact but comprehensive review of HIV medication side effects, ranging from malabsorption/diarrhea//nausea, to lipid abnormalities (of concern for cardiovascular health), to fatigue and insomnia, to insulin resistance/diabetes, to liver damage, to bone issues, to peripheral neuropathy. We hope to produce this super-useful handout as a handy pocket guide in the near future, so stay tuned.

An inspirational, lively, and (if we do say so ourselves) immensely informative event. If you were there, thanks for coming! And if not–we certainly hope to see you at the next one.

Reprinted from the SUMMER 2009 SUPPLEMENT: Newsletter of the New York Buyers’ Club, which can be read in its entirety at

http://newyorkbuyersclub.org/supplement/index.html

In addition to the piece above, this issue contains a report on how research on diet and nutrition has led to new knowledge about supplements (“Are You Ready to Join the Food Revolution?”), and a short review on HIV and cognitive impairment.

Note: Email subscriptions to THE SUPPLEMENT are free to NYBC members.

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June 24: NYBC 5th Anniversary Birthday Party!

NYBC-5thAnniv-Poster.indd

New York Buyers’ Club Presents:

 “Supplements and Other Smart Strategies for Longer Living”

 A Free Panel Discussion with Experts on Both Eastern and Western Approaches to Treating HIV
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DATE: Wednesday June 24th, 7:00pm – 10:00pm
PLACE: The Center, 208 West 13th Street, New York City
MORE INFO: www.NewYorkBuyersClub.org/5

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The New York Buyers’ Club (NYBC), a nonprofit nutritional supplements information exchange and purchasing co-op, celebrates its fifth anniversary with a free public forum entitled “Supplements and Other Smart Strategies for Longer Living.” Co-sponsored by Gay City News and POZ magazine, this event promises to be both informative and lively, with panelists including Sunil Pant, the first openly gay Member of Parliament in Nepal and an internationally recognized advocate for people with HIV/AIDS; Tim Horn, President and Editor-in-Chief of AIDSmeds.com; noted NYC physician Paul Bellman, who has specialized in caring for people with HIV since 1986; Ann (“Alex”) Brameier, a licensed acupuncturist and herbalist; and George Carter, Director of the Foundation for Integrative AIDS Research and Treatment Director of NYBC. The forum will be moderated by NYBC President Carola Burroughs, who has worked in the field of HIV education for two decades.

Since its inception in 2004, NYBC has been a source of information on alternative and complementary therapies, especially for people with HIV and/or hepatitis (see its comprehensive website at http://www.NewYorkBuyersClub.org). It has also functioned as a buyers’ co-op, making a unique catalog of supplements available to its US and international membership at very low cost. NYBC endorses a holistic approach to health and healing, embracing both traditional bodies of botanical knowledge and modern evidence-based research findings, and in general stressing the need to integrate diet/nutrition, mental health and physical health, appropriate supplementation and standard pharmaceuticals. Like its predecessor DAAIR (Direct Action Alternative Information Resources), NYBC also believes that everyone has the right to actively engage in researching and understanding their healthcare options, and that we all gain by learning to critically evaluate healthcare information provided by the media, the government, “Big Pharma,” or supplement manufacturers.

After statements from the participants and a moderated panel discussion, the floor will be open for a Q&A session, followed by champagne (or cider) and cupcakes in celebration of New York Buyers’ Club’s fifth anniversary.

Supplements and Other Smart Strategies for Longer Living
Wednesday June 24th, 7:00pm – 10:00pm
The Center, 208 West 13th Street, New York City
http://www.NewYorkBuyersClub.org/5

Meet the Panelists:

Guest of Honor Sunil Babu Pant is the first openly gay Member of the Constituent Assembly (Parliament) of Nepal, and the Founder and Director of the Blue Diamond Society (BDS), a community-based organization that has worked for the rights of sexual minorities and people with HIV since 2001. BDS played an active role in Nepal’s transition from a conservative (and homophobic) monarchy to a federal republic in 2006-7, and subsequently has been successful in several advocacy campaigns, including the effort to legalize gay marriage, making Nepal the first Asian country to do so. Now counting more than 150,000 members, BDS continues to provide care and support to Nepalis with HIV/AIDS, while also working to reduce stigma and discrimination against the Himalayan nation’s sexual minorities. In 2007, BDS received the Felipa de Souza award from the International Gay and Lesbian Human Rights Commission, which called it “one of the most effective human rights groups in the world.”

