Dallas Buyers Club (the Movie) Meets New York Buyers’ Club (the Reality)

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!).

dbcMeanwhile 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 meds
 have 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!

supplement-header-2014
This article from the Spring 2014 edition of SUPPLEMENT: Newsletter of the New York Buyers’ Club, available for download at http://www.NewYorkBuyersClub.org

 

References:
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

We be JAMA! Report: Multivitamin + selenium slows progression of early-stage HIV

We’re tempted to file this story under the heading of “news that we already knew,” but it’s still good to get a stamp of approval in the form of publication in Journal of the American Medical Association (JAMA), one of the top medical journals in the U.S., if not the world.

At NYBC and at our predecessor DAAIR we have long recognized the development of vitamin and mineral deficiencies in HIV, and have long recommended multivitamin/mineral supplements to counter those health-threatening deficiencies. We have also followed for years the work of Marianna Baum, lead author of the JAMA study, who has focused attention on the mineral selenium, which may have an important role in preventing replication of HIV. So, while this story doesn’t come as a complete surprise, it’s great to have further support for some long-held practices.

The combination of a daily multivitamin
plus the mineral selenium

proved to be an effective regimen,
cutting by about half

the risk of reaching the point
where ARV therapy would be recommended

Baum’s study was conducted in Botswana, where nearly one in four adults is infected with HIV. The trial followed about 900 newly infected adults who were not yet taking any HIV medications. These participants were divided into groups that randomly received different combinations of vitamins, the mineral selenium, or a placebo. Over the study’s two-year period, the combination of a daily multivitamin plus the mineral selenium proved to be the effective regimen, cuting by about half the risk of reaching the point where ARV therapy would be recommended in Botswana (CD4 count of 200-250).

Baum’s findings are especially relevant for early-stage HIV infection, where the multivitamin + selenium combination proved its value in cutting risk of progression, and actually decreased the likelihood that participants would reach the point where antiretroviral meds would be recommended. Other research, such as Dr. Jon Kaiser’s study of a multivitamin + antioxidants, has been directed at those who are using antiretroviral meds, and may have developed some symptoms or side effects such as peripheral neuropathy. Kaiser’s finding that the multivitamin + antioxidants combination could increase CD4 counts led to the development of K-PAX, and also motivated NYBC to offer its MAC Pack, a close equivalent of K-PAX, assembled from hand-picked products from NYBC’s catalog.

Taken together, the Baum and Kaiser studies suggest to us the value of long-term supplementation strategies that can slow progression of HIV, oppose the known, damaging deficiencies that are likely to develop with HIV, and help stabilize and even improve health for people with HIV, whether they are taking antiretroviral meds or not.

 

If you’d like to get started with NYBC’s MAC-Pack, or if you’d like to find a multivitamin + selenium combination,
please visit our website. You can also call our toll-free number at (800) 650-4983
for further information and advice about supplement strategies for HIV.

supplement-header-2014
This article from the Spring 2014 edition of SUPPLEMENT: Newsletter of the New York Buyers’ Club, available for download at http://www.NewYorkBuyersClub.org

 

References:

Baum, M. et al. Effect of Micronutrient Supplementation on Disease Progression in Asymptomatic, Antiretroviral-Naive, HIV-Infected Adults in Botswana: : A Randomized Clinical Trial. JAMA. 2013;310(20):2154-2163. doi:10.1001/jama.2013.280923. 

Kaiser, J. Micronutrient Supplementation Increases CD4 Count in HIV-infected Individuals on Highly Active Antiretroviral Therapy: A Prospective, Double-Blinded, Placebo-Controlled Trial. Kaiser JK, et al. JAIDS 2006;42[5]: 523-528.

 

Taking Vitamin D3 supplements for more than 3 years linked to lower mortality

We’ve heard a lot about Vitamin D in the past few years. There have been studies linking low Vitamin D levels to a host of health issues, from heightened risk of cardiovascular disease, to higher probability of developing the flu, especially during the winter season, when you get less exposure to the sunshine that allows the body to produce its own supply of the vitamin.

