New recommendation to begin treatment immediately

[Since2005]

Um, there are over thirty million people with HIV and just as many people have died.  So, Ya policy makers are trying to do more than just say "wear a condom" as that hasn't work.  If this somehow offends your delicate feelings you need to get over it.   As mentioned many times an undetectable viral load reduces transmission by 96%.  

Source for HIV statistics
http://www.avert.org/worldstats.htm

I could see how being UD could make someone feel better / may be more effective when they are in poz and neg relationships. But that doesn't mean this will work to reduce the spread to the rest of the country. Do u have any idea how many people in nyc don't even test? As I said who actually know, they are protective of others. Without placing proper testing strategy, this won't work. Only NYC and SF, come on ? Please read Matt/Newt's respond on that.

The thought of putting people on meds when they don't need to be on it (due to side effects issues, resource problems, etc.) to reduce the spread is ridiculous.

Apparently, I can't talk about side effects even if its true ( Bug, I don't need to cite link like you, that would be too many of them, just google, it will come up. Yes, body.com is one of them. Basquo, known side effects are clearly mentioned to that cite).

Just so that we are clear on few things -

# I am not advocating to delay meds in general
# Meds outweigh the other risks when it comes down to saving lives
# This recommendation is crap aka bull because it encourages people to be on meds even when its NOT NECESSARY!

Edited to add - Leatherman, I saw you posted while I was writing. We are discussing a recommendation (per thread) , NOT the importance of taking meds. Please read my reply to Basquo.

Since2005 (who clearly needs...a) lesson to explain things better b) vodka tonic c) break d) damn good sex...or all of the above)

[mecch]

Since, you are an HIV+ person who had an opinion that there is no benefit from starting HAART before "necessary". 

However, there are many many doctors now who feel that there is a benefit to starting HAART, at diagnosis.  Even sometimes within months after seroconversion.  Some even see a benefit to starting at seroconversion.

DOCTORS.  D.O.C.T.O.R.S.

So we get your opinion.

[Since2005]

However, there are many many doctors now who feel that there is a benefit to starting HAART, at diagnosis.  Even sometimes within months after seroconversion.  Some even see a benefit to starting at seroconversion.
 

Meech, I am sure you have done your research. So, besides the nasty side effects and waste of resources (sorry can't help but repeat), what are the benefits to starting meds (after one test) at seroconversion???

[mecch]

I don't answer questions that contain propaganda and beliefs presented as fact.

"besides the nasty side effects and waste of resources".

Since you need to chill out and stop half-.assed "research" of "nasty side effects" which only serves to float your fears and denials.  Leatherman pointed out some good places to start.  You are so full of fear and anxiety you are only seeing a quarter the reality.

[Since2005]

I don't answer questions that contain propaganda and beliefs presented as fact.

"besides the nasty side effects and waste of resources".

Since you need to chill out and stop half-.assed "research" of "nasty side effects" which only serves to float your fears and denials.  Leatherman pointed out some good places to start.  You are so full of fear and anxiety you are only seeing a quarter the reality.

Good one Meech! You asked me a question, I answered. You thought those are my opinions. That's fine.
Now, I asked you a question about your thoughts... Or, you don't reciprocate

Please don't direct this to leatherman. We already know what leatherman thinks about that. Please don't tell me what or how I feel about it as we already know. Exclude me out...

Meech, I really want to know what are the benefits to starting meds as early as seroconversion??

[newt]

what are the benefits to starting meds (after one test) at seroconversion

Viral suppression stops the damage  to the body caused by viral replication, especially ongoing immune activation resulting in inflammation, loss of T cells and interference with function of other white blood cells, not to mention disturbance of lipid and glucose metabolisms and attack on your gut. This in a nub is why I would start treatment immediately. The virus is damaging your body regardless of CD4 count except for the lucky very few whose bodies can master the virus naturally. Given that the median CD4 count at point of, eg UK diagnosis, is around 360, it's a moot point, starting immediately here (over the pond). But I'd do it even if my CD4 count was, eg 900. Plus ARVs reduce your chance of passing on the virus significantly, and I like that. It's good for how other people feel about me and how I feel about myself.

Starting treatment in seroconversion...well, apart from some dangers, perhaps it helps your body get a handle on the virus. But I would not do this. I would wait till my body had balanced itself with the virus, then start treatment. It's uncommon to get diagnosed during seroconversion, and if you are real ill at this time the medicine is difficult and there maybe there are more important things going on, like getting your head round being HIV-positive.

But, important point, if I got my diagnosis now and knew nothing about the pathology of HIV (like when I got my diagnosis) I am sure I would disagree with posting here and want to wait. Because the story goes: meds is a little bit horrid and onerous. Not so true eh, this story? The data says that uncontrolled HIV is always worse than controlled HIV, even if, like with a CD4 count of 500 or more, a marginal one.

Having a higher (500+)CD4 count gives you more thinking time that's all, and maybe a chance to see if you are one of the small % who will last years without meds, if you judge that to be a good thing. But CD4 count is not everything. There is the virus to consider.

- matt

[eric48]

Hi,

I found this documented comment interesting on this issue:

http://www.thebody.com/content/64948/top-10-hiv-aids-related-clinical-developments-2011.html?getPage=4#viremia

Eric

[mecch]

Since, in the acute phase. YOU projected "after only one test".  Nobody says someone has to do this or ought to but there are doctors who are fine to go there.

It doesn't matter what we discuss with you, you have your opinion, fears, denials... and your blinders on about the reality of living with HIV --- where you only look at facts that support your fears.

You have been dancing around this thread and mostly off topic, because you haven't read what it is about, nor even what people are writing.  Its all about fear, for you.

