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.
Want to get in touch with Dr. Bob? You can reach him through his "Ask the Experts" forum, by sending a message to the Robert James Frascino AIDS Foundation, or by leaving a comment for him below. (If it's a private message, or if it includes personal info such as your e-mail address or phone number, we won't post the comment, but we will send it along to him.)
Comment by: Janet Madsen
(Vancouver , Canada)
Fri., Apr. 9, 2010 at 1:35 pm UTC
Thought this post was great- thanks so much. I work with pos. women, and many would echo the "not so chronic manageable" reality. So much that I blogged on it (shameless plug!): http://pwn.bc.ca/2010/04/chronic-manageable-optimistic/
Thanks for your candour and caring on your blog and other pages on The Body!
Comment by: Mark
(Rural New Mexico)
Sat., Mar. 27, 2010 at 12:10 pm UTC
Hey Dr. Bobm
I thought your blog was well done and timely. I see where some newly infected take umbrage with your assessment of HIV as a manageable disease. I also note most are newly diagnosed, that is to say, less than 10 years.
I tested positive in 1985, started meds in 1996 (escaped monotherapy, thank goodness) and took AZT, 3TC and Crixivan for 11 years, and was happy to have them. I still am.
But I also am living with neuropathy, some degree of lipoatrophy and a big chunk of lipohypertrophy. (No pun intended, but, on a positive note, thanks to the neck growth, I can do a smashing impersonation of Jabba the Hut!)
The effects of years on meds and at least 25 years living with HIV are extant and obvious in my case.
Now, these are being augmented by the onset of aging, which itself is being accelerated by living long-term with HIV.
I don't mean to rain on others' parades, but surviving long-term with this "manageable" disease isn't for sissies.
I think you hit the nail on the head bob.
Comment by: Renee
Thu., Mar. 18, 2010 at 5:40 am UTC
Dr. Bob, I wanted to begin by telling you how much I enjoyed your blog.
I recently posted a question to you on "The Body" entitled "Yeast: Myth or Fact?" You answered me within two days, and were extremely helpful. Thanks again!
Anyhoo (getting to the point here), I frequently answer questions about sexuality, STD's and testing methods on Yahoo Answers. I see many questions from young adults (teens through 20's) who seem to feel they are immune to infection because they're heterosexual and look healthy.
I was surprised to see many questions from senior citizens who are clueless about the disease. Thanks to Viagra, hiv is running amok throughout retirement communities in Central Florida. Grandpa visits a hooker, and everything goes to hell, "Mildred, we need to have a chat...."
I'm hoping that in one of your upcoming blogs, you will discuss the idea of hiv testing as part of regular physicals. Teenagers and seniors are especially vulnerable, yet are the least likely to go and get tested (which I'm sure you already know).
Once again, thanks for all you do. You're a lighthouse to the millions of people who have (or suspect they have) hiv.
I look forward to following more of your blog entries!
aka Tested To Death
Comment by: Dr. Bob also (sorry, but true)
Thu., Mar. 4, 2010 at 6:21 pm UTC
Sorry Robert, and sorry all you posting fans -
This will be the second posting from me, but the first installment. I remain a "blogging virgin" and technoligically challenged. Never was a problem before, however.
Have been readind "The Body" for about tow years. Why I have been doing that is another, long story, suitable only for a small table in a quiet cafe with a beer or two. A milieu not available at the present time. And, importantly I think, not relevant to this response.
I have LOTS of intertwined, confused, possibly personally too subjective thoughts after reading your posting. All of which I have felt before, but maybe without the focus your apparent angst provides. Most fundamental of whic: Who in their right mind would ever believe that the fact of HIV longevity status, spectacular as it is, could equate with this being a "manageable chronic disease"? Akin to DM, HTN, hemorrhoids??
Your blogging seems to have opened up a new or maybe an older, darker window on the reality of this infection; or perhaps it just invited a paragigm shift within a paradigm - of which you are a consummate expert.
Okay -- too erudite even for me.
The situation and future for many with HIV is not so bright or easy. For many, it is not a "manageable chronic disease." It can be a very scary, unpredictably frustrating, rapidly-changing, debilitating fate.
02:00 a.m. here now, and I have work in a few hours. This is nly a part of the first attempt at responce to your blog, Robert. I will try later (tomorrow) to finish this first part and to compile a last, third part. The middle, it seem, you already have.
My apologises to you and to your interactive readers who will likely not be able to follow all of this - my "train of thought" in three movements - non sequitor.
Sorry. I'm not good at this. It's all your fault, Robert.
"bloggable' is a word. If it was not before today, it is now.
Comment by: Dr. Bob also (sorry, but true)
Thu., Mar. 4, 2010 at 5:50 pm UTC
Here again - I feel that I should apologise for this concerted, protracted interaction; this intrusion into your personal blog / catharis -- but I won't. You put yourself out there. For a lot of good reasons, I think; and for insight to come. So, now you can deal (or not) with me. Your choice.
Still not sure you will get this, or that you will receive the first installment sent a few minutes ago. Who knows? The vagarities of the interactive information world rivals the vagarities of the HIV information world.
And I am in Russia. Who am I to criticize? I lived fine for many years without need for either.
But that was before "Gay Bowel Disease" in San Francisco and New York, in the early 80's, and what was to follow. (I was obstensively studying medicine in NYC in during those times.)
BUT -- to attempt to finish a blog response that I am not even sure you will ever get, I continue:
First: I don't really care what you wear - it's all good. "Pipes" are impressive. Kudos. Personally, a satisfying result for sure, not to be discounted, but not relevent to this discourse.
Second: (and I can see my internet interface giving me, yet again, terminal limits)
I'm not a "cup-runneth-over" kind of guy; not just yet. I gave up the "half-empty" outlook a long time ago. And, I have worked to move past the "half-full" outlook. (Stupid outlook, I think - like declaring oneself to be an agnostic. A fence-sitting, lacking committment,"cover your bets" kind of position.)
