resistanceisfruitful's Open Salon Blog

Deja vu at the FDA

Mon, 14 Mar 2011 06:03:39 -0400

This feels like déjà vu.

Nearly thirty years ago I helped organize hundreds of AIDS activists to demonstrate at FDA headquarters in Silver Spring, MD, as well as organized die-ins at the agency's regional headquarters here in Kansas City, to demand faster access to experimental new drugs to fight AIDS. I doubt if any of us realized at the time how quickly we would be co-opted as unwitting tools serving the interests of the pharmaceutical industry more than ourselves.

By committing outrageous acts and civil disobedience, we gave the pharmaceutical industry even more control over what was supposed to be an independent agency serving the public good by protecting consumers against dangerous drugs. The early signs of this co-optation are obvious, in hindsight. AIDS activist leaders from ACT UP (New York) soon found themselves in lucrative positions with new pharma-backed "grassroots" organizations, such as POZ and AIDSMeds, promoting the wonders of an assembly line of new drugs developed with a single purpose in mind: changing clinical markers on relatively new laboratory tests, such as CD4 and PCR viral load, that are rarely, if ever used to evaluate the immune health of the general population. The trade off is that today, the number one cause of death of poz people are non-AIDS-defining cancers and liver failure.

Now I find myself at odds once again with that underfunded, overworked and under appreciated defender of public safety responsible for protecting Americans from dangerous drugs. Despite all of these limitations, the FDA has somehow managed to find the resources to clamp down on... vitamin C! Yes, ascorbic acid. Bottled sunshine. Probably the best studied, most researched and commonly used, plant based nutritional supplement known.

We all know the horror stories of great-grandma Jones who suffered horrific withdrawal symptoms when she was unable to get out to her local supplier of this scandalous drug, due to the blizzard last week. And who can forget our childhood nightmares of dozens of school mates who had to stay home because they had overdosed when their well-intentioned, but poorly advised parents dared to administer extra doses of this noxious drug without a prescription, or even permission from their doctor?

Yeah, I'm being caustic, because that's how I get when I see such senseless irony and hypocrisy from a Federal agency that has so much control over my personal health care choices.

Click here to read more...

What really happened to Emery Taylor?

Mon, 28 Feb 2011 21:02:05 -0500

When word first broke last week that Emery Taylor had died, the reaction from many of us who knew him was shock. Few of his friends on Facebook seemed to know what had happened.

Given Emery's public identity as a person living with a positive test result for HIV and with a diagnosis of AIDS based on his CD4 count, it was inevitable thakt people would soon start asking about the cause of his death.

Emery walked a line between two camps in the world of AIDS: that of the Orthodox, or mainstream advocates of the generally accepted theory that HIV is the sole and sufficient cause of AIDS that can be managed by a cocktail of pharmaceutical drugs, and the Dissidents, a diverse and sometimes frustratingly divisive group of people that includes factions who question almost everything about commonly held perceptions about the disease. Orthodox AIDS defenders often dismiss such skeptics outright by referring to us as "denialists".

Emery was known for his very visible and public stance defending his decision to not take antiretrovirals, despite being HIV-positive for twelve years and despite facing declining numbers of t-cells and a rising viral load. On his youtube video entitled UPDATE, posted a year ago, Emery quipped: "My t-cells are so low, pretty soon I'm gonna owe t-cells next time I go. I mean, I have 52. If my t-cells quadrupled, I would still have AIDS. That's just how low my t-cells are right now (laughing). My tcells are so low, they're almost in the negatives."

Emery came to the AIDS dissident community after finding himself feeling out of place, and even rejected by the mainstream support groups and AIDS service organizations. In his first youtube video, posted January 16, 2010, Emery says: "In the clinics, support groups and community organizations, honestly, I did not feel as I belonged because I was not on drugs, because I was not looking for just the next... piece of whatever, to get. I just felt as if I did not belong there. What I really needed was a support group of people who were just like me. You know, I'm not putting them down, because they're in their own situations, and so I'm not putting them down at all, I just felt as if I did not belong."

