Top Ten Reasons to Support the New York Buyers’ Club

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.

Learn more and make your donation at

http://www.indiegogo.com/projects/empower-people-with-hiv-hep-c-to-thrive

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.

NYBC Fundraising Campaign Almost There – Please Donate Today to Take Us Over the Top!


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:


DONATE TO NEW YORK BUYERS’ CLUB


(NYBC is a 501c3 nonprofit organization recognized by the IRS, so your contributions are tax-deductible!)


You can also visit the NYBC website and online catalog at

http://www.newyorkbuyersclub.org/

HIV and Aging: Living Long and Living Well

By 2015, more than 50% of the United States HIV population will be over 50. There are approximately 120,750 people now living with HIV/AIDS in NYC; 43% are over age 50, 75% are over age 40. Over 30% are co-infected with hepatitis.

What does the future hold for people with HIV and HIV/HCV as they get older?

These statistics and this question furnished the starting point for the New York Buyers’ Club March 28 event HIV and Aging: Living Long and Living Well, presented by Stephen Karpiak, PhD, of the AIDS Community Research Initiative of America (ACRIA).

Dr. Karpiak’s background uniquely positions him to paint the full picture behind the bare statistics, and to provide expert guidance through the complex healthcare challenges faced by the growing population of older people with HIV. After two decades as a researcher at Columbia University’s Medical School, Dr. Karpiak moved to Arizona, where he directed AIDS service organizations through the 1990s, including AIDS Project Arizona (which offered a supplements buyers’ club similar to NYBC’s). In 2002, back in NYC, he joined ACRIA as Assistant Director of Research, and was the lead investigator for the agency’s landmark 2006 study, Research on Older Adults with HIV. This report, the first in-depth look at the subject, surveyed 1,000 older HIV-positive New Yorkers on a host of issues, including health status, stigma, depression, social networks, spirituality, sexual behavior, and substance abuse.

Why are there more and more older people with HIV? The first and principal answer is very good news: HIV meds (HAART), introduced more than 20 years ago, have increased survival dramatically. Secondly, a smaller but still significant reason: older people are becoming infected with HIV, including through sexual transmission. (Older people do have sex, though sometimes healthcare providers don’t seem to acknowledge this reality.)

As Dr. Karpiak noted, HAART prevents the collapse of the immune system, and so it serves its main purpose, to preserve and extend life. And yet, as he reminded the audience, HIV infection initiates damaging inflammatory responses in the body that continue even when viral load is greatly suppressed. These inflammatory responses, together with side effects of the HIV meds, give rise to many health challenges as the years pass. In people with HIV on HAART, research over longer time periods has found higher than expected rates of cardiovascular disease, liver disease, kidney disease, bone loss (osteoporosis), some cancers, and neurological conditions like neuropathy.

That brings us to “multi-morbidity management”—a term we weren’t enthused about at first, since it sounded more like medical-speak than the plain talk our NYBC event had promised. But Dr. Karpiak gave us a simple definition: dealing with three or more chronic conditions at the same time (and HIV counts as one). He then made the case that this is a critical concept to grasp if older people with HIV are going to get optimal care. Multi-morbidity management, he explained, is a well-accepted healthcare concept in geriatric medicine, which recognizes that older people may have several conditions and will benefit from a holistic approach in order to best manage their health. Treating one condition at a time, without reference to other co-existing conditions, often doesn’t work, and sometimes leads to disastrously conflicting treatments.

And here’s where Dr. Karpiak warned about “polypharmacy”–another medical term worth knowing. “Polypharmacy” can be defined as using more than five drugs at a time. Frequently, it comes about when healthcare provider(s) add more and more pills to treat a number of conditions. But this approach can backfire, because, as a rule of thumb, for every medication added to a regimen, there’s a 10% increase in adverse reactions. That’s why adding more and more drugs to treat evolving conditions may be a poor approach to actually staying well.

In closing, Dr. Karpiak focused especially on a finding from ACRIA’s 2006 study: the most prevalent condition for older people with HIV, aside from HIV itself, was depression. Over two-thirds of those surveyed had moderate to severe depression. Yet while depression can have serious conse-quences–such as threatening adherence to HIV meds–it has remained greatly under-treated. It may seem an obvious truth, but as Dr. Karpiak underlined, psychosocial needs and how they’re met will play a big role in the health of people with HIV as they age. What social and community supports are available becomes a big medical question, and how healthcare providers and service organizations respond to it can make for longer, healthier lives for people with HIV.