"Сup-runneth-over" is where we should all strive to be. It's not a position, or a platform from which to pontificate; it's a goal. An ultimately unreachable goal; but a goal, the relentless striving for which, shows us the tools for the only way to meet life's challenges. HIV or otherwise. Or so it seems to me.
111 remaining; 92
Just enough to close this second installment and start the last.
Comment by: Dr. Bob also (sorry, but true)
Thu., Mar. 4, 2010 at 3:51 pm UTC
Have been reading The Body for about two years. Why I have been doing that is another, long story, suitable only for a samll table in a quiet cafe with a beer or two. A milieu which we have not at the present time.
I have LOTS of intertwined, confused, possibly personally too subjective, and even intellectually raging thoughts and ideas after reading your posting. All of which I have felt before, but maybe without the focus your angst provides. Most fundamental of which: Who in their right mind would ever believe that the fact of HIV status longevity (Hurrah for this !! of course!!) could equate with this being a "manageable chronic disease"? Akin to DM, HTN, tak daly, tak daly.
Your blogging seems to have opened up new or mabe older, darker windows on the reality of this infection, or perhaps just invited a paradigm shift within a paradigm of which you are a consummate expert.
Okay; too erudite even for me.
Yes, the situation and future for many with HIV is not so bright or easy. For many it is not a "chronic manageable disease." It can be a very actively scary and unpredictably, frustratingly, rapidly-changing, debilitating fate.
The current and future knowledge and treatment for HIV IS a God-send for thousands, perhaps millions - you know this personally and professionally. Most just persevere and take value in their continued health. Some write to "The Body." Almost all of these, I would imagine, have access to an HIV specialist to help them navigate their infected lives in the context of the ever-changing body of evidence for treatment. As you have done for (what) 17 years? Not sure of that number, but I won't go back to your previous blogs to make sure. Doesn't matter.
What seems to matter just now is that this interactive interface is telling me that I have to stop.
113 characters remaining. Now 89. Could be a very efficient, self-extnguishing program? 22
ths snt now. mor to folw i hop?
Comment by: Bob
Thu., Mar. 4, 2010 at 3:03 pm UTC
Thanks, I have had a pretty rough week. Your entry helped me reinsert righteous indignation for the guilt I have been feeling for going on short term disability for debilitating fatigue my Dr. is telling me has no medical justification. HELLO, tell that to the other travelers on the interstate as merge into traffic exhausted from 5 hrs work with the focus of a 5 yr old watching Masterpiece Theater. Cooking? cleaning? sitting down and paying bills-- sure as long as I don't have to get off the couch after an hr of it. Perhaps someone could explain neuropathy is manageable on one of the fairly rare days I have to hang my feet off the bed to help calm the hot pepper burning. I think I'll open my window tonight and yell- I'M HOWARD BEAL AND I' MAD AS HELL!~~ Well off to see the Therapist I guess I have something to talk about tonight.
Comment by: Scott
Fri., Feb. 26, 2010 at 1:22 am UTC
Thank youfor this article Dr. Bob. Love all the comments too. All points of view make sense to me. Each of us has our own perspective given our circumstance in life. If I get nothing more from the article and comments, it really gives me comfort to know my conflicted feelings about my HIV+ condition are shared by so many. I'm optimistic one day, down the next. Feel good one day, bad the next. Manageable -- I don't relate to this word, I just try to get through the day. Face it my fellow positive friends, being HIV+ sucks! (and I'm sticking to it)
Comment by: Terry
Thu., Feb. 25, 2010 at 11:45 pm UTC
To others posting here, I'd like emphasize that our individual experiences with HIV are not representative of the entire population of people with HIV. You may be doing well, I may be doing well, and the next guy/gal may be doing well. That's (three words), FA-BU-LOUS! Our experiences, however, are just that – our experiences. It's a slap in the face to those who’ve succumbed to HIV over the years and those who are still struggling with it, for us to proclaim that our individual experiences with HIV mean it’s a "chronic and manageable" disease when, as you can see from some of this blog, there are people who aren't managing well. If there were just ONE person not doing well, I still wouldn't make the claim that some of us are making. And If there were only a few people here-and-there who weren't able to "manage" this disease as well as you or I, then there wouldn't be the need for AIDS Service Organizations in every major city across the nation that are filled with clients accessing mental health, legal, housing, nutritional, medical, employment, benefits and home health care services to help them feel SOME sense of normalcy as they "manage" this disease. And there wouldn’t be the need for TheBody.com Web site. My intent is not to sound gloomy. I just subscribe to the adage, “Expect the best, prepare for the worst.” To do that, you need the truth. “HIV is a chronic and manageable disease” for EVERYONE, is NOT truth. And when we propagate this false sense of security, we are enabling the HIV/AIDS apathy in the GLBT and Heterosexual communities today. HIV apathy inhibits HIV prevention.
Comment by: Terry
Thu., Feb. 25, 2010 at 8:52 pm UTC
To "End-of-my-rope (Salt Lake City)": Please contact Nancy Breuer of WorkPositive, Inc. and also here on TheBody at: http://www.thebody.com/Forums/AIDS/Workplace/index.html She is an excellent source for you in dealing with your employer. She's VERY compassionate about the issues we face in the work environment, and VERY knowledgeable, as well. Because you are HIV-positive, you are protected by the Americans with Disabilities Act and your employer must provide you with a reasonable accommodation (in your case, probably a flexible work schedule to allow you to arrive later on mornings you have medical issues, more frequent bathroom breaks while you're at work, etc.). HOWEVER, you MUST inform your employer that you have a serious medical condition that you need their assistance with. They are probably aware that something is going on (and this could be argued in court if they were to let you go), but be proactive and put them on notice by providing them with a letter from your doctor. Make sure that you can prove that you gave them this notice with specific requests for what will work for you. Your doctor should be your advocate in this endeavor - make him/her WORK for you. I went through this just last year with my employer and ended up filing a EEOC complaint against them for failure to comply with my request for an accommodation for the exact same things you are currently experiencing. My employer finally rearranged my schedule so that on days that I'm experiencing side effects from the treatment I MUST take to survive, I can arrive at 12pm and work until 8pm. They also moved my desk closer to the bathroom so that I could make it there on time. It was a VERY scary process that took a LOT of my time, but I fought for my rights...and WON. I'm still employed there and they've made many changes to allow others with medical needs to have a flexible schedule. It benefits both the employer and the employees. Be well, and best of luck to you.
