Movie preview: Dallas Buyers Club

Dallas Buyers Club
Image Credit: Anne Marie Fox/Focus Features
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Last night we had the chance to preview the astonishing and inspiring new movie, Dallas Buyers Club, starring Matthew McConaughey and Jared Leto. It’s the story of Ron Woodroof, a Texas rodeo rider and electrician who tested positive in 1986, and went on to fight the medical establishment and pharmaceutical companies, searching for alternative treatments throughout the world and setting up a buyers’ club to make these alternatives available to others with HIV/AIDS.

We were astonished by the movie because, having labored for a decade (or two decades, for some of us at NYBC) in the field of buyers’ clubs for people with HIV, we weren’t prepared to think of our work as material for a Hollywood production. If you looked at the NYBC probiotics that have helped people keep their digestive systems functioning thru years of taking HIV meds, or the MAC-Pack that has helped HIV+ people keep up CD4 counts, or supplements that have helped support liver function–it didn’t all add up, in our minds, to a Hollywood movie starring Matthew McConaughey!

We do want to give credit to the movie’s creators for doing an excellent job in depicting that moment, in the late 1980s and early 1990s, when people with HIV decided to fight a slow-moving, closed-minded FDA that was blocking access to alternative treatments and even to some of the early HIV meds that were becoming available elsewhere in the world.

We particularly liked the early scene in Dallas Buyers Club, when the Ron Woodroof/Matthew McConaughey character, who’s been told by a Dallas hospital doctor that he has 30 days to live, drives down to Mexico, and finds an off-the-grid AIDS clinic run by a American doctor who’s had his license revoked. At that point, Ron Woodroof looks in pretty bad shape, and the clinic doctor tells him that first of all he needs to start taking a “multivitamin with zinc, plus some essential fatty acids.” That’s the starting point for Ron’s new treatment quest, which discards the side effect-ridden AZT being pushed by Pharma and mainstream doctors, and scans the world for alternatives. (The Mexican clinic is also importing DDC, an early line HIV med from France, not approved at the time in the USA.)

There’s a lot going on in Dallas Buyers Club: the homophobic Ron Woodroof undergoes a big change of heart as he sets up the buyers’ club with help from the drag queen played by Jared Leto. At one point you’ll catch a glimpse of a TV news story about ACT-UP storming the FDA to protest the glacial pace of HIV med trials. You’ll also see a fight in a supermarket over whether to buy the typical American junk foods, or some real nutrition. And there’s quite a bit of money changing hands as the buyers’ club takes off (the Dallas Buyers Club was NOT a nonprofit, unlike NYBC!). And we should advise that some of the drugs that Ron Woodroof imported for his buyers’ club were promising starts, while others today we’d have to dismiss. In the end, though, we’ll take Dallas Buyers Club for what it’s meant to be: an inspiring tale about how buyers’ clubs brought treatment alternatives to people with HIV/AIDS, even when that quest ran against most of the conventional medical wisdom. And we’d add that while the treatments have certainly changed over the years, we at NYBC still identify with the need for treatment alternatives, and still don’t want to settle for just the conventional medical wisdom.

So—come on down and visit us at http://www.newyorkbuyersclub.org/. We do recommend that you see the movie, too, when it opens on November 1. And if you support any or all of our convictions about the importance of buyers’ clubs for people with HIV, why not make a donation to NYBC at

DONATE TO NYBC

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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

Nutrivir – No Sugar Added

Nutrivir, which NYBC has stocked since the start, is an excellent and tasty combination of nutrients in a base of vanilla-flavored whey protein concentrate. In addition to vitamins and minerals, Nutrivir contains n-acetylcysteine (NAC) and carnitine. It was formulated especially to combat wasting syndrome, which can occur in those undergoing cancer treatments, or in people with HIV/AIDS. (Wasting syndrome is defined as unintended and progressive weight loss, accompanied by weakness, fevers and nutritional deficiencies due to malabsorption.)

Here’s a bit more from the supplier of Nutrivir:

Increasing evidence suggests that abnormal metabolism of cysteine and glutathione plays a decisive role in loss of muscle and immune dysfunction associated with [wasting syndrome]. At this time, the most promising supplement for these patients is a cysteine derivative known as N-acetyl cysteine (NAC). NutriVir [supplies]… quantities of NAC and other antioxidants that have been shown in clinical trials to be effective in combating wasting, malabsorption and diarrhea associated with cancer and AIDS.

