|how long do i have
Apr 28, 2010
dr bob. in one of your blogs a person asked you if it was cool to have hiv. you said we have 10 years on average to live after diagnosis. this really scares me. so many other hiv doctors say we can live a normal life span. have you given up hope . are you saying this because you have given up hope? what is wrong here dr. why the negative blogs all of a sudden. are you having problems?
| Response from Dr. Frascino
Whoa! Hang on there fellow! When's the last time you had your contact lens prescription checked? Go back and reread what I wrote (see below) and you'll soon realize you completely read it wrong! I never said, "We have 10 years on average to live after diagnosis!" I said, "The life expectancy for those of us who have been HIV infected for a number of years is a decade or more SHORTER than that of our HIV-negative peers." (I've already been cohabiting wit my virus for 19 years and counting!)
My blogs are not "negative," although they are realistic. I remain the most optimistic guy on the planet.
HIV is not so bad anymore (HIV PREVENTION SPECTRUM 2010) Apr 21, 2010
I understand you must keep the prevention message high but do you think that the Fear HIV method is still functioning after 2 decades of the HIV epidemic? Don't you think it's the same as putting warning messages on cigarette packages which never proves to be effective in lowering the actual number of smokers? I continue to see people absolutely not concerned about HIV and others already infected who claim to feel great. Fortunately in the rich world, the disease is like diabetes and no more a reason for panic. I think that some prevention messages are simply wrong keeping the stigma around the disease. HIV is no more a death sentence and to invite people getting tested it would be more useful to spread that message instead of the terroristic prevention approach which doesn't function anymore. Also I invite you as a consultant of the pharma companies to change their advertise of the drugs, since they are not helping you in putting fear on the disease. Everytime I'm loading this page, happy and smiling HIV infected folks pop up on the screen leaving the impression of how cool it is beeing positive.
Response from Dr. Frascino
Thanks for your comments. I appreciated your point of view, but disagree with some of your assumptions.
1. That you "continue to see people absolutely not concerned about HIV" doesn't mean HIV is nothing to be concerned about. The same applies to smoking.
2. "HIV is like diabetes and no more reason for panic." I disagree that HIV is like diabetes. I wrote a blog for this site on this very topic. Check it out. It's entitled "A Chronic, Not Always So Manageable, Condition."
3. "HIV is no longer a death sentence . . . ." Again, I disagree. Since we do not have a cure, HIV/AIDS remains a terminal condition. No doubt potent combination antiretroviral therapy has been nothing short of miraculous in decreasing HIV/AIDS morbidity and mortality, but these drugs are not a cure and the consequences of taking them for protracted periods of time are still largely unknown. We've been amazed at some unexpected adverse short- and long-term toxicities and side effects associated with these agents -- lipoatrophy, lipohypertrophy, increased heart attacks, anemia, jaundice, demineralization of bone, advanced aging . . . The list goes on and on. The life expectancy for those of us who have been HIV infected for a number of years is a decade or more shorter than that of our HIV-negative peers.
4. ". . . You as a consultant of pharma companies . . . ." Actually I'm not. All my efforts here are purely on a volunteer basis. I gave up consulting with pharmaceutical companies a decade ago.
5. As for HIV-prevention messages, we need different messages for different target audiences. If you read the posts in the archives of this forum you'll find many folks who are inordinately fearful of HIV. Irrational fear of HIV stems form myth, misinformation and stigma. The HIV paranoia group is the counterbalance to the folks who think HIV is nothing to worry about. It would be difficult (in fact, impossible) to craft an HIV prevention message that would be appropriate for both of these groups. No doubt HIV prevention is still very much needed. Here in the U.S. someone new becomes HIV infected every 9.5 minutes. Prevention worldwide also needs to be more than just condoms and a safer sex message. (See below.)
6. Having been "virally enhanced" since January 1991, I can assure you there is absolutely nothing "cool" about being positive.
Prevention equals condoms. Period. Right? (HIV PREVENTION SPECTRUM 2009)May 5, 2009
HIV prevention isn't all that complicated. Just use condoms. End of story. Right?
Response from Dr. Frascino
Well, I agree condoms may be the most effective HIV-prevention tool we have to date. However, it is far from the only tool or intervention in the prevention armamentarium! Effective HIV prevention is far more complicated than you might imagine and condoms alone are not the "end of story" solution to the HIV pandemic! I believe a "prevention spectrum" is really the best way to think about an effective HIV prevention strategy.
We know that what we are currently doing is not working. How do we know that? Simply by looking at the rate of new HIV infections that are occurring across the globe each year. Even in the U.S. the number of new HIV infections has not declined. In fact the number of new infections per year has increased to 56,300 per year!! A key point to remember is that HIV is 100% preventable using the tools and knowledge we have today.