Comment by: End-of-my-rope
(Salt Lake City)
Thu., Feb. 25, 2010 at 7:47 pm UTC
Dr. Bob. I hear where you are coming from. I have been positive for 5 years, progressed to an "AIDS" diagnosis about a year ago. I suffer from the most painful stomach cramps and diahrrea every morning. It's gotten to the point where I dread going to bed because I know how hard it will be to get up. I'm on the verge of losing my job because I can't get away from the toilet to get there on time. I've begged and pleaded with my doctors to find the cause. They've removed me from all HAART therapy, taken enough blood to make a B horror movie, and the most wonderful, degrading part is that they keep "losing" my stool samples before they can get results. Still miserable and can't even get them to treat the symptoms so I can function. I'm exhausted, I'm depressed, and I'm running out of patience. Does "manageable" mean miserable? Or am I missing something here? Running out of hope, patience, and purpose.
Comment by: Phillip
Thu., Feb. 25, 2010 at 4:45 pm UTC
To rebut some comments about my response. My heart disease is strongly genitic/family related and was very likely 10-15 years ahead of scheduled due to HIV and meds. but very inevitable. The hip replacements, not so and highly likely HIV related. So , bottom line; am I the somewhat the worse for wear having HIV 28yrs/20 on meds? Yes. But managing well and VERY pleased to be here still and to have had the life since my diagnosis. Not the life I planned but the one i got. Some posters could perhaps reflect on the troubles of "mom of three" b4 they complain too loudly on theirs...
Comment by: River
Thu., Feb. 25, 2010 at 4:25 pm UTC
To Terry, since you seem to be quoting part of what I wrote.I was not trying to deny what the article said or to state that being HIV+ is just another treatable disease. I just pointed out other realities and I think it is fair to acknowledge both. I am and I think the majority of us is well aware that it is not easy to deal with this condition from both physical and psychological point of view. That said I very much think that is more than fair to tell what improvement in lifestyle and phisyical health have been achieved. I've never ever read or heard an interview to a pyhsician or scientist who would consider HIV no longer a big issue. In fact they the do the opposite. The perception of Hiver in the society needs to change. We can't always act like walking deads just to help prevention! We have our life to live and a mature and modern society has to accept HIVers as normal member of it. How are we supposed to get a job a career, a life if we don't tell clearly what we are capable of doing? Do you think companies would invest in hiring HIV * people if we wouldn't say that their disease is managaable and chronic. This will not deny the difficulties which we have to go through with treatments and side effects but at the same time it says that we're capable of something! I see the glass half full and I am at the same time very concerned with my status and prevention. I don't deny it. I accept it, live with it and try to make the best out of it. For myself and for the people who love me. At the same time it is the duty of everyone to understand the reality and act accordingliy. HIV is a very dangerous disease and you have to do everything to protect yourself but also face the progresses and improvements that have been made. This is the truth and needs to be explained and incorporated into a prevention plan without killing the fear factor. Is this a challange? Maybe but believe me that still today if you'd ask anyone what is his biggest health fear, the answer is AIDS
Comment by: John
Thu., Feb. 25, 2010 at 12:36 pm UTC
I think this article needs clarification. For anyone who has just turned positive, the answer for a large majority of people is yes - it is now chronic, manageable disease.
New drugs, including integrese inhibitors, came out in 2007. They show little or no side effects (Isentress reported no side effects different than the placebo group).
Viral loads are reduced to undetectable usually within months.
Currently, no long term effects are known. Of course, there is always the danger of what LT effects will be with new drugs, but things look very promising so far. And the body shape changes are specifically not expected to occur.
However, LT effects of HIV in the body still exist - most probably accelerated aging, bone loss, greater chance of heart, liver disease, ...
Thus, in general someone newly exposed should live a normal life span, although en masse the population of hiv+ people will not live as long as the hiv- population.
Is HIV manageable for those who have been struggling with this virus for many years? I'm not an expert on that since that is not my personal situation, however I've read that people switching to these new medicines report VAT (abdominal fat) has decreased 13% for those switching to these new medicines, cholesterol and other blood issues subsiding, ...
Thus, a lot has changed in just the past few years. Unfortunately, the information you find online is not always updated just as quickly.
Comment by: Terry
Thu., Feb. 25, 2010 at 11:01 am UTC
I don't think the article reports at all that "HIV is no longer a death sentence." If it does, then the article is wrong. No one with HIV has lived a normal lifespan - yet. I think the statistic is still 56% of all people with HIV have died from the disease. Also, "chronic" means "long-term" or "persistent." HIV is still both "chronic" and "life-threatening." Whether someone acknowledges this truth or remains in denial about it is an internal process that they must negotiate. Some do well with it by taking it seriously, taking care of them selves and others (by disclosing, practicing safer-sex), some don't. In my opinion, when medical community claims that this is just a chronic, manageable disease, there is no respect for the right of the individual to know the truth and there is no trust that they will be able to handle it. And through that "glass half full" approach that is riddled with untruths, people (HIV-positive OR HIV-negative) believe that HIV is no longer something they need to be concerned with. So, they don't protect them selves. They don't protect others. They don't insist on using condoms when they can't disclose beforehand. Why? Because they believe HIV is "just a chronic and manageable disease" that people live normal, happy lives with." Who cares?" This false state not only kills individuals, it absolutely kills prevention efforts.