Read more details at the NYBC entry:

Nutrivir

Multivitamin Antioxidant Combination (MAC-Pack): a K-Pax alternative available in no-iron formula for those with liver impairment

In 2007, NYBC began offering an alternative to the K-Pax multivitamin-antioxidant supplement, which was added to some ADAP and Medicaid formularies following publication in 2006 of Dr. Jon Kaiser’s study that found CD4 increases in people with HIV taking a micronutrient combination supplement. A first reason for the NYBC alternative, called the MAC-Pack, was price: for those without access to ADAP or Medicaid programs, the double strength K-Pax cost of about $140/month was rather high, and NYBC as a nonprofit co-op was able to present a close equivalent for only $62/month.

But another rationale for introducing the MAC-Pack was its flexibility. In fact, because MAC-Pack uses the AMNI/Douglas multivitamins Added Protection as its core, it can be configured as a formula with or without iron. Having the option of an iron-free MAC-Pack is important especially to people with elevated liver enzymes, liver impairment, or hepatitis co-infection. Taking iron supplements is generally not recommended for this group, since processing the iron puts an extra strain on liver function.

Also note that the MAC-Pack provides somewhat more acetylcarnitine than the K-Pax, which may not be a bad idea, especially if you believe, as we do, that acetylcarnitine is probably a key element in the multivitamin-antioxidant combination. (Two tabs/day is sufficient if you’re just interested in matching the K-Pax formula, but three/day may be better especially for those dealing with neuropathy.)

For more information, see the NYBC entry:

MAC-Pack

Supplement recommendations from Fred Walters / Houston Buyers’ Club

It was great to see an extended interview with our friend and colleague Fred Walters of the Houston Buyers Club in a recent posting on the website thebody.com.

Fred talks about his conservative Catholic background, his early vocation that took him to seminary, and his subsequent adventures as he began and nurtured the Texas-based nutritional supplements purchasing co-op for people with HIV, the Houston Buyers Club. HBC has been a beacon for so many when it comes to information about, and access to, supplements. And treatment activists that we admire a great deal, including Nelson Vergel and Lark Lands, have found a welcome forum at HBC over the years–we’re all better informed as a result.

Here’s an excerpt from the interview, in which Fred describes what he considers to be the most significant nutritional supplements for people with HIV:

I would say number one, a potent multivitamin. The top mistake people make with multivitamins is they are hypnotized by the words “one-a-day.” And there is no such thing as a potent one-a-day multivitamin for people with HIV. If you’re going to do a multivitamin you have to do several, several times a day. My favorites are Superblend by Super Nutrition and the K-Pax [KaiserPax] by Jon Kaiser [M.D., an HIV specialist in San Francisco]. Those are my two favorites. The second thing I would do is NAC, and that is a supplement that helps to increase gluthathione levels. It’s very good for the liver. The third one is fish oils, even if you don’t have high cholesterol or high triglycerides. Fish oils are real important for skin and other things in the body. They help reduce inflammation. That’s probably my biggest thing, the inflammation part. The other would be if you’re taking a high potency multivitamin you should add the selenium […]

If people are taking HIV drugs they have to take Coenzyme Q10, because what happens is that the drugs go into the body, as they’re winding their way through the cave with their guns drawn waiting to shoot at the HIV viral cells, by the time they walk up to a dead body they say, “Oh no, that wasn’t an HIV viral cell. That was a mitochondria.” And so Q10 helps to protect the mitochondria, and if you don’t protect the mitochondria in the body then you start opening yourself up to all kinds of organ and liver issues.

“Oh, how could I forget this one. […] Actually it’s getting a lot of press locally because Baylor University is studying this, but … green tea capsules. We are seeing more and more people who are doing two grams a day of green tea capsules and their T-cells are going up between 40 and 100%. Dr. Christina L. Nance is studying that at Baylor and we see that here, and today I was watching a local television show and of all days for you to call, there was a show on about food as medicine and they talked a lot about HIV, and one of the things they talked about was green tea liquid. They mentioned that it was being studied locally for HIV. So we’re not the only one on the soapbox about this. We’ve seen amazing results with that.

Read the full interview with Fred Walters at

http://www.thebody.com/content/art48991.html?mtrk=10922635

NOTE: As far as multivitamins go, NYBC has followed its predecessor DAAIR in stocking Douglas Labs multis, which are highly bioavailable (= can be easily absorbed and used by the body):

Added Protection Without Iron (a no-iron formula is recommended especially if you have elevated liver enzymes or hepatitis)

Added Protection With Iron

Ultra Preventive Beta This is a version of Added Protection that replaces the Vitamin A with beta carotene and a good mix of carotenoids–a good idea for people with any kind of liver trouble.

