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are we living or dying
Jun 13, 2006

Hey Dr. Bob,

I'm recently diagnosed HIV positive. Not exactly sure when I got it. The bottom line is are those of us infected living or dying??? I thought you would be one of the few people who would give us an honest answer!

Mr. X

Response from Dr. Frascino

Hello,

Mr. X (not to be confused with "Madame X," one of my favorite old movies), you pose what would seem to be a straightforward question; however, in reality, the answer is anything but! I can't tell you the incredible number of times I've been asked in this forum or by patients and friends who have just learned of their positive status: "Is this a death sentence or will I live a normal life span?" The "honest answer" you request is: for any one individual, we really don't know.

Let me try to explain. First off, by way of disclaimer, I'll admit I'm the most optimistic guy on the planet. Since the introduction of potent new anti-HIV therapies (HAART, highly active antiretroviral drugs) in mid-1996, there has been a cataclysmic shift in HIV/AIDS morbidity and mortality. The new life-sustaining therapies really are that phenomenal. However, I must also point out that not everyone who gets treated responds to the drugs for a variety of reasons. Also important to note is that not everyone who gets infected with HIV even gets sick! Certainly most people have a more predictable course of becoming infected and then over time progressing from initial infection to progressive immune deficiency to life-threatening opportunistic illnesses at a fairly predictable pace. With treatment most, but not all, head right back in the other direction toward improved health and immune reconstitution. The confusing reality remains that even without aggressive treatment a small minority of HIV-positive folks just seem to stall along that road to progressive illness defying the usual dire predictions while others do not seem to respond to HAART with the predicted improvement health. In essence what lies ahead for any one individual remains, to a certain degree, unknown.

What worries me is that many newly diagnosed pozatoids (and Americans in general for that matter) automatically assume new treatments will make everything all right again. So are we living or dying? Early in the epidemic that was indeed an easy question. We were dying. Now, however, the reality is far more complex. You might see a fellow HIV/AIDS patient who does not look very well, based on his puppet-cheeked skeletal facial features; thin, veiny arms and legs (lipoatrophy) and his protuberant abdomen (lipohypertrophy). From the outside this guy looks sick; however, he just might be the "healthiest" guy in the HIV-support group! His viral load may well be undetectable and his T-cell count, in the normal range. A decade ago this guy was unquestionably dying of AIDS; however, today, due to his HAART, he's definitely living with it. Paradoxically it is his life-sustaining drugs that have restored his immune system back to health while simultaneously transforming his appearance into something far from "the picture of health."

It is indeed bizarre that this gentleman's appearance would suggest fatal illness when in reality he may well lead a long life if long-term drug side effects and toxicities can be controlled! Now compare this guy with another guy who might be in the same AIDS support group. The guy is a gym bunny with muscles bulging from his shirt and he appears to be the picture of health. A decade ago he, too, was dying of AIDS, but now he's thriving on the new drugs with minimal if any outward side effects. To look at him, dance with him, have sex with him, no one would know anything is wrong. However, this is really an illusion. His blood tests may show his immune system has deteriorated into dangerous territory, leaving him susceptible to opportunistic processes, and that his HIV virus is resistant to all four AIDS drug classes. His bloodstream may be full of sugar and fat, damaging his heart, liver and kidneys. And yet at the moment, he's the hottest, healthiest looking stud in the room.

Now in between these two extremes are other folks scattered across the spectrum men and women who cruise along on their meds with no problems whatsoever; those who never can tolerate them or get the predicted response and progress to AIDS and death, despite our intervention; those who never take their drugs properly for a variety of reasons and slowly deteriorate; those who refuse therapy until it's too late; those who may never need them at all; those who survive AIDS to die of other illnesses, such as lung cancer or breast cancer and even those few how are killed by the HIV medications themselves. The spectrum is full of every imaginable possibility and outcome.

So to answer your question, there is no doubt we are light years away from the bad old days of the early epidemic, and being the most optimistic guy on the planet, I can say we should all have a very optimistic view of the future. However, that optimism must always be tempered with a healthy dose of reality as well. We've seen, and some of us have experienced, medical miracles; however, for each individual facing this health challenge 25 years into the epidemic, there are unfortunately no guarantees and this is the honest truth.

I wish you well on your individual journey.

Dr. Bob



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