Comment by: River
Wed., Feb. 24, 2010 at 7:52 pm UTC
Interesting article basically pointing out that a disease is still a disease. HIV is no longer a death sentence as reported in the article. So how do you define a disease that is not life threatening but at the same time not curable? The answer is chronic. This is a fact. As for the "manageable" I have to agree that it always depends on each individual situation but in the end manageable doesn't necessarly mean "easly" manageable. Some people struggle more than other but this is often true also for other managebale diseases. Since I also always see the glass half full I have to admit that I prefer to think of HIV as a "getting more and more managebale" disease. Constant improvement are being made and research (even if it could be speeding up much more) is still bringing new results. Looking at things this way doesn't deny the reality of many of us struggling with HIV but it does a great job helping many of us slowly getting accepted as normal individual who can work and lead an acceptable lifestyle amongst society. For me it is crucial to not isolate ourselves from the society: potentially we can work, be successful and happy and for many it is the case. Both realities need to be stressed and i don't think this is killing prevention against HIV. It's just allowing us to be again part of this world!
Comment by: Concerned
Tue., Feb. 23, 2010 at 4:46 pm UTC
To think that HIV/AIDS will ever be considered a manageable condition is scary to me. I have been trying to manage HIV for 19 years. So far I guess I am winning but only because I am still breathing. That is about where it stops. Yes, maybe some do very well and are managing, but many, many of us are just surviving.
Comment by: Raymond
Tue., Feb. 23, 2010 at 1:03 pm UTC
Dr. Bob: Thank you for saying this with the authority you so rightly exercise. I have felt since I was diagnosed in 2002 that there was a whole lot of pushing our complex issues and health complications into the tidy little catch all phrase: chronic, manageable.Not! We have had our health challenged, our abilities and opportuunities to obtain good, accessible and affordable healthcare undermined by inexperienced providers or systems of delivery not equipped to handle the numbers of new cases. There is a complete disconnect in the unaffected community between the tag of "manageable" which implies to some fewer cases, easier to treat , with the reality of growing case loads, waning funds for the poor (especially in the low-incidence states) and the still present stigma, prejudice, ignorance and incompetetence that we are subjected to on a regular basis. Thanks for drawing attention to a difficult to admit stigma,of sorts, that we cannot change alone but with your willingness and courage to speak out we may be able to convert a few medical providers and sewrvice providers to a more compassionate and caring approach to HIV care.
Comment by: Shon
Tue., Feb. 23, 2010 at 10:19 am UTC
I love you Dr. Bob. I read your responses on the "Ask the Experts" column, because not only do you answer questions with respect and medical expertise, but with a dash of humor that's often the highlight of my day. I'm not HIV positive, but I find myself drawn to your forum daily. While I enjoy your snappy comments, your compassionate advice to many is what keeps me coming back, day after day.
Comment by: Fatima
Tue., Feb. 23, 2010 at 7:11 am UTC
Dear Dr. Bob, I sincerely hope that more focus should be given on the cure for HIV particularly on the stem cell research which saw a 43 year old man being completely cured. What about the research going on?
Comment by: J
Mon., Feb. 22, 2010 at 4:07 pm UTC
You are the prophet of doom...!! yes its not manageable for some...but what about the others..it is fine for them!! keep your articles balances please on not negative
Comment by: teapot
Mon., Feb. 22, 2010 at 11:16 am UTC
@ EJ: If you want to get a message to "Mommy of Three," check out the "Want to contact Dr. Bob?" note at the bottom of the blog entry. try any of those methods of contacting him, and he may have an idea about how to get a note to her -- perhaps by posting on his forum, if the note isn't too confidential. He probably doesn't have her e-mail address.
Comment by: Acyuta
Sun., Feb. 21, 2010 at 11:58 pm UTC
Dear Dr. Frascino
First of all, I am as you say positively charged alongwith my wife and 10 year son (2004 onwards and still on this planet). I owe my life to my physician, the generic drugs (invented in the US), and to the body.com (especially you, Dr. Young, and the other patients) who offered advice and encouragement. As to being `chronic, manageable' condition, it may be so to people not affected, but to us, no matter what the clinical progress we personally have made (and it is a lot in 5 years), the virus has had a permanent impact on our psyche. Nothing gives the jitters and the panic as much as a periodic viral load/cd4 test or an outbreak of some flu. So far, in 5 years of treatment (AZT+3TC+NVP for my wife and son and EFV+TDF+FTC for me), we have had not much side effects that were not manageable with proper planning. However after reading on the net, this may be too early to notice the long term effects that may set in. We have made a choice of living some extra years with those effects. We might fail our first line treatment, and our only long-term hope for our son (who is 10+) is that your country will keep going in not only inventing new and safer drugs, but perhaps one day invent a cure. If you talk to many negatively charged people who read the papers, you would think that it is just round the corner. Could be or could be not for many years or could be when our ashes are already in the Ganges (we cremate our dead).
Comment by: benyusof
(kuala lumpur, malaysia)
Sat., Feb. 20, 2010 at 10:12 am UTC
I was tested positive in June last year and immediately joined a positive living support group. I have seen many of my friends in the group struggling with the side effects of their medications and dreading the day when I have to be on medication myself. However, it also gives me lots of hope and courage when I see them recover from their side effects. Those that two or three months ago could not even utter a word without dissolving in tears are now laughing and sharing jokes. My conclusion is that I do believe with lots of love and support from friends and families HIV is a "manageable disease" and you manage it by developing a whole network of people who would stand by you no matter what.
Comment by: Scott
Sat., Feb. 20, 2010 at 9:28 am UTC
I guess I have to agree with the comments from the positive Poz people on here. Long before I had this virus as a companion my mother had a boss who used to say 'Life kills you'. It wasn't intended to be a negative statement but a pragmatic one. I consider myself fortunet to have gone from a CD4 count of 3 to one of 537. And it hasn't been a walk in the park. Still I have no doubt there are souls long passed from the onset of this pandemic that would take all these side effects and other issues we now face and laugh with glee at to still have air in their lungs. I believe we somtimes forget where we've come from. As the addage goes 'Mourn the losses because they are many, but celebrate the victories because they are few'. I don't meant to sound unsympathetic to those who struggle as I too have mountains to overcome sometimes. Are there days when I feel hopeless YES! But I remind myself that I could be a totally healthy person and get hit by a bus tomorrow. One cannot dwell on all the bad things that can/do/are happening. Otherwise we all (+ & -) would be running for the nearest 20 foot drop. I personally have to and will hang on to the notion that this virus can be overcome. For me that increases my odds IMHO. Dr Bob you keep right on with that 'glass half full'. Because if that's gone then what do we have left?
