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Author Topic: New recommendation to begin treatment immediately  (Read 8003 times)

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Offline buginme2

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New recommendation to begin treatment immediately
« on: December 01, 2011, 03:13:32 PM »
New York City health department released today that they now recommend beginning HIV treatment as soon as you are diagnosed regardless of CD4 counts, etc.

Here is an interesting quote from the article:

"The New York City health department is a little bit ahead of the curve," said Dr. Michael Saag, AIDS researcher at the University of Alabama at Birmingham and past chairman of the HIV Medicine Association. "In my opinion, the rest of the country will follow and I think it will be pretty quick."

"It's an anachronism. It's old school. It's yesterday," he said, of the standard measure of the CD4 count as a way to determine the strength of the immune system. "I agree completely with the New York City health department."

Link:

http://www.cbsnews.com/8301-504763_162-57334626-10391704/hiv-patients-need-aids-drugs-immediately-nyc-recommends/
« Last Edit: December 01, 2011, 03:15:58 PM by buginme2 »
"All I need are some tasty waves, a cool buzz, and I'm fine."

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Offline John2038

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Re: New recommendation to begin treatment immediately
« Reply #1 on: December 01, 2011, 03:21:48 PM »
F-I-N-A-L-L-Y !! *applauses*

Offline Miss Philicia

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Re: New recommendation to begin treatment immediately
« Reply #2 on: December 01, 2011, 03:27:01 PM »
That's great and all, but it doesn't address the 20% that don't know that they're infected, or of even greater concern, the 72% that know they're infected but don't adhere to treatment and are thus not having an undetectable viral load. linky

I think we often forget that this forum isn't very representative of the poz community, it's just a slice, and a slice of people that are fairly adherent with their treatment. There are huge slices of the pie that are urban or rural poor, and don't have a stable enough life to deal with treatment regularly, etc. Also higher levels of alcohol and drug abuse with accompanying depression, much of this simply isn't addressed effectively.
"I’ve slept with enough men to know that I’m not gay"

Offline buginme2

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Re: New recommendation to begin treatment immediately
« Reply #3 on: December 01, 2011, 03:32:37 PM »
That's great and all, but it doesn't address the 20% that don't know that they're infected, or of even greater concern, the 72% that know they're infected but don't adhere to treatment and are thus not having an undetectable viral load. linky

I think we often forget that this forum isn't very representative of the poz community, it's just a slice, and a slice of people that are fairly adherent with their treatment. There are huge slices of the pie that are urban or rural poor, and don't have a stable enough life to deal with treatment regularly, etc. Also higher levels of alcohol and drug abuse with accompanying depression, much of this simply isn't addressed effectively.

Absolutely, and that statistic that 28% of HIV pos people in the US have an undetectable viral load and as many as 50% of those who know they are positive do not even see the doctor on a regular basis is...shocking to me and horrible from a public health measure.

That said, even though treating everyone may not be practical or even possible.  I'm under the opinion that public policy should be of the theory of what we want it to be (treat everyone) understanding that, the reality may fall short.  We should always be working towards that goal though.   :)
"All I need are some tasty waves, a cool buzz, and I'm fine."

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Offline jkinatl2

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Re: New recommendation to begin treatment immediately
« Reply #4 on: December 01, 2011, 04:00:32 PM »
That's great and all, but it doesn't address the 20% that don't know that they're infected, or of even greater concern, the 72% that know they're infected but don't adhere to treatment and are thus not having an undetectable viral load. linky

I think we often forget that this forum isn't very representative of the poz community, it's just a slice, and a slice of people that are fairly adherent with their treatment. There are huge slices of the pie that are urban or rural poor, and don't have a stable enough life to deal with treatment regularly, etc. Also higher levels of alcohol and drug abuse with accompanying depression, much of this simply isn't addressed effectively.

I like to think I help skew the forum stats closer to reality with my stunning lack of adherence to medications.

"Many people, especially in the gay community, turn to oral sex as a safer alternative in the age of AIDS. And with HIV rates rising, people need to remember that oral sex is safer sex. It's a reasonable alternative."

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Welcome Thread

Offline Valmont

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Re: New recommendation to begin treatment immediately
« Reply #5 on: December 01, 2011, 08:29:53 PM »
Very interesting...

Here I don´t have access to any treatment till my CD4 get under 500 in the best of the case.

Is there some place it is possible to access to treatment regardless to CD4 count????
Apr 2011: Diagnotized
Jun 2011: CD4: 504  VL: 176.000
Dic 2011: CD4: 714  VL: 95.000
May 2012: CD4: 395 VL: 67.000
Jun 2012: CD4: 367
Agu 2012: Starting Emtricitabine 200 mg / Tenofovir 300 mg and Efavirenz 600 mg (2 pills) different brands or VIRADAY
Sep 2012: VL: 138
Dic 2012: CD4: 708 VL: <34  %CD4: 32%
Jan 2013: CD4: 707 VL: <20
May 2013: CD4: 945 VL: <34 %CD4: 33%
Agu 2013: CD4: 636 VL: <34 %CD4: 50% (is that possible?)

Offline Since2005

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Re: New recommendation to begin treatment immediately
« Reply #6 on: December 02, 2011, 12:43:17 AM »
New York City health department released today that they now recommend beginning HIV treatment as soon as you are diagnosed regardless of CD4 counts, etc.

Yada Yada yada!!!!  Drugs/treatment should be based on individual evaluations of risk and benefit.. etc..

I hope they did talk about short and long-term side effects for starting treatments and also for lack of adherence developing drug resistance issues..

Give me a break and yaa if you respond to this.. save the denialist crap for someone else!

Another CDC crap!!!!!

