My Issue With Early & Aggressive Treatment Of HIV...

[rawTOP]

These days it seems doctors like to put people on meds as soon as they test poz. That just really bothers me... I've worked in pharmaceutical marketing years ago - even on drugs that are now banned by the FDA... I see drugs as a last resort, not a first resort... Just stop for a second and think about all the drugs that are household names that have been pulled from the market or have had big lawsuits because of serious, life-threatening side effects... I looked up on YouTube to see if there were videos related to drug side effects lawsuits and found tons of them...

(for acne)

(for birth control)

(for depression)

(for smoking cessation)

(for seizures)

(for diabetes - I worked on the marketing for this one)

(for hair loss)

(for seizures - I worked on this one as well)

Fosamax (for osteoporosis)

(for seizures - I've had a doctor insist I take this when I didn't really need it)

...and the list could go on and on...

You don't want to find out there's a serious problem with a drug AFTER you've been taking it for a few years... The thing is that when you're HIV+ the drug companies have an out - they can blame any side effects on your compromised immune system.

Meanwhile there's big money in ARVs. I used to have a doctor who specialized in HIV care (even though I was neg), and just about every time I went to see him there was a drug rep in his waiting room. There is huge incentives for doctors to prescribe ARVs as well as social pressure. The drug companies are pumping out study after study showing early use of ARVs is beneficial but those studies are just based on a few years of following patients (at most) - when the patients will be on the drugs for decades...

Then influential doctors who are paid by the drug companies basically tell all the other doctors that it would be malpractice not to put poz guys on meds quickly. That really is how it works - I've worked for companies who recruited those doctors and then sent them off to "consulting meetings" at places like ski resorts, top golf destinations, etc.

We're talking about putting someone on really powerful drugs for 30, 40, 50, even 60+ years and it seems like there's zero discussion of the possible/probable side effects over that period of time.

I also get the sense that a current is developing in the scientific / medical / public health communities that poz guys need to go on meds to protect neg guys. That the vaccine for HIV is ARVs. But this thinking is based on the idea that the health of neg guys is more valuable and worthwhile than the health of poz guys.

I'm not saying poz guys shouldn't take ARVs. There will be a time when the benefits of ARVs outweigh the side effects. After all, HIV is usually deadly if left untreated. But putting someone on ARVs before you know how the person's body responds to HIV just seems wrong on many levels. One size does not fit all. For example, certain people have genes that make it more likely that their body can "control" HIV and keep viral loads fairly low (e.g. GG or GT on marker rs2395029). These people don't need to go on ARVs nearly as quickly as everyone else. The doctors don't even test to see if the patient has genetic markers for HIV control. The tests would cost maybe $100, yet putting the patient on ARVs will cost thousands of dollars every month for decades and decades...

I guess I'm just anti-drugs. I'll take them when I absolutely need them, but not before. I've had too many issues with "top notch" doctors who didn't really know what they were talking about and wanted to put me on meds "just to be safe" - problem was the drugs didn't help, and the side effects were worse than the problem they were supposed to fix.

Thoughts?

[Tucsonmale]

I agree, esp if your chasing to get poz. Drugs are expensive and can do lots of harm to the body, esp over time. The mission of hiv doctors are to get you nondetectable as quickly as pozzible so you won't pass on your bug to others. This is there only mission. Lots of side effects can cause death overtime too. The drugs do create fat deposits on your body. So make your own choices.

[Belfast-Bottom]

The important thing to remember about drug companies is that they are out to maximize PROFIT. They are businesses not welfare organizations. They have an obvious incentive to push drugs. I avoid drugs except caffeine, alcohol and occasional poppers. Few drugs are risk free. A friend of mine suffered partial hearing loss after a course of erythromycin - a common antibiotic.

[NastyRigPig]

The following website:

Projects.propublica.org/docdollars will tell you if/how much money your physician receives from the drug industry. Mine is at Zero dollars, so I feel he is giving me unbiased information. If your doctor is on the list, I think it is reasonable to ask your physician if your treatment plan has been influenced in any way by these dollars.

We all have to be our own health advocates. The questioning doesn't have to be adversarial, but you do have a right to know.

[NastyRigPig]

I need to let our non USA members know, that this database is only applicable for USA. However, since most of you have such vastly superior medical systems, this may not be as much of an issue in your country as it is in ours.

[bttmboy4daddy]

Our entire health-care system is focused on what makes the most money for the people running things, not what is best for the patients. It isn't limited to just prescription drugs.