Now here’s an interesting meta-analysis (=review of previously published research) that looks at the connection between long-term use of Vitamin D3 supplements (“long-term” defined, in this case, as more than three years). Reviewing data from 42 earlier trials, this investigation found that those who supplemented with Vitamin D for longer than three years had a significant reduction in mortality. Specifically, this research found that the following groups showed a lower risk of death when supplementing with Vitamin D over a period longer than three years: women, people under the age of 80, those taking a daily dose of 800IU or less of Vitamin D, and those participants with vitamin D insufficiency (defined as a baseline 25-hydroxyvitamin D level less than 50 nmol/L).

Here’s the conclusion reached by the researchers:

The data suggest that supplementation of vitamin D is effective in preventing overall mortality in a long-term treatment, whereas it is not significantly effective in a treatment duration shorter than 3 years. Future studies are needed to identify the efficacy of vitamin D on specific mortality, such as cancer and cardiovascular disease mortality in a long-term treatment duration.

Our comment: We’re not surprised that supplementing over a period of years proves, in this review, to be more beneficial than briefer periods of supplementing. Vitamin D, like many supplements, shouldn’t be seen as treatment for an acute condition. It doesn’t act like an antibiotic, which may clear up an infection with a couple weeks of treatment. Instead, think of the body as having a long-term, continual need for Vitamin D; and note as well that seasonal change, or a particular health status (for example, being HIV+), may lead to deficiency and thus increase your need for supplementing. We were somewhat surprised to see that a significantly lowered risk of mortality was found even with a moderate rate of supplementation (800 IU daily dose). On this Blog you can read about other research that links decreased risk of flu, for example, with a daily Vitamin D dose of 2000IU. At any rate, there are no known “adverse events” at either of these doses of the vitamin, so not to worry, whether you’re following the lower or a higher recommendation.

See the NYBC catalog for Vitamin D3 offerings:

http://nybcsecure.org/index.php?cPath=25

Reference:
Zheng Y, et al. Meta-analysis of long-term vitamin D supplementation on overall mortality. PLoS One. 2013 Dec 3;8(12):e82109. doi: 10.1371/journal.pone.0082109.

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.

Why Vitamins B12 and D3 Are Especially Important to People with HIV

Our friends at the Canadian AIDS Treatment Information Exchange (CATIE), a Canadian government-supported education and prevention organization, recently published an excellent guide to managing HIV medication side effects. This online guide covers the territory from body shape changes, to gastrointestinal disorders, to neurological effects, to emotional wellness, to fatigue, to sexual difficulties.

The Appendix to this guide focuses on two vitamins, both of which have been highlighted as especially important for people with HIV: B12 and D3. Deficiency of these two vitamins appears to be common among people with HIV, and supplementing to correct the deficiency can bring about major improvements in health. So it’s definitely worthwhile to check your B12 and D3 status, and, if you’re deficient, find a good supplementation strategy. Note that NYBC stocks both of these inexpensive vitamins: the methylcobalamin form of Vitamin B12 recommended below; and several strengths of Vitamin D3, including the commonly recommended D3 – 2500IU format.

Below are the CATIE recommendations:

Vitamin B12

A number of studies have shown that vitamin B12 is deficient in a large percentage of people with HIV, and the deficiency can begin early in the disease. Vitamin B12 deficiency can result in neurologic symptoms — for example, numbness, tingling and loss of dexterity — and the deterioration of mental function, which causes symptoms such as foggy thinking, memory loss, confusion, disorientation, depression, irrational anger and paranoia. Deficiency can also cause anemia. (See the section on Fatigue for more discussion of anemia.) It has also been linked to lower production of the hormone melatonin, which can affect the wake-sleep cycle.

If you have developed any of the emotional or mental symptoms mentioned above, especially combined with chronic fatigue, vitamin B12 deficiency could be contributing. This is especially true if you also have other symptoms that this deficiency can cause, including neuropathy, weakness and difficulty with balance or walking. On the other hand, these symptoms can also be associated with HIV itself, with hypothyroidism or advanced cases of syphilis called neurosyphilis. A thorough workup for all potential diagnoses is key to determining the cause.