Plz excuse any typos and such as I am typing this on my iPod. Peace and blessings to all!
Comment by: EJ
Sat., Feb. 20, 2010 at 9:13 am UTC
Where can I leave a comment for "Mummy of 3"?
I can't seem to be able to do it on her post...
Comment by: j.f.
Sat., Feb. 20, 2010 at 1:47 am UTC
Thanks for the article introducing a few of the questions that come with surviving this virus. We do walk around with a variety of "side effects" (god how I hate the benign nature of that term... Obviously created by the marketing departments and not the medical departments...). I was subject to insomnia caused by a number of medications over the years, which if it hadn't been considered merely a side effect, would have been treated as a life-threatening condition. I''ve also experienced dramatic and, yes, life-threatening depression caused by two of the newer treatment options. Had I not been an aggressive patient, and stopped taking the medications, I might now be someone's memory. There is also another side-effect that is harder to discuss, and that is what happens to heart and soul after having the specter of death with you for nearly 30 years. I find that how I view the future (avoid the issue when possible..), career, relationships, all are colored by the virus. I haven''t really found the language to describe it clearly, but, for now, I call it a tired soul. For those of us who have tried virtually all the treatments available, only to find that over some period of time, the "side effects" force us to try yet another combination, we are also living with extreme uncertainty. Rising above, living in the moment, being grateful for yet another day, well, sometimes, I wonder, do we really understand what happens to our souls, when we've lived for years and years only because of modern chemistry. There are side effects....
Comment by: Terry
Fri., Feb. 19, 2010 at 9:59 pm UTC
Regarding the comment by “Phillip (los angeles) on 2/19 @ 12?07 am: Did your doctor tell you that the “3x bypass, 2 stents, body mass changes, accelerated aging and two hip replacements” are all side effects of both HIV and of the antiretroviral medications used to treat HIV? “My point is” that even when someone avoids “cocktails” and “Wendys, Micky D’s, Jack in the Box and Burger King,” as you proclaim to be avoiding, they can STILL end up with all of the nasty conditions that wreak havoc on a person’s physical, emotional, financial, social and spiritual life – especially when they’re 25 y.o. and not supposed to be coping with those issues until they’re in their 70’s and 80’s. You are very young. 57 y.o. is very young to be coping with all of the cardiac, metabolism and joint problems you’re coping with. You may be “coping” well emotionally with everything HIV has sent your way (and that IS wonderful to hear, by the way) but that doesn’t mean you’re managing well. To me, managing well means managing as someone without HIV would managing – someone who wouldn’t be experiencing what you are until they’re in their 70’s or 80’s. Are you alive? Are we alive? Yes. And that’s the great thing about antiretroviral meds. But are you managing like the typical HIV-negative person would be? No. I’m very lucky. I don’t have all of the side effects you (and MANY others) have, but I don’t accuse those who do experience those side effects of doing anything other than trying to live the same quality of life that most HIV-negative Americans live – one with “cocktails” and “Wendys, Micky D’s, Jack in the Box and Burger King.” Please think about that before you blame someone for managing HIV the same way you seem to be.
Comment by: Tom Wills
(San Francisco, CA)
Fri., Feb. 19, 2010 at 9:41 pm UTC
I totally, agree...I've switched doctors five times in the last six years trying to find an HIV specialist who can give me some kind of help with my lipodystrophy problems -- with absolutely nothing forthcoming other than: "You're alive. Just be thankful of that." My neck went from a 16" measurement to a 22" measurement in a matter of two years. I spent $8,000 having liposuction done to my buffalo hump, with partial success. My crix-belly seems to get larger, no mater what kind of exercising I do. Now I'm getting that swollen parotid glnd "chipmunk" look...along with the classic lipoatrophy of the cheeks...I spend most of my time just waiting for the next shoe to fall...becoming more reclusive and suicidal with each passing day...Yeah, "Chronic Manageable Condition" right.
Comment by: Puzzeled
Fri., Feb. 19, 2010 at 4:36 pm UTC
I am not sure what to say when it comes to Dr. Bob, finally he understands that it not a walk in the park for most of us, but he only does that because he is worried that he might be labeled as undermining prevention because he made HIV look like a walk in the park!.... Dr. Bob you puzzle me, sometimes I can swear Pharma. companies have your pictures in their offices because you advocate for them strongly and now I am hoping that your conscience is waking up and you are willing to demand more effort to deal with this illness as it should, no more the highest prices ever for these pills when we don't see any improvement in their quality! This is the issue which I know your response to it will be: Thank God and the Pharma. companies for the drugs we have today, well you thank them , but I wont cuz I pay them a lot of money instead!
Comment by: toonew
Fri., Feb. 19, 2010 at 8:27 am UTC
i laugh, i have only had this disease for a year and i tell you manageable my foot.
i am lucky my viral load is undetectable and my cd4 is in the 900 but without medications but i am not so lucky that i cant diet coz i am scared i will miss an essential vitamin, when i have a normal infection i have to tell a doctor my status and where i come from confidentiality does not exist. chronic is what diabetics have that they take a little injection and its done. i hate that ppl are using chronic coz it trivializes the disease. it means less resources need to be used , it means when we die from complication ppl say she died coz she wanted to HIV doesn't kill this day.
i am an optimist but chronic is not my favorite word.
Comment by: terry
Fri., Feb. 19, 2010 at 12:39 am UTC
The statement, "HIV is a chronic and manageable disease" is a false statement. It's false because it is not true for everyone 100% of the time. A true statement would be, "HIV is a chronic and SOMETIMES manageable disease." For anyone to mislead the public by giving them a false sense of security that they will be okay if they just take care of them self and take their meds is unconscionable. It promotes the HIV/AIDS prevention apathy we see in our community today, after so many have lost their lives to this disease. I've been HIV-positive for 11 years and, although I've been lucky, I've worked for so many HIV-positive men and women over the years who were not. It's BECAUSE I've seen the horrific loss this disease causes for so many people and their loved ones that I refuse to lie to someone and tell them they will be okay when I cannot guarantee it. It's the reason I disclose to every person in my life (not just those I have sex with). When I lie to anyone about the truth about HIV/AIDS, I demonstrate a complete lack of trust in their own ability to cope with whatever life deals them, their ability to take care of them selves, and their WILLINGNESS to take care of our community. Until HIV is truly "manageable" for everyone 100% of the time, we all deserve to hear the truth. As much of a "downer" as you may think that is, you deserve to hear that. You can cope wit it. I have, I'm still alive...and I'm happy.