For instance:

I am a big supporter of getting vaccinations, they save lives every day. However, in the last few decades, the medical community has started pushing them on people who don't really need them, even when the vaccines have not been properly tested for potential side effects (or serious, possibly life-threatening, side effects are known to occur). The recent attempts to scare healthy people into getting flu shots is a prime example. They try to scare people into getting them when they don't need them in order to generate large profits. This results in vaccine shortages, meaning people who actually did need the vaccine (young children, the elderly, etc) aren't getting it. Then, when these people who needed the vaccine but didn't it, get sick and possibly die as a result, the health-care companies use it in next year's fear mongering propaganda, and the cycle repeats itself. (Please keep in mind I am not ranting against needed vaccines, such as elderly people getting flu shots, or children getting immunizations.)

It's sad, but doctors and other people in the health-care industry are, more and more, every bit as cold-hearted and financially motivated as any lawyer or used-car salesman. You have to make sure you are being treated based on your NEEDS, not what puts money in other people's pockets. It's sad, but that's the world we live in now.

[TonyRedux]

One thing you have all tellingly ignored is that HIV itself has long since been proven to be a SYSTEMIC virus, attacking nearly every system in the body, and does not simply attack the immune system as was previously thought. The mere presence of the virus causes the human body to unleash an overall inflammatory response that further damages itself...and that this cycle of progressive damage at deep levels starts from the moment of HIV infection, and for the vast majority will continue until death absent anti-retroviral therapy.

A wider appreciation of this is not helped by the undeniable greed and self-interest of the pharmaceutical industry, but the scientific consensus continues to swing in the direction of early treatment being better. When you have HIV, it is essentially trying to eat you. There is no historical precedent for determining that a deadly virus should be allowed to incubate for best health. The only argument toward that end is based on the toxicity of HIV meds themselves, and by all accounts they are far less damaging than ever before.

The actual systemic damage of HIV at every stage of infection is something that gets far too little attention in every argument I've ever seen about "when to treat" among lay persons.

Edited January 9, 2012 by Hotload84

[Ingulphus]

Completely off-topic (although I agree with TonyRedux) - hot men with brains are the ultimate turn-on!

[Hotload84]

One thing you have all tellingly ignored is that HIV itself has long since been proven to be a SYSTEMIC virus, attacking nearly every system in the body, and does not simply attack the immune system as was previously thought. The mere presence of the virus causes the human body to unleash an overall inflammatory response that further damages itself...and that this cycle of progressive damage at deep levels starts from the moment of HIV infection, and for the vast majority will continue until death absent anti-retroviral therapy.

A wider appreciation of this is not helped by the undeniable greed and self-interest of the pharmaceutical industry, but the scientific consensus continues to swing in the direction of early treatment being better. When you have HIV, it is essentially trying to eat you. There is no historical precedent for determining that a deadly virus should be allowed to incubate for best health. The only argument toward that end is based on the toxicity of HIV meds themselves, and by all accounts they are far less damaging than ever before.

The actual systemic damage of HIV at every stage of infection is something that gets far too little attention in every argument I've ever seen about "when to treat" among lay persons.

For reasons only tangentially related to HIV, the doctors started me on meds quite early. The argument detailed by TonyRedux for relatively early introduction to the antiviral medication, is probably the reason my physician said, when we were speaking this past week, that by all measures I am in very good health, notwithstanding the presence of the virus in my system.

Edited January 9, 2012 by Hotload84

[TonyRedux]

For reasons only tangentially related to HIV, the doctors started me on meds quite early. The argument detailed by TonyRedux for relatively early introduction to the antiviral medication, is probably the reason my physician said, when we were speaking this past week, that by all measures I am in very good health, notwithstanding the presence of the virus in my system.

there is some evidence that starting fully adherent ARV during initial infection, while being too late to arrest infection itself, can mean blunting or entirely preventing the decimation of the B-cell population of the gut, which in tandem with our gut microflora r probably responsible for MOST of the total immune activity in our bodies. B-cell decimation (and the general inability to recover them) is the primary reason that HIV+ people r regarded as being "permanently immuno-compromised", regardless of T-cell count.

the more ARV drug toxicity can be minimized, the more imperative and inevitable early HIV-treatment becomes...even when a cure is found, there will be reason to medicate those HIV+ people who can not yet access such a cure for whatever reason.

[HungLatinDom]

ANother reason for early treatment is to cut the expansion of the virus to even more cells. The virus might infect more cells that keep dividing without being killed, and it gets to a point where a big chunk of your cells have the virus but are still functional. You might start therapy at this point and keep the virus unable to reproduce and screw your cells, but they already have the viral DNA in them. If tomorrow a therapy to remove infected cells, clearing the immune system, is developed, how many of your cells will die? I am not sure of the answer to this, but it seems reasonable that a person with a depleted T cell population before starting therapy, many of them infected, would have a hard time with a therapy like that. There are some drugs in the pipeline that act like that, and IIRC, at least one gene therapy approach.

