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

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Gut Microbiome in HIV

A recent article, technical as usual, looked at the kinds of bacteria found in the intestines of people living with HIV vs those uninfected (and included one long-term non-progressor who has lived 21 years without treatment and no progression). What they found was described beautifully in this post with embedded video.

The idea presented was that perhaps we can help reduce bodywide inflammation by establishing a more healthy bacterial profile in the gut. An idea we have been talking about for decades!! And indeed, this is why we have proposed the use of agents like glutamine (which help the cells lining the gut called villi to turnover), along with probiotics and prebiotics (fiber and/or beta glucans). These are rather blunt tools but do seem to help improve gut function. We do have some data on the use of probiotics in the management of HIV-related diarrhea and for bacterial vaginosis (and our sister organization, FIAR, is working on a meta-analysis on those data). While these kinds of interventions have some benefit, ultimately, understanding what one’s ideal “microbiome fingerprint” is — what is the balance of different types of bacteria that colonize your gut under uninfected conditions — and figuring out how to replace that may provide a substantial improvement in clinical condition, dramatically reducing bodywide inflammation that may persist even under conditions of antiviral suppression.

See the NYBC website for more information on PROBIOTICS

 

Probiotics Conference Report

Below is a report on a recent conference on one of our favorite categories of supplement–PROBIOTICS.
We aren’t surprised that prestigious scientific organizations like the New York Academy of Sciences devote their resources to spreading the word about Probiotics. Over the last 100 years, these “friendly bacteria” have been the subject of an enormous amount of scientific study, confirming their crucial role in maintaining the human body’s immune system. And we also know that many NYBC members over the years have benefited from use of Probiotics such as the Jarrodophilus line from Jarrow, or Florastor (Saccharomyces boulardii). For a full list of these Probiotics, with indications for their use and dosing recommendations, see the NYBC catalog at PROBIOTICS AT NYBC

Report on
Probiotics, Prebiotics, and the Host Microbiome:
The Science of Translation
Wednesday, June 12, 2013 | 7:45 AM – 6:00 PM
/The New York Academy of Sciences
George M. Carter

This was a day-long series of discussions, with nearly 70 posters that brought together a variety of researchers, clinicians and, of course, pharma reps sniffing around for profits.  And all about the horrors of–BACTERIA! Of course, some bacteria cause disease…but most of them not only don’t, but we need them to live. And there are indeed a lot of them!

These good ones, when they are found in the diet or as a supplement, are known as probiotics, such as acidophilus or bifidobacteria. They are found, for example, in yogurt or other fermented foods. Prebiotics, on the other hand, are substances that help to facilitate the growth of those good bacteria, but are otherwise non-digestible. They include fiber (soluble or insoluble) and agents such as beta glucans, inulin and oligosaccharides.

There seemed to be a general feeling of anticipation as our knowledge grows about the microbes we share—and depend upon for our survival. Various populations of microbes live in distinct communities on and in our bodies. Each bacterium has its own set of DNA, just like each of our human cells (except cells like platelets and red blood cells). All of our human cell  DNA contributes about 25,000 genes. By contrast, if you add up all the “bugs” in and on our bodies, that figure runs into the MILLIONS of genes, recent estimates placing the number at about 8 million. And if you removed all the microbes from your body, aside from killing you, that entire amount of bacteria would weigh up to 3 pounds!

That collection of microbes and their genes and gene-products are known as the microbiome.  This is a complex system of various species of bacteria that interact with the host (us) and other bacteria. They tend to form ecologies at various sites so that the crew found in your nostrils may not be the same as that found in the gut, the vagina, or on the skin, for example. And the patterns of bugs that colonize us are different from person to person to some degree—and even change over the course of a lifetime.

These various types of bacteria are categorized by their taxonomy. Taxa refers to the genus, species and strain of the bacteria; for example, you may have heard of Lactobacillus acidophilus, often found in enriched yogurts. “Lactobacillus” is the genus name and “acidophilus” is the species. These also may be divided into further subtypes known as strains, so one strain is L. acidophilus L1, used to feed cattle to reduce the amount of bad bacteria such as E. coli O157:H7.