And now we come back to NYBC’s contribution to the discussion on HIV and Aging. While NYBC doesn’t keep track of such information in a formal way, we do recognize that quite a few of our members have been using supplements since the days of our predecessor organization DAAIR–going back 20 years now. That’s a lot of accumulated knowledge about managing symptoms and side effects among people with HIV! To accompany the March 28 presentation, our Treatment Director George Carter drew up a pocket guide to complementary and alternative approaches: HIV and Aging – Managing and Navigating. Partly derived from his long experience, and partly drawn from a 2012 Canadian report, the guide ranges over those kinds of “co-morbidities” that Dr. Karpiak spoke of, including cardiovascular, liver, kidney, bone, and mental health conditions. Interventions or management strategies include supplements, but also diet and exercise recommendations, as well as psychosocial supports (counseling, support groups, meditation, and activism).

NYBC has also updated several info sheets from its website and blog, offering these as a way to address some of the most common healthcare issues facing people with HIV as they get older: cardiovascular topics; :digestive health; NYBC’s MAC-Pack (a close equivalent to K-PAX®); key antioxidants NAC and ALA and their potential to counter inflammatory responses; and supplement alternatives to anti-anxiety prescription drugs. These info sheets, together with the HIV and Aging – Managing and Navigating pocket guide, are available on the NYBC website and blog.

We hope that our HIV and Aging: Living Long and Living Well event has been useful to all. Special thanks to our audience on March 28, many of whom brought excellent questions to the session. Now let’s continue the conversation…

To your health,

New York Buyers’ Club

NYBC_March282013

Help for Hep C meds–PLEASE SIGN!

We desperately need help in getting signatures to get sofosbuvir and daclatasvir in clinical trials. Please use the short URL (click below or cut-and-paste into your browser):

http://1.usa.gov/WV393T    

Part of the reason/problem is that, as I understand it, these White House petitions need to now have 100,000 signatures (formerly 25,000) in order to get attention. I don’t know how we’re going to manage this but we have to try.

So I am asking you please to sign–and spread the word to family, friends, through networks and lists. Lives depend on it–and over 300,000 people die each year from Hep C for lack of treatment.

Here’s the story. The current treatment for Hep C is PEG-IFN plus ribavirin for 48 weeks. With genotype 1, one has a 40% chance of a sustained viral response (SVR) (no virus 12-24 weeks after finishing therapy). The treatment is costly and HORRIBLY toxic in addition to being not very effective and requiring weekly or twice weekly injections. (And Hep C is global: many people live in countries that hardly have enough syringes for other medical needs.)

Numerous all oral drugs are being investigated. The single most promising combination is Gilead’s drug, PSI-7977 (now GS-7977 or sofosbuvir) and the Bristol Myers Squibb drug, daclatasvir. Two pills. Period. The one study of about 400 people showed that the two drugs together CURED 100% of people (SVR12) with genotype 1 with few or no side effects in HALF the time (24 weeks of drug therapy). 12 weeks of therapy may work as well.

GILEAD said NO to further studies of this combo, a move purely driven by greed and corporate envy (Gilead has provided no reasons, medical or otherwise). They have a drug in the same class as daclatasvir and they want to (need to) corner the market. Their version tho, does NOT work as well and seems to require the anemia-inducing horror of ribavirin to work, with only at best an 80% SVR.

GILEAD ALSO pulled a boneheaded move. John C. Martin, CEO, actually BOUGHT sofosbuvir from Pharmasset–for $11 BILLION. THIS IS INSANE – it costs, pharma claims, $1 billion to bring a drug to market to begin with (though others have suggested it is probably much less than that). Pharmasset had only four drugs in its portfolio, one of which had already failed. Essentially, the only drug Gilead is developing is sofosbuvir. And they will want to get a VICIOUS return on that “investment” (that screwed their market capitalization–if I had Gilead stock, I’d sell.)

So they will probably jam their shittier drug in with this drug they bought in a “fixed dose combination” precluding use with daclatasvir and charge a small fortune. The rich get cured and those of us without insurance die.

Meanwhile, even if they DO make it available as a separate drug, we will NOT have information on how it works with different populations. People with HIV co-infection for example or on how it interacts with ARV or those who have relapsed.

GILEAD is a horrible company and to compound things, they spread cash around to a lot of AIDS and Hep C organizations and “community leaders” who then remain silent. And as I recall, SILENCE=DEATH.

Hundreds of THOUSANDS of deaths from hep C every year. More than AIDS these days–and killing my friends with HIV faster too.