An effective prevention strategy should begin well before a potential HIV exposure with science-based, age-appropriate sex education that emphasizes STD awareness and prevention. In addition pre-exposure prevention strategies should include behavior change for those participating in risky sexual or drug-injecting activities. We also need to increase clean-needle exchange programs, STI treatment programs, circumcision (especially in resource-poor countries) and availability of PrEP (if it is proven to be effective).
Prevention strategies at the time of exposure would include condoms (both male and female), antiretroviral therapy to prevent mother-to-child transmission in HIV-positive pregnant women. We are also working to develop effective microbicides for vaginal and rectal use and more effective cervical barriers (diaphragm).
Finally, preventive measures even after exposure should be ramped up. These include increased awareness and availability of PEP (post-exposure prophylaxis) and increased testing to identify those who are infected so that risky behaviors can be modified and treatment begun. HIVers with undetectable viral loads have a significantly decreased risk of transmitting the infection to others. Likewise prompt recognition and treatment of concurrent STIs can decrease the risk of transmission of HIV to HIV-negative sexual partners.
Eventually we hope to develop the ultimate HIV-prevention tool, an effective preventative vaccine. However, such a vaccine is not even on the distant horizon yet. Consequently for now and the foreseeable future we should more effectively utilize the entire HIV-prevention spectrum armamentarium, including but not limited to male condoms.
Recent prevention failure and efforts to cure the disease part 3 (HIV IS 100% PREVENTABLE TODAY, 2010) Jan 3, 2010
Thanks again. I understand your difficulties in managing a prevention forum since your objective is to put more fear on the disease to lower further infections but the general and widespread opinion of doctors and researchers is that HIV is a chronic disease and also a quite managing one. Treatment today is excellent as the prognosis and things can only get better. The fact is that this information is in the hands of the general population and that the need for using condoms declines consistently. People are no more concerned about AIDS it once was in the eighties. I don't know if this is allarming or not but it is a fact. This facts are the evidence that although HIV is 100% preventable, which is right, in the real world we will never reach the 100% because people don't consistently use condoms. We know this for 25 years. So your logic is correct but it poorly applies to the current reality since HIV is still around us and is spreading rapidly. Considering that condoms alone don't work because people don't use them as they should, other tools are quickly needed as microbicides, meds or even treatment for those infected to lower the chances for new infections. The tragedy is that those tools are not available and that in the meantime many more people will get the virus.
Response from Dr. Frascino
Dude, you're spending way too much time on this site and arguing with the wrong guy. Generally you and I agree on most things. It's just that I have the perspective of being HIV infected since January 1991 plus the experience of being an HIV/AIDS physician specialist, researcher and activist for over a quarter of a century. Add to that the fact I'm also the most optimistic person in the galaxy.
I totally disagree with your comment that my objective here is to "put more fear on the disease"!!! My purpose is to provide medically sound and scientifically accurate advice! Often I find myself trying to lessen people's unrealistic and irrational fears of HIV/AIDS!
HIV has become more manageable. I totally agree; however, having to take and tolerate potent combination antiretroviral drugs every day of your life is no walk in the park. Just peruse the archives of this forum and read the experiences of folks who have to take a 28-day course of PEP (post-exposure prophylaxis) and you'll soon realize these potent drugs can be extremely difficult to tolerate. Plus, their long-term consequences are still being discovered. We had no idea when we were prescribing Zerit (d4T) and Retrovir (AZT) years ago that it would lead to lipoatrophy (loss of fat in the face, buttocks and limbs) years later. We are now finding long-term toxicities to bone and possibly increases in heart disease associated with some antiretrovirals. This is the information that the portion of the general public who think HIV is no big deal needs to be made aware of.
I agree it would be desirable to have a basket full of prevention tools that we could use (topical microbicide, PrEP, preventive vaccines, etc.); however, until we can develop those tools and prove their safety and efficacy, we must focus on better using and more widely employ the effective safe prevention methodologies we currently have at our disposal!