(NYBC also stocks the SuperNutrition multivitamins.)

Last, we have to say that a major concern for NYBC members has been the cost of supplements. That’s why in 2007 the buyers’ club began offering its MAC-Pack, which is a close equivalent of the K-PAX, but at about half price. The MAC-Pack uses the Douglas Labs Added Protection multis as its base, then adds NAC, lipoic acid, B vitamins and a substantial amount of acetylcarnitine to round out the package:

MAC-Pack (See other entries on this blog for more details.)

The Lowdown on Lipodystrophy – Nelson Vergel on “HIV Lipodystrophy: Where Are We After 10 Years?”

We’d like to recommend this article, by long-time AIDS treatment activist Nelson Vergel, which appears in the July-Dec. 2007 issue of GMHC’s Treatment News

It’s available online at

http://www.gmhc.org/health/treatment/ti/ti21_3_4.html#3

Lipodystrophy has been one of the most discussed side effects of HIV medications in the past ten years, and, as this article points out, its potentially devastating psychological effects have added urgency to the search for scientific understanding about the condition, and treatment options to address it.

This excellent summary divides the discussion into three parts:

–lipoatrophy (fat loss in the face, buttocks, arms and legs)

–lipohypertrophy (fat accumulation in specific areas of the body such as the neck, belly, upper torso, and breasts)

–lipid abnormalities (high LDL [“bad”] cholesterol and triglycerides, low HDL [“good”] cholesterol)

Nelson outlines how Zerit and AZT were especially implicated in lipoatrophy; he also sorts through the ongoing uncertainties about the origins of lipohypertrophy and lipid abnormalities in people with HIV on HAART.

This article is also very useful in reviewing the treatment options for these three conditions, including facial wasting reconstruction therapies like Sculptra (formerly Newfill) for lipoatrophy; prescription drugs for lipohypertrophy (testosterone or Metformin*); nutritional supplements like fish oil and Niacin for lipid abnormalities (these are often most successful when used along with diet and exercise programs, and can enhance the effectiveness of prescription statins).

Nelson Vergel continues to do a great service in making this kind of treatment information available to PWHIV. For more info, you can also visit the website http://www.facialwasting.org, or subscribe to the pozhealth internet HIV health discussion group by sending a blank email to pozhealth-subscribe@yahoogroups.com.

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*See additional posts on this Blog for a recommendation about supplementing with B vitamins when taking Metformin.

“HIV Lipodystrophy: Where are we after ten years?” – Nelson Vergel, in GMHC Treatment News, July-Dec. 2007

We’d like to recommend this article, by long-time AIDS treatment activist Nelson Vergel, which appears in the July-Dec. 2007 issue of GMHC’s Treatment News

It’s available online at

http://www.gmhc.org/health/treatment/ti/ti21_3_4.html#3

Lipodystrophy has been one of the most discussed side effects of HIV medications in the past ten years, and, as this article points out, its potentially devastating psychological effects have added urgency to the search for scientific understanding about the condition, and treatment options to address it.

This excellent summary divides the discussion into three parts:

–lipoatrophy (fat loss in the face, buttocks, arms and legs)

–lipohypertrophy (fat accumulation in specific areas of the body such as the neck, belly, upper torso, and breasts)

–lipid abnormalities (high LDL [“bad”] cholesterol and triglycerides, low HDL [“good”] cholesterol)

Nelson outlines how Zerit and AZT were especially implicated in lipoatrophy; he also sorts through the ongoing uncertainties about the origins of lipohypertrophy and lipid abnormalities in people with HIV on HAART.

This article is also very useful in reviewing the treatment options for these three conditions, including facial wasting reconstruction therapies like Sculptra (formerly Newfill) for lipoatrophy; prescription drugs for lipohypertrophy (testosterone or Metformin*); nutritional supplements like fish oil and Niacin for lipid abnormalities (these are often most successful when used along with diet and exercise programs, and can enhance the effectiveness of prescription statins).

Nelson Vergel continues to do a great service in making this kind of treatment information available to PWHIV. For more info, you can also visit the website http://www.facialwasting.org, or subscribe to the pozhealth internet HIV health discussion group by sending a blank email to pozhealth-subscribe@yahoogroups.com.

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*See the recent post on this Blog for a recommendation about supplementing with B vitamins when taking Metformin.