Paul Curtis Bellman, MD is a physician whose private practice in Greenwich Village, New York, has specialized in caring for HIV-positive patients since 1986. Dr. Bellman is a board certified internist and currently an associate attending in the Department of Medicine at St. Vincent’s Manhattan and a senior lecturer in the Department of Immunology at Weill Cornell Medical College in New York. He is a 1982 graduate of the New York University School of Medicine and has been involved in the clinical care of HIV-positive people since the epidemic began. Bellman actively participates in clinical research as well as the clinical practice of HIV medicine.

Ann Brameier, L. Ac. (known by all as Alex) is an herbalist and acupuncturist, licensed in New York since 1992. Certified by the National Certification Commission for Acupuncture and Oriental Medicine in both acupuncture and Chinese herbal medicine, she practices an individualized combination of acupuncture, acupressure, tuina and Chinese herbal medicine. Says Brameier: “Combining these modalities can address a myriad of health complaints to achieve a speedier resolution of the patient’s issues than might be achieved by application of only one of these ancient traditions.”

NYBC’s George M. Carter is the Director and Co-Founder of the Foundation for Integrative AIDS Research (FIAR), and has been an AIDS activist for nearly 20 years. His work has focused on research on the use of integrative, traditional, complementary, and alternative medicine therapies for HIV/AIDS and Hepatitis C, as well as the pathogenesis of HIV disease. Mr. Carter has attended numerous national and international conferences on HIV/AIDS, and has served as a civil society delegate for UNGASS sessions at the United Nations. Mr Carter serves as Treatment Director for New York Buyers’ Club.

Tim Horn is president and editor-in-chief of AIDSmeds.com. He has worked as a writer, editor and educator for a number of other AIDS organizations, including Physicians’ Research Network (PRN), the American Foundation for AIDS Research (amfAR), the AIDS Treatment Data Network, and the PWA Health Group. Tim is a member of the AIDS Treatment Activists Coalition and has also done an extensive amount of HIV education and advocacy-related work in Mexico, where he lived for 18 months, and was a founding board member of Aid for AIDS. He has been living with HIV since 1992.

Nepal Journey

Notes from the Valley—
George M. Carter

In February, I returned to Kathmandu, Nepal, a city of about 700,000 nestled in the valley below the foothills of the mighty Himalaya mountains. I had visited several times before but it has been 5 years since my last visit. So it was about time! The journey was not so difficult (13 hour direct flight to Delhi) and melatonin significantly attenuated jet lag. I spent one night in Delhi before heading quickly to Kathmandu where, upon arriving, I was greeted by Roshan (BDS Program Officer) and their inestimable and cheerful driver, Bappu.

The dust and smells were as I remembered—and while somewhat noxious, always a relief after the intensity of India. The big change was the lack of power. During my visit (and for some weeks before and since), power was only on around 6 hours per day. And at seemingly random times. Many places had generators, loud, smelly, running on diesel. There’s a major problem (along with garbage disposal) that begs for clean solutions like solar and wind!

In the summer of 2001, I got an email from a fellow from Nepal, Sunil Pant. At first, I didn’t know who he was—he was asking for help to start a condom distribution program. Then it dawned on me that he was a friend of a guy I had met, Michael Daube, who was doing some of his own pretty amazing work over there (see www.citta.org for more information about him).

So I figured he was a good guy. Around this time, a group of us were establishing the Foundation for Integrative AIDS Research (FIAR) (www.fiar.us). Our finance guy had some money so I arranged to send over some condoms. At the time, I had no idea what Sunil might do with the shipment. Their access to reliable latex condoms was nonexistent. (Later, we sent over water-based lube until a company in India began finally manufacturing it with the help of the inestimable NAZ Foundation – www.nazindia.org/.)

I envisioned perhaps a kiosk where a brochure and condoms might be distributed. I knew that the word was that the HIV epidemic in Nepal was mostly driven via unprotected heterosexual sex and sharing syringes among injection drug users. Little did I know that Sunil had other plans!

He assembled a remarkable group of metis, males who dress and/or identify as female. They had trainings on how HIV is transmitted, how to use condoms, etc., provided by large donor groups. And then they went to parks where men have sex with men (MSM). The notion that there were no MSM in Nepal was obliterated. And thus was born the Blue Diamond Society (www.bds.org.np).

Eight years later, things have grown considerably! Through much struggle, violence and some police oppression, BDS perservered and now operates in 20 cities and 16 districts throughout Nepal. Their programs consist of:

• HIV Prevention Programs (run by Salina)
• HIV/AIDS Care and Support Programs (providing HIV testing, some blood work, antiretrovirals, multivitamins (provided through NYBC), meditation, massage and spiritual and emotional community support)
• Assuring Lesbian, Gay, Bisexual and Transgendered (LGBT) rights in the developing Nepali Constitution
• Environment Issues

Sunil also ran for Parliament last year as an openly gay man—and won! In addition, lawsuits brought by BDS and other organizations have brought the Nepal Supreme Court to the decisions that the right to marry is not gender-based and issued a directive to the Congress to assure marriage rights for the LGBT community. Nepal, having recently shifted from a Kingdom to a Republic, is working on its Constitution and they are hard at work drafting language to assure LGBT rights.

