Map of life expectancy at birth from Global Education Project.

Sunday, January 04, 2009

Now let's get real here

Okay folks, I have a responsibility to be absolutely clear and straight about this. There is no doubt whatsoever that:

a) Human Immunodeficiency Virus, HIV, a very well-studied and well-characterized entity, is the cause -- the sole cause, and a sufficient cause all by itself -- of a disease in humans called Acquired Immunodeficiency Syndrome, AIDS.
b) Combinations of drugs, collectively called Highly Active Antiretroviral Therapy, or HAART, that suppress replication of HIV, slow or entirely prevent the progression of HIV disease, and can reverse it when it has already developed.
c) People who are infected with HIV, who use HAART and adhere closely to the required dosage schedule, live much longer, and in better health, than people with HIV who do not use HAART.

Denying this is flat earth stuff, folks. It's like claiming that aspirin causes headaches. We know this, we don't just think it or believe it, and the way you can know it too doesn't require any scientific training and it doesn't require you to believe anything scientists say about the nature of HIV or the way the drugs work. Here's how you know:

Many tens of thousands of people all around the world, including in the United States, who had never taken any antiretroviral drugs but who nevertheless were terribly sick with AIDS, even terminally ill and on the point of death, who started taking antiretroviral drugs, recovered from their illness. They quickly, seemingly miraculously, got better. Their opportunistic infections disappeared. Once wasted away, they started gaining weight. Once bedridden and incapable of the basic activities of daily living, they arose from their beds, became active and vigorous, and resumed almost normal lives.

Doctors have observed and documented this phenomenon not only in writing, but in photographs and film documentaries. I have personally met and spoken with many people to whom this has happened -- people who fully expected to die and were preparing for death who suddenly found that they had lives again, and whose biggest problem was rediscovering life.

Remember that before the advent of HAART, AIDS was the leading cause of death for people age 20-49 in the United States. Thousands of people were dying every year. Furthermore, there were hundreds of children born every year with HIV infection transmitted from their mothers. Untreated, these children -- none of whom, obviously, had ever abused drugs or had repeated STDs or been malnourished, or any of the other reasons AIDS denialists say people with AIDS really get sick -- got sick and died, usually before they were six years old. With the advent of HAART, they stopped getting sick and they stopped dying and now they live right on into adolescence. We don't yet know how they'll do in the longer run but so far, so good. And, even better news, ARV drugs given to mothers absolutely do prevent transmission of HIV to their babies, so perinatal HIV in the United States is now extremely rare. Large programs that helped care for children with HIV and support their families have gone out of business. A whole cohort of pediatric specialists has had to find other work.

These are facts. They are incontrovertible. They speak for themselves. HIV causes AIDS. HAART prevents AIDS. QED.

Now, the drugs have side effects. For some people, these are worse than they are for others, but the side effects can be pretty bad. They include redistribution of body fat leading to physical deformity, hypercholesterolemia, diabetes, peripheral neuropathy, nausea, diarrhea. Many people who take HAART end up taking other drugs to manage the side effects, and they often end up feeling like a walking drugstore. Some people take 12 or 15 different medications.

Believe me, I hear you. That can be a stone drag. It's perfectly understandable that people often want to stop taking the drugs and take their chances with HIV, at least for a while. People with HIV do this so often that it even has a name -- a drug holiday. People might also decide that they'd rather wait to start taking HAART until their HIV disease is advanced enough that they really have no choice.

I'm certainly sympathetic to these positions, but I should also tell you that doctors have done a lot of experiments to try to find the best strategies for managing HIV disease, and they have concluded that drug holidays are not a good idea. They increase the chance that the virus will become resistant to the drugs, and they allow degradation of the immune system and other damage to occur. Delaying treatment too long is also not a good idea. While the consensus is not for immediate treatment, it now seems clear that it's not a good idea to let your T-cell count go below 300 if you want the best long-term prognosis.

These are the facts. Now, sometimes physicians don't do a good job of working with their patients to help them make the choices that work best for them. Doctors can be unsympathetic to the problems people have following their regimens, and respond to those difficulties with judgmental attitudes, scolding, or just callousness. These behaviors by doctors are counterproductive and can even lead to people stopping their medications.

Now, if you do stop, of course you will immediately feel better because you will no longer experience drug side effects and the psychological burden of having to be reminded that you have a serious disease every time you take the pills will be lifted from you. But eventually, your HIV disease will progress and then you will feel a whole lot worse. That's the way it is.

If you've decided to stop, that's your choice and I certainly don't think it's a moral issue or it makes you a bad person or anything like that. But please don't go around giving wrong information to other people.

1 comment:

kathy a. said...

i'm glad you wrote this. as a lay person who has lived in or near san francisco for all but 5 years since 1979, i know that this is true: that HAART therapy changed everything.

whole communities were devastated, during the worst of it. the s.f. gay men's chorus lost 250 of its members in the '80's and '90's; the losses were on an unimaginable scale. and that is not happening now.

a friend we all thought had little time left 12 years ago is still around, feeling far better than he could have imagined and still raising some hell [in a professional sense]. [OK, he also has a wicked sense of humor, but that wasn't sufficient to pull him through, back in the bad days.]

i remember in the early years, before drug cocktails made such a difference, people would choose to abandon therapy. the choice they made was that the treatment was worse than a sooner death. that may still be true for some folks -- the side effects are nothing to sneeze at, and may be intolerable for some. i think that is a legitimate choice if it is informed, just as it might be for a cancer patient deciding enough with the chemo.

the key, though, is making an informed decision. there have been cancer quacks for as long as there has been cancer; no reason it should be different with HIV/AIDS. and -- these illnesses are different and progress differently for each individual -- so, there are bound to be some miraculous circumstances for a lucky few, but the odd anecdote or few does NOT invalidate the way the diseases generally perform in humans over the course of the illness.