Vitamin D and hepatitis C

More Vitamin D news, as reported on the information website
http://www.hivandhepatitis.com/2010_conference/easl/docs/0518_2010_b.html :

Vitamin D supplementation increased the likelihood of sustained response to pegylated interferon plus ribavirin therapy for chronic hepatitis C, leading researchers to suggest that vitamin D deficiency may help explain well-known racial/ethnic disparities in treatment response, according to a presentation at the 45th Annual Meeting of the European Association for the Study of the Liver (EASL 2010) last month in Vienna. A recently published related study found that low vitamin D levels were associated with more severe liver fibrosis and poor treatment response.

In recent years, we have been much impressed by the flood of new research on Vitamin D’s health benefits. And it’s particularly interesting that many researchers are now focusing on Vitamin D deficiency as a contributing factor in racial/ethnic disparities in the rates of cardiovascular disease or, as here, in response to treatment for liver disease.

See further information about Vitamin D and cardiovascular health on this Blog, or in the NYBC entries under Vitamin D3 at
http://nybcsecure.org/index.php?cPath=25&sort=3a&page=2

Quercetin: New Study Suggests Its Potential for Hepatitis C Treatment

Quercetin has been available as a dietary supplement for decades. This plant-derived compound can be found in various foods, such as onions, apples, red wine, grapefruit juice, orange juice, pomegranate juice, as well as white, green and black teas. It is an antioxidant and has been shown to inhibit the oxidation of LDL cholesterol (the so-called “bad cholesterol”)–thus checking one of the primary processes implicated in the development of cardiovascular disease. It has also been investigated as a support for respiratory function.

But what excited us recently were reports about the potential of Quercetin to thwart the hepatitis C virus, and so perhaps provide a new, less toxic way of combating this debilitating disease that affects an estimated 270 to 320 million people worldwide. While there are currently approved treatments for hepatitis C (ribavirin and interferon), they can have significant side effects, and are not always effective. The recent Quercetin research, published in 2010, finds that this plant-derived compound may inhibit hepatitis C replication in a novel way, targeting cellular proteins rather than viral proteins. Clinical trials with Quercetin are now planned, and will focus especially on a type of hepatitis C that is least susceptible to successful treatment by the current medications. We will certainly stay tuned for more news on this topic!

NOTE: NYBC stocks Quercetin 500mg/100 and Quercetin 500mg/200

Reference:

Samuel W. French, et al. The heat shock protein inhibitor Quercetin attenuates hepatitis C virus production. Hepatology, Volume 50 Issue 6, Pages 1756 – 1764.

Instead of Overly Restrictive Rules, Can We Please Have More Useful Research and Education on Supplements from our Federal Agencies?

The New York Buyers’ Club Co-Op’s Treatment Director advocates for more useful research on supplements from the federal government, and shares his long expertise and personal experience in managing liver health with supplements:

Instead of Overly Restrictive Rules, Can We Please Have More Useful Research and Education on Supplements from our Federal Agencies?

The Food and Drug Administration (FDA) recently released a proposed new rule, which many believe could unnecessarily restrict consumer access to supplements introduced after 1994. (Access to supplements on the market before 1994 is generally protected by the Dietary Supplements Health and Education Act, passed that year.)

Perhaps the greatest concern is the form of vitamin B6 known as pyridoxal- 5′-phosphate or P5P. (Used for example, in the MAC-Pack, NYBC’s low-cost alternative to the K-PAX multivitamin/antioxidant combination for people with HIV.) There has been a concerted effort by pharmaceutical companies over the years to turn this vitamin into a drug, thus restricting access to it, and likely raising the price.

Overall, it is unclear what benefit the proposed new FDA rule would have for supplement users—if any. Certainly we believe there is much the FDA can do for consumers, including a robust program to test supplements for identity, potency and purity and broadcast the results quickly and widely. And, turning to the major health research agency of the federal government, we would welcome the National Institutes of Health (NIH) conducting more clinical trials to assess benefits and limitations of supplements. This type of research can answer important clinical questions and truly help consumers.

I am living with hepatitis C and without health insurance, and have relied on diet, lifestyle changes and supplements—identified through years of personal research–to normalize my liver enzymes, slow disease progression and keep my viral load fairly low while I try to enroll in a clinical trial. * Why can’t our federal agencies promote more research on supplement combinations like the ones I have used and circulate useful knowledge about the results, rather than wasting resources on restricting access to widely used supplements like the form of vitamin B6 mentioned above?

George Carter

*You can find a pocket guide to my recommendations for using supplements for liver health in NYBC’s Summer 2010 Supplement Special Issue, 50+ Ways to Love Your Liver.

You can also find a library of other useful guides to using supplements to maintainn and improve your health at NYBC’s SUPPLEMENT Archive Page:

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