In Kathmandu, I visited three BDS sites during my stay. The main office building is one I remember from previous visits (and indeed, in the early days, crashing there some nights!) Just down the road is a newly-acquired smaller building that houses their Prevention programs. At the time of my visit, they were working on a video documentary about LGBT rights and issues. I worked with Salina and friends on the translations and text.

We drove out toward the Ring Road (that surrounds Kathmandu) in the eastern end of the city where we visited the Care and Support Building, run by Rajesh and friends. Care and Support has in the main building, an exam room, waiting area with TV (when there is power!), a doctor’s office with a small pharmacy and a nice large kitchen. Outside, there is another room that serves as a meeting center and meditation room. The roof of the main building is also used and is currently undergoing renovation.

Pradeep Khadka also explained to me several other programs BDS is working on. Their website is currently being revamped and more content added to it. They have plans for several other websites as well. In addition, Page Six is a glossy news magazine that features, embedded among health, fitness, celebrity and other such news, articles about the work of BDS, prevention and treatment issues and other pertinent information. I understand it is the second most popular publication in Nepal!

I also met with Prakash Jha who is the BDS point person on the Environmental Initiatives. These got their impetus with the horrific floods suffered in the summer of 2008 in the southern part of Nepal that borders India known as the Terai region. The floods were seen as a direct result of global warming. Indeed, as I flew past the Himalayas, where the great snow-capped mountains stood there were also many dark patches that should, at this time of year, be covered with snow.

We discussed his ideas for anaerobic digestion of garbage (rather than burning it) to produce fuel. With the election of the “green jobs” man, Barack Obama, I expressed a hope and encouragement that perhaps there would be funding available to cover start-up costs for solar and wind generators. Better, I think, than hydroelectric, which degrades the environment and indeed, a large dam in China has been implicated in the horrific earthquake of May, 2008 that killed over 80,000 people.

I’m also grateful to my upstairs neighbor, Leslie, who not only cared for my cats, but relinquished her copy of McKibben’s Deep Economy which I brought over. The man has some terrific ideas altogether!

On a fine Saturday, Valentine’s Day, there were two events. First was a celebration of Pink Triangle Day in near Durbar Square at the Basantapur temple complex. A beautiful area, many BDS members and supporters showed up to express the loving relationships of the Third Gender. A long sheet was opened out slowly and passers-by were asked to sign it in support of the rights of the LGBT community in Nepal.

Being an American, I half expected to see some sign of disgust, protest or ugliness. But Nepali people are far more supportive, open-minded and open-hearted than many of my fellow citizens in the United States. It was greatly encouraging to see people not only curious and engaged as to what was going on but more than happy to sign the sheet! By the end of the day, the (10-foot?) long sheet was filled.

Later that day, Bappu drove Sunil, Prakash and I to the mountains just outside of Kathmandu to the Tapoban Meditation Center of the late, great Swamiji Osho. We went in part to see a biodigestor that Prakash had installed that is designed to take the waste from the community and transform it into biofuel. A first, small demonstration project that it is hoped will serve as a model for a wider network of such projects throughout the nation.

Finally, there were grave concerns about the process of the selection of Sub-Recipients (SR) for Round 7 of the UN’s Global Fund for AIDS, TB and Malaria (GFATM). The process appears to have been corrupt and rife with conflicts of interest, at least for the portion relating to LGBT issues. We worked on relevant letters and FIAR sent a letter to Michel Kazatchkine and others at GFATM. At the very least, closer scrutiny will be paid to assure that the SRs will live up to their contractual obligations. However, our hopes are not high that the monies will be well utilized. The situation has also resulted positively in a closer examination of the transparency and inclusiveness of the Country Coordinating Mechanism for Nepal. It is hope that these issues will be redressed for Round 8.

Altogether, the journey, while far too short, was productive and fascinating.

My grateful and deep thanks to all the friends at BDS who helped to make my visit both productive and enjoyable! And to NYBC and FIAR for their support that made the journey possible.

If you would like to see more of the journey to Nepal, visit the URL below for some photos:
http://picasaweb.google.com/gmcFIAR/NepalJourneyFeb09?feat=email#

Super Nutrition Helps Our Friends in Nepal and Zimbabwe!