[bocker3]

# This recommendation is crap aka bull because it encourages people to be on meds even when its NOT NECESSARY!

Look, I know you don't care for me and I suppose that I could have been less abrasive earlier in this thread I will attempt to be more gentle with you, but you keep ignoring one important FACT.

A recommendation is not stating that every single person has to do what is recommended. 
No one is saying that the recommendation wipes out the need for a doctor and patient to work together to decide what is best for that individual.
A recommendation is something stated for a "general population" (in this case, that population is positive folks) -- but is not geared toward any specific individual.  There may be a whole host of reasons why any recommendation would not by right for a specific person. That being said -- it doesn't mean that the recommendation is crap (wasn't it YOU who once got all twisted up because I called something you said was 'crap').
You, as an indvidual, do not have to agree with the recommendation.  You, as an individual, do not have to heed the recommendation.
So.....  the recommendation is, of course, negating your simplistic argument that some folks "don't need meds yet".  The recommendation is stating that THERE IS HEALTH BENEFITS TO BE HAD BY STARTING MEDS RIGHT AWAY.  Now, an individual may opt not to start for many reasons, but the benefits of starting would still exist.  You can't wish it away, or "crap" it away.

Hopefully, that all makes sense to you and you don't just consider it "noise" -- else I'll start to assume that your definition of "noise" is simply something that runs counter to your opinion.

Mike

[zorro62]

@madbrain n leatherman...thanks for the info on the ADAP policies. I think I will start a separate thread on this subject as its "hijacking" the original thread

As for the original thread, observing the opposing views, I think it boils down to each individual trying to justify the paths they have chosen to follow...start meds asap or wait. Bottom line, imho, is to diligently search for a dr you trust and believe in; someone who has vast experience in treating poz patients. Someone who participates actively in research and trials and who has treated large numbers of patients. Sometimes the dr needs to rely not only on lab results but on gut feeling based on treating patiients with similar symptoms and  reactions to different meds in the past.

I am fortunate to be in Dallas where there are a number of good dr options...not all are so lucky. I trust my dr 100%; (researched all the drs in town; how they operate their clinics; whether they publish papers, participate in trials etc and talked to their patients before I selected the one I am now being treated by).

Whether on meds or not, we are all helping each other by allowing the research community to monitor our progress; having everyone on meds may delay the breakthroughs that can come from monitoring how some people can control the virus naturally; having no-one on meds would seriously hamper the ability to refine the HAART threatments already out there...so I vote for the mixed bag right now..the best chance for vaccine/cure

[spacebarsux]

Thanks for your insights, Matt.

I guess a lot of us who are treatment naive with CD4 >500 tend to think that since we 'feel alright' we can go without meds for some more time before being 'tied down forever' to 'toxic albeit lifesaving pills'. That's how I feel (at a purely emotional level) and I've spoken with others who feel/felt likewise.

Moreover, currently, guidelines almost everywhere, reflect and reinforce that sentiment as well.

I do understand however, that it's a fair bet that chronic immune activation, HIV thriving in the Gut, inflammation, etc are potent enough concerns to commence therapy asap but I'll also admit that when one has a 'choice to defer' therapy- most people would opt to delay it mainly cos most of us find it hard to view HIV disease and particularly ART objectively and without a shred of any of the usual irrational/typical fears that accompany them.

When I was diagnosed I saw an old man with a huge belly and a buffalo hump at the clinic. I swore to myself I'd rather be dead than ever look like that. I've come a long way since then. I also soon realised how insensitive and idiotic my thoughts were at the time.

[Rockin]

When I was diagnosed I saw an old man with a huge belly and a buffalo hump at the clinic. I swore to myself I'd rather be dead than ever look like that. I've come a long way since then. I also soon realised how insensitive and idiotic my thoughts were at the time.

Oh my God what awful, demonic meds could possibly do that??

[Miss Philicia]

Oh my God what awful, demonic meds could possibly do that??

Meds that were used in the early/mid-90's which are either no longer on the market or not ever used in current regimens. Hence don't fuss about it and don't stare at people in fucking clinics that are suffering from the lingering effects of 2 decades ago, because it's ridiculously rude.

[denb45]

 , I mean, don't let any of this scare you, and don't be afraid of what you may look like after 2 decades, if this is what bothering you, AIDS anit for everyone, so don't worry too much about any of this, this disease certainly aint for the squeamish  

[Inchlingblue]

What, exactly, aren't you buying?  Why would HIV/AIDS be different from any other condition?  Could it be that HIV/AIDS is different in your mind because you have it?  Everyone thinks that "their" issue is somehow more important or worthy than others -- I get that, but the truth rarely matches up to that emotional attachment.

My point is that making a recommendation, from a public health perspective, does not require funding.  Yes, the recommendation may not be able to be followed by all without it -- but it doesn't lessen the truth about the recommendation.  Recommendations and funding ARE SEPARATE THINGS -- would be great if they could fund it, but it is still a solid recommendation anyway.

I agree that we could end this if everyone was treated -- of course, that would be everyone -- not just residents of NYC or the US.  

Mike

What I'm not "buying," for one thing, is what you're saying regarding how a "recommendation" should be interpreted.

The word "recommendation" in this context is not the same as, say, me recommending to you that you should look both ways before crossing the street.

If you can't see that, then we can agree to disagree.

[bocker3]

What I'm not "buying," for one thing, is what you're saying regarding how a "recommendation" should be interpreted.

The word "recommendation" in this context is not the same as, say, me recommending to you that you should look both ways before crossing the street.

If you can't see that, then we can agree to disagree.