Recent prevention failure and efforts to cure the disease part 2 (HIV IS 100% PREVENTABLE TODAY, 2009) Dec 31, 2009
Thanks for your quick response. I have to disagree too on one point. You said that HIV is 100% preventable which is correct but it ignores the nature of human beings. Let me explain. Many actually know the ways of transmission but this leads not automatically to a consistent use of condoms. In fact most feel that condoms remove the feelings of intimacy between two persons and they don't allow conception. Considering this aspects most of people take the risks knowing also that HIV is no more a death sentence and well treatable. Please read some opinions from your colleagues on the other forums and you'll notice how optimistic they are on current therapies. They claim that we now have excellent meds with very few side effects. People don't feel anymore the danger of this disease. Another expert who also wrote a book dedicated to those newly diagnosed claims that the prognosis is excellent and that treatment for HIV is better than for other chronic illnesses. People are tired of condoms. I don't know one person who use them consistently and they all know very well the risks. You can insist for decades on condom use but you will never stop the progression of the disease. It is like the warning messages you find on cigarette packages. People know the risk of smoking but they don't stop despite the risk of cancer and death. We need something more efficient and we need it soon. 25 years of prevention efforts based mostly on terrorism have lead to nothing. In some aspects they have even worsen the situation. Now people fear to get tested and they fear to make sex with positives which leads to discrimination. I know a swiss site which recommends to not engage in sexual relations with HIV positives to avoid getting the virus. This is practically efficient but sad from an ethical and moral point of view. Many are still convinced that kissing is risky and many of the idiotic questions in this forums are the evidence of a total missinformation and a lack of putting risks in perspective. I continue to think that the prevention method is inadeguate and that the lack of more tools in avoiding more infections is a very tragic reality.
Response from Dr. Frascino
Sorry, I have to disagree with your disagreement!
The statement that HIV is 100% preventable is completely true and has nothing to do with human nature! It's just a scientific fact that we could prevent all (or essentially all) HIV infections with the knowledge and tools we have at our disposal today. That this knowledge and these tools are not being used either because of cost, lack of access, lack of knowledge, or any of a variety of other factors is a completely different issue.
As for HIV disease treatment, I totally agree we've made significant and dramatic progress. However, HIV remains incurable and in that regard it remains a death sentence. We have no scientific information that even with the miraculous new antiretroviral drugs available that HIVers will live a normal lifespan. In fact, there is considerable information this is not the case. I agree with my colleagues that we now have excellent treatments with less (although not "very few") side effects. Perhaps my viewpoint is somewhat different than theirs, because I actually have to take these drugs, rather than just prescribe them! Coexisting with HIV and the consequences of long-term antiretroviral therapy is no walk-in-the-park. Sure, people are tired of condoms and condoms may decrease intimacy, etc.; however, as much as folks don't like condoms, I can assure you they would hate having HIV/AIDS even more.
I agree we need additional prevention measures (and I've discussed this at length in this forum), but we also need to better use what we currently have: condoms, circumcision, clean needle exchange, increased sex education, etc. So until newer prevention methods (PrEP, for instance) become more widely available, we need to dramatically upscale what we know works!
Recent prevention failure and efforts to cure the disease (CURE, 2009) (PREVENTION, 2009) Dec 29, 2009
With the last microbicide PRO 2000 proven ineffective and the failure of the Thai vaccine it is quite sure that for the next 5 years we will not see anything on the prevention front. Condoms are not the answer since we see the steady increase of new infections. On the therapeutic side we continue to see more HAART medicines with astronomic costs and with the need of a lifetime assumption putting the total amount of treatment in billions of dollars and rising. I guess it's time to change strategy and to not start trials based more on chance than on scientific knowledge. The last trial results are the evidence on how messy the approach is in finding a cure or a vaccine for the disease. If we only reach a 30% reduction in transmission risk that means we have not the knowledge to combat the disease. The situation is quite dramatic. Fewer people get tested and nothing is done for stigma and discrimination. The horizon will be very dark if we don't change quickly the approach in fighting the disease. But I see a very relaxing attitude both of scientists and activist who seems to not fully understand the catastrophic consequences if we continue that way. If we still need to wait years and years for a drastic change in prevention and treatment than there's little to no hope in stopping the disease. Just my opinion.
Response from Dr. Frascino
While I agree with much of what you say, I will take exception to several points:
1. "It's time to change strategy and not start trials based more on chance than on scientific knowledge." Essentially all approved clinical trials are indeed based on scientific knowledge. That some (or many) of these trials have not been successful is not really unexpected. (See below.)
2. "If we only reach a 30% reduction in transmission risk that means we have not the knowledge to combat the disease." I disagree. We may well be a long way off from a "cure," but we certainly know how to effectively combat the disease! In fact, HIV is essentially 100% preventable today! The problems are not informational, for instance not knowing how to prevent HIV, but rather that we are not doing what we know works! Certainly politics, ignorance, stigma, discrimination, criminalization of HIV transmission, costs, the lack of effective awareness/prevention/treatment programs, etc. play a role in allowing the pandemic to continue taking its deadly toll. Interventions, such as clean needle exchange, condom use and PEP should be no-brainers, but such proven interventions are often impeded by folks with no brains (read: rightwing conservative Republicans, the Catholic Church and other rightwing religious zealots, etc.).
3. "I see a very relaxing attitude both of scientists and activists who seem to not fully understand the catastrophic consequences . . . ." Although I get your point, I can assure you this scientist/activist is typing as fast as he can!!! If we all did our part, we could stop HIV cold in its tracks, today!
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