Since2005
(Who really liked Sean Strub’s comments “While the newer drugs and regimens are more effective and generally less toxic than the worst of the old ones, many people will still develop very serious side effects from therapy, including many people who are just commencing therapy today.  We know more about these side effects than ever before, but there is an ocean of knowledge we don't yet have and it is clear that there are side effects that don't show up for years and years, decades even, after one commences therapy” or this one – “The most successful survivors, in my experience, are those who become very well-informed, remain skeptical and are constantly listening to and learning from others who have HIV. “


N.B. I am not advocating delaying meds in general. Just saying in advance ;)
 I am not here to argue I have just voiced my opinion and I always will whatever that I believe in.

Offline John2038

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Re: New recommendation to begin treatment immediately
« Reply #7 on: December 02, 2011, 01:18:29 AM »
Very interesting...

Here I don´t have access to any treatment till my CD4 get under 500 in the best of the case.

Is there some place it is possible to access to treatment regardless to CD4 count????

In South Africa, 1 months Atripla, sold in 2 pills (Stocrin/Truvada) cost 90USD at the phamacy.
You will need a prescription from RSA doc (~30USD), and can buy months supply. 

Cheers
John

Offline spacebarsux

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Re: New recommendation to begin treatment immediately
« Reply #8 on: December 02, 2011, 02:46:31 AM »
What's the hell is the point in waiting for the START Clinical Study results that are to conclusively determine whether there is a 'net benefit' in commencing therapy with counts >500 ?  

All these clinics seem pretty convinced that early therapy is the best course for some reason or the other,regardless of conculsive proof from the START clinical study results.

Is there a single 'non-US' clinic that has also adopted this 'test and treat' approach? If so, where?
Infected-  2005 or early 2006; Diagnosed- Jan 28th, 2011; Feb '11- CD4 754 @34%, VL- 39K; July '11- CD4 907@26%,  VL-81K; Feb '12- CD4 713 @31%, VL- 41K, Nov '12- CD4- 827@31%

Offline bufguy

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Re: New recommendation to begin treatment immediately
« Reply #9 on: December 02, 2011, 10:32:01 AM »
I tend to agree with Doctors that are recommending that any HIV+ person start treatment right away.
Let's face it very few people will be elite contollers or long term non progressors which means that without meds their CD4 will continue to fall. There is also mounting evidence that people that stay undetectable and maintain high CD4 counts keep inflammation to a minimum and are less likely to develop cardio problems, cancers and other maladies.
Medications have improved significantly too. Although they still have side effects and long damage is still unknown, it is much better than 10-15 years ago and they are certainly easier to take...in many cases 1 pill per day. A track record is being developed.
My point is that if meds are inevitable for the vast amount of people eventually, why wait? What is 5 years out of 50 years for a young person.
5/29/08 confirmed HIV+
6/23/08 Vl 47500  CD4 511/29% CD8 .60
start atripla
8/1/08 Vl 130  CD4 667/31% CD8 .70
9/18/08 Vl un  CD4 not tested
12/19/08 Vl un CD4 723/32% CD8 .80
4/3/09 Vl un CD4 615/36% CD8  .98
8/7/09 vl un CD4 689/35% CD8 .9
12/11/09 vl un CD4 712/38% CD8 .89
4/9/10 vl un CD4 796/39% CD8 1.0
8/20/10 vl un CD4 787/38% CD8 1.0
4/6/10 vl un CD4 865/35% CD8 .9
8/16/10 vl un CD4 924/37% CD8 1.0
12/23/10 vl un CD4 1006/35% CD8 .9
5/2/10 vl un CD4 1040/39% CD8 .9
8/7/13 vl un CD4 840/39% CD8 .9

Offline buginme2

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Re: New recommendation to begin treatment immediately
« Reply #10 on: December 02, 2011, 10:38:13 AM »
What's the hell is the point in waiting for the START Clinical Study

Is there a single 'non-US' clinic that has also adopted this 'test and treat' approach? If so, where?

Its done from a public health standpoint.  If you reduce an entire communities viral load you will reduce the overall number of cases of HIV ie people dont spread HIV if they are undetectable.  The start study is looking at the health of the specific patient, two different issue.

Yes, Vancouver BC Canada was the first (that I am aware of) to push for/advocate universal treatment.  

This is already the policy in San Francisco.
« Last Edit: December 02, 2011, 10:41:47 AM by buginme2 »
"All I need are some tasty waves, a cool buzz, and I'm fine."

http://www.youtube.com/watch?v=6e0gcEC1TWE

Offline Valmont

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Re: New recommendation to begin treatment immediately
« Reply #11 on: December 05, 2011, 04:51:44 PM »
In South Africa, 1 months Atripla, sold in 2 pills (Stocrin/Truvada) cost 90USD at the phamacy.
You will need a prescription from RSA doc (~30USD), and can buy months supply. 

Cheers
John

And it is easy to travel with this?  To buy them? To keep them well conservated?  It is avalable in the whole country that way?

I won´t be afraid to do this travel for medecines... and affording to know a probably very interesting country...  For curiosity (I´m not yet on med), in Brasil is it possible to find this king of offer?

Apr 2011: Diagnotized
Jun 2011: CD4: 504  VL: 176.000
Dic 2011: CD4: 714  VL: 95.000
May 2012: CD4: 395 VL: 67.000
Jun 2012: CD4: 367
Agu 2012: Starting Emtricitabine 200 mg / Tenofovir 300 mg and Efavirenz 600 mg (2 pills) different brands or VIRADAY
Sep 2012: VL: 138
Dic 2012: CD4: 708 VL: <34  %CD4: 32%
Jan 2013: CD4: 707 VL: <20
May 2013: CD4: 945 VL: <34 %CD4: 33%
Agu 2013: CD4: 636 VL: <34 %CD4: 50% (is that possible?)

Offline LM

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Re: New recommendation to begin treatment immediately
« Reply #12 on: December 05, 2011, 05:41:31 PM »
Despite possible benefits, I see this move of great interest for pharmaceutical companies. I don't doubt there is a lobby behind this, so I'm very skeptical to the real motives.