Oh, I see -- so what is YOUR interpretation, as all you seem to say is that you don't "buy" mine, but say nothing of your own? 
A recommendation is not a mandate, else it would be called, I don't know -- a mandate.  There are many recommendations put out by Public Health officials -- I see nothing different about this one.  I mean, it is recommended that one should not smoke -- is the government paying for cessation?  It is recommended that women of a certain age get mammograms, that is not funded.  It is recommended that people get their BP, Chol, and lots of other things regularly checked -- that is not funded.  I am not talking about crossing the street -- which I've never seen a Public Health official state as an official recommendation.  So, if you disagree -- fine -- tell me your thoughts but don't insult me by equating what I'm saying with crossing the street.  I know you are more intelligent than that.

Yes -- it would be GREAT if there were funding for HIV treatment for all -- I hope someday we, as a nation, smarten up and get health care for all -- but today we don't.  Therefore -- recommendations and funding are separate issues in the USA.

Mike

[Inchlingblue]

Oh, I see -- so what is YOUR interpretation, as all you seem to say is that you don't "buy" mine, but say nothing of your own? 
A recommendation is not a mandate, else it would be called, I don't know -- a mandate.  There are many recommendations put out by Public Health officials -- I see nothing different about this one.  I mean, it is recommended that one should not smoke -- is the government paying for cessation?  It is recommended that women of a certain age get mammograms, that is not funded.  It is recommended that people get their BP, Chol, and lots of other things regularly checked -- that is not funded.  I am not talking about crossing the street -- which I've never seen a Public Health official state as an official recommendation.  So, if you disagree -- fine -- tell me your thoughts but don't insult me by equating what I'm saying with crossing the street.  I know you are more intelligent than that.

Yes -- it would be GREAT if there were funding for HIV treatment for all -- I hope someday we, as a nation, smarten up and get health care for all -- but today we don't.  Therefore -- recommendations and funding are separate issues in the USA.

Mike

When a recommendation regards a public health concern, in this case a sexually transmitted and deadly disease if left untreated, it needs to be backed up with funding or it's pointless. And not just funding but all of the other aspects of support that Newt so eloquently mentioned above.

The irony is that it would very likely be less expensive in the long run for governments to provide meds (ideally worldwide) if it meant halting rates of transmission and thereby eventually "ending AIDS." Something that seems statistically possible with "test and treat."

[Assurbanipal]

When a recommendation regards a public health concern, in this case a sexually transmitted and deadly disease if left untreated, it needs to be backed up with funding or it's pointless. And not just funding but all of the other aspects of support that Newt so eloquently mentioned above.

This ignores the fact that different parties recommend and fund.  The people who allocate funding are politicians.  Do you really think that politicians should be in charge of recommending when to start treatment?

It makes a lot more sense if first scientists and doctors make recommendations and then politicians evaluate funding in light of the recommendations, the quality of the recommenders and totality of needs and resources.

[bocker3]

When a recommendation regards a public health concern, in this case a sexually transmitted and deadly disease if left untreated, it needs to be backed up with funding or it's pointless. And not just funding but all of the other aspects of support that Newt so eloquently mentioned above.

The irony is that it would very likely be less expensive in the long run for governments to provide meds (ideally worldwide) if it meant halting rates of transmission and thereby eventually "ending AIDS." Something that seems statistically possible with "test and treat."

This may be how we would like it to be -- but I was speaking of our actual reality.  I agree with your "perfect world scenario", alas, we do not inhabit a perfect world.

Mike

[buginme2]

If we waited until any public policy change was completely funded before it was recommended we would have no policy changes. 

[TonyDewitt]

Lots of good points made in this thread:

(1) Starting drug therapy immediately is good for the patient (health wise) and good for the population (infectability wise). The attitude that waiting until you get sicker is a reasonable option always irked me. Please temper this with it is a free country and if you want to refuse to take medication that's your right.

(2) Anyone who started with an AIDS diagnosis wishes that they known sooner and had taken drug therapy sooner. Please temper this with what drugs were / were not available at the time and how toxic they may have been. We all agree that treatment today isn't anything like what it was 20 years ago.

I'll add my observation that whenever a government organization officially recognizes a need (such as immediate HIV medication), that usually translates into financial support for that need. Fortunately, NY & SF have the common sense and bravery to make it official, and eventually everyone else will too. Their statement is a lot closer to giving a crap about HIV folks than if they stated the opposite. And giving a crap is what we need everyone to do to get a handle on this epidemic.

[Inchlingblue]

This ignores the fact that different parties recommend and fund.  The people who allocate funding are politicians.  Do you really think that politicians should be in charge of recommending when to start treatment?

It makes a lot more sense if first scientists and doctors make recommendations and then politicians evaluate funding in light of the recommendations, the quality of the recommenders and totality of needs and resources.

There are already treatment guidelines in the US, devised by "panels of clinicians and researchers brought together by organizations including various U.S. government agencies, the American Medical Association, and the International AIDS Society - USA."

http://hivinsite.ucsf.edu/insite?page=md-01-01

In the case of HIV/AIDS, in my opinion there's enough evidence for NYC to "recommend" starting treatment upon diagnosis if it means, statistically, a stop to the pandemic. They just need to put their money where their mouth is or it's pointless.

[newt]

They just need to put their money where their mouth is or it's pointless.

Well said. Policy without finance is like the emperor's new suit, it delivers nothing.

- matt (lives in a socialised health benefit country, so igone) the newt

[bocker3]

In the case of HIV/AIDS, in my opinion there's enough evidence for NYC to "recommend" starting treatment upon diagnosis if it means, statistically, a stop to the pandemic. They just need to put their money where their mouth is or it's pointless.

It isn't "pointless" to the majority of folks who do have access to healthcare.  Withholding a proper recommendation because there isn't funding for everyone is ridiculous.  While, I AGREE, funding it would be ideal, the lack of funding does not remove the fact that it is good for you.