Comment by: phillip
Fri., Feb. 19, 2010 at 12:07 am UTC
Read Dr. Bob's blog and other 8 posts then reflected on my 28 yrs of "manageing" my HIV. Especially the last ten. Went from just taking meds and forgetting to a 3X bypass, 2 stents, body mass changes, accelerated aging and two hip replacements. Look pretty good for a senior citizen..I'm 57. Was at my surgeon today to track down the source of some intermittent pain in a hip. He explained a condition not uncommon in younger(!),lol, patients with hip replacements and it was transitory and not a problem with the joint itself. My point is this, for HIV to be manageable, one has to be on top of it always as well as with skilled and conscientious providers like a duck on a bug. Take bad squirts. I wonder how many are also adding adult lactose intolerance and no one has offered quitting dairy as a means of control. Yeah, sounds simplistic but I went from drinking one quart+ milk daily OK to full on squirts in a couple weeks. Thought it could be meds but had been on same regimen for months. Thought dairy and asked my Dr. if it were possible to become intolerant that quickly and he said," sure, why not quit dairy and see what happens?" I did and and diarrhea quit. Now, one 8oz cup of yogurt and my dumps fall apart next day. So can/is HIV manageable? Yes, if one see's it as their new full time management position. Pack a day smoker? Think again. Wendys, Micky D's Jack in the Box and Burger King are NOT part of the food pyramid. Fond of your cocktails? Your liver now has better things to process. Think all these changes too your lifestyle are a bitch and inconvenient? YES, they are, and part of what makes HIV manageable. Don't give 110 percent five days out of every seven, relax, simplify your life, and you'll be writing victim letters to Dr. Bob in a few years too, guaranteed.
Comment by: dw
Thu., Feb. 18, 2010 at 11:10 pm UTC
Lots of good comments to the blog....one aspect that i would note is that the virus is more manageable with good care, and good care is not as accessible for some people as others. Even with the best of care, some people are going to respond to meds differently. But affordable, good care by an infectious disease doctor/clinic should be happening, especially here in the US. Many of us complain about the side effects of the meds. while many states, inlcluding NC, has announced the starting of a waiting list for its ADAP programs. How can the virus/disease be "manageable" if those infected can not even get the meds to fight the virus??--now that's probably a whole other blog--Tks for all the positive vibes Dr. Bob
Comment by: Dan
Thu., Feb. 18, 2010 at 10:42 pm UTC
Red, good post. I was only diagnosed as positive a short time ago, back in September of 2009. Unfortunately, I had apparently had the disease for years but was never tested because I didn't fall into one of the so-called high risk groups. When I went to the doctor with severe fatigue and was referred to a hematologist, I found that not only was I positive by my t-cell count was 60. So much for all those annual physicals I had been getting ever year saying I was in perfect health!
Clearly I was shocked, devastated, and in my head planning my own funeral. However, after 5 months of taking the drugs (epzicom, prezista, norvir) I'm feeling great and have adjusted mentally as well as could be expected at this point. My t-cells have risen dramatically, my fatigue is virtually gone, I haven't missed a day of work, and I lift weights and run 5 days a week. In the nutshell, the drugs have thus far allowed me to continue my life. When diagnosed, I got to know a friend's brother who has been positive for 23 years and hasn't let this horrible disease get in the way of living an exciting, full life. I hope and intend to lead just as great a life as he has.
Ok, I'm officially babbling so I'll wrap up by saying that I know there are very serious challenges from this disease and it is certainly not a walk in the park, but there are alot of folks who manage it well and make the most of life. This website has been a godsend to me and no doubt countless others who have needed support so I hope it will continue to point out that being positive doesn't doom everyone to a life of hell. Every day I thank God for letting me live to see another sunrise, and every day I thank this site for reminding me that the challenges of being positive aren't unstoppable.
For those that are indeed having challenges with managing HIV, my heart goes out to you. Every day that you keep grinding your way through life is one day closer to the next treatment breakthrough.
Comment by: terry
Thu., Feb. 18, 2010 at 10:19 pm UTC
"... how the "chronic manageable condition mantra" may actually be hindering our HIV prevention efforts." May be hindering, Dr. Bob??? WHERE have you BEEN?? It's about time that you (translate: doctors) and TheBody.com start publicly acknowledging what many of us who work with HIVers on a more regular basis (not every 3-6 mos. for a 15 min. office visit) have known and have been up in arms about for years. I've posted several responses over the years to your columns in which you stated exactly what you're now questioning. Sadly, they went unnoticed.
HIV has never been a "manageable" disease for a very large segment of the population, many of them your readers. For many, the drugs don't work. For many others, the side effects are too intolerable. And then there's the psychosocial collateral that comes with a diagnosis of HIV; dating, employment, housing, insurance, immigration, family, etc., etc., etc., that make "managing" (disclosing, preventing) HIV nearly impossible. And so, many people don't.
Doctors telling a newly diagnosed HIV+ person that "HIV is a chronic and manageable disease" is unconscionable - because it's not true. The statement is not true because it's not true 100% of the time for everyone. And you admit that you "one recent day" (please!!) received emails from patients and physicians as evidence that it's not true. I hold you, and TheBody, partly responsible for exacerbating the psychosocial collateral our community has been burdened with by propagating the misconception that HIV is only a chronic and manageable disease if one takes good care of them self. You probably said these things out of your own need to take care your readers (translate: patients) by helping to alleviate the anxiety they expressed, but the false sense of security you (doctors) give them is one very big cause for the HIV/AIDS apathy in our community.