For curiosity (I´m not yet on med), in Brasil is it possible to find this king of offer?

No, it's illegal to sell HIV meds in Brazil, since the government provides them for free. No Atripla, though.

Offline Inchlingblue

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Re: New recommendation to begin treatment immediately
« Reply #13 on: December 05, 2011, 08:41:39 PM »
I wonder if the great city of NY will be supplying free meds to those without health insurance who test poz.

Offline Valmont

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Re: New recommendation to begin treatment immediately
« Reply #14 on: December 06, 2011, 01:28:26 AM »
No, it's illegal to sell HIV meds in Brazil, since the government provides them for free. No Atripla, though.

It is exactly the same in Ecuador...  Don´t thing it is so bad to forbidd to sell the meds if the State gives them to you for free, unfortunatelly, they are not last one on the market, but so lucky to have a great treatment almost for free.

(Change of language from spanish and complete the idea...)

« Last Edit: December 06, 2011, 02:11:56 AM by Valmont »
Apr 2011: Diagnotized
Jun 2011: CD4: 504  VL: 176.000
Dic 2011: CD4: 714  VL: 95.000
May 2012: CD4: 395 VL: 67.000
Jun 2012: CD4: 367
Agu 2012: Starting Emtricitabine 200 mg / Tenofovir 300 mg and Efavirenz 600 mg (2 pills) different brands or VIRADAY
Sep 2012: VL: 138
Dic 2012: CD4: 708 VL: <34  %CD4: 32%
Jan 2013: CD4: 707 VL: <20
May 2013: CD4: 945 VL: <34 %CD4: 33%
Agu 2013: CD4: 636 VL: <34 %CD4: 50% (is that possible?)

Offline mecch

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Re: New recommendation to begin treatment immediately
« Reply #15 on: December 06, 2011, 01:41:09 AM »
Very interesting...

Here I don´t have access to any treatment till my CD4 get under 500 in the best of the case.

Is there some place it is possible to access to treatment regardless to CD4 count????

In Switzerland there are treatment protocals. But its understood in Geneva doctors are generally "treat when diagnosed".  And anywhere, if you request to start, you can, no matter your numbers.
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline spacebarsux

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Re: New recommendation to begin treatment immediately
« Reply #16 on: December 06, 2011, 01:41:25 AM »
Its done from a public health standpoint.  If you reduce an entire communities viral load you will reduce the overall number of cases of HIV ie people dont spread HIV if they are undetectable.  The start study is looking at the health of the specific patient, two different issue.

I tend to agree with Sean Strub's views on this:

"5. ART for HIV-positive partners with ≥350 CD4 cells/μL in serodiscordant couples is recommended to reduce HIV transmission to uninfected partners. Strong recommendation, high quality evidence.

This explicitly prioritizes a public health objective over the health of the individual person with HIV.  It does not reference the very real possibility, if not likelihood, that treatment for some people >350 CD4 cells may harm them.  

It has not yet been demonstrated conclusively that, on average, those with >350 CD4 cells will receive a net benefit from anti-retroviral therapy.  The START trial or other research may demonstrate that is the case, but it might also prove that there is more net harm than benefit.  

Until we have that research, to recommend such treatment to patients under the guise of it being in their own personal best interest, or in the absence of a very clear informed consent procedure with appropriate recognition of the potential harm, is medical experimentation, at best.  Advising patients that such treatment can render them nearly non-infectious is appropriate, but they should also be advised of the potential risks to their own health.
"


Source: http://blogs.poz.com/sean/
Infected-  2005 or early 2006; Diagnosed- Jan 28th, 2011; Feb '11- CD4 754 @34%, VL- 39K; July '11- CD4 907@26%,  VL-81K; Feb '12- CD4 713 @31%, VL- 41K, Nov '12- CD4- 827@31%

Offline mecch

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Re: New recommendation to begin treatment immediately
« Reply #17 on: December 06, 2011, 01:48:18 AM »
Yada Yada yada!!!!  Drugs/treatment should be based on individual evaluations of risk and benefit.. etc..

I hope they did talk about short and long-term side effects for starting treatments and also for lack of adherence developing drug resistance issues..

Give me a break and yaa if you respond to this.. save the denialist crap for someone else!

Another CDC crap!!!!!


Since2005

Dearie we don't have to restrain ourselves: You had your head in the sand out of fear and I'd say you've made a lot of progress but you still got some sand in your eyes and ears.

It's not "yada yada".  Treatment at diagnosis is a huge commitment to patients and to public health. There are arguments for and against but its not some reckless project that you should be dismissing.
« Last Edit: December 06, 2011, 01:46:56 PM by mecch »
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline Tim Horn

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Re: New recommendation to begin treatment immediately
« Reply #18 on: December 06, 2011, 08:28:39 AM »
I wonder if the great city of NY will be supplying free meds to those without health insurance who test poz.

Those who don't have insurance and don't qualify for either Medicaid or Medicare can get meds through New York's (still relatively generous) ADAP program.

However...

For a lot of disenfranchised people living with HIV in New York, access to housing, case management, clinic transportation and nutritional programs is a must -- and there's no shortage of evidence that each of these are necessary when the goal is excellent ARV treatment adherence. The problem is, many people can only access these supportive programs upon qualifying for HIV/AIDS Services Administration benefits... which, at present, are only available to those with no more than 200 CD4s.

So, while the Department of Health and Mental Hygiene is now recommending treatment for all people living with HIV, regardless of CD4 cell counts, it's now up to Bloomberg and New York City Council to meet these recommendations with increased funding for supportive services. This will ultimately be a very tough fight, given that Guiliani and Bloomberg have repeatedly voiced desires to cut HASA funding, not increase it.

