Jun 14, 2006
Dr Bob, I think anyone without HIV would have a hard time understanding the amount of mental positivity it takes to stay hopeful living with this disease. I try to be as realistic as I can without losing hope and there is one thing that I keep coming across that confuses me. Time and time again we read "HIV/AIDS is no longer a death sentence". How can that be a correct statement when no one can seem to give us any certainty past two decades maximum? (If we're lucky??!?!) One may think "20 years - thats a long time", but for us, we are still being told we will die earlier than we expected. Why do people not write, this is not an "immediate" death sentence? It has been when I have read "HIV?AIDS is not a death sentence" time and time again, that gave me unrealistic hope that I'll be sitting around in a rocking chair on my porch at 80 (I'm now 30) with my life partner because all I have is a disease like diabetes that just needs management and taking care of myself?
Thanks Dr Bob. (I did ask BY this as well, as you are both my faves, and to hear your different views on this would be terrific)
Response from Dr. Frascino
While there can be no doubt we have made phenomenal strides in the treatment of HIV/AIDS since the introduction of HAART (highly active antiretroviral therapy) in mid-1996, the reality of the situation is that no one can predict the future. We can effectively turn off HIV viral replication in most HIV-positive folks, but we've still never cured a single person of HIV/AIDS. Since our potent new medications are so new, we do not know the long- (or even medium-) range drug toxicities and side effects. None of us ever expected lipoatrophy, lipohypertrophy, peripheral neuropathy or the wide range of metabolic abnormalities that have developed as a consequence of (or at least been exacerbated by) the new medications. So while I remain extremely optimistic about the future, I also remain realistic as well. I answered a few questions recently that touch on this topic and will repost those responses below.
For now, let's at least plan to get through this together and occupy a few of those rocking chairs on your porch as octogenarians, OK?
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!
Response from Dr. Frascino
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 pozitoids (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.
How do you do it? Jun 13, 2006
Dr Bob, There's no need to tell you how much we all love you, I'm sure by the truckload of emails you recieve you know "inspiring" you are to all of us. You are always giving advice, but my question is....how "did" and how "do" you cope with your diagnosis and co-exsisting with hiv? You must have an incredible mind set of positivity, or some other secrets we arent aware of, as you are always sooo seemingly happy and strong in your life? Do you put things down to the knowledge you have being a doctor? Love, family and freinds? Large support groups (like us who adore you)? We would love to know the many secrets you possess to coping with hiv so incredibly well. There are a lot of us trying to find a way to live with this "frightening" illness. Also, do you have a lot of faith and hope in how the meds will be over the next 5 - 10 years? do you believe we will come to live with this as those do with diabetes - a more "guaranteed long life with less illness and infection"? I'm sure these are questions every reader on here wants to hear from you.
Thanks Dr Bob.
Response from Dr. Frascino
"An incredible mind set of positivity . . . ???" Hmmm . . . well, I will say I'm one of the most optimistic (and realistic) people on the planet and very "positive about being positive."
Being an HIV specialist does help me understand the illness, but "love, family and friends" help me survive and thrive with it.
As for secrets that help me cope with the challenges of being "virally enhanced," I have always found that helping others who are in need is not only rewarding beyond belief, it's also the best way to keep my personal challenges in their proper perspective. Adaptability is also important. Life, love, sex, illness and our eventual transition to whatever is next are all a series of unscheduled events! In life, as in cards, we can't choose the hand we are dealt, but we can choose how to play those cards! It seems to me a truly content person is one who can enjoy the scenery, even when forced to take an unanticipated detour! Even with HIV, I find life is full of passion, meaning and commitment. If I were to die today, I'd say I had one hell of a good ride. If I don't die today, I have an unlimited list of things to experience and accomplish that I look forward to with great anticipation.
George Bernard Shaw captured my sentiments exactly when he wrote:
"This is the true joy in life, the being used for a purpose recognized by yourself as a mighty one. The being a force of nature instead of a feverish, selfish little clod of ailments and grievances complaining that the world will not devote itself to making you happy . . . . Life is no brief candle for me. It is a sort of splendid torch which I have got hold of for the moment, and I want to make it burn as brightly as possible before handing it on to future generations."
Am I optimistic about treatment options over the next 5-10 years? Absolutely. What saddens me is that only 10% of those in need are even getting the treatments we have available today. It is harder to be as optimistic about their future.
Do I believe HIV will become another diabetes? No, I do not. This has nothing to do with "treatability" or becoming a "chronic manageable disease," but rather with the fact that HIV/AIDS, for all the wrong reasons, has been stigmatized beyond belief. I view the challenges of HIV to be far greater than merely coexisting with the virus. I welcome everyone to join me in confronting these daunting issues. Perhaps that's the real secret of coping with any personal crisis looking beyond our personal self interest in an effort to improve the common good.
Stay well. Don't be frightened. Get involved.
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