And these bacteria are necessary for our survival. They perform a huge number of functions, including producing some vitamins, training our immune systems, blocking bad bacteria from growing, and even altering our moods. They communicate within and between species of bacteria, as well as with our body. Some of them may cause trouble, including Helicobacter pylori (ulcers) and Clostridia difficile (colitis). How best to treat a dysbiosis (=microbial imbalance on or inside the body)  is evolving as we increase our understanding of the relationships and ecologies of these bacterial communities.

The alterations in the nature of these communities arise from the time we are born. If one is born by a Caesarean, one tends to get more of the microbes of the mother’s skin as opposed to the vaginal microbial system that the infant collects during a vaginal birth. Whether this has any longer term clinical impact remains unclear, though some evidence suggests that those born by Caesarean may be at higher risk of allergies or asthma. The microbiota tend to establish themselves as a more adult phenotype by the tender age of 2 or 3.  Some researchers are developing models that look at similarities in the patterns of the microbes such that people are divided into 2 or 3 enterotypes.Although this attempt at classification is still evolving, it may help us see how an individual’s response to or problems with host bacteria can be understood and managed.

Indeed, some of the sessions focused on new discoveries of particular bacteria that appear to be associated with protection from certain diseases, or may be implicated in causing disease. One group discussed their findings of a putative association of Akkermansia muciniphilia with the development of diabetes, while others focused on patterns of the microbiome that might underscore a potential for obesity. Many of the sessions were devoted to research in mice, which was moderately interesting from an academic perspective. Others looked at the inter-relationship between probiotics and brain function as well as “gut feelings” (the gut containing what some have dubbed a second brain’s worth of neuronal innervation).

This raised some  issues abouthow to study these agents in the context of a Food and Drug Administration that is at the least bureaucratically hostile to the study of dietary supplements and currently forbids them to be marketed as preventing, curing or mitigating diseases. Discussion was devoted to these challenges, but I think it failed to get to the heart of the matter, namely, that we need—VERY carefully[1]—to address how to create rulemaking with regard to Investigational New Drug requirements that does not require an absurd level of documentation of safety for products ALREADY on the market and in widespread use!

Other studies in humans can avoid the onerous process of acquiring an IND by using a primary endpoint (what the study seeks to establish) that is more in line with either the supplement’s use as a “medical food” (a very narrow definition), or that seeks to improve outcomes to structure or function of the body (the currently allowed dietary supplement claim).

The frightening prospect, to me, was the pharma reps sniffing around, no doubt seeing how they can “capitalize” on and/or patent products to extract huge profits. The notion of “public-private” partnerships in this arena gives me the horrors as it usually means taking away access except for the wealthy. We’re talking about products found in yogurt that have been used for millennia!

Still, the day also had a couple of remarkable and straightforward studies. The most exciting was the work of a group who helped women in various nations in Africa to produce their own probiotics and yogurt. This had the added advantage of creating an economic opportunity for the women, increasing respect from male householders as they brought in income while also improving health outcomes. This was augmented even more by the addition of a powder of the dried leaves of Moringa, a plant that grows like a weed from South America, throughout Africa, South and Southeast Asia, and which has a good array of micronutrient vitamins and minerals. Not in huge amounts, but fairly comprehensive.

A speaker from Scotland, Mr. Burns, also discussed the kind of “grassroots” organizing that they undertook in Scottish hospitals to translate research into the public health sphere. The point of this exhilarating talk was how to get from the bench to the bedside—in short, he was promoting a very comprehensive strategy for creating awareness among physicians and others, working with district leaders and hospital administrators. Their efforts got them, for example, to adhere more closely to checklists for surgeries and pneumonia management. By requiring and getting more attention to these matters, they were able to successfully, and dramatically, drop death rates. Some of these programs have run now for over 10 years, and involve getting physicians and others to prescribe probiotics or prebiotics and  actually use them in preventing C. diff. or better management of bacterial vaginosis,or management of HIV-related diarrhea!

