That’s it. I have tried as many alternative treatments as I can think of to reverse the decline. I will be starting my third round of pharmaceutical ARVs as soon as I can get a prescription and fill it.
This decision has been a long time coming, and in hindsight, I probably should have restarted a few months ago. There’s nothing magical about 97, or being below 100, but it’s as good a breaking point as any. I’ve long argued that there are two things to keep in mind about CD4 counts: one is the long-term trend; the other is single- or low double-digit counts.
No bounce left
For years, my CD4 count has bounced like a ping-pong ball, but that changed a few months ago. It’s been more of a straight line decline since last October, and a drop from nearly 500 in December 2010. Eight of the last nine tests have reported a decline. The CD4% (percentage), which is another way this marker is measured, has dropped from 20% last October to only 9% several days ago. I know some people who dismiss flow cytometry—the procedure used to measure t-cells like CD4—as unreliable, and I plan to debunk that notion in an upcoming post.
Look folks, I’m not willing to wait for a serious infection to hit me before taking action. I have unquestionably performed above and beyond due diligence and I have tried many of the most promising alternative therapies. While those treatments may have been beneficial, and may have even slowed the decline, they haven’t managed to halt it, let alone reversed it.
To those who might be disappointed in my decision to restart ARVs: trust me, no one is more disappointed than I am. I might even be a bit discouraged… for about 5 minutes. Then I remind myself that when I first quit these drugs 13 years ago, I didn’t know how long I could go without them… Weeks? Months? I had 2 1/2 years free from them then. The second time I quit the drugs in 2003, I didn’t know how long I could go without them. I never imagined I would have more than nine years of freedom, and I don’t regret a day of it. In fact, I am very, very grateful.
I can anticipate one question from certain AIDS Rethinkers: “Aren’t you making a treatment decision based on laboratory markers alone?” Yep, I am. The alternative is to wait until I get PCP or KS or some other weird infection that people with more robust levels of these cells are not likely to get. We AIDS questioners have seen what happens to those people who insist on avoiding the drugs at all costs and I don’t like the odds I’ve seen.
I don’t know what these drugs do, and I seriously doubt that they are truly “antiviral”, but they do have some effect on specific immune markers, such as CD4 cells, and their ability to rescue some extremely ill Affected people from the brink of death is indisputable. I freely acknowledge that taking them solely based on CD4 count is a far less certain choice; in fact it’s little better than a crap shoot. There are potential risks, regardless of the decision and I’ve just chosen to cast my dice on another round of the drugs. I pass no judgement on those in a similar boat who choose a different course.
Return of Intermittent Therapy
I don’t plan to take ARVs for the rest of my life. I don’t plan to take them any longer than I feel necessary to achieve an as-yet-undefined point of restoration of laboratory markers. In the early 2000s, I was attracted to the notion that a poz patient might be able to cycle on and off of the drugs. This theory was coming from the AIDS mainstream shortly after combination treatments became popular, and though it didn’t last very long with the orthodox AIDS folks, I have not yet completely dismissed it as a possible option. The concept wore different names: Structured Intermittent Treatment/Therapy (SIT), or Structured Treatment Interruption (STI). I am just picking up where I left off. How long will I need to take these drugs to increase my CD4 count to a level I’m comfortable with? That’s what these drugs are designed to do.
I am re-evaluating my goals and objectives. I want to minimize my risk of adverse effects. I don’t know yet what that means, exactly, but I’ll keep everyone informed. I may do some other crazy things, like reduce the dosage, or take them less frequently.
There are a not insignificant number of people who are playing with variations of STI/SIT. I’ve corresponded with people who are taking their drugs at half dose, for example. Others have told me they quit their drugs altogether, but take them for a week before doctor visits, just to make sure the drugs will show up in their blood tests. And they’re getting away with it. Unfortunately, it’s impossible to draw any meaningful or useful conclusions from such haphazard occurrences.
Don’t blame the AIDS dissidents
I never intended to be as involved in the community of AIDS dissidence as I’ve found myself to be. I was asked to be a moderator at the forums then known as AIDS Myth Exposed, which has been renamed Questioning AIDS. A good name, if you ask me. Just like many of the folks on the orthodox side of AIDS, we admit that there is much we do not yet understand about immune dysfunction.
The role of role models:
I chose to tell my personal story as a form of journaling and therapy. It was never my intention to become a role model for others who are Affected with a HIV-positive diagnosis, but I can tell from the emails and messages I get that some people see me and others who are resisting lifetime ARV use as exactly that: role models. Too many of the role models in AIDS dissidence are gone, and not necessarily because they did not take their drugs: Christine Maggiore; Emery Taylor; David Collins; Karri Stokely; and most recently Maria Papagiannidou are some I know of personally. There are others.
David and Maria did take ARVs. What we don’t know is whether they waited until it was too late, or whether they had a disease process that not only did not respond to the drugs, but was actually hastened by them.
Yes, the ARVs can also kill people, and they do. When my friend Mark Cheney died several years ago, his doctor confessed to me that he had never seen such a case of simultaneous multiple organ failure, and that the cause was undoubtedly the so-called “salvage therapy” attempted with AIDS drugs.
The main reason I intend to continue to tell my story is in hopes that someone can find a way to put the pieces together. I’m pretty sure that there is a way to manage “AIDS” that does not require a lifetime regimen of toxic drugs, but may require intervention with them at some point. I don’t expect to discover “the answer” on my own, or even in my lifetime. I do know that the AIDS establishment is not going to discover the answer as long as they are so beholden to the profit-driven, “free-enterprise” pharmaceutical industry.