You are confusing two issues here....  plain and simple.  Again, it would be ideal to have both, but not having one doesn't negate the other.  The "all or nothing" approach is why nothing is happening in DC.  Everyone picks their argument and refuses to give.  Oh -- and before you claim that is what I am doing -- re-read what I've said.  I agree it would be ideal, but it is not NECESSARY for a recommendation to be funded.  There are still folks who can benefit.

Mike

[Since2005]

@ Bocker/Mike - First of all, I do care (in response to your comments earlier) about you, and everyone here to a point (j/k on the point). Sure, I was taken back with your abrasive comments earlier on but thanks for acknowledging it. Though, it amazes me to notice when you compare the naming/calling a third party aka govt/corp/entity’s recommendation “CRAP” with calling a forum member’s point crap/idiotic and be abrasive that way… Hope, you can also acknowledge/see the difference. Again, we may agree to disagree.

Anyways, I strongly disagree it is a GOOD recommendation (yes I am following the path of other set of docs which is to wait on the meds if its possible). Now, to get back to your point - Recommendation is not mandatory, agreed and glad we are able to enjoy that freedom as a human being. But, that’s not the point. What I don’t agree with you mainly to the fact is that you are not clearly seeing the “IMPLICATIONS” this recommendation will have. 

Let me give an example, let’s say 5 people who are HIV+ and can’t get insurance on their own. Only 3 people are allotted for benefits through govt. program (Medicare, ADAP etc.). Now, out of that 5 people, 2 of them do not need meds (good health, higher cd4 etc.), 3 of them need the meds right way (can’t wait very low cd4 etc.). Now the 2 people who could have waited starting meds per recommendation as they feel it’s a good recommendation, apply for the benefits. Remind you, funding only allows 3 people to get into programs for health benefits. Now there are 5 of them wants to get meds but 2 who could have waited (possibly due to higher cd4 count). Now, the other 2 who desperately need meds have to wait in line which in a way putting them at life-risk due to NOT HAVING ENOUGH FUNDING.

As Newt said “emperor suit” - I only can hope you could get to see now how much implications this recommendation will have. I could not agree more with Inchilgblue “ CA and NY” – doesn’t need to be a rocket scientist to figure this one out.

@Bugin – It really bugs me when I hear that you called Sean Strub “ A/Some blogger”, just to prove your point. I am not asking anyone to get medical advice from him, only doctors can provide that and if you haven’t noticed about the recommendation for the rest of the world and all parts of USA (except for two cities!! NYC and SF go figure…).  HIV is a chronic disease and you constantly have to learn about this. Look at yourself for example, how much do you know now than pre HIV. Thirty years of constant learning (pointing at Sean) on this same issue, do you have any idea how much one can learn? That’s what I meant when I said you ‘twisted’ things a bit especially when you use word like ‘untreated HIV’, ‘conspiracy’ and call a well known HIV ACTIVST a “ some blogger”, really?

@Meech – Very disappointing! With all the due respects, Meech, you have brought nothing to the table on this issue. After repeatedly been asked to show your reference(s) ( which a forum rule by the way) on the topic as you said/implied per doctors 'It is recommended to start meds as early as seroconvertion'. According to you, my references on the side effects for meds were 'half assed' researched, but, if you haven’t noticed you have done 'zero assed' research on this issue. I sure can notice your good intention but the value that you have bought to this discussion ( please go back and read your 4/5 replies) is nada.

@Eric – Interesting topic not sure I agree / understand everything on the article but thanks for sharing

@Newt – Thanks for sharing your knowledge and reference on this. I am learning about HIV and sure get to see other points of view and your comments got me exactly that. I agree as you said our body is constantly fighting due to ongoing immune activation resulting in inflammation but is it believed by most doctors that our body can handle that by itself to a certain point? As we already know about that guidelines (CD4 350 etc.). I agree inflammation can occur even people are on meds but at lower rate vs. someone who is not on meds. But, putting people on meds to control the inflammation will take me back to consider the other issues ( to avoid short or long term side effects, resources, lack of adherence issue resulting in drug resistance problems etc.).

I could definitely see how one can feel good about himself having undetective virus (as you said). You pointed out a very good point on the ‘elite controller/ long-term progressor / slow progressor' issue. If doctors take ‘ test and treat’ approach, then how one could ever find out if she/he belongs to that group?

I want to finish up by saying these –

# some people still suffer from known short-term or long-term side effects (and many unknown long-term side effects), by delaying on the meds intake, (if possible) they will be able to avoid those effects.
# waste of resources( for not being able to find out about LTP/SP or elite controller)
# Recommending this treatment approach will PUT some people ( who desperately needs meds) at health risk / life risk (by not working out a plan for allocating proper funding)
# It raises a question why SF and NYC? to reduce the HIV rate? To look out for mass?
# Majority of doctors ( counting the rest of the world) take an approach to wait and follow a standard guidelines
# Numerous researches have been done saying there are NO significant benefits to start meds early ( some of links/references were posted earlier on this thread)

Since2005 (Who would also go with majority of the doctors’ recommendation)

[bocker3]

@ Bocker/Mike - First of all, I do care (in response to your comments earlier) about you, and everyone here to a point (j/k on the point). Sure, I was taken back with your abrasive comments earlier on but thanks for acknowledging it. Though, it amazes me to notice when you compare the naming/calling a third party aka govt/corp/entity’s recommendation “CRAP” with calling a forum member’s point crap/idiotic and be abrasive that way… Hope, you can also acknowledge/see the difference. Again, we may agree to disagree.

Anyways, I strongly disagree it is a GOOD recommendation (yes I am following the path of other set of docs which is to wait on the meds if its possible). Now, to get back to your point - Recommendation is not mandatory, agreed and glad we are able to enjoy that freedom as a human being. But, that’s not the point. What I don’t agree with you mainly to the fact is that you are not clearly seeing the “IMPLICATIONS” this recommendation will have. 