It was a day packed with information and interesting people. I attended with Dr. Henry Sacks of Mount Sinai School of Medicine, with whom I have been working on a grant from the National Institutes of Health to undertake meta-analyses of various questions relating to the use of Complementary and Alternative Medicine (CAM) approaches to managing HIV disease and ARV side effects. We are finishing up work on our first two questions, the use of a multivitamin/mineral among HIV+ people, and the management of peripheral neuropathy with Cannabis sativa. Our next question, which we are now beginning to work on, is the use of probiotics!

For more information, abstracts and so forth, please visit the NYAS website.

______

Footnote:
[1]  Any changes in IND rulemaking should be careful to avoid opening the floodgates to drug companies using such changes to weaken safety or oversight of new drugs, of course. Accelerated approval has been abused by the companies to push more drugs more rapidly onto the market that are NOT medically superior or addressing a desperate need as antiretroviral drugs were in the mid-90s.

Probiotics found effective for antibiotic-related diarrhea

A recent review article that pooled findings from more than 11,000 patients concluded that probiotics were effective for preventing and treating antibiotic-associated diarrhea. About 30% of people treated with a course of antibiotics develop diarrhea, so this is a significant medical issue. Types of probiotics reviewed include Lactobacillus and Saccharomyces boulardii; both were found effective. See NYBC’s entries under Probiotics for details on how to use.

Reference: Hempel S, et al “Probiotics for the prevention and treatment of antibiotic-associated diarrhea: a systematic review and meta-analysis” Journal of the American Medical Association 2012; 307: 1959-1969

NYBC’s BrainPower Multi-Pak – low-cost “Ultramind Solution”

NYBC’s Low-Cost Alternative to the Pricey “Ultramind Solution”

The UltraMind Solution by Dr. Mark Hyman is one of many recent books that attempt to translate the piles of research from the last few decades about nutrition and brain function into useful guidelines for improving and maintaining good mental functioning and psychological well-being.

The Ultramind Solution contends that changing your diet–your “nutritional intake”–can often make a huge difference with conditions like depression, memory impairment, or “brain fog.” Dr. Hyman’s recommendations focus both on weeding out elements that harm the system (too much sugar, poorly chosen carbs, alcohol, cigarettes), and sticking to a menu of what’s good, especially what’s good for brain function: 1) omega fatty acids (found in salmon, sardines, flaxseed); 2) amino acid sources (nuts, lean meats); 3) high-quality carbs (for example, beans, peas, and lentils); 4) phyto-nutrients (plant foods containing antioxidants and other helpful substances, like blueberries, cilantro, etc.).

Finally, Dr. Hyman observes that, since more than 90% of Americans don’t get adequate nutrients from food (a finding from an often-cited US government survey), many people realistically will need to supplement in several key categories: 1) a multivitamin; 2) fish oil (omega fatty acids); 3) Calcium/Magnesium; 3) Vitamin D; 4) B complex vitamins; 5) probiotics (for good absorption of nutrients).

And yes, you can even go to the ”Ultramind” online store, where you can purchase a kit containing these supplements. The problem is that, at $121.50 for a month’s supply, this package is way overpriced. But never fear—NYBC, as a nonprofit supplements co-op, can offer an alternative that’s a close equivalent (or slightly better), but at only $90 for a month’s supply ($80 if you sign up for a $5 minimum annual membership in the co-op).

Here’s NYBC’s BrainPower Multi-Pak:

    Multivitamin: Added Protection without Iron (Douglas)
    Fish oil: Max DHA (Jarrow)
    Calcium/magnesium/Vitamin D: Ultra Bone Up (Jarrow)
    B: Methyl B-12 (other B vitamins included in the multi)
    Probiotic: Ultra Jarrodophilus

By the way, you can purchase any of these items individually at NYBC if you like. Again–at lower prices than in the “Ultramind” store.

