Meds, Mind, Body & Benefits > Questions About Treatment & Side Effects

Experts debate when to start HIV therapy

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Here's an article about treatment start, that I found interesting.
Two experts from international guideline committees discuss the matter.
What I find interesting is the fact that, apparently, when you look at the hard data the case for an early treatment start isn't quite as settled as it may seem.

Here's a short snippet:

--- Quote ---How do the US guidelines differ from other guidelines worldwide, such as in Europe?

SD: I think this is largely a philosophical issue. It depends on your default perspective. If your default perspective is ‘we should treat until you prove that we should not treat’, then you go with the American guidelines. But if your default perspective is ‘you should not treat until we prove it’s actually better to treat’, then you should wait. There are no definitive, randomized, clinical trial data showing that you should treat people whose CD4 counts are above 350. Everyone agrees that such data is lacking. So what certain guideline panels have done is say that in the absence of definitive therapy, we’re just going to assume that untreated disease is more benign than treated disease. That is philosophically quite distinct from the perspective that the American guidelines have taken, which is the complete opposite.
--- End quote ---

The full Article: Caroline Sabin and Steven Deeks debate when to start HIV therapy

Jeff G:
Thank you for posting this . Its a keeper so I made a sticky topic .

Miss Philicia:
The key section, for me at least, is the part about it being more of a philosophical question. So in some ways I find this all interesting, and in other ways completely not so -- if that makes any sense.

I also wish, at least on the UK side, that they addressed cost considerations more than in this blurb. I'm sure as doctors they wish to act like that doesn't exist, but I don't see how that is realistic in a setting like NHS -- and I actually don't find that upsetting, it's a reality. Or perhaps I'm completely off-base.

In the end I'm not even sure of my own opinion. I think 350 is too low, but would find a UK standard of 500 practical both clinically and cost-wise. I'm hesitant to endorse the new US position of putting everyone on something straight away, for the same reasons but in reverse, though I err on the side of inflammation damage at some point.

And the other important section for me:

there are epidemiologic data, as well as strong theoretical considerations, that suggest the harm associated with delaying therapy will not emerge until years later, when patients are much older. That is to say, if a decision is made to defer therapy in a person in their 30s and 40s, the consequences of that deferred therapy is not going to be measurable until people are in their 60s and 70s. This leads to the issue of whether or not this question will ever truly be definitively addressed. No-one can afford, and no-one really wants, a study that will play out for decades to prove this conceptual issue.

I honestly believe we are now seeing this play out in real time with Long Term Survivors, and the real toll of pre-HAART treatment and the damage it's doing almost two decades later, combined with the fact that the drugs then had higher toxicity profiles of course.

Recently contracted and diagnosed. (2 months)

All my nurse practitioner seems to want to hear is that I am ready to start meds.

In some of my limited research, I have obtained the following beliefs:

  Not everyone with HIV has to take meds.  I personally know a 45 year old who was infected at 17 and has never had to take meds - yet.

  Upon initial infection/symptoms, viral load can spike to millions, so 400,000 VL at initial test with 1 month infection is not 'alarming' discovery.

  My CD4 is over 500, which is good.  I believe this is the area of concern, more than viral load.

  While a new study showed that some who started meds right away and stopped after 7 years appear to have a functional cure, there were others in the study that developed drug resistance after 9 months of meds.  Risk / Reward has to be weighed.

  Somewhere I read that a 'baseline' of viral load should be determined prior to starting meds.  I don't think that is possible unless I wait a few three month intervals to see how my immune system reacts.

When i mentioned this to the practitioner, she dismissed my research.  She also asked that I bring in some of my research to the next appointment.  I feel like she wants to discount it. 

It seems apparent that the meds are working wonders for many, if not most.  Undetectible is a great result and I'm sure those working to prevent the spread of HIV love seeing people get on meds and become undetectible. 

However, I've also read that viral load is not the determining factor in suggesting meds.   CD4 count is.  Not to say that VL is completely discounted and around 400,000 VL is the unofficial standard for cause for concern. 

If my VL is still high after my next blood work, I will seriously consider starting meds immediately.  If my CD4 drops below 500, I will start meds immediately.

I've seen all the post on "Only YOU can decide when to start meds".   I get it, but I'm doing this alone and not against taking meds.  I just want to do it for my health benefit, if needed and not just to get undetectible to protect the world from me.

Am I crazy to wait?  Is my decision based on reasonable public knowledge?
Or is the practitioner right, I should start meds now?   

2nd Labs 6/2014
VL 87,000 down from 400,000 in March
CD4 487 down from 530 in March

Still not sure whether or not to start meds.  Resistant to Viramune.  Couldn't even follow doctor on what she'd prescribe. 


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