Thanks for coming full circle, Dr. John Q. Public. Better late than never!
Comment by: Kirk
Thu., Feb. 18, 2010 at 9:32 pm UTC
Thanks Dr. Bob for the sobering topic. Of course, I did not like it but I needed it. I have been positive since 2005 and I am not on treatment yet. T-cells are still very high and viral load low but maybe the time will come for meds and I hope my body cooperates with them and vice-versa. I think that it is important to live as healthy as possible. laugh, work-out, eat great, and maintain all the good thought possible. I hope and pray this virus stays at-bay and we not only survive but thrive. Thanks again Dr. Bob, for your honesty and your heard work to help save lives.
Comment by: Kev
Thu., Feb. 18, 2010 at 9:23 pm UTC
Given the not-so-manageable nature of the beast, and knowing almost anything you throw at HIV in vitro kills it, why not put a lot more effort in trying existing drugs in forms with more universal biovailability -liposomes, microemulsions, etc.-? Thus one could see if the problem that makes therapy chronic forevermore is that HIV actually replenishes from reservoirs- brain, gut, marrow precursors, whatever-. Curing the disease would make it manageable, even though the cashflow of manufacturers would have to be reviewed. Chronic exposure makes mitochondria everywhere go kaputt, and the result is not-so-manageable,
Comment by: giles Manwaring
Thu., Feb. 18, 2010 at 9:15 pm UTC
My son is getting near the time to start drug treatment. (Dr. Daar @ his clinic at Harbor UCLA))
This article really frightens me.......
What are the drugs going to do to him.......
Thanx reading this...
Comment by: Skippy
Thu., Feb. 18, 2010 at 8:31 pm UTC
I am glad you have addressed this ,as I too find it somewhat confusing when trying to figure out what to dread next.Maybe it is manageable to my doc but it isnt to manageable to me
Comment by: Gilbert
Thu., Feb. 18, 2010 at 8:15 pm UTC
Love your article, as an HIV + person I agree with your statement regarding sociaties complacency stemming partialy at least from the portrayal of HIV + by the drug companies. Keep up your great work.
I will definetaly print and give this to my doctor to read.
Comment by: Cyn
Thu., Feb. 18, 2010 at 8:01 pm UTC
Your post really cheered me up tonight--lol type cheering up is pretty much the meds I need about now. I am writing after two glasses of wine and Sustiva--oops! A no, no, but I do teach 9th graders in public school for 8 hours only to go home to my not finished term paper, "The Psychological and Physiological Effects of HIV Infection." Ten hours of doctorate classes online leading toward a Ph.D. in Health Psychology--not to mention the mother of a 17 year old son who just achieved $750 mass of speeding, drifting around the watertower circle, evading the property owners association wanna be cops ticket ensemble. In two different trucks given to him by rich grandparents. "Green lights on their vehicles mom, I thought that meant go." Anyway, my life in a nutshell while undergoing microscopic evaluation to be a better teacher from a stimulus grant of 1.5 million from an architect firm, go figure, like they know how to teach--my master's is in Curriculum and Instruction for crying outloud. Ok, I feel better now. By the way, I have no psychological support. Anyway, thanks for the chuckles.
Comment by: Rusty in NoVa
Thu., Feb. 18, 2010 at 7:47 pm UTC
Some of us were fortunate to have the HIV portion manageable; but side effects can be terrible.
Lipoatrophy and body shape are stigmatizing conditions no insurance plan will cover. Neither will fitness routines to re-arrange and de-emphasize bady fat accumulations. Not all VAT is the same, the "soft" fat CAN be removed- its no more than the normal floppy excess of fat around the middle. Changing drugs will help it from returning, just like facial lipoatrophy.
Thanks to excellent medical care, early onset intervention reduces side effects from becoming debilitating. Living in the South is painful not only because of lousy diet and bad exercise habits but by poor HIV maintenance practiced by poorly trained physicians. Other parts of the country suffer the same. I am thankful for living in the DC Metro where there is a Gym on every corner, sidewalks, miles of bike trails and grocery stores with healthy foods.
Comment by: Red
Thu., Feb. 18, 2010 at 6:05 pm UTC
Well, on the other hand, if the condition is manageable, then its a manageable condition.
I can only imagine that Dr. Bob as a reference to so many of us, is seeing and hearing about those cases where it isn't "manageable". I agree that of course there are folks that this is not the case.
But for those of us that seem to be doing well on treatment, even for some LTS's who are now tolerating the new treatments well, that we are for quite a few folks in that manageable status.
And I would like to point out that often our perception of HIV trails reality. This is not uncommon in all aspects of our lives that in general, our perception trails reality. In business, its common for employees to be thinking 6 months behind the curve because of this tendency to rely on ones experiences far in the past to shape our perception of today.
In my case I am 6 year HIV Positive, and was in the very cycle of belief that I was a dead man and doomed to intolerable medications. But Stigma, as you said, a topic by itself, isn't just what surrounds us, it start within us.
I started meds last year, Reyataz, Truvada and Novir. And my improvement in CD4 to 600 and with an Undetectable VL with no significant side effects. My fatigue issues are gone. I am active as ever. Right now, I just take 3 pills a day and enjoying the results. And compared to friends who have vascular issues or diabetes or MS, I'm in a more manageable state than these other conditions that HIV is often cast when discussing manageability.
In the end, I gather this is a percentage play. For those whom its "manageable", and for those who it is not. So how should we characterize being enhanced in "general"? I guess that's the point. Perhaps the term isn't right for what we need in order to understand how we handle this condition.
Comment by: sray
(New York City)
Thu., Feb. 18, 2010 at 5:20 pm UTC
It's so nice that you try to keep your blog cheery and upbeat but, come on, let's be real. Having HIV sucks big time! And the upbeat, cheery attitude just makes me feel that the topic is not being taken seriously.
To address the topic, yes HIV is chronic, but manageable........hardly.