Research at Yale University has shown that the standard blood test for vitamin B12 deficiency is not always reliable. Some people who appear to have “normal” blood levels are actually deficient, and could potentially benefit from supplementation.

The dose of vitamin B12 required varies from individual to individual and working with a doctor or naturopathic doctor to determine the correct dose is recommended. Vitamin B12 can be taken orally, by nasal gel or by injection. The best way to take it depends on the underlying cause of the deficiency, so it’s important to be properly assessed before starting supplements. For oral therapy, a typical recommendation is 1,000 to 2,000 mcg daily.

One way to know if supplementation can help you is to do a trial run of vitamin B12 supplementation for at least six to eight weeks. If you are using pills or sublingual lozenges, the most useful form of vitamin B12 is methylcobalamin. Talk to your doctor before starting any new supplement to make sure it is safe for you.

Some people will see improvements after a few days of taking vitamin B12 and may do well taking it in a tablet or lozenge that goes under the tongue. Others will need several months to see results and may need nasal gel or injections for the best improvements. For many people, supplementation has been a very important part of an approach to resolving mental and emotional problems.

Vitamin D

Some studies show that vitamin D deficiency, and often quite severe deficiency, is a common problem in people with HIV. Vitamin D is intimately linked with calcium levels, and deficiency has been linked to a number of health problems, including bone problems, depression, sleep problems, peripheral neuropathy, joint and muscle pain and muscle weakness. It is worth noting that in many of these cases there is a link between vitamin D and the health condition, but it is not certain that a lack of vitamin D causes the health problem.

A blood test can determine whether or not you are deficient in vitamin D. If you are taking vitamin D, the test will show whether you are taking a proper dose for health, while avoiding any risk of taking an amount that could be toxic (although research has shown that toxicity is highly unlikely, even in doses up to 10,000 IU daily when done under medical supervision). The cost of the test may not be covered by all provincial or territorial healthcare plans or may be covered only in certain situations. Check with your doctor for availability in your region.

The best test for vitamin D is the 25-hydroxyvitamin D blood test. There is some debate about the best levels of vitamin D, but most experts believe that the minimum value for health is between 50 and 75 nmol/l. Many people use supplements to boost their levels to more than 100 nmol/l.

While sunlight and fortified foods are two possible sources of vitamin D, the surest way to get adequate levels of this vitamin is by taking a supplement. The best dose to take depends on the person. A daily dose of 1,000 to 2,000 IU is common, but your doctor may recommend a lower or higher dose for you, depending on the level of vitamin D in your blood and any health conditions you might have. People should not take more than 4,000 IU per day without letting their doctor know. Look for the D3 form of the vitamin rather than the D2 form. Vitamin D3 is the active form of the vitamin and there is some evidence that people with HIV have difficulty converting vitamin D2 to vitamin D3. Historically, vitamin D3 supplements are less commonly associated with reports of toxicity than the D2 form.

It is best to do a baseline test so you know your initial level of vitamin D. Then, have regular follow-up tests to see if supplementation has gotten you to an optimal level and that you are not taking too much. Regular testing is the only way to be sure you attain — and then maintain — the optimal level for health.

With proper supplementation, problems caused by vitamin D deficiency can usually be efficiently reversed.

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/

New study in Journal of the American Medical Association shows that a multivitamin + selenium slows progression of HIV

The Journal of the American Medical Association has published a new study showing that a multivitamin and selenium combination supplement significantly reduced immune decline and morbidity in people with HIV who were treatment naïve (=not on antiretroviral/ARV therapy). This was a two year study with individuals who had CD4 counts above the recommended threshold for beginning ARV treatment. Over the two-year period, the combination of a daily multivitamin plus the mineral selenium cut by about half the risk of reaching the point where ARV therapy would be recommended (CD4 count of 200-250).

This study shows the importance of daily multivitamin + selenium supplementation for HIV+ people who are recently infected and/or have relatively high CD4 counts. It also provides further confirmation of the value of multivitamin, multimineral supplement strategies like the one included in the NYBC MAC-Pack.