Let me give an example, let’s say 5 people who are HIV+ and can’t get insurance on their own. Only 3 people are allotted for benefits through govt. program (Medicare, ADAP etc.). Now, out of that 5 people, 2 of them do not need meds (good health, higher cd4 etc.), 3 of them need the meds right way (can’t wait very low cd4 etc.). Now the 2 people who could have waited starting meds per recommendation as they feel it’s a good recommendation, apply for the benefits. Remind you, funding only allows 3 people to get into programs for health benefits. Now there are 5 of them wants to get meds but 2 who could have waited (possibly due to higher cd4 count). Now, the other 2 who desperately need meds have to wait in line which in a way putting them at life-risk due to NOT HAVING ENOUGH FUNDING.

As Newt said “emperor suit” - I only can hope you could get to see now how much implications this recommendation will have. I could not agree more with Inchilgblue “ CA and NY” – doesn’t need to be a rocket scientist to figure this one out.

Your implications have nothing to do with the science of the recommendations -- and everything to do with the funding (or lack of).  The fact that all 5 can't get it, doesn't mean that none should.  The fact that YOU think some "don't need meds yet" is irrelevant to this discussion.  The recommendation is that starting right away is good for folks health. (again -- any individual should do what is right for him/her based on discussions with their doctor).
So -- go on and disagree with the recommendations, but you can't use the "they don't need meds yet" logic to get others to join your view, because if one agrees with the recommendation (and I do), then they all need neds now.

The only problem associated with this recommendation is that not everyone CAN follow it because of funding.  Howeve, as I have stated previously, that doesn't negate the idea/facts behind it.

Mike

[wolfter]

It appears to me that even with this recommendation, a great many aren't willing to follow it.  Look how many threads contain comments regarding the fear of taking one pill a day for the rest of their lives.  And some of these people have low CD4 and high VL counts.

So, out of those 5 individuals that were just discussed, I'd guess 3 out of 5 wouldn't follow the recommendation anyways.  They don't follow their doctor's recommendation even when indicated.

There are many things the medical community recommends but that doesn't mean that everyone should automatically follow them.  Do the research and make informed personal decisions.

Wolfie 

[Assurbanipal]

Since

Your argument about early treatment potentially knocking people in greater need onto a waiting list doesn't make any sense in NYC or SF. 

They don't have waiting lists.

Since2005 (Who would also go with majority of the doctors’ recommendation)

Also, your signature says you would go with the majority of doctor opinion, which implies that you believe most doctors think one shouldn't start with your numbers.

But that would be a misstatement, at least for well-informed doctors in the US. (The ill-informed need not, I think, concern us.)

Well informed doctor opinion in the US is evenly divided -- on whether they think patients with high tcell counts should start or whether think it is merely optional to start. 

That's not a majority in favor of waiting.

 The people they agree should not start are primarily those who aren't ready to commit to treatment.




Assurbanipal

(edit.... still getting used to the new layout)

[newt]

What the US 2011 guidelines say is this:

• Antiretroviral therapy (ART) should be initiated in all patients with a history of an AIDS-defining illness or with a CD4 count <350 cells/mm3 (AI).
• ART is also recommended for patients with CD4 counts between 350 and 500 cells/mm3 (A/B*-II).

...

• For patients with CD4 counts >500 cells/mm3, Panel members are evenly divided: 50% favor starting ART at this stage of HIV disease (B); 50% view initiating therapy at this stage as optional (C) (B/C-III).

The A B C I II III of this is important. A means a strong recommendation, B means a moderate recommendation and C means an optional recommendation. Grade I evidence means randomised control trial(s) with validated clinical endpoints, II non-randomized trials or observational cohort studies with long-term clinical outcomes and III expert opinion.

Therefore on the starting at 500+ point, I disagree with concluding US doctors either think you should or have the option to start. It seems much less clear cut than the docs broadly in favour, but some being more so. They can't make up their mind at all so it's just an opinion. Some of them will recommend starting at a high CD4 count, others will go no, wait there's no data to say it's better than waiting to your CD4 count is 500 or less.

Personally, today, I would start, guidelines are not everything, but this was not what I thought when I was facing up to treatment a few years ago. Plus health policy, especially if you are looking at a public health benefit, needs to be evidence based. To get the public health benefit and economic benefit (in time) you need to have universal access  to treatment and a decent testing strategy to capture undiagnosed people, especially in the early stages of having HIV when they are most infectious. Otherwise "test and treat" don't work.

The median CD4 count at diagnosis in New York in 2008-9 was 314 (range 90–502) *, so this treating above 500 argument is perhaps moot.

- matt

* AIDS Research and Treatment Volume 2012 (2012), Article ID 869841
available at: http://www.hindawi.com/journals/art/2012/869841/

[mecch]

Since, I have nothing but friendly thoughts for you, and concern, have followed you closely since you joined our forums.
I didnt post studies because after my post Newt did give you links.
My personal take is that you are projecting your own anxiety, or fear, or ambivalence, about being HIV+ and thus the need for HAART, into an intellectual argument that you aren't arguing very well. 
You want these guidelines to be "crap" and no matter how many people explain why it isn't crap, but very serious, grown up, career, epidemiologists, research scientists, health policy experts, and doctors, coming together on a consensus about how and when to treat HIV.  As the years go by.  2000 was one story. 2005 was another. 2010 another. And now there are many cities in the world moving to this idea.  Its the same in Paris, Geneva, Berlin.  Many many doctors just think, all things considered, its advisable to offer treatment at diagnosis, even if that is early in an infection and numbers are good. Even if the nation still has more or less the American CDC recommendation.  Good for the patient.  And good for the city. Good for the community. etc etc etc.

I reported in this forum a few years ago that unofficially this was the general trend in Geneva.