Emery was also a member and occasional contributor to the forums at Questioning AIDS,an online hangout for AIDS dissidents that I help moderate. His handle there was etay1207, same as his youtube channel. In one post, he relates his experience at other online forums for PWAs:

I'm constantly meeting and chatting with others who are poz. I posted this concern on poz.com and the response wasn't too friendly. Here's my issue. I see many people with "normal" CD4's and undetectable viral loads getting sick with AIDS defining illnesses and other problems that are attributed to HIV. If their problems are due to HIV, shouldn't I have their conditions so much more? Since my VL is so much higher? I have a good friend now dealing with liver issues. He is UD [has an undetectable viral load] "thanks to the meds" and his t-cells are in the 500 range "thanks to the meds". But HIV is hiding out in his liver and causing problems. Call me stupid! My viral load is 644,000% more than his. Why is my liver healthy and his is not and they are blaming it on HIV?

Emery exercised his right and his responsibility to ask some fair questions that deserve answers, yet as I review the public record he left behind, I also see enigmas. Emery signed every post at QA, for example, with a list of his counts, which showed an overall decline in CD4 cells and a steady increase in viral load over the 12 years he lived with his diagnosis. His video reports reveal an almost flippant response to the significance of what the AIDS mainstream would describe as the chief markers of typical progression of a poz man. "I am not a numbers chaser,” Emery said, “and I never live my life as a numbers chaser, so I'm not afraid of a low t-cell count, or a high viral load. Actually, I embrace it. That's just the way I live."

Emery's questions are standard fare for people, like me, who are struggling to make sense of what we observe. At the same time, despite what he told us, there is no denying that Emery was not the picture of health he wanted us all to think he was.

"I consider myself healthy," Emery reported in one of his youtube videos. "So far I haven't had any ill effect of the low white blood count. I haven't seen any ill effect of the low t-cell count either." In another video he simply states: "I have not been sick."

For those of us who knew Emery from his videos, it should come as no surprise ... click here to read the rest of the story

Pharmaceutical solutions are not enough

Wed, 29 Sep 2010 05:09:37 -0400

photo: Daily Nation

A recent phone conversation with a friend is helping me to continue to refine what I want to focus on as an AIDS dissident activist. In a passionate outburst that revealed a new side of his character, he blurted out his dismay that our society in general and our gay community in particular seems to be willing to settle for a solution to AIDS that relies exclusively on drugs from the pharmaceutical industry.

It is no secret that despite a massive marketing campaign promoting improved tolerance for and reduced adverse reactions from new drugs and dosages, sometimes researchers buck the marketing department with the alarming reality that today's AIDS drugs still cause serious health problems, including death.

For example, one such study was recently presented at the 50th Interscience Conference on Antimicrobial Agents and Chemotherapy (ICAAC).

Before even getting to the study, observe that the name of the conference combines the terms: "antimicrobial agents" and "chemotherapy". AIDS drug promoters bristle whenever someone compares ARVs (anti-retrovirals) to chemotherapy, yet apparently this particular conference has no difficulty making the same association.

Back to the study report that caught my eye, "Bone Loss Evident in Nearly Half of HIV-Positive Patients on Antiretroviral Therapy", by Alice Goodman of Medscape Medical News. Kudos to the headline writer for making it explicitly clear that the study participants were on ARVs. Too often the headings of reports like this suggest findings are specific to those with an HIV-positive diagnosis alone.

Interestingly, Goodman also refers to antiretroviral therapy as an "HIV specific factor... significantly related to the development of osteopenia and osteoporosis."

"Use of protease inhibitors and tenofovir were significantly associated with bone loss in our study. Osteoporosis is a major problem in this population, and the study suggests that HIV-infected patients with risk factors should have bone mineral density [BMD] monitoring," said Anna Bonjoch, MD, from Lluita Contra La SIDA Foundation at Germans Trias i Pujol, University Hospital, in Barcelona, Spain.

While Goodman's report is about a study on bone loss, she also observes that researchers are not unaware of the contradictions in the recent push by the pharmaceutical-backed AIDS industry—including so-called community based AIDS organizations—to put more people on ARVs earlier than ever, regardless of their actual health status or physical symptoms.

At the opening press conference of ICAAC, Laurent Kaiser, MD, from the University Hospital of Geneva in Switzerland, told the media that new guidelines call for earlier treatment of HIV, and this means that patients will be treated for even longer than they have been previously, increasing the risk for adverse effects. "One of the most important issues in HIV infection is how to treat osteoporosis and cardiovascular disease — 2 major side effects of antiretroviral treatment. We don't have any answers yet," he stated. (emphasis added)

We AIDS dissidents are often chided for focusing on the harm caused by Highly Active Antiretroviral Therapy (HAART). A common response is that the benefits derived from these drugs outweighs the harm. That may be the case for those people with severe conditions, such as individuals on their death beds hoping for a "Lazarus" response. Research designed to evaluate the evidence against long term use of toxic drugs by otherwise healthy people has not been—and will not be—so well funded.