NYBC has been, where and as it can, helping our friends at the Centre in Harare, Zimbabwe as well friends at the Blue Diamond Society in Kathmandu, Nepal.

Recently, Super Nutrition sent us a donation of vitamins that we immediately turned around and sent off to these two organizations. We are grateful that such high quality products are getting some play around the world: healthcare is a RIGHT. And we know a multi is a significant part of managing HIV disease. The clinical data unequivocally support the use of a multi, whether using antiretrovirals or not. (And yes, NYBC disagrees with the notion proposed by some that either ARV or a multi are the only things one needs; neither position is very intelligent!)

In other news, Blue Diamond Society has been working to find housing for people with HIV who have been removed from their clinic by a homophobic and AIDSphobic landlord. An all-too-familiar story around the world.

If you can help NYBC with donations either of vitamins/supplements or cash to help our friends, it would be greatly appreciated! NYBC’s sister organization, FIAR, is accepting any funds earmarked to help out the Nepali situation. More information below:

HIV & AIDS Hospice
Concept note for the purchase of a building
Kathmandu, March 21 (IANS) Twelve men diagnosed with AIDS, four of whom are terminally ill and unable to walk, were thrown out and the AIDS hospice and care centre run for them shut down in Nepal due to the prevailing anti-gay bias, without any human rights group intervening on their behalf. Just as Nepal’s sexual minorities were celebrating the community’s first participation in a national election as contestants, the AIDS hospice run in Kathmandu for homosexuals by Nepal’s pioneer gay rights organisation was closed down Thursday night by the landlord after pressure from the neighbours.

Introduction
Despite significant progress in recent years on policy and awareness, society’s stigma and discrimination towards males who have sex with males and transgender people (MSM/TG) in Nepal remains. This prejudice is compounded when MSM/TG are infected with HIV and Blue Diamond Society’s (BDS) Care & Support programme has been severely challenged in finding accommodation for its HIV & AIDS Hospice. To remove the obstacle of landlord’s prejudice, BDS believes it is necessary to purchase its own premises for Hospice/Care & Support activities.

Background
Government estimates put the number of MSM/TG in Nepal at 130,000 although BDS’ and regional/international experience suggests it is closer to 500,000. Official studies show an HIV prevalence rate of 3-4% indicating an MSM/TG population living with HIV & AIDS in excess of 4,000. Many of these have been rejected by their families and society and it became clear to BDS that they needed care and support from their own community who understood their sexuality/gender, could provide compassionate care and give them access to health services without discrimination. With the support of the Elton John AIDS Foundation (UK) and Sidaction (France), BDS in 2005 opened a hospice centre in Kathmandu. MSM/TG from all over Nepal have made use of this facility and, in two and half years, over 700 MSM/TG living with HIV & AIDS have been supported by staff, many of whom are themselves HIV positive, and been given counselling, care and medical treatment. During the 6 months ended 30 September 2007, despite only having 7 proper beds, a total of 94 MSM/TG were accommodated (on mattresses on the floor when all beds were full) at the Hospice for periods ranging from 1 day to several months. However this work has been severely hampered by being forced to move premises 4 times in 2½ years as landlords, often pressured by neighbours offended by the presence of MSM/TG and HIV+ staff and clients, refuse to extend short-term leases leading to eviction. It has become more difficult to find suitable premises and following the last eviction on 20 March 2008, staff and 12 patients have been forced to find a temporary home in a meeting room at BDS’ office.

Proposed Project
To overcome discrimination by landlords and the disruption of frequent moves, BDS believes it is necessary to purchase its own building for Hospice/Care & Support activities. This building would provide a stable and secure base from which to continue the following existing activities of BDS Care & Support:
Clinical care
Hospice facility (15 beds minimum)
Medical check up and monitoring
HIV testing and counseling
Opportunistic Infection treatment
Co infection treatment
Anti Retroviral Therapy facilitation
Social support
Ambulance service to access hospital services
Training (for self-care and treatment etc) and stress reduction workshops
Palliative care
Food and logistical support

Running costs would continue to be funded by existing donors and/or new ones.

Estimated Budget (US dollars)
Buying the building (depends on the location) 100,000 – 150,000
Furnishing and equipment 50,000
Setting up cost 5,000

Total US$ 155,000 – 205,000

We would be more than happy to submit full proposal in necessary once we have a positive indication from you.

Sunil Babu Pant
Director
Blue Diamond Society

Blue Diamond Society is Nepal’s leading community based organisation representing sexual and gender minorities. It seeks to convince Nepali society to respect the human rights of its community members and to empower them to advocate for these rights and deliver HIV & AIDS programmes for themselves.
http://www.bds.org.np
bluediamondsociety@yahoo.com