You can jump through hoops over and over and over to try to avoid facing what this means to you personally, and avoid overcoming your own cognitive dissonance.  The result is arguments and taking exception to people informing you.  And your arguments are unconvincing and the name calling "crap this.. crap that" immature.

[newt]

Many many doctors just think, all things considered, its advisable to offer treatment at diagnosis, even if that is early in an infection and numbers are good.

Or not, as in UK, the USA often depending on doctor preference/whether you have public or private insurance << see the finance matters, Russia, South Africa, China, India, Brazil, nearly all of Europe << see EACS guidelines and various national guidelines, don't say start straight away, say start at 350-500 if asymptomatic, consider/recommend in some circumstances.

So people thinking the world, all those docs and patients reps working hours reviewing the evidence to draft guidelines, are moving to a consensus of immediate treatment at high CD4 counts are jumping the gun. The world is having a discussion about the merits/demerits, and individual v public benefit from ARVs.

There isn't enough data to make a consensus guideline recommendation for individual health for treatment at CD4 500+. And perhaps there is a confusion here between 1) individual benefit 2) public health benefit in this thread.

Clearly, individual doctor/patient discussions may favour early treatment. << and I am in favour, but can't justify this based on the data.

And clearly, particular docs may conclude, all things considered, early treatment is the best option at present << but can't justify this based on the data

And also clearly, as part of a package of meeting basic needs, increased testing and therefore aiming to reduce onward transmission it makes sense. << but there are only models for this not data

But the position is really not settled in terms of benefit to the individual, hence the START study comparing treatment at CD4 500+ vs 350+ or indeed how the public health benefit can be achieved without everything else aside from ARVs being in place, hence reticence in many places to go down this route.

There are no evidence-based guidelines that say treatment at diagnosis regardless of CD4 count is the best option. If I am mistaken, please post a link to the guideline here.

- matt

[Rhaegar]

Bottom line, imho, is to diligently search for a dr you trust and believe in; someone who has vast experience in treating poz patients. Someone who participates actively in research and trials and who has treated large numbers of patients. Sometimes the dr needs to rely not only on lab results but on gut feeling based on treating patiients with similar symptoms and  reactions to different meds in the past.

I cannot emphasize this enough.  My doctor chose to start me on meds the same day I received my diagnosis.  I have a K103N mutation, which I found out the following week after starting treatment, but I had already started on Truvada + Norvir/Prezista.  It could have been a lucky guess, but it was his gut feeling.  He said that starting treatment immediately would put a stop to the more damaging aspects that newt wrote about above.

Sometimes I wish there was publicly available data about a community or state's viral load in relation to each other.  Is the viral load of NYC collectively higher or lower than San Francisco?  (as an example)

[Since2005]

I cannot emphasize this enough. My doctor chose to start me on meds the same day I received my diagnosis.  I have a K103N mutation, which I found out the following week after starting treatment, but I had already started on Truvada + Norvir/Prezista.  It could have been a lucky guess, but it was his gut feeling.  He said that starting treatment immediately would put a stop to the more damaging aspects that newt wrote about above.

I believe in another thread you have mentioned that you dove right into treatment when you were diagnosed since your CD4 count was below 200 . 

I don't think your doctor was guessing!!

@assurbanipal – Please rethink about waiting list part for NYC and SF. Funds are not unlimited. I hope you did read the 5 people example. Oh yes, Majority of docs are in favor of waiting. 2 cities in the whole world!! Since when did HIV become a location specific disease? I would read Newt’s posting about the guidelines then hopefully you get to see the majority of docs opinions.

I didn’t post studies because after my post Newt did give you links.

...Many many doctors just think, all things considered, its advisable to offer treatment at diagnosis, even if that is early in an infection and numbers are good. I reported in this forum a few years ago that unofficially this was the general trend in Geneva.

YOU even went further by saying "Even sometimes within months after seroconversion.  Some even see a benefit to starting at seroconversion."
Please make your arguments based on the studies, data etc. just like Newt said. Have you even read his comments?

I will just post what Newt/Matt posted/asked for YOU to support your arguments

There are no evidence-based guidelines that say treatment at diagnosis regardless of CD4 count is the best option. If I am mistaken, please post a link to the guideline here.

Since2005 (who respects people opinions that are based on the facts even if that reflects the opposite views of his own)

***Edited to clarify...

[Rhaegar]

I believe in another thread you have mentioned that you dove right into treatment when you were diagnosed since your CD4 count was below 200 . 

I don't think your doctor was guessing. He made the right decision if I am reading your comments correctly!

Yes, I should have clarified that the guess I was referring to was about what particular treatment I should be on.  I keep forgetting that I really had no choice other to start treatment.

[spacebarsux]

Or not, as in UK, the USA often depending on doctor preference/whether you have public or private insurance << see the finance matters, Russia, South Africa, China, India, Brazil, nearly all of Europe << see EACS guidelines and various national guidelines, don't say start straight away, say start at 350-500 if asymptomatic, consider/recommend in some circumstances.

I agree completely and with the rest of your post as well.

As per my understanding, the NY recommendation was made more from a public health standpoint rather than an individual health benefit standpoint.

While it is indeed possible and may even be likely that commencing HAART upon diagnosis with CD4>500 may be beneficial in the long run, current scientific data DOES NOT conclusively prove that - and that is precisely why the START clinical trial results are so crucial.

Until and unless the START clinical trials confirm that the benefits of early treatment significantly outweigh the negatives, namely- harmful side effects, adherence and resistance issues, any assertion that early commencement of therapy is primarily for the benefit of a person’s health seems misleading at best and can also be perceived as being agenda driven.