I guess we are not supposed to read reports like this one that all but make the case that long term use of current pharmaceutical AIDS treatments have simply replaced old problems like PCP pneumonia and KS with new ones like systemic organ failure, cancers and death from cumulative toxicities. In the process, we have increased the cost of treatment to astronomical levels, not only for the initial condition, but for treating the inevitable subsequent adverse reactions as well.

Rather than question whether we should focus more resources on alternative and non-pharmaceutical solutions to chronic health problems, researchers seem to be setting the stage for the solution to this dilemma.

"All HIV-positive women in menopause and all HIV-positive men aged 50 and older should be screened for BMD," Dr. Brown recommended.

We all know what the doctor will order if such "screens" report even the mildest case of osteopenia: more drugs. Unfortunately, the profitable and over prescribed bisphosphonates most commonly used to treat bone loss, such as Boniva and Fosamax provide questionable benefit and their own set of adverse reactions. Like the ARVs, they work better at producing a predetermined desired lab result, or in this case, scanning results, than actually healing a condition.

To her credit, Goodman notes Dr. Brown's disclosed financial relationship with pharmaceutical companies GSK, Gilead Sciences, ViiV Healthcare, Merck (maker of Fosamax), and Tibotec. There is always a soldier from the army of such expert doctors (unflatteringly referred to as "pharma shills" by some) ready to provide soundbite quotes like the ones in this article.

I read articles and studies like this every week and wonder why it is so rare to find similarly published findings (pro or con) from any publicly funded research on alternative treatment options.

We Americans especially, are bombarded with the myth that we have a "choice" in our health care decisions, when in reality we are only offered a choice between this drug and that one, or perhaps radiation vs. chemotherapy. We need and deserve more.

Modern Western medicine is now controlled by a very small minded philosophy that confuses medical treatment—specifically pharmaceutical drugs and high-tech procedures—with "health care". There is only a token tip of the hat to "complementary alternative medicine", such as acupuncture or herbal medicines. All one has to do is visit a hospital cafeteria or try eating from a hospital food tray to understand how little attention nutrition is given in our medical system (I refuse to call it our "health care" system).

Traditional Chinese Medicine serves the Chinese people admirably, as does Ayurveda in India. Rural populations in South America manage surprisingly well with their local shaman. That's not to say there is no value to western, or allopathic medicine. Western doctors are quite good at dealing with acute medical problems, and there may be no better equipped or skilled emergency medicine services than that found in the emergency rooms of U.S. hospitals.

Where our system fails is in looking beyond the narrow focus of pharmaceutical and surgically invasive solutions. Many people facing chronic illnesses, such as cancer, AIDS, lupus, MS, Lyme Disease and more, have come to realize their dis-ease cannot be cured unless they take—sometimes extreme—measures and lifestyle changes to restore their health. We want and need our medical care system to embrace all forms of healing.

Our "choices" are dictated by profit-driven insurance companies and pharmaceutical companies, backed by the Federal government (or is it the other way around?). That is the main reason I opposed the current so-called health care reform law. It did nothing to empower those of us who want to choose a different path to heal ourselves.

Those of us who have mostly opted out of the Pharma solution for our health problems, for whatever reason, are on our own. Under the new "reform" we are required to purchase insurance that will not pay for the kinds of health care we choose to utilize. Alternative care is generally not nearly as expensive as allopathic care, but major health problems do get expensive.

Since my decision to quit nearly all pharmaceutical drugs in 2007, the cost of my personal medical treatment for "AIDS" has dropped from nearly $100,000 per year for allopathic care in the first several years of this century to a few hundred dollars per month lately, mostly for nutritional and alternative care. When I still thought I was able to afford it, I probably spent up to a thousand dollars per month for a much more intensive and thorough regimen of alternative protocols a couple of years ago that included things like acupuncture, neurofeedback and high-dose nutritional infusions (including intravenous vitamin C).

These are just examples of the types of alternative healing I have had experience with. There is a whole world of healing that is working for many people who can afford them. Because these treatments are not cooked up in a pharmaceutical laboratory where they can be patented and promoted at criminally high prices, and because alternative healers do not have the resources to conduct clinical trials, these kinds of healing are denied coverage, and sometimes denied even when the patient is willing and able to pay.