Tim

Offline madbrain

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Re: New recommendation to begin treatment immediately
« Reply #19 on: December 06, 2011, 11:44:22 AM »
Very interesting...

Here I don´t have access to any treatment till my CD4 get under 500 in the best of the case.

Is there some place it is possible to access to treatment regardless to CD4 count????

That choice was certainly offered to me at Kaiser in Northern California very early on after diagnosis. But the doctor recommended to wait based on my lab results. I listened.

Offline Inchlingblue

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Re: New recommendation to begin treatment immediately
« Reply #20 on: December 07, 2011, 07:51:10 PM »
Those who don't have insurance and don't qualify for either Medicaid or Medicare can get meds through New York's (still relatively generous) ADAP program.

 

I don't think it's that simple, Tim. ADAP in New York has income restrictions and assets restrictions. If I lost my job (hence, also lost my insurance) because I have over $25K in the bank (which I believe is the highest amount allowable in assets for ADAP in NY State) I would not qualify. I guess after COBRA were to run out, I could spend the money on meds and lab tests and doctor's visits until it got below $25K and then I could get ADAP. Woohoo.

Basically if I want to qualify for ADAP I can't ever aspire to having more than $25K in the bank.

God forbid we should have a nest egg/any retirement savings.
« Last Edit: December 07, 2011, 07:54:50 PM by Inchlingblue »

Offline denb45

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Re: New recommendation to begin treatment immediately
« Reply #21 on: December 07, 2011, 08:06:41 PM »


Basically if I want to qualify for ADAP I can't ever aspire to having more than $25K in the bank.

God forbid we should have a nest egg/any retirement savings.

Yes unfortunately this is the way it is in all States, do what I do and buy a fireproof safe, no one can really ding ya, for what they don't know you have, especially if they have no proof ........just sayin  ;)
"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Offline Miss Philicia

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Re: New recommendation to begin treatment immediately
« Reply #22 on: December 07, 2011, 08:23:23 PM »
I don't think it's that simple, Tim. ADAP in New York has income restrictions and assets restrictions. If I lost my job (hence, also lost my insurance) because I have over $25K in the bank (which I believe is the highest amount allowable in assets for ADAP in NY State) I would not qualify. I guess after COBRA were to run out, I could spend the money on meds and lab tests and doctor's visits until it got below $25K and then I could get ADAP. Woohoo.

Basically if I want to qualify for ADAP I can't ever aspire to having more than $25K in the bank.

God forbid we should have a nest egg/any retirement savings.

liquid assets, moneybags... figure out a way not to make it liquid. Put it in a retirement account or some such scheme (or better yet get a financial advisor).
"I’ve slept with enough men to know that I’m not gay"

Offline madbrain

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Re: New recommendation to begin treatment immediately
« Reply #23 on: December 07, 2011, 09:11:18 PM »
Yes unfortunately this is the way it is in all States, do what I do and buy a fireproof safe, no one can really ding ya, for what they don't know you have, especially if they have no proof ........just sayin  ;)

No, that is not true for all states. The maximum asset requirement does not exist for ADAP in California.

Offline denb45

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Re: New recommendation to begin treatment immediately
« Reply #24 on: December 07, 2011, 09:19:15 PM »
No, that is not true for all states. The maximum asset requirement does not exist for ADAP in California.


Your Probably right, I was on ADAP after my cobra run out w/ kaiser back in 97, and I'm not really sure what they do now, as I haven't lived in nor-cal for the last 9yrs. I do know that they have changed some things as far as FPL go's w/ Medi-cal, but I'm not sure what that even is now  ;)
"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Offline zorro62

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Re: New recommendation to begin treatment immediately
« Reply #25 on: December 08, 2011, 12:28:13 AM »
So what about the other surveys I saw recently and that were discussed on this forum that compared
1) the life expectancy of people who started meds with cd4 account above 500
2) the life expectancy of people who started meds with cd4 count b/w 350 and 500

and found no difference...In essence saying there was no value to starting meds when cd4 was greater than 500?
Are the New York Doctors ignoring these studies?

Here is the link to the study:
http://www.aidsbeacon.com/news/2011/09/26/starting-antiretroviral-therapy-early-does-not-reduce-the-risk-of-aids-or-death/


@madbrain. Is there a single repository of info that explains the rules each state has for allowing someone to qualify for ADAP. Could you, for example, own your own house but show little savings and still qualify?
In Texas here.
« Last Edit: December 08, 2011, 12:51:54 AM by zorro62 »
Jan09 - tested neg
Apr 2nd 09 - tested poz
Apr 09: CD4:1178  %45   vl=350
Jul 09:  CD4:1380  %42   vl=2,900
Aug 09: CD4:987  %43  vl=2,350
Nov 09: CD4:1440 %48  vl=650
Mar 10: CD4:1030 %43  vl=880
Jun 10: CD4:565 %42 vl=3300
Sep 10: CD4:1030 %49 vl=8k
Dec 10: CD4:1059 %44 vl=38k
Mar 11: CD4:1130 %53 vl=17k
Apr 11: Started on GSK blind HIV Therapeutic Vaccine Trial
Jul 11: CD4: 908 %44 vl=29k
Oct 11: CD4: 787  %44 vl=13k
Dec 11: CD4: 1013 %41 vl=14k
Mar 12: CD4: 1003 %44 vl=17k
Jun 12: CD4: 897 %43 vl=7k
Nov 12: CD4: 800 %38 vl=12k

Offline madbrain

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Re: New recommendation to begin treatment immediately
« Reply #26 on: December 08, 2011, 02:02:35 AM »
zorro62,

@madbrain. Is there a single repository of info that explains the rules each state has for allowing someone to qualify for ADAP. Could you, for example, own your own house but show little savings and still qualify?
In Texas here.