Here in India, my doctor seemed pretty reluctant to put me on treatment until my CD4’s start hovering around the 350-400 region. When I told him about starting therapy sooner to minimize the effects of viral replication he informed me about the toxic (albeit much reduced from a decade ago) effects of the drugs on the vital organs and that in the end it is my call on when I wish to start. He’s obviously not an idiot- and what he said about toxic effects, adherence, resistance is reflected in the current WHO Guidelines, EU Guidelines, and this cannot be glossed over, at least not until we have more solid scientific evidence and data. Evidence that can honestly be described as being "Incontrovertible" or "Overwhelming". I don't think we're there today- for if we were- the WHO, EU, Africa and Asia would also be recommending a 'test and treat' approach. They are not.

 Edited to add:

The following was stated in the article linked by the OP:

“HIV experts are split about whether early therapy should be recommended or optional. Besides the high costs, the pills have side effects from nausea to liver damage. Patients unwilling to take them religiously for life could develop drug resistance. But there's growing evidence that untreated HIV can lead to cancers and heart disease. Antiretroviral drugs are safer, have fewer side effects and work better than they did in the past.”

Doctors in the US are divided on recommending early therapy or keeping it optional - which is again based on their 'expert opinions', it maybe rooted in sound medical opinion no less, but it is not yet backed by solid cohort clinical trials.

I feel until there is a clear and unambiguous consensus amongst HIV experts regarding the overall benefit of early treatment, using the word ‘recommendation’ is in itself fallacious (in so far as it pertains to the health of the individual) since such a statement rests on rather flimsy, shaky and discordant pillars. And thus, one comes to the inescapable conclusion that this so called ‘recommendation’ is more about cutting new infections than anything else- which may justify the use of the word 'recommendation' if they'd put in place a funding mechanism but since that is also lacking it’s quite nonsensical to call it a 'recommendation' in the first place.

They should label it as a "Public Health Policy Objective"

[bocker3]

Since2005 (who respects people opinions that are based on the facts even if that reflects the opposite views of his own)

OK -- time to call bull on you.....   Where are YOUR FACTS??  All you are throwing out are your thoughts.

FACT:  Some folks who are smarter than you have made a recommendation about starting treatment (repeat -- a RECOMMENDATION, not a REQUIREMENT).  You don't agree with said recommendation.  That is fine, you are entitled to your opinion.  However, you are going through all sorts of contortions, as well as, picking and choosing comments from others that seem to "support" your opinion all in an attempt to show the recommendation is "bad".  Well, you can NOT do so -- you can say all you want and it amounts to nothing more than your own opinion. 
The recommendation has been made and people will choose to follow it or not.  Honestly, I have no idea what is driving you here.  Your desire to discredit this recommendation is beyond all reason.  If you don't want to start meds -- don't start.  But please stop insulting us with all your crazy "examples" of problems that don't follow any form of logic.  Based on this recommedation, no one who starts meds would "not need them", therefore, they can't possibly be taking them from someone who does.  Why?  because they ALL need them.
This is a Public Health recommendation -- when you attain your Public Health degree, then your opinion may hold sway, for now it is simply your opinion.
Mike

[TonyDewitt]

There's so many pluses regarding the recommendation that unless you suspect a covert plan by the drug companies to make more money off of the epidemic, this is a slam dunk of sensibility. LeatherMan, I just read your well thought out analysis of how drug therapy not only saved people's lives, but also added decades of productive life (and hopefully will continue to do so). Thanks for steering us back to common sense again, along with your previous point that taking a few pills a day is a small chore for staying alive. Instead of quibbling about these things, we should be directing our concern towards the medications working indefinitely, and newer / better treatments being developed. Before there was a cure for syphilis, people would treat it by literally poisoning themselves with mercury (not sure if that would work for HIV, but would anyone want to try it?) in order to save their lives, since dying from untreated syphilis was worse than the pain, suffering, and risk of dying via mercury poisoning. Things have come a long way, and hopefully things will be going a long way too. I'd love to see LeatherMan blowing out the candles on his 90th birthday cake with the words "I told you so" written on it!

[Since2005]

OK -- time to call bull on you.....   Where are YOUR FACTS??  All you are throwing out are your thoughts.

Please re-read, FACTS are provided here -

Reply #25, Reply # 50, Reply # 55, Reply #71, Reply # 78

In addition to that, please read this below  -

http://www.medpagetoday.com/MeetingCoverage/IAC/21358
[Primary source: International AIDS Conference
Source reference:
Jonsson Funk M, et al "THLBB201: HAART initiation and clinical outcomes: insights from the CASCADE cohort of HIV-1 seroconverters on 'When to Start'" J Int AIDS Soc 2010.]

Where it talks about “Researchers suggest that using antiretroviral therapy in patients with CD4-positive cell counts of more than 500 cells/microliter has limited benefit.”
WHO, EU, ASIA, AFRICA and Majority of US (we are talking about above cd4 above 500+ etc. guidelines) who have NOT followed this recommendation -

Of course, I will raise a hell lot of questions if there are no data/guidelines supporting this recommendation. There are no evidence-based guidelines that say treatment at diagnosis with CD4 count higher than 500 is the best option. As newt suggested also, if you have ANY, please provide the guideline or links.

Since2005

[bocker3]

Since --- I'm done talking to your brick wall.  It is clear that you don't know anything about Public Health, so go on your merry way.  Maybe some day you'll get the concept of public health vs. individuals, until that time I will ignore your rants.

[Since2005]

It has already been stated NUMEROUS times in this thread about this recommendation from public health perspective.

We talked about LACK OF FUNDING
We talked about the need to put proper TESTING STRATEGIES,
We talked about convincing the general population (both US and the rest of the world) that treating people at diagnosis is actually beneficial
We talked about meeting basic needs (Housing, Universal Healthcare, etc.)