Supplements for Diarrhea and Malabsorption

We’re reprinting below the NYBC recommendations
for supplements that address the common gastrointestinal
problems of people with HIV:

Diarrhea. This is one of
the most common side effects of
antiretroviral drugs–especially protease
inhibitors. When it occurs, make
sure to drink plenty of (healthy) fluids
to replace electrolytes (potassium,
sodium, and magnesium ions) and
prevent dehydration. Avoid sugary
and/or caffeinated beverages.
One of the simplest remedies: bananas!
Adding a yogurt with active
cultures to your regular diet can also
improve diarrhea. In addition to adding
beneficial flora to your gastrointestinal
tract, yogurt is nutritionally
rich in protein, calcium, riboflavin,
vitamin B6 and vitamin B12.

However, for some, dietary changes may
not be enough to control the diarrhea
Supplements to consider in treating
diarrhea associated with protease
inhibitors include calcium, and glutamine
(up to 20-40 grams daily for
diarrhea while it persists). There are
some clinical data to support these
interventions. A note of caution: calcium
carbonate works fine but should
be avoided if you are using atazanavir
[Reyataz].

If diarrhea is associated with the use
of antibiotics, go probiotic! Use acidophilus,
bifidus or Saccharomyces
boulardii
(Florastor) to control C.
difficile (a problem frequently encountered
with antibiotic use) and to improve gut function.
Use of digestive enzymes may also help to improve
digestion (e.g., lipase, protease, amylase, and
lactase).

Malabsorption is the difficulty in digesting or
absorbing nutrients from food. It’s a widespread
problem among HIVers, and a serious
one at that. HIV disease damages the
guts, where it is estimated that 80%
of the disease “lives,” hindering the
digestive tract’s ability to absorb nutrients
(or meds). Additionally, many
HIVers actually have too little acid
in their stomachs – a little-discussed
condition. This can cause the sphincter
at the opening of the stomach to
fail to close properly, resulting in
GERD: gastro-esophageal reflux disorder.
In general, gut function can be
improved with probiotics such as
acidophilus and bifidus, as well as
2-5 grams of glutamine, taken daily.
Further, digestive enzymes that help
break down fats, carbs and proteins
may be useful in promoting better
absorption. Again, a good diet and
a potent multi are important starting
points!

See the NYBC entries for more detailed
recommendations regarding these supplements:

Glutamine Powder:
http://nybcsecure.org/product_info.php?cPath=49&products_id=128
or Glutamine Caps:
http://nybcsecure.org/product_info.php?cPath=49&products_id=127

Douglas Vegetarian Enzymes:
http://nybcsecure.org/product_info.php?cPath=49&products_id=264
Jarro-Zymes Vegetarian Enzymes:
http://nybcsecure.org/product_info.php?cPath=49&products_id=335

Ultra Jarro-Dophilus (probiotic):
http://nybcsecure.org/product_info.php?cPath=27&products_id=354
Jarrodophilus EPS (No refrigeration needed):
http://nybcsecure.org/product_info.php?cPath=27&products_id=199
Saccharomyces boulardii (Florastor):
http://nybcsecure.org/product_info.php?products_id=217

Nelson Vergel: “Survivor Wisdom”

A Talk by Nelson Vergel: “Survivor Wisdom: Advances in Managing Side Effects, Living Well, and Aging with HIV” – New York City, November 9, 2010

How could you not be impressed by the schedule HIV treatment activist Nelson Vergel keeps? A few days before he arrived in New York to share his “Survivor Wisdom” with New York Buyers’ Club members and guests, he was an invited participant at the 12th International Workshop on Adverse Drug Reactions and Co-morbidities in HIV in London. The founder and moderator of the “pozhealth” group on Yahoo—the largest online discussion group for HIV issues–Nelson also finds time to answer questions on a forum hosted by thebody.com. In addition, he serves as a community member of the federal government’s Department of Health and Human Services HIV treatment guidelines advisory board. And did we mention that he’s the author of a new book, “Testosterone: A Man’s Guide,” especially useful for people with HIV who are considering testosterone therapy to address fatigue and other problems?

As you might expect, Nelson also covered a lot of territory in his NYBC talk, which was co-hosted by the City University of New York’s Graduate Center. He briefly updated the audience on new treatments and guidelines, then reviewed the exceptional case of the HIV+ “Berlin patient,” whose apparent cure following a bone marrow transplant has opened up, at least tentatively, some new lines of research about curing HIV.

