Conflicting opinions on the body website

[xman]

I was reading an answer to a question posted by a reader in the prevention forum moderated by Dr. Frascino.
http://www.thebody.com/Forums/AIDS/SafeSex/Current/Q205933.html

The interesting part of the response from Frascino is the following:

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.

Interestingly in the choosing your meds forum the opinions about the lifespan of infected people sounds quite optimistic and in contrast with those of Dr. Frascino.
The questioner also indirectly mentioned Dr. Gallant since he refers about a book for those newly diagnosed. Dr. Bob seems in disagreement also with his entusiasm about treatment.
I understand that there's much confusion in the field but it really doesn't contribute to the reliability of the doctors and researchers in the forums.
If the opinions of Dr. Bob are right it would support the needs to find a cure or alternative treatment since he underlines the lack of scientific evidence reguarding the lifespan of positive people when compared to healthy ones and the side effects.

[John2038]

Dr bob should continue to answer to the anemia forum and let the others dr answer to such question that obviously he was willing to worsen. Some people will live until their old age while some others wont. It will depend on the host and the virus.

[Assurbanipal]

Dr bob should continue to answer to the anemia forum and let the others dr answer to such question that obviously he was willing to worsen. Some people will live until their old age while some others wont. It will depend on the host and the virus.

But Dr. Bob is correct that there are no studies that show normal life expectancies.  (Whcih is to say that it is difficult to prove a negative but I read each one carefully as they come out, and have not seen any.) But perhaps he could have been clearer that there are some that suggest near normal life expectancies.  The extrapolation to normal from near normal appears to be based on hope for continued progress in treatment.

(Nice to see you posting again John -- haopy New Year to you)

edited -- accidentally posted part way through

[Boo Radley]

Dr bob should continue to answer to the anemia forum and let the others dr answer to such question that obviously he was willing to worsen. Some people will live until their old age while some others wont. It will depend on the host and the virus.

My italics above -- nothing Dr. Bob wrote contradicts your statements but they've been true all along.  LTNPs and other people with AIDS will live to ripe old ages.  Others won't.  Dr. Bob didn't say "We're all gonna die!!" but accurately stated no one knows what the future holds with the current state of AIDS  treatments.  

I believe it's premature to declare HIV disease "chronic and manageable [for life]" -- no one knows that.  In my uneducated opinion at least 2 more decades must pass before we who've been living with HIV since the 1980s will know how we'll fare, HAART or no HAART.   Of course new, less toxic treatments will keep coming but that doesn't account for the real possibilities HIV will act like other retroviruses and pull a new trick or two from its hat.  More and more studies are showing HIV affects aging & we can't forget our bodies have several reservoirs of virus untouched by drugs.  

Maybe Dr. Bob should stick to his specialty but what he wrote isn't incontrovertibly wrong (just as "it's manageable" isn't either).  

[Assurbanipal]

Maybe Dr. Bob should stick to his specialty but what he wrote isn't incontrovertibly wrong (just as "it's manageable" isn't either).  

John, like the most hopeful studies on life expectancy, is European.  If we (you, me, Dr. Bob, ...) had European medical care and social support systems I suspect we'd all be a lot more optimistic about manageability as well.  Dysfunction takes its toll...

[leatherman]

If we (you, me, Dr. Bob, ...) had European medical care and social support systems I suspect we'd all be a lot more optimistic about manageability as well.

good point. especially since the vast majority of HIV infected persons are living in Africa with sub-par health care. (That's care even worse than in America LOL). That means that for nearly 2/3 of the HIV population of the world (http://www.avert.org/worldstats.htm) AIDS is still a terminal illness and no where near "chronic and manageable"

There definitely should always be a caveat put on the whole "chronic/manageable" notion since that only happens IF:
you are diagnosed in time,
put on the meds with less adverse side effects,
have constant access to those meds,
if not also access to social support systems too.

When any of those items fail (and there is at least one failed item from that list for many people) then HIV is no longer "manageable" and can become an actual life and death situation.

My person opinion is that the people that so want to box HIV/AIDS into a nice little package of an easy chronic, manageable disease do us all a huge disservice. Less money, research, time and social services will be directed towards an illness that the public views as "nearly cured". That means no improved meds and no cure. It also means even more deaths worldwide as those 3rd-world nations receive less financing and medications - even though they have yet to fully treat and care for their HIV+ persons. Just because the percentage of people in industrialized nations having less issues with this disease has risen slightly over time is no reason to call "mission accomplished" yet. I've very happy that more people have better health and less side effects than in past years but their voice should not be allowed to drown out the cries of those who never receive treatment or suffer side effects from the current meds.

[veritas]

xman,

Your right------ there are a lot of conflicting opinions with respect to HIV being a manageable disease. A lot depends on the current status of one's disease. Dr. Bob  makes a good point : "Coexisting with HIV and the consequences of long-term antiretroviral therapy is no walk-in-the-park." It's not!

Dr. Gallant, author of the  book "100 Questions and Answers about HIV and AIDS "(which is very helpful), is a researcher, who has followed the course of the disease, since it's darkest days. He has a very good pulse on the research.

So who is right? The question does not have a definitive answer yet, since both points can be argued and we are not there yet.