This recommendation brings no values in terms of public health (to reduce HIV rate/ stop the pandemic) unless as I agree with Inchilngblue 'put the money where the mouth is otherwise this would be pointless'.

So, either way we look at it, Individual benefits (none, due to lack of research/data etc.) vs. public health benefits (the points above) this recommendation, I would echo with others,         'It delivers nothing!'

Since2005

[leatherman]

this recommendation as I would echo with others 'it delivers nothing!'

perhaps you're just expecting too much. Do "recommendations" ever deliver anything? Aren't recommendations like "suggestions" and not definitive "policy"? Won't a recommendation actually slowly be putting into place the necessary underpinning for the possible future policy? That is, won't this recommendation make doctors begin to consider treating patients earlier? won't it make policy-makers begin to consider more funding sources and pricing schemes? Won't it make health departments and clinics being to plan about the amount of patients that will need to be seen and begin to set up resources to treat those new clients?

Thank goodness a recommendation isn't expected to immediately go into effect because without the right about of doctors, funding, clinic space, etc there would be no way to accomplish this kind of recommendation.  However, by putting out a recommendation like this the healthcare system is able to "gear up" and get resources lined up (and that includes funding) so that the recommendation can be fully implemented and actually then become public policy.

[Since2005]

perhaps you're just expecting too much. Do "recommendations" ever deliver anything?

This one does. I should not have said nothing rather should have said it does deliver lots of wastes. Here it is -

The IMPLICATIONS of this recommendation will have some IMMEDIATE EFFECTS as I stated earlier -

1.   Some people are going to suffer from side effects that they could possibly avoid
2.   Some people would still suffer from drug resistance problems due to lack of adherence issues
3.   Waste of resources( for not being able to find out about LTP/SP or elite controller)
4.   Recommending this treatment approach will PUT some people ( who desperately needs meds) at health risk / life risk  due to sudden increased competition and lack of proper funding)
5.   Numerous researches have been done saying there are NO significant benefits to start meds early ( some of links/references were posted earlier on this thread)  and therefore, people are going to be put on meds Unnecessarily.

These are the RISKS will be immediately effective unless some of these below gets taken care of by the providers. Can policymakers implement any of these?

1.   Universal Healthcare
2.   Other basic needs ( housing, foods, other social benefits etc.)
3.   Near 100% perfect TESTING STRATEGIES ( have to catch everyone!)
4.   PROVE that starting meds at 500+ is beneficial ( NO DATA proves that)
5.   The whole world has to be in it ( not just parts of USA) to stop the pandemic

Is it doable? achievable? The REST OF THE WORLD follows a guidelines for starting meds at cd4 350+ etc. By recommending this in TWO cities in USA will have almost none/zero impact unless all five things gets implemented to say the least.

Public health officials have to achieve all 5 of them. Unfortunately, NONE EXISTING at the moment and the given reality that we are in, none will be available in any near future ( e.g. # 1 universal healthcare).

Then, why waste resources? put people at risks or let them suffer? Avoid people who could have been a LTP or elite controller? These are people we may need to lead to a possible cure ( hopefully). But, that's not the end of it, After all these damages, the goal aka Public health issue STILL WILL NOT BE SOLVED.

This  recommendation brings nothing but sufferings (side effects, waste of resources, drug resistance problems, putting people at risks due to lack of funding etc.) because of the IMMEDIATE IMPLICATIONS that it will have. So, what else should we call it? BIG BULL CRAP. Sure go ahead...

[mecch]

The IMPLICATIONS of this recommendation will have some IMMEDIATE EFFECTS as I stated earlier -

1.   Some people are going to suffer from side effects that they could possibly avoid

Maybe a few, out of thousands who benefit, and those few would suffer just on or two years more than otherwise.  This is a weird fear. For example, what is difference nowadays if someone seroconverts and then starts HAART after 6 months or a year, rather than 2 or 4 or 6 years or later? Say the hypothetical sufferers you mention are 30ish. They will be living a normal lifespan.  I think the hypothesis nowadays is minimal side effects, generally, mostly, for newish infections going on current HAART and looking toward the future.

2.   Some people would still suffer from drug resistance problems due to lack of adherence issues

That happens but has no relation to the time after sero-conversion one is put on HAART.  You seem to be always assuming a recommendation for early treatment will be mandatory and push people onto something they are not ready for? Or can’t afford? Or what?  Any doctor with a patient observed to be a potential risk for adherence is going to treat that person accordingly.  With or without the changed CD4 recommendations.

3.   Waste of resources( for not being able to find out about LTP/SP or elite controller)
This elite controller fear seems to be pure projection of a personal wish or regret.

Science has identified enough elite controllers for their research needs. This fear of yours is of no concern to the entire HIV+ population.   If some individual HIV+ person has a zero viral load or very low viral load, every doctor is going to use a “special case” protocol when advising this person when and why to start HAART.  It is an exceptional situation.   Also you have mistakenly assumed that early treatment recommendations means before set points are observed and the recommendation doesn't say that specifically, at all. 


4.   Recommending this treatment approach will PUT some people ( who desperately needs meds) at health risk / life risk  due to sudden increased competition and lack of proper funding)

If tomorrow a city decides among its population of known HIV+ people, a lot more should be offered treatment, following a recommendation, it does NOT mean people already on treatment are going to lose their access.   If a city, state, nation knows “100” people could benefit from treatment, but can pay for only 50, nothing changes from the current situation that says only 60 of 100 of those people need treatment, and they can only pay for 50. Its still just 50 treatments. Its a funding issue.

5.   Numerous researches have been done saying there are NO significant benefits to start meds early ( some of links/references were posted earlier on this thread)  and therefore, people are going to be put on meds Unnecessarily.

I agree about your presentation of the science. But the “unnecessarily” is only based on your arguments 1-4, which are not very good.