I am not aware of a nationwide resource. I think you have to look at your state's web site, since the plans vary by state.
I believe this is the one to look at for Texas :
http://www.dshs.state.tx.us/hivstd/meds/default.shtm

Offline Since2005

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Re: New recommendation to begin treatment immediately
« Reply #27 on: December 08, 2011, 11:50:28 PM »
There isn't any room for discussion for early treatment who would be suggested to start meds for someone like Madbrain's stat (member before me in this thread) in 2006. Someone like him in 2006 was over 650+ CD4 count and other stat being high and be recommended to start meds is yadda yadda and yes another CDC crap!

Offline madbrain

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Re: New recommendation to begin treatment immediately
« Reply #28 on: December 09, 2011, 04:23:22 AM »
Since2005,

There isn't any room for discussion for early treatment who would be suggested to start meds for someone like Madbrain's stat (member before me in this thread) in 2006. Someone like him in 2006 was over 650+ CD4 count and other stat being high and be recommended to start meds is yadda yadda and yes another CDC crap!

I have no idea what you mean by "yadda yadda". But for the record, the reason I started meds was not due to my stats, which were excellent. I was even in controller studies. However, I had terrible fatigue. Going on the drugs definitely helped with that. I waited 3 years before making that decision, and I am sorry I did.

Offline bocker3

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Re: New recommendation to begin treatment immediately
« Reply #29 on: December 09, 2011, 07:39:33 AM »
There isn't any room for discussion for early treatment who would be suggested to start meds for someone like Madbrain's stat (member before me in this thread) in 2006. Someone like him in 2006 was over 650+ CD4 count and other stat being high and be recommended to start meds is yadda yadda and yes another CDC crap!

What the hell is wrong with you?  It's one thing to disagree with a recommendation, but it's something else entirely when you start trying to use someone else's history to disparage a recommendation.  What you believe and what Madbrain did have nothing at all to do with each other.

We get it -- you don't like the recommendations, you don't want ANYONE to debate it with you, so if that is really what you want, you've stated your thoughts - now shut the hell up about it.  Or..... retract your comment about not wanting to discuss it, seeing as you can't seem to stop -- you can't have a one sided debate.

Mike

edited to add:
of course, I could give a rat's ass about what you think around recommendations of doctors and scientists.  You are entitled to your opinioin, though.
« Last Edit: December 09, 2011, 07:41:55 AM by bocker3 »
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Offline Since2005

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Re: New recommendation to begin treatment immediately
« Reply #30 on: December 09, 2011, 08:26:16 AM »
What the hell is wrong with you?  It's one thing to disagree with a recommendation, but it's something else entirely when you start trying to use someone else's history to disparage a recommendation.  What you believe and what Madbrain did have nothing at all to do with each other.

We get it -- you don't like the recommendations, you don't want ANYONE to debate it with you, so if that is really what you want, you've stated your thoughts - now shut the hell up about it.  Or..... retract your comment about not wanting to discuss it, seeing as you can't seem to stop -- you can't have a one sided debate.

Mike

edited to add:
of course, I could give a rat's ass about what you think around recommendations of doctors and scientists.  You are entitled to your opinioin, though.

I will just gently respond to this-

I was replying to Meech. Madbrain's was (whose CD4 was 650+ at the of diagonsis , I could have used mine but I just didnt know my number then ;)). He was fine for number of years without meds and so am I. He and I are living reasons why this recommendation is bull crap! What a waste of resources !

You are damn right l am entitled to my opinion. I already have stated the reasons.

Since2005
(Who once was advised by a wise man in this forums not to respond in kind!)

Offline mecch

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Re: New recommendation to begin treatment immediately
« Reply #31 on: December 09, 2011, 09:52:49 AM »
I was replying to Meech. Madbrain's was (whose CD4 was 650+ at the of diagonsis , I could have used mine but I just didnt know my number then ;)). He was fine for number of years without meds and so am I. He and I are living reasons why this recommendation is bull crap! What a waste of resources !

Since2005 - Madbrain was NOT fine, he had no energy.  If you are fine, that's cool. There are plenty of people who do well for years with HIV and no treatment.  Noboday is saying those people don't exist.  Look at Ann for example.

A group of doctors or a city or state or a country's health authorities recommending HAART at diagnosis regardless of numbers or years - just means they decided there may be advantages personally or to public health.

Its not "bull crap".  Its a sea change in medical community opinion AND in public health policy.  It's not saying you or anyone else can't go on monitoring and waiting for the moment that is right for you.  Its saying that the science says its OK to treat at diagnosis, and that the government and insurance needs to find the funds to make this happen.  

Why do you consider this bull crap???
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Offline leatherman

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Re: New recommendation to begin treatment immediately
« Reply #32 on: December 09, 2011, 10:02:39 AM »
@zorro62
I am not aware of a nationwide resource. I think you have to look at your state's web site, since the plans vary by state.
I don't think there's a national resource laying out all the issues as they change yearly based on state budgeting and state requirments. Looking at the NASTAD report (http://www.nastad.org/) is a partial list of some cost containment measures and Kaiser (http://statehealthfacts.org/comparetable.jsp?ind=551&cat=11) lists some of the formulary differences. but the only way to truly know is to look at each state's information on their health department's website.

anyone on ADAP thinking of moving should always check out this information while in the planning stages of their move. ;)

God forbid we should have a nest egg/any retirement savings.
anyone already receiving assistance can tell you that getting state/federal assistance for health issues often requirements people to have very limited or zero personal resources. :(
leatherman (aka mIkIE)


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Oh my friends, my friends forgive me
That I live and you are gone.
There's a grief that can't be spoken.
There's a pain goes on and on.
Empty chairs at empty tables
Where my friends will meet no more.