Leatherman makes some good points with respect to "chronic/manageable":

"you are diagnosed in time,
put on the meds with less adverse side effects,
have constant access to those meds,
if not also access to social support systems too."

I would like to add to  the above: keeping yourself healthy (good diet,exercise, positive attitude) all of which act synergistically to prolong life, however, difficult to maintain. This aforementioned is an area where the blame can fall on the victim, all be it not justified!

That being said, I believe we will see some dramatic improvements in the not too distant future !

Stay well !

v (the optimist)

[John2038]

Hi Assurbanipal
Nice to have you there too and to see that your counts are fine

Veritas
Good to read optimism.
"i dont believe in pessimism"
--Clint eastwood i like this quote. It give another meaning to the word manageable

[mecch]

Well friends, it is a statistical question - "normal life span" - based on population statistics. An individual can only refer to a statistic - for instance if you are obese you could refer to all kinds of statistics on obesity and different health challenges and life span. 

You be foreever frustrated if you are expecting an individually accurate response to this question if in the present you are living healthy enough.

The statistics are VERY important poilitically and emotionally however.  Politically, as leatherman points out - because HIV is manageable for people who live in very supportive countries where governments can afford and choose to support all the population, generally. 

Emotionally its important because good solid statistics will help in the public education campaigns for prevention and stigma.

[Miss Philicia]

Nothing like easily writing off Dr. Bob as a "pessimist" simply because he's trying to offer a more reality based approach to a topic.  Of course, this shouldn't surprise anyone that's been on this board for long.

[Boo Radley]

John, like the most hopeful studies on life expectancy, is European.  If we (you, me, Dr. Bob, ...) had European medical care and social support systems I suspect we'd all be a lot more optimistic about manageability as well.  Dysfunction takes its toll...

Ah!  Thanks for the clarification.  Please excuse my brusqueness, John. 

If the USA had begun (real) research on HIV when many in Europe did we might be even a tad closer to better treatments and have more answers.  Since it took several years before old Ronnie could be convinced to fund actual HIV research instead of claiming studies on rhinoviruses & the like were enough I've wondered if the USA ever caught up.  Geez, Robert Gallo even stole the virus discovered by the Pasteur Institute since he couldn't isolate it in his own gazillion dollar lab.   

But Assurbanipal, haven't you heard?  Universal healthcare is coming to the USA!!  Just tap your shoes together three times and say "there's no place like home."

[mecch]

But Assurbanipal, haven't you heard?  Universal healthcare is coming to the USA!!  Just tap your shoes together three times and say "there's no place like home."

As an expat on HAART, I'm hopeful about that, but frankly I can't imagine the USA making it as easy an affordable as many European countries do. I mean the whole kit and caboodle - doctors bills, labs, HAART, the whole bit, do you really think the US is going to do an about face and make this go more or less smoothly and cheaply.  I'm guessing the poor to middle class will be facing high copays and premiums and minimums and everything will be unrealistic.  The only way I can see this working is with a competitive public health insurance plan, or very generous government subsidies to pay premiums.
Next month is January. That means I meet my 300 (USD equiv) deductible for all doctor bills for the year. Then I must meet 10% of my perscription drugs up to 700 (USD equiv.) for the year.  And pay about 320 USD a month in health premiums.  Other than that, no hassles.  So less than 5000 a year. Quite affordable on my salary.  This is about the most expensive health care in Europe. But the government pays the premiums for poor people.
 Many countries, everthing is free. 
I don't say this to gloat, I say this in comraderie with other Americans.  Struggling Americans are getting SHAFTED by the powers that be.  Wake up.  Its a life or death situation.
Hugo Chavez said that if the climate were an american bank, it would already been have saved.  Pretty good one, Hugo!

[veritas]

mecch,

I have to agree with you to a certain extent. Here in the US, everything is more expensive (including medications)  If the gov allows full coverage for everyone ( HIV,cancer, diabetes etc) the cost is not sustainable. Such a program would necessitate a dramatic tax increase that combined with higher prices for necessities of life (food, gasoline, education etc.) the majority of Americans would not be able to afford the increase. It's a difficult problem. Compromise is the answer with provisions for those most destitute. It will be interesting to see how our government handles this situation.
Our voices should be heard though !

v

[John2038]

Typically, a private insurance in the EU is costing betw. 200-400 euros/month.
The governement are supporting those who can't afford to pay it.

I don't see why, if Europe can afford such system, the citizen of the richest country in the world won't.

Now the cost of the insurance is constantly increasing, but optimization are on-going to reduce them (by reducing the number of hospital per habitant, pushing the use of generics, reinforcing the control on abuses, creating insurance holding, etc) and it shouldn't, normally, continue this way for long.

Countries like France are covering all the health costs without the use of private insurance (but people can still subscribe to them if they want to cover more than the basics -which is free access to any treatment and the hospital), and in such countries, the cost of such system is almost out of control.
But again, not in the countries where their is no public insurance, but private insurance.

I hopes and guess that the USA will succeed in their reform, even if the begining might be difficult: when one see how many billions America is able to put into war, there is no reasons to believe that the USA won't be able to implement successfully this reform (at least to afford it).

Best wishes. At least, the poorest will have access to the medical care, and hopufully no one anymore won't be able to get meds because he/she's officially earning too much (even if he/she can't pay for his/her own medical cares !).