That means it’s up to us, the Affected, and the only way we are going to learn is for more of us to share our stories and our experiences. What good are role models who don’t inspire others to share their own stories?
Hit it hard, hit it early?
As I review my own expectations around SIT, I realize that I first started ARVs within weeks of seroconverting (testing HIV-positive). I know because I have a negative test result that preceded the positive one by just a couple of months. This may be one critically important factor in the success or failure of structured treatment therapies. In an article written for TheBody.com in 2000 (which now carries a disclaimer warning of out-of-date information), Dr. Mark Dybul, MD discusses this: (.pdf version also archived here for posterity.)
There may be a difference in the impact of STI as immunotherapy based on when a person initiates effective HAART, i.e., during the earliest stages of disease (primary infection) or during later stages (chronic infection). HIV-specific CD4 cells may be important to mount and maintain an effective CD8 cell response. Unfortunately, except in a minority of individuals, HIV-specific CD4 cells do not seem to be functional after primary infection. But if HAART is initiated prior to seroconversion (i.e., a positive HIV antibody test), CD4 cell responses to HIV seem to be preserved. Therefore, people who begin HAART in the earliest stages of infection may have more potent boosting of CTL with STI.
Call me a conspiracy theorist, but I wonder if the promise of STI/SIT got buried under the flawed SMART study and the influence of Pharma, which obviously has no vested interest in patients doing without their drugs. The concept that ARVs, used sparingly and intermittently, might be able to help a patient “train” their own immune system to deal with HIV (yes, yes, assuming HIV really exists), a sort of auto-immunity, is intriguing. This concept was dubbed “auto vaccination” in the late 1990s. Again, I’ll let Dr. Dybul explain (though you might want to read this study from the journal AIDS, too):
It has been proposed that if plasma HIV RNA is allowed to resurface in a structured, sequential manner, it might be possible to augment HIV-specific immune responses. The thought is that with each cycle off drugs there will be a stepwise increase in the immune response as the host is again exposed to a certain amount of plasma HIV RNA and that the immune response will not be diminished with the resumption of HAART since the on-drug period is relatively short. This is called autovaccination, which means using one’s own virus to boost immune responses.
To be fair, these are just some excerpts from the article, which is worthy of a complete read, something you won’t hear me recommend about TheBody very often.
Thank gawd for Cipla Pharmaceuticals and the Internet
Now that I’ve decided to resume ARV treatment for awhile, I am finding that I fall through a gap in the social safety net big enough to swallow my now-defunct 2000 VW Golf! I have been eligible for Medicare since 2004, and thanks to my partner, I have always carried supplemental insurance, as well as prescription drug coverage (Part D). Since quitting nearly all pharmaceutical drugs a few years ago, I have never even met the deductible of my drug plan, and this year I opted for a very inexpensive “Walmart” plan. This plan has four “tiers” of drugs, with each tier evoking a higher copay. To make a complicated tale simple, it looks like I will have to pay 50% of any AIDS-related drug costs.
I won’t know which drugs I will be taking for a few weeks yet, but the most frequently prescribed ARV in the United States is Atripla, a three-drug combo in a once-a-day pill form. Atripla costs $1,600 per month, meaning my share will be $800 per month, or nearly $10,000 per year. My SSDI income last year was $13,100, and that is before paying for my supplemental and Part D premiums. I also receive about $10K of income per year from a private disability plan that I purchased long before I tested HIV-positive. Other combinations are similarly priced, and I cannot afford any of them.
The only way to qualify for my state’s AIDS Drug Assistance Program (ADAP) is to apply for Medicaid, a federally funded assistance program for those in poverty, administered by the states. I would probably qualify for this program, but there’s a catch. Any expenses paid on my behalf by Medicaid are subject to the Medicaid Estate Recovery Program, which attempts to recoup costs from a beneficiary’s estate upon their death. This mean that if Medicaid pays $10K per year for 10 years, they can seize $100K worth of assets in my “estate”. In my case, this includes half the house that my partner lives in (and mostly pays for), as well as my 14-year-old pickup. More seriously the $85K whole life insurance policy that Michael is paying the premiums on is fair game.
Now, I don’t mean to be greedy, but Michael has been supporting me for 13 years. He is paying the life insurance premiums. It doesn’t seem fair for Medicaid to lay claim as the beneficiary. They haven’t even offered to pick up the cost of the premiums!
Our other option is to buy generic versions of the drugs, manufactured by Cipla Pharmaceutical in India, via an Internet pharmacy (probably one in Canada) for about $150 per month, less than 10% of the cost from an American pharmaceutical company. Pretty effing incredible, isn’t it? I have seen the looks on faces of friends who live in more civilized countries when I try to explain this to them.
American health care workers typically respond to me by saying: “but these drugs are not FDA approved”. Like, do you think I’m impressed with that seal of approval? Cipla is the largest manufacturer of ARVs in the world. Do you really think they would put their reputation at risk by producing inferior drugs? And by the way, what has the FDA done to make me feel confident that I can trust them, anyway?
Besides, I kind of like the idea of supporting a country that recently decriminalized homosexuality and builds a decent car for $2,500. That’s considerably less than two months worth of Atripla from Bristol-Meyers Squibb and Gilead Sciences. John Martin, CEO of Gilead, is the 10th highest paid pharma CEO, at $14.2M and thanks in no small part to Atripla sales, Gilead’s net income rose 10% in 2010 to $2.9B.
Heck, just writing about that is enough to twist my gut and make me sick.