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Offline newt

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Re: New recommendation to begin treatment immediately
« Reply #33 on: December 09, 2011, 02:40:26 PM »
This whole idea only works if you have the financing in place for everyone, address basic needs/addiction issues that compromise adherence and the end users buy the arguments on benefit of immediate treatment. Plus a huge proportion of transmissions in eg the UK, British Columbia come from people who don't know they are HIV-positive and I guess it ain't different in NY, so you also need a decent testing strategy if you are after a public health effect (including reducing expensive emergency hospital admissions for very ill, undiagnosed people with AIDS). Otherwise you might as well piss off the Brooklyn Bridge on a windy day.

Personally, if diagnosed now, knowing what I know now, I would go on treatment straight away. But when I was diagnosed I knew jack shit and wanted to defer meds for as long as possible.

- matt
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Offline bocker3

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Re: New recommendation to begin treatment immediately
« Reply #34 on: December 09, 2011, 04:47:15 PM »
I will just gently respond to this-

I was replying to Meech. Madbrain's was (whose CD4 was 650+ at the of diagonsis , I could have used mine but I just didnt know my number then ;)). He was fine for number of years without meds and so am I. He and I are living reasons why this recommendation is bull crap! What a waste of resources !

You are damn right l am entitled to my opinion. I already have stated the reasons.

Since2005
(Who once was advised by a wise man in this forums not to respond in kind!)


So, are you unable to read??  Madbrain clearly stated that he was not fine, he started meds for a reason, so he is NOT an living reason why this recommendation is "bull crap".  It is perfectly fine to have an opinion -- however it is not fine to twist the words or situations of others to try and make them fit your view - that is what one would call BULL CRAP.

If I were you (and thank god I am not....) I would look at just why this recommendation has hit such a nerve in you.  A recommendation is nothing more than just that -- it's not a mandate, it is not a promise, it is simply a recommendation.  Hell, if you asked the folks who issued it, they'd probably agree that there are a host of reasons why any particular individual might not be best served to follow it.

Mike
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Offline Since2005

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Re: New recommendation to begin treatment immediately
« Reply #35 on: December 10, 2011, 12:59:32 AM »
@Madbrain, I am sorry that I skipped your reply before I replied mine. I am totally with u. As I understand u had good stats , u waited few years and with your doc recommendation u started meds and u are fine. As I have indicated treatment should be based on individual risks and evaluations. If u have to be on it , then u have to be on it. I,myself, getting there. I don't feel the way u do. I am skeptical about side effects. No, I am not talking about known short-term side effects. I am talking about long-term side effects that no one is aware of, even the doctors. For Atripla, they mentioned on their website as they are aware of only 3 years long term side effects. I'm very fond of Sean's attitudes towards this ( my first reply to this thread). HIV meds are so new and unknown and even docs and researchers do not know what effects these meds going  to have on us in the long run. If I could avoid taking the meds, why wouldn't I?

@Meech - Newt made a very good point about the resources. Now what's gonna happen is people are gonna be taking meds who could have waited, making others who really needs it, wait on list. My main concern is not that. Let's say City has enough resources to put people in meds , but what they neglect to tell people is about not known side effects which is years to come. We know lots of those now but there is a ocean knowledge we still don't know about which may show up 5/10/15 years later.
 
If u talk about public health, do u know how many people in NYC don't know/ don't want to test for HIV. People who know their status, are not the main problem. They actually are more educated and more protective of others.

Please read my first reply including Sean's comments, then 'hopefully' u will get to understand. CDC is not looking out for Poz people or any other certain individuals, as they never have ( website is the living proof). I am afraid this decision is made to look out for mass, possibly lobbyed by certain interest groups, not based on individual needs. Any treatment recommendations should be based on individual evaluations, if it is suggested otherwise, is a big bull crap to me.

Since2005

Edited to correct spelling etc.
« Last Edit: December 10, 2011, 07:58:55 AM by Since2005 »

Offline spacebarsux

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Re: New recommendation to begin treatment immediately
« Reply #36 on: December 10, 2011, 02:04:36 AM »

Personally, if diagnosed now, knowing what I know now, I would go on treatment straight away. But when I was diagnosed I knew jack shit and wanted to defer meds for as long as possible.

- matt


Hi Matt,

I greatly respect your knowledge on HIV disease and treatment. Can I request you to briefly explain why you would go on treatment straight away?

Do you think it unnecessary to wait for conclusive proof from the START clinical results confirming if there is a net-benefit in commencing therapy ASAP ?

If the benefit of early treatment outweighs the negatives so significantly, why is it that the WHO guidelines, the European Guidelines, the guidelines in all Asian countries tell us to wait until CD4 drops to 350 ? Are there some financial considerations in delaying treatment ? Or is it that policy makers are being overly cautious ?

PS:- I don't mean to be tedious. I am genuinely interested in hearing your thoughts.

Many thanks. :)
« Last Edit: December 10, 2011, 02:07:54 AM by spacebarsux »
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Offline bocker3

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Re: New recommendation to begin treatment immediately
« Reply #37 on: December 10, 2011, 09:11:15 AM »
I am talking about long-term side effects that no one is aware of, even the doctors. For Atripla, they mentioned on their website as they are aware of only 3 years long term side effects.

This seems just plain wrong or, more likely, very out of date.  Many people have been on the components of Atripla for far more than 3 years.  I've been taking Atripla or its precursors for 6 years now and I know others who have been on them much longer than I.  Perhaps you'll see more on the individual drug pages.


Any treatment recommendations should be based on individual evaluations, if it is suggested otherwise, is a big bull crap to me.
That is true for an individual's recommendations from his/her doctor.  When a public health entity makes recommendations it is for populations, as they don't have the ability to examine everyone.  As I pointed out earlier, and you ignored -- a recommendation is JUST THAT -- it isn't a mandate, it isn't even meant to imply that everyone, without exception, should follow it.

Being skeptical is healthy, being so paranoid about your own situation that you can't accept that something different than your thoughts could be good for many is not so healthy.