[GermanFucker]

In short: I agree with TonyRedux and disagree with RawTop.

The scientific consensus today favors starting early exactly because studies suggest that the damage HIV does to the system significantly outweighs the side effects of ARVs. So it is indeed about the health of the poz guys. The damage that unchecked HIV does to your brain, your intestines is real and needs to be kept in mind when weighing some hypothetical risk. Mortality statistics might be boring, but in the end we cannot rely on analogies and anecdotal evidence (you always find an example of just the opposite).

As to the price of ARVs: It costs about 5% of the retail price in western nations to actually make these drugs and Africa and India pay little more than just what it costs to make them. Patents on AZT and abacavir have already expired, if we're talking 40, 50 years we can expect prices to drop significantly as more and more compounds become public domain.

[rawTOP]

@GermanFucker & Tony... You're both ignoring the effect of the pharma industry on the research and discounting the long-term side effects 20, 40+ years from now. I mean doctors put people on meds before they even know whether the person is genetically able to suppress HIV. What pharma affiliations do the researchers of those studies have? Do you know? It makes a huge difference. Seriously...

Tony I know you shoot for super undetectable. For you that's an informed choice (and ironically from what you told me I'm the one that got you interested in being super undetectable), but it's one thing to make a decision like that for yourself. It's another one for it to become general medical policy (for the reasons I've stated above).

[TonyRedux]

@GermanFucker & Tony... You're both ignoring the effect of the pharma industry on the research and discounting the long-term side effects 20, 40+ years from now. I mean doctors put people on meds before they even know whether the person is genetically able to suppress HIV. What pharma affiliations do the researchers of those studies have? Do you know? It makes a huge difference. Seriously...

Tony I know you shoot for super undetectable. For you that's an informed choice (and ironically from what you told me I'm the one that got you interested in being super undetectable), but it's one thing to make a decision like that for yourself. It's another one for it to become general medical policy (for the reasons I've stated above).

not at all, the Big Pharma effect is well-documented and appreciated in the HIV-treatment sector...however the consensus forming around early treatment has continued to snowball over the last half-decade, and eventually there's a fine-line to cross between "alternative opinion" becoming "dissident opinion", and between "dissident" and "tinfoil hat wearer". right now your opinion is deep into "alternative" territory...but since the reasoning ur citing in ur response can easily carry u into tin-foil-hat territory, i'm curious if there's a threshold of consensus that would ever be reached at which point u'd get on board?

as for undetectability, my first doctor was pushing it from the moment i met her in 12/03. what gave me the final push toward that paradigm was a combo-event in 1/08: a certain young twink i'll bet we've both fucked hollered at me around Pride 07 on Manhunt, during my serosorting era, and after repeated questioning he "admitted" to being poz. we didnt get to play until september, and he rode me cowgirl-style quite sweetly. then in January 08 he wrote me on MH from his phone, he was just down the block at XES. as i walked him back to my place he said "i just found out yesterday i'm POZ!", to which i instantly n blithely replied "congratulations". he became upset, saying "what kind of thing is that to say to someone", and even as i gave a desultory apology i was thinking "bulllfuknshit! u lied to me months back, n who knows how many other people! u aimed for this goal, u got it, CONGRAT U FUKN LATIONS!"...

2 weeks later came the Swiss Statement. my doc had been pushing me to switch regimens for a year, and i gave in...however designing my own ultra-powerful ARV+ regimen that has continued with minor tweaks to this day.

what i had told u is that ur ad in 2007 asking only those HIV+ people with "consistently undetectable viral load" to contact u was definitely an influence, as it was the first sex ad i had seen employing that exact phrase. ur ads have often been trailblazing in employing current medical terminology.

as an aside, the way to break Big Pharma's hold over current treatment is not to fight every population-wide decision made re: treatment guidelines, but rather to lobby Congress to ensure that newer biotech startups with extremely promising new treatment technologies don't end up penniless and being bought up by Big Pharma in receivership...which is happening at this moment.

[TonyRedux]

one more thing to add, RT: when u say that drug toxicities may appear 20-40 years down the line, that is actually at least double the life expectancy of most people who are HIV+ and NOT on treatment. what the medical community has proven beyond all doubt is that, when using current therapies, starting treatment when t-cells fall below 200 extends survival time and improves health substantially less than when one starts treatment when their t-cells fall below 350. furthermore, the medical consensus has emerged in US and elsewhere that the same relationship applies to starting when t-cells fall below 500 as opposed to 350 (earlier is better). what remains controversial is whether the medical community should wait until the results of the START Trial b4 making a decision on whether to advise starting treatment when t-cells exceed 500.

so let me ask u, RT: if tomorrow u were told that u have 600 t-cells and HIV-1 infection, at what point would YOU choose to go on meds? what's ur threshold?