Most of Nelson’s talk, however, dealt with familiar issues in managing HIV symptoms and medication side effects: cardiovascular health challenges, lipoatrophy (facial wasting especially) and body fat accumulation (lipohypertrophy), aging with strong bones, fighting off fatigue, minimizing the risk of anal cancer.

Amid this discussion of symptoms and side effects, Nelson spent time on the topic of supplements. His first point, which NYBC would certainly agree with, is that a lot of good evidence has accumulated about the benefit of multivitamin supplementation, and a multivitamin plus antioxidant combination, for people with HIV. These “micronutrients,” as they’re called in the scientific literature, can enhance survival, delay progression of disease in people not yet on HIV meds, and increase CD4 counts in people taking the meds. We have to admit we were pleased when Nelson also took a moment to praise NYBC (and especially our Treatment Director George Carter) for making available an inexpensive, “close equivalent” of the multivitamin/ antioxidant combination that was the subject of Dr. Jon Kaiser’s well-known research and that led to the development and marketing of K-PAX. New York State residents, as Nelson pointed out, have access to many such supplements through formularies. But for residents of other states, this half-price version of the multivitamin/antioxidant combination (MAC-Pack or Opti-MAC-Pack) can provide welcome relief in the budgetary department.

Our speaker then ran through a list of about a dozen supplements that have reasonably good evidence to support their use by people with HIV. He chose to focus more closely, however, on just a few:

Niacin. Despite “flushing” that makes it difficult for some to use, niacin can be very effective in bringing up levels of HDL (“good”) cholesterol in people with HIV. Since cholesterol control is a major long-term health issue for many people on HIV meds, and since recent research suggests that raising HDL cholesterol levels may be an extremely important factor in reducing cardiovascular risk, niacin may be a top choice for many. (Fish oils/omega-3 fatty acids, plant sterols, pantethine, carnitine, and CoQ10 are other supplements that NYBC and many others put in the category of “supports cardiovascular health.”)

Vitamin D. Seems that, even at the London conference Nelson had just attended, the “sunshine vitamin” was a hot topic. Partly that’s because people with HIV have recently been found to have a high prevalence of Vitamin D deficiency, and then because Vitamin D, calcium and other mineral supplementation is a logical approach to addressing long-term challenges to bone health in people taking HIV meds. (Look on the NYBC blog for a whole host of other recent studies about Vitamin D’s potential benefits, from reducing cardiovascular risk to cancer prevention—even as a way of warding off colds and flu.)

Carnitine. This is a supplement, Nelson told the audience, that he’s taken for many years. Reported/perceived benefits: to improve fatigue, lipids, brain function and neuropathy. (NYBC Treatment Director George Carter put in that “acetyl-carnitine”—a form of the supplement that crosses the blood/brain barrier–has shown the most promise for dealing with neuropathy.)

Probiotics. The vulnerability of the gut in HIV infection, and the well-documented problems people with HIV experience in absorbing nutrients, make probiotics a very helpful class of supplements for long-term health maintenance. (Probiotics, good or “friendly” bacteria residing in the gut, are available in a variety of products, from yogurt to supplements. There’s quite a bit of research about the effectiveness of different varieties, and note as well that there are some newer formats that don’t require refrigeration.)

Above and beyond the treatment issues involving supplements, meds, and other strategies, Nelson referred several times to areas where there’s a need for advocacy. He mentioned the cure project, for one, but also a national watch list to help people follow and respond to the devastation created by recent funding cuts and the resultant waiting lists in the ADAP programs of many states, such as Florida.

All in all, NYBC members and guests would doubtless agree: a very thought-provoking presentation, with much helpful information to take away. For more on these and other issues, be sure to check out the NYBC website at:

http://www.newyorkbuyersclub.org/

[A version of this article also appears in NYBC’s free e-newsletter, THE SUPPLEMENT, along with additional reporting on a new Mayo Clinic guide to supplements, and a look at the current state of regulation and research on supplements in the US.]