Mike
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Offline buginme2

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Re: New recommendation to begin treatment immediately
« Reply #38 on: December 10, 2011, 09:28:10 AM »
There was recently a study published (out of Denmark I think) that said that long term use of antiretrovirals does not reduce life expectancy or increase the risk of non aids deaths cause by cardivascular disease, liver disease, or kidney disease.  

However, untreated HIV surely does.

PS Sean Strub is not some HIV messiah know all.   I'd prefer to get my medication advice from the medical community.  Study after study shows the benefit of HAART not to mention the one that shows those who are on medication and undetectable are 96% less likely to transmit.  From a public health perspective thats huge.  

If you want to argue facts go ahead, but don't call the recommendations crap or a consperacy.  It just shows your ignorance.
« Last Edit: December 10, 2011, 10:02:44 AM by buginme2 »
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Offline Inchlingblue

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Re: New recommendation to begin treatment immediately
« Reply #39 on: December 10, 2011, 11:19:23 AM »
This whole idea only works if you have the financing in place for everyone, address basic needs/addiction issues that compromise adherence and the end users buy the arguments on benefit of immediate treatment. Plus a huge proportion of transmissions in eg the UK, British Columbia come from people who don't know they are HIV-positive and I guess it ain't different in NY, so you also need a decent testing strategy if you are after a public health effect (including reducing expensive emergency hospital admissions for very ill, undiagnosed people with AIDS). Otherwise you might as well piss off the Brooklyn Bridge on a windy day.

Personally, if diagnosed now, knowing what I know now, I would go on treatment straight away. But when I was diagnosed I knew jack shit and wanted to defer meds for as long as possible.

- matt


Wise words. Especially the part about having the financing in place for everyone, which is why I brought it up, above, whether NYC is prepared to supply meds to anyone and everyone who needs it, without the person having to jump through hoops and hide assets, etc.

Even those who do qualify for ADAP have to be re-applying (I think yearly) and filling out forms and proving they qualify, yada yada yada.

It should not be that hard but it is what it is, alas.
« Last Edit: December 10, 2011, 11:23:19 AM by Inchlingblue »

Offline bocker3

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Re: New recommendation to begin treatment immediately
« Reply #40 on: December 10, 2011, 05:02:30 PM »
Having a recommendation should not require funding or, conversly, having inadequate funding should not stop making recommendations.  There are plenty of "recommendations" out there for public health that aren't funded.  For instance, it is recommended that we all eat 5 servings of fruits and vegetables every day, but no one is providing the produce.  I simply don't get arguments like, don't recommend treatment if you won't pay for it. 

The fact that health care is not available to all in this country is a big problem and I wish it weren't so, however I wouldn't say that we should hold back on making recommendations because of it.

Mike
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Offline Basquo

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Re: New recommendation to begin treatment immediately
« Reply #41 on: December 10, 2011, 05:20:11 PM »
Suppose this was the norm...they would still want to draw two sets of labs to get a baseline, right? Unless a patient was critically ill? How do they define "right away"? How would they determine if a person was a long-term non-progressor, or would that be of any concern? Seems like it would be a waste of money if the person didn't need the drugs, but apparently they don't want them to go ten years to see if they are still holding steady. I've yet to be convinced that the benefits outweigh the risks when you don't need the drugs.

However, and this is directed at Since2005, for the majority of HIV-positive persons, the benefits of HAART outweigh the risks. You've typed about side effects that doctors don't even know about; well, how is it that YOU know about them? What are they? Why do you say this is CDC crap when they aren't mentioned except as a resource for more general information on HIV/AIDS, at the end? And finally, do you or do you not agree that a risk of side effects is preferable to DEATH? Because for the majority of HIV-positive persons, no treatment = guaranteed death from the disease.

I've read the article but I can't find anything directly from the NY Health Dept. I wonder if CBS left anything out.

Offline Inchlingblue

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Re: New recommendation to begin treatment immediately
« Reply #42 on: December 10, 2011, 06:13:10 PM »
Having a recommendation should not require funding or, conversly, having inadequate funding should not stop making recommendations.  There are plenty of "recommendations" out there for public health that aren't funded.  For instance, it is recommended that we all eat 5 servings of fruits and vegetables every day, but no one is providing the produce.  I simply don't get arguments like, don't recommend treatment if you won't pay for it. 

The fact that health care is not available to all in this country is a big problem and I wish it weren't so, however I wouldn't say that we should hold back on making recommendations because of it.

Mike

I don't buy that. Not with HIV/AIDS. The whole point of test and treat is to "end" AIDS. That's a tall order and yet reachable if everyone who is poz were on meds. 

Offline bocker3

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Re: New recommendation to begin treatment immediately
« Reply #43 on: December 10, 2011, 08:22:56 PM »
I don't buy that. Not with HIV/AIDS. The whole point of test and treat is to "end" AIDS. That's a tall order and yet reachable if everyone who is poz were on meds. 

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
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Offline Since2005

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Re: New recommendation to begin treatment immediately
« Reply #44 on: December 11, 2011, 03:23:42 AM »
Suppose this was the norm...they would still want to draw two sets of labs to get a baseline, right? Unless a patient was critically ill? How do they define "right away"? How would they determine if a person was a long-term non-progressor, or would that be of any concern? Seems like it would be a waste of money if the person didn't need the drugs, but apparently they don't want them to go ten years to see if they are still holding steady. I've yet to be convinced that the benefits outweigh the risks when you don't need the drugs.

However, and this is directed at Since2005, for the majority of HIV-positive persons, the benefits of HAART outweigh the risks. You've typed about side effects that doctors don't even know about; well, how is it that YOU know about them? What are they? Why do you say this is CDC crap when they aren't mentioned except as a resource for more general information on HIV/AIDS, at the end? And finally, do you or do you not agree that a risk of side effects is preferable to DEATH? Because for the majority of HIV-positive persons, no treatment = guaranteed death from the disease.

I've read the article but I can't find anything directly from the NY Health Dept. I wonder if CBS left anything out.

Agreed 100% on the first para.
For second para, can u give one single reason why did u direct that at me? I did not give any indications of anything that u said.
Hint. Please read my answer @ Madbrain and other replies. If u still don't get your answers let me know.
Another hint - We are NOT talking about no treatment options unless u got confused with Bugin's answer.
Double hint - we are talking about unknown long term side effects of meds, Pharma put as a warning to be truthful.
Last but not the least - did u read the whole thread? Then u would know I am considering treatment options for myself in the near future to outweigh the risks and save my life because by then I will be making an educated decision. I would need the meds by then. Just so that we are clear, we are talking about a recommendation  (pretty crappy one) where they recommend for people to go on meds even when they don't need it.
BTW, u do know CDC is more than a HIV and AIDS information resource center, right?

I think you are a good man Basquo but look what u made me do- repeat myself. But, you did make a very good point - This recommendation encourages waste of resources!

@ Bugin - Please don't twist words and confuse people.  It shows ignorance when one is pretty darn sure about side effects that meds offer in exchange of saving lives and act pretty ignorant about it! Studies after studies shows people suffer from heart attacks, liver disease, kidney problems,etc. for using meds along with some unknown side effects in the long run!  Some of us don't have any choice (as I said I may be one of them soon) but the ones can they shouldn't be encouraged unnecessarily (Unnecessarily is the key word).

Since ( Who has learned to differ between noise and discussion and always up for discussion not for the noise)

Edited to add : I hate to think that the policymakers and doctors think us poz people fucking everything that we can and the only way they could stop us is make the virus UD?? Really???
« Last Edit: December 11, 2011, 10:42:14 AM by Since2005 »

Offline buginme2

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Re: New recommendation to begin treatment immediately
« Reply #45 on: December 11, 2011, 10:37:13 AM »
Exactly what words am I twisting?  I stated there was a recen study that said there was not a risk of non AIDS related deaths due to long term antiviral use.  

Here is a link to that story:

http://www.thebody.com/content/65100/study-finds-that-long-term-use-of-hiv-drugs-doesnt.html

Oh, and I said - just because Sean Strub says something doesnt mean its true.  Hes a blogger, not a scientist.  He has a right to his opinion but do your own research and make your own decisions, and that I would rather get my advice from doctors than some blogger (ya I can see how thats twisted). 

« Last Edit: December 11, 2011, 10:39:21 AM by buginme2 »
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Offline denb45

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Re: New recommendation to begin treatment immediately
« Reply #46 on: December 11, 2011, 11:05:26 AM »
What's the matter with all you dam queers? I've been on HIV/MEDS for the last 22 yrs. I took them cause back then that was all they had, and I'm still on them, take the dam MEDS, and feel better ,ok, I'm out ::)
"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Offline Basquo

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Re: New recommendation to begin treatment immediately
« Reply #47 on: December 11, 2011, 11:10:36 AM »
Agreed 100% on the first para.
For second para, can u give one single reason why did u direct that at me? I did not give any indications of anything that u said.
Hint. Please read my answer @ Madbrain and other replies. If u still don't get your answers let me know.
Another hint - We are NOT talking about no treatment options unless u got confused with Bugin's answer.
Double hint - we are talking about unknown long term side effects of meds, Pharma put as a warning to be truthful.
Last but not the least - did u read the whole thread? Then u would know I am considering treatment options for myself in the near future to outweigh the risks and save my life because by then I will be making an educated decision. I would need the meds by then. Just so that we are clear, we are talking about a recommendation  (pretty crappy one) where they recommend for people to go on meds even when they don't need it.
BTW, u do know CDC is more than a HIV and AIDS information resource center, right?

I think you are a good man Basquo but look what u made me do- repeat myself. But, you did make a very good point - This recommendation encourages waste of resources!

@ Bugin - Please don't twist words and confuse people.  It shows ignorance when one is pretty darn sure about side effects that meds offer in exchange of saving lives and act pretty ignorant about it! Studies after studies shows people suffer from heart attacks, liver disease, kidney problems,etc. for using meds along with some unknown side effects in the long run!  Some of us don't have any choice (as I said I may be one of them soon) but the ones can they shouldn't be encouraged unnecessarily (Unnecessarily is the key word).

Since ( Who has learned to differ between noise and discussion and always up for discussion not for the noise)

Edited to add : I hate to think that the policymakers and doctors think us poz people fucking everything that we can and the only way they could stop us is make the virus UD?? Really???

You said "CDC crap" and "long-term side effects that no one is aware of, even the doctors" and when I read that it overshadowed everything else you said previously, and yes, I did read the entire thread. You also said something to the effect that the CDC is not on the side of poz people and while that may be construed by examining their policies and procedures and actions, they do have thebody.com which is directed at poz people and they're not telling people about side effects that they can't name and haven't manifested and have no proof of. When these phantom side effects do show up in a few decades please feel free to tell me "I told you so" but until then you need to be taken down a notch. Your words have the potential to scare people into not taking the medication that they need and that is deadly.

Offline buginme2

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Re: New recommendation to begin treatment immediately
« Reply #48 on: December 11, 2011, 11:59:34 AM »

Edited to add : I hate to think that the policymakers and doctors think us poz people fucking everything that we can and the only way they could stop us is make the virus UD?? Really???

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


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Offline leatherman

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  • Google and HIV meds are Your Friends
Re: New recommendation to begin treatment immediately
« Reply #49 on: December 11, 2011, 01:25:10 PM »
Just so that we are clear, we are talking about a recommendation  (pretty crappy one) where they recommend for people to go on meds even when they don't need it.
one thing to consider is the phrase you used "even when they don't need it". Eventually everyone with HIV will need HAART. Every day