I've been taking HIV meds for 23 years. I'm 61 years old. Got laid-off from work several months ago due to "budget cuts," so they said, but I've also had complaints that I take too much time off of work for my many doctor visits, even though I would work late to make up the time. Read into this what you will. I desperately need my health insurance. My copays for all my meds, doctor visits, lab tests, and medical procedures totals approx $10,000 per year. If I didn't have health insurance, I might as well just throw the towel in. Really, what's the point of continuing a life of weekly doctor exams and medical procedures when you've run out of money and never feel well enough to do anything useful.
And to Lee of MN, you try enjoying life when you wake up in the middle of the night because you just pooped all over yourself and your bed.
As far as having an outlook of the glass being half full or half empty (I know you said cup, but I always thought the phrase used a glass (which is clear) so the water/liquid could be seen from the outside, and cups are generally opaque) my glass seems to have cracks in it and they keep getting larger and larger as I try to "manage" this disease.
Comment by: Tom R
(St. Paul, Minn)
Thu., Feb. 18, 2010 at 4:45 pm UTC
This web site is getting to be a really downer. The majority of information offered on this site is extremely negative, and frankly is not doing the majority much good. There are HIV negative people with joint necrosis, heart problems, diabetes, obesity, you no name it. It is possible that a lot of HIV positive people would have had various chronic conditions anyway, depending on their genetic make-up, diet, exercise level, etc. I am on meds, and have been positive since 2004 with no problems, and my HIV Pos friends are living healthy lives. Why don't you feature a few of the HIV positve people who are leading productive, happy lives? Give us all a break and cut out so much of the negativity, every patient is different, and just because one person experiences something it does not mean the whole population is going to follow suit. Thanks, Tom R.
Comment by: Richard
(Las Vegas, NV)
Thu., Feb. 18, 2010 at 4:10 pm UTC
I have been struggling with this virus for 10 years! When I hear people say this is a "chronic managable condition" I want to slap them upside the head!
I want them to experience the daily explosive diarrhea, and having to take METHADONE for the neuropathy. So I am not the person I used to be!
I used to be fun, quick witted, and like being out and about with people! Now I stay home all the time, partly because I feel like crap all the time, and another is because I'm loaded on drugs!The other is that I'm afraid of having an accident(diarrhea). I had to buy some Depends to wear to work! I am pooping on myself at work, and had to leave on numerous occasions! I have to keep this job to get my meds! What do I do?
I will 40 next month, and would never guess that I would be wearing Depends on my 40th Birthday...Happy Birthday to me!
Yes, I am lucky! I have a job with insurance. They pay a large part of my treatment, but I also feel that treatment is also killing me!
Is this a "Chronic Managable Condition"????
I don't think so!!!
Thanks for everthing Dr.Bob, you are wonderful!!!
Comment by: Lee
Thu., Feb. 18, 2010 at 3:49 pm UTC
I look at it this way. If HIV doesn't get you something else surely will. Life is TERMINAL we are all headed for that final dirt nap no matter if we have HIV or not. I think as you do that one must make the most out of every day nothing is gaurenteed in life not a second past the one you have lived. ENJOY life and don't dwell on HIV as being the only thing that will bring you to your grave. Living is TERMINAL.
Comment by: aztekcasper
Thu., Feb. 18, 2010 at 3:44 pm UTC
I very much agree with u dr. bob. You being affected by this disease knows 1st hand what it is like waking up every morning. I just recently had a scare and still very much fear i have hiv but when i started doing some research i read about how alot of people are now saying how hiv is chronid and manageable like diabetes, and i was feeling some comfort. But then i read some other news about how hiv is still the killer it once was, the meds dont work for everyone, and they are very toxic still. Most people still suffer from daily fatigue even while on meds. I can help but ask would i rather just end it all or leave a very poor quality of life that i would rather not have to let my son witness. I agree that the meds and hiv is better to some than others, but that is a very short group of affected indivisuals. And worst of all i agree with that ur saying that since its now thought of as a chronic disease that research may not find it as urgent to continue looking for the cure or vaccine or even better meds and by saying chronic disease people may be less careful about wearing protection during sex. Again good blog, keep it up and stay strong dr. Bob and everyone else affected by this.
Comment by: dave
Tue., Feb. 16, 2010 at 2:54 pm UTC
I couldn't agree with more on the perception that HIV as a "chronic, manageable disease." There indeed are many consequences and issues that impact coping with this disease least of which is the stigmatization and lack of competent individualized care. Science has certainly come a long way in terms of therapies to control the replication of this virus, but this is not without side effects as you have outlined. I have profound fatique and have not worked full-time for the past few years because of th effects of the meds/disease process. My physcian feel I should work because it is, "the Amercian way," and appears not to take my complaints seriously. My savings are dwindling and I am frieghtened about the future. I travel 1 hour to see him as I want to protect my privacy qnd can't really find another provider despite checking ASO's.
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Life, Love, Sex, HIV and Other Unscheduled Events
Bob Frascino, M.D., was President and Founder of The Robert James Frascino AIDS Foundation. He had been an outspoken, popular expert in TheBody.com's "Ask the Experts" forums on safe sex and fatigue/anemia since 2000. Once a Fellow of the American Academy of Allergy, Asthma, and Immunology, and the American Academy of Pediatrics, Dr. Frascino served as Associate Clinical Professor of Medicine, Division of Immunology, Rheumatology, and Allergy, at Stanford University Medical Center from 1983 until 2001. He was a member of the American Academy of HIV Medicine and had also been a distinguished member of the executive boards of numerous state and regional associations.
We're inexpressibly saddened to share the news that Dr. Frascino passed away unexpectedly on Saturday, Sept. 17, 2011. Click here to read more and to share your thoughts.
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October 19, 2011 - The Ultimate Unscheduled Event: A Blog Entry by Steven M. Natterstad, M.D.
September 23, 2011 - HIV Guidelines: Some Evolve; Some Don't. What's Up with That? Part Two -- A Blog Entry by Bob Frascino, M.D.
August 25, 2011 - HIV Guidelines: Some Evolve; Some Don't. What's Up With That? Part One: A Blog Entry by Bob Frascino, M.D.
July 27, 2011 - Three Decades of HIV/AIDS, Part Three: A Blog Entry by Bob Frascino, M.D.
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