Bay Area Reporter - November 30, 2000
Jeff Getty, Survive AIDS Writers Pool

In the past year, two extremely well-informed and prominent AIDS activists died from AIDS complications. Both of these people had the very best healthcare and access to information (actually they both wrote about AIDS treatments) and both had been long-term veterans of AIDS survival. Yet they still died. One cannot expect to survive AIDS by one's wits. Although using one's wits to stay alive is an excellent tactic, we are not yet far enough along in development of effective low-toxicity treatments to think that AIDS is managed or even survivable. It is neither.

In the past year more and more information has surfaced about the long-term toxicities of continuous HIV anti-viral therapy. The news was not good. HIV drugs are implicated in lipodystrophy, heart problems, bone loss (hip replacement), inter-cellular malfunctions called mitochondriosis, lactic acidosis, and liver and kidney dysfunction and failure. Add in the various opportunistic infections and the drug toxicities required to treat them and you find many surviving AIDS patients have become antiviral and antibiotic multi-drug resistant. These AIDS patients (myself included) require stronger and more toxic remedies month after month and year after year. Ultimately one eventually dies, either from an infection or complications from treatments.

Nobody these days bothers to say how long an HIV infected patient can expect to live -- or how well. Since each person's lifestyle, healthcare, ability not to become depressed, and genetic immune response varies, there is no way to predict how well or long one can expect to stay alive with current anti-HIV treatments. To be sure, the old five- or 10-year death sentence has been reprieved for many on treatment. But how long before their drug toxicities gang up and kill, or force them off treatments? When PWAs started experimenting with going off drugs in order to avoid toxic build-up, healthcare experts coined the phrase "drug holidays" to describe such deviant behavior. Pressure to remain compliant was so severe that when patients stopped taking the drugs (because they were often being hurt by them), doctors were angry and patients were accused of laziness or lack of fortitude. Only later did activists and doctors coin a new phrase "strategic drug interruption," the stopping of HIV drugs in order to function or survive. It soon became all the rage. But stay off the drugs too long and many may face death from HIV ravaging their immune system.

Since 1996 there has been little or no true advancements in the drug arsenals. We still have the same three drug families; nucleosides, non-nucleosides and protease inhibitors. HIV resistance to any one drug in a family usually means resistance to the rest of the related medications. AIDS patients know this sad fact all too well. A new drug, T20 is in the pipeline. It is an adhesion inhibitor and appears to be non-toxic for now. It will barely make it to market. But the overall groundswell of innovative and active searching for new pharmaceutical targets for HIV by major drug companies has dried up. Instead of cutting edge research, they simply spend their huge profits telling us how wonderful the existing drugs are or reformulating the drugs in new ways to make them more convenient. Don't get me wrong, I'm not displeased that we have been able to extend life, I'm displeased that we have lost the sense of urgency and America thinks that AIDS is over. It is not. It just takes somewhat longer to die than it used to. Current AIDS drugs are inadequate and outdated.

And healthcare for AIDS is slipping as well. When a patient and their doctor suspect cancer, the patient is referred to an oncologist who carefully operates and performs a biopsy to determine what kind of cancer it is and which drugs will be effective. The patient then goes onto various extremely regulated drug treatments or chemotherapy with rigorous blood monitoring and close observation. After a given drug or treatment cycle, the cancer specialist re-evaluates and determines the next course or action along with the patient and his or her family. This is not the case with equally fatal AIDS. You go into any old doctor's office, see your HMO-mandated doctor (most likely a family or general practitioner) for maybe 15 minutes, and walk out with a handful of drug prescriptions and an order for lab work. Sort of like getting chemo in the lobby of a fast food restaurant.

What kind of virus do you have? Who knows? Is it already drug resistant and to which drugs? Your insurance will only pay for this kind of information once in a blue moon. Does your immune system have a natural ability to fight your type of virus? Again, who knows? One cannot readily have tests run to answer that unless they are being studied by the National Institutes of Health. Are my drugs working? Maybe, but we can't always tell for sure, until you lose a big chunk of your immune system. Are my drugs trying to kill me? That depends; how are you feeling today? Is that liver pain, gas, or mitochondriosis? You need more information but it is not available. Sorry your 15 minutes are up.

And so it goes. Eventually you learn the best emergency rooms to visit in your area and start shopping for a viatical company to buy your life insurance.

What are the drug companies doing to help, one wonders? Open any gay magazine and see the major drug company ads depicting sexy people living, thriving, partying, and having sex with AIDS. They climb mountains (without nearby toilets) and sail across oceans while popping handfuls of happy AIDS pills. Surely AIDS is no longer a bad disease. And check out those young handsome "come love me" AIDS drug models. If I take the drugs will I have sex too? Of course you will, unless you become disfigured by lipodystrophy or find yourself on dialysis. You can always date in between IV therapy and emergency room visits. Pardon the sarcasm but the point is this: The image presented in the media depicting AIDS patients is a lie invented to sell AIDS drugs. Living with HIV sucks. It starts out sort of okay but it goes downhill much too quickly.

Which leads to the final insult: Denial. Because people think AIDS is over or managed, they are probably not having enough safe sex and more people are going to get infected. Add to this the cultists who claim there is no such disease, and the sexy AIDS drug magazine models and we have what is just now coming into view -- TV news documentaries which announce: "You thought AIDS was over, but it's not, and it's getting worse."

So happy World AIDS Day. The world does not need AIDS, yet it spreads out of control. Having AIDS is no picnic, and it is as far as I can see, still fatal. If you don't have HIV, play safe and don't take chances. If you do have HIV or AIDS perhaps it's time to get involved. It does not appear that the government or the drug companies are in any hurry to cure this disease.

001130
BR001122

Always watch for outdated information. This article first appeared in 2000. This material is designed to support, not replace, the relationship that exists between you and your doctor.

AEGiS presents published material, reprinted with permission and neither endorses nor opposes any material. All information contained on this website, including information relating to health conditions, products, and treatments, is for informational purposes only. It is often presented in summary or aggregate form. It is not meant to be a substitute for the advice provided by your own physician or other medical professionals. Always discuss treatment options with a doctor who specializes in treating HIV.

Copyright ©1980, 2000. AEGiS. All materials appearing on AEGiS are protected by copyright as a collective work or compilation under U.S. copyright and other laws and are the property of AEGiS, or the party credited as the provider of the content. .