I'm not talking about obviously dangerous and ridiculous therapies, such as intravenous injections of chlorine bleach. The vast majority of alternative medical practices have been proven to be safe over the centuries. Safety is one of the primary reasons that they are considered preferable to so many of us. There are very few instances of harm done to even require the kind of safety reviews that allopathic methods have so richly earned, considering that in the U.S. alone, there may be as many as a million deaths per year caused by doctors, hospitals and medications (more than the number of deaths from cancer or heart disease), over 2 million adverse drug reactions, 7.5 million unnecessary surgeries and 8.9 million unnecessary hospitalizations! ¹

Nor am I suggesting that there is no role for pharmaceutical medicine and research. There is. It just needs to be put back into a more reasonable perspective with the other fields of healing. The powerful grip Big Pharma has on doctors, medical schools and public policy makers must be reigned in in the interest of competing approaches to health.

There are promising concepts and theories in AIDS research—mostly from outside the United States—such as Dr. Heinrich Kremer's research about the Th1/Th2 switch of the immune system, which can be addressed with simple and inexpensive treatments to boost glutathione. The Perth Group has been researching immune disregulation for 30 years and is still begging for funding to conduct clinical research. Luc Montagnier, the French discoverer of the alleged virus associated with AIDS has repeatedly acknowledged that not only are co-factors probably required to cause illness, but that a healthy immune system can protect against it and that a healthy person can defy and defeat the disease. ²

Not all promising discoveries come from full-time researchers. There are other respected clinicians working in the real world who are dabbling with similar and different approaches to actually restoring balance to the immune system, rather than "fighting" some mysterious virus that no one can quite nail down.

What would happen if ten of these outside-the-box researchers were selected for funding to implement their ideas, using just 1% of the current global AIDS research budget for four years? I have no doubt that we'd have far more leads and more promising leads to follow than we'd know what to do with.

And that is a problem I'd love for the world to have.

UPDATE:

Just as I'm preparing to publish this post, another report popped up on my Google Reader, this one warning of neurological disorders in patients with "HIV-AIDS" (though this headline fails to mention they also just happen to be on ARV drugs). The research was initially published in the journal Neurology and the report is from The Globe and Mail.

“The virus in the nervous system is a little different from the virus in the blood,” [Dr. Christopher Power] said. In particular, drugs can have trouble crossing the blood-brain barrier.

Practically, that means that drug cocktails are not as effective at preventing neurological problems as they are at staving off other health woes associated with HIV-AIDS such as pneumonia.

Dr. Power said some HIV-AIDS medications also harm the brain. In particular, the older “d-drugs” such as ddI (didanosine), ddC (dideoxycytidine) and d4T (stavudine) can be neurotoxic, and the long-term impact of newer medications on the brain remain unknown.

There is also a growing belief that HIV somehow accelerates the aging process, particularly in the brain. “We’re seeing diseases associated with aging like dementia in people with HIV,” Dr. Power said.

Readers are expected to not notice the "AIDSpeak" here by ignoring how curious it is that the "neurotoxic" drugs can cross the blood brain barrier to harm the brain, yet are unable to defeat HIV there. The relevant point is that, like the report on bone loss above, research published outside of AIDS-specific journals frequently continues to show just how much harm can be caused to the mind and body by ARVs and how often one must read between the lines to glean the real news in these media reports.

Note: I mostly publish on my own blog these days. Feel free to visit or subscribe to my RSS feed there.

What's wrong with being #2?

Sat, 3 Jul 2010 16:07:30 -0400

I’ve written before about my interest in geeky stuff like the Alexa website rankings. A fellow AIDS dissident turned me on to Alexa last year, using it to point out how many Dissident websites and blogs there are out there, and how favorably many of them rank, especially compared to those websites that exist solely to attempt to discredit AIDS questioners and rethinkers, aka Dogmatists.

Since then I’ve been tracking these websites of interest to AIDS dissidents and updating an Excel spreadsheet every few months. Not that I don’t have too much time on my hands, but it isn’t that difficult or time-consuming to do if you find that sort of thing entertaining.

Here is how Alexa describes what their rank means:

The rank is calculated using a combination of average daily visitors to resistanceisfruitful.com and pageviews on resistanceisfruitful.com over the past 3 months. The site with the highest combination of visitors and pageviews is ranked #1.

In other words, Google’s Alexa rank is 1; Facebook’s is 2 and so on. Another way to think about this is that there are 6,000 websites with more traffic than the site with an Alexa rank of 6,001.

So, The New York Times’ Alexa rank is 91. The Weather Channel is 113. The website rank for the city of Kansas City is 279,211, while that of my home town of Colby, Kansas is 9,156,448.

Get it?

All of these are global rankings, which means they are based on total Internet traffic data collected from a variety of sources. Alexa also breaks down the data for some sites according to country.

Below is a list of Dissident and Dogmatist sites, sorted according to the latest global rankings from Alexa (Dogmatist sites highlighted in yellow). I am more than just puzzled that resistance is fruitful is currently the second highest ranked AIDS dissident website, and I’ll discuss why below.

It doesn’t take much Googling to find a lot of criticism about the validity of Alexa’s ranking, as well as some black hatters wanting to sell their supposed “secrets” for gaming Alexa’s system. Alexa, which is owned by amazon.com, defends its methods, which they update periodically to stay ahead of the bad guys.

For the record, I have never contemplated, let alone implemented any illicit code or unethical strategies to artificially inflate my blog’s rank. I have installed the Alexa toolbar in my Firefox browser; I include a link in my signature when I comment on the web; and I promote this blog to about 150 facebook “friends”, and as a bloglet on OpenSalon, where I started posting a year and a half ago. The last thing on my mind then was being popular. I was coming out of a pharma-induced haze and struggling through the consequences of dealing with more than a decade of severe medical and health problems. I just wanted to tell my story. Blogging was therapy. If I’d only known then what I know now!

So, what is one to think of these rankings?

(Click here to read the entire post on my blog)

Still angry after all these years

Sun, 6 Jun 2010 21:06:12 -0400

I recently unboxed some of the early media accounts of my life as an openly gay AIDS activist in Kansas City. The very first words in the very first article ever written about me as an activist proclaim: "Jon D. Barnett is an angry young man."

That anger served me well as the fuel for many years of social activism, though it ultimately took a toll in burnout and poor health.

Nearly ten years later, when I was diagnosed as HIV-positive, my world tail-spinned and I withdrew socially for nearly a decade. The anger that once drove me was now directed internally against an invisible—and supposedly invincible—enemy.

It was only after the life-changing experience of quitting all pharmaceutical drugs in 2007 that I began to work my way out of my drug induced, self-imposed exile.

While questioning the wisdom of committing to a lifetime of AIDS drugs may be controversial, it is not crazy and there is definitely no malicious intent in telling my story. I simply cannot have the life experiences I have had and keep them to myself.

One would think from some of the reactions I've gotten from readers, viewers and even personal friends lately that I am trying to hurt people, though nothing could be further from the truth.

A couple of weeks ago, as I sat across the table from a friend I've known for decades, I felt his hurt and his anger as he challenged me for suggesting that it may not be necessary for everyone to take ARVs for life to survive a positive HIV diagnosis. There is more to his story. His partner had just been brought back from the brink of death a few months ago after starting HAART. He was a real-life example of the "Lazarus" effect.

Never mind that it takes HIV ten years or more to cause symptoms, ARVs are credited with restoring health in just a few months! I did not have adequate answers for all of my friends' questions, nor did I feel that was my job. What was important was that we discovered that we shared many of the same questions, though getting there took quite a bit of effort to overcome the misdirected anger and hurt first.

On my youtube page I have posted a video about the LOTTI study, which found that many positive people can successfully quit their drugs for long periods of time, and possibly even permanently. (I also blogged about the LOTTI study here). The video has received comments from some people involved in "AIDS education", including a poz man from Portland, Oregon.

In a comment he has since deleted, youtuber gbfowler was apparently frightened enough by the notion of some people choosing to try a drug-free alternative to recover their health that he felt compelled to counter the message of hope I had presented, warning others who might stumble upon the video that my views are "extreme" and that "99 percent of HIV docs and researchers disagree with [me]." Of course, he is right on both accounts, but the question begs: why did he feel it was so important to warn others of the obvious?

Yes, it made me angry that someone who makes their living pushing drugs onto other gay men would express only fear about any scientific information that offers hope to tens of thousands of gay men—many of them otherwise healthy—who are facing, or have already embraced a lifetime of chemotherapy.

Talk about extreme and dangerous ideas!

The gay community has developed...

(read the rest of this post on my blog here)