AIDS In America - 20
Years And Still Killing
By Jeff Getty
Survive AIDS Writers' Pool
Recently I had several conversations with television producers from CBS's 60 Minutes and A&E's Investigative Reports programs. Both networks are planning major AIDS stories to be aired in coming weeks. It seems that both news teams have come to the same conclusion: "You thought AIDS was over? Well, think again, it's not." Both networks based their stories on three predominant themes that producers identified in their research: First, most people in America think that AIDS is manageable or has been cured. Second, many people in America no longer consider AIDS a personal threat. Third, AIDS drugs are extending life but in the long run, they may ultimately contribute to the patient's demise.
In the past year, two extremely well-informed, prominent AIDS activists died from AIDS complications. Both of these people had the very best healthcare and access to information in fact, they both wrote about AIDS treatments) and both had been long-term survivors of AIDS. Yet they still died. One cannot reasonably expect to survive AIDS by one's wits.Using one's wits to stay alive is an excellent tactic, but we are not yet far enough along in the development of effective, low-toxicity treatments to think that AIDS is manageable or survivable. It is neither.
In the past year, more and more information has surfaced about the long-term toxicities of continuous HIV therapy. The news is not good. HIV drugs are implicated in the development of HIV-associated lipodystrophy and heart problems, bone loss (hip replacement) and intercellular malfunctions called mitochondriosis and lactic acidosis. Liver and kidney dysfunction and failure are also Commonly seen in ADIS. Add in the various opportunistic infections and the toxicities of the drugs required to treat them and you will find many surviving AIDS patients have become multi-drug resistant to all aAIDS drugs and many antibiotics. These patients, (myself included) require stronger and more toxic remedies month by 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 or how well an HIV-infected patient can expect to live. Because 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 5 or 10-year death sentence has been reprieved for many on treatment. But how long before 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 Interruptions (STIs)," 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 you will face death from the ravages of prolonged HIV infection.
Since 1996, there have been little or no true advancements in the drug arsenals. We still have the same 3 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 drugs in that class. AIDS patients know this sad fact all too well. A new drug called T-20 is in the pipeline. It is an adhesion inhibitor and appears to be non-toxic. It will barely make it to market. But the overall groundswell of innovative, active research on 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 these same drugs to make them more convenient to use.
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 about AIDS treatment, and America thinks that AIDS is over. It is not. It just takes somewhat longer to die than it used to. The current crop of AIDS drugs is inadequate.
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 on various extremely regulated drug treatments or "chemotherapy" with rigorous blood monitoring and close observation. After a given drug or treatment cycle, the cancer specialist reevaluates and determines the next course or action along with the patient and his or her family. This is not the case with 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. Next. It's sort of like getting chemotherapy in the lobby of a fast food restaurant.
What kind of virus do you have? Who knows? Was it already drug-resistant when you became infected, and to which drugs? Your insurer will 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? Patients cannot readily have tests run to answer that question unless they are being studied by the National Institutes of Health (NIH).
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 killing 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. Surly 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 kidney dialysis. You can always date in between intravenous 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 ok, but it goes downhill much too quickly.
Which leads to the final insult: Denial. Because people think AIDS is over or manageable, they are probably not having safe sex all the time and more people are going to become HIV-infected. Add to this the cultists who claim there is no such disease as AIDS, 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.

This Site Served by TheHostPros