chronic manageable disease
Dec 5, 2010
Dr. Frascino, I keep hearing that hiv is now a chronic manageable disease. My question is: Is it really? Whenever I read literature it always says if you keep your viral load down. But what if you can't keep it down? What if none of the medication works? I do not see how anyone can claim that there is a normal life expectancy. I guess I am just scared and it doesn't seem like there is going to ever be a cure. At least not in the next 100 years. I know that you deal with it everyday and I don't know how you keep on going. Jason
Response from Dr. Frascino
I addressed this topic in one of my blogs for this site: "A Chronic, Not Always So Manageable, Condition." I'll repost it below.
A Chronic, Not Always So Manageable, Condition By Bob Frascino, M.D. February 16, 2010
I'm undoubtedly the most optimistic guy in the galaxy, bar none! Really, I am. For instance, you know how some people are cup-half-full folks and others are cup-half-empty folks? Well, I'm a cup-runneth-over kind of fellow. Yet despite my unabashed and unbridled optimism about essentially everything in existence, I'm beginning to think the term "chronic, manageable condition," when applied to HIV/AIDS, may be overly optimistic or at least misleading, particularly for many of us who are positively charged and struggling to coexist with a virus that wants nothing more than to plant us six feet under!
While I freely admit that many of us who are virally enhanced no longer feel we have one foot in the grave and the other on a banana peel, I wonder: Do we really have a "chronic, manageable condition?" (I'm still new to this whole blogosphere thingy and commencing today's entry with a provocative prologue followed by an open-ended question suddenly makes me feel like Carrie Bradshaw at the start of a Sex and the City episode, typing away on her Mac in an uber-chic strapless fashion-forward empire-bodice camisole leotard and Prada cha-cha heels. But I digress. And besides, I'm dressed in trendy Rock and Republic jeans, Pumas, tank top and hoodie, just in case you were wondering. And before any of you ask, 2xist boxer-brief tighty-whities.) Now where was I? Oh yeah, chronic manageable conditions.
Personally, I tend to think of halitosis, hemorrhoids or even "the heartbreak of psoriasis" as examples of chronic manageable conditions. But HIV/AIDS? I'm not so sure.
One recent day, a number of real-life HIV/AIDS stories crossed my desk and they have fortified my position vis-?-vis HIV/AIDS as a chronic, but not always so manageable, condition. Let me, first, set the stage for this discussion and then give you a firsthand view from several HIVers who contacted me that day.
I received a very kind e-mail from a journalist who wrote a feature article about me several years ago for a local newspaper. She wrote to graciously volunteer some of her time to help The Robert James Frascino AIDS Foundation. (Megan, if you're reading this blog, it's great to hear from you again and I'll give you a call within the next few days!) In preparation for her March 2007 article, I recall we spent considerable time discussing how HIV/AIDS had become a much more treatable ("manageable") illness with the discovery and availability of potent combination antiretroviral therapy in the mid-1990s.
By way of comparison, I remember referencing a cover story written about me for the magazine section of the San Jose Mercury News in 1996, which carried the headline "Robert Frascino, M.D.: Casualty of War." It was a terrific article, but I would have preferred something along the lines of "Wounded in Action" for the title. Nonetheless, in 1996, just prior to the release of the first protease inhibitors, when the San Jose Mercury News article appeared, HIV was indeed a death sentence with a short shelf-life. I, like everyone else at the time, anticipated the virus would snuff out my life on this planet within a few short years. My, how things had changed within the few years that passed between these two feature articles.
There could be no doubt the new drugs had been nothing short of miraculous. After all, I was still alive, right? And not only had I survived, but I had thrived! So the focus of the more recent article reflected the reality of having, for the first time since the onset of the pandemic, effective treatment to combat the virus.
Much has been written over the past several years exclaiming the virtues of these life-sustaining wonder drugs while simultaneously proclaiming that HIV/AIDS has now become a chronic, manageable condition, like hypertension or diabetes. Antiretroviral drug advertising campaigns fueled this notion with glossy photos suggesting that taking pills would transform a frail HIVer into a sturdy, studly mountain-climber or sexy javelin-thrower. Is it any wonder that John Q. Public absolutely believes HIV/AIDS is a chronic, manageable condition? But is it really???
Also that day I received an e-mail from an "out HIV+ gay M.D." in a rural part of the country. He wrote:
"I have a male (straight) patient I have been seeing for 15+ years. Over the years he has had aseptic necrosis of both hips, both shoulders, and now the knees. (now opioid dependent from pain control) But most importantly at the moment, his 35" abdomen of 15 years ago is now 52" at the widest part (several inches about the navel) and he is losing balance because of this odd collection of weight, not to mention GI upset, short of breath etc. Do surgeons ever 'de bulk' all this visceral fat? It needs it because this is much more than 'cosmetic' and is severely compromising his quality of life. Thanks for any thoughts or advice."
Is HIV really a chronic, manageable condition for his patient? The answer to his query is not all that encouraging. HIV-associated central fat accumulation, visceral abdominal fat (VAT), is not amenable to surgical intervention. And there are no FDA-approved drug therapies for this condition. Lifestyle modifications (diet and exercise), as well as switching antiretroviral therapy, have had very limited success in reducing VAT. One drug, metformin, did show some benefit at reducing VAT, but accelerated peripheral fat loss (lipoatrophy). Neither testosterone nor thiazolidinediones has led to significant improvement. Recombinant human growth hormone (rHGH) has demonstrated some improvement in two large clinical trials. However, this treatment is costly and can be associated with significant side effects. The improvement seen was also temporary. There are some promising data using growth hormone releasing hormone (GHRH). My advice was to try to enroll his patient in a clinical trial of GHRH if he qualified.
That same day I received a question in my inbox in The Body's "Ask the Experts" forum from a woman who calls herself "Mommy of Three." This unfortunate woman is struggling and her chronic condition is far from being managed. I encourage you to read her post in full detail. She deals daily with health issues as well as life circumstances and past traumas that make effective HIV care virtually impossible for her. (If someone has ideas to help her, please feel free to comment!)
Later that day, another physician contacted me. He'd recently seroconverted to HIV positive. He wrote: "I find it very difficult to trust who to talk about this with. In fact I think this is the first time that I even put it in writing." He wanted to get in contact with me, for "some guidance from a physician-to-physician point of view," but he wanted us to only talk on the phone because of his "concern about the confidentiality of email communication."
I can think of no other chronic medical condition that would instill such fear. And what about HIV/AIDS's other "unique" facets, such as stigmatization, difficulties finding competent, compassionate health care, problems with employment, alienation from friends and family, disclosure issues and even criminalization? (Note to self: These are all nifty, bloggable topics. Note on note to self: Check to see if "bloggable" is a word.)
At the end of the day I received a question from an HIVer who complained his HIV medications were giving him intractable diarrhea and explosive gas. Further details revealed this was not your run-of-the-mill "Hershey squirts" and "trouser coughs." Rather, his pop-a-vein-in-your-forehead poopies would make Montezuma's Revenge seem like a case of constipation. And his "gas" was setting off sonic blasts so loud, I'm convinced he'll be getting fan mail from the seismographic people here in California for the next month.
Chronic, manageable conditions? Maybe not-so-much for these folks. And they are only the ones who contacted me that particular day! I have much more to say about this topic and how the "chronic manageable condition mantra" may actually be hindering our HIV prevention efforts. I invite you to stay tuned for "A Chronic, Not Always So Manageable, Condition, Part II."
As for what's left on my to-do list for tonight, I need to respond to the folks mentioned above: the chronic-not-so-manageables.
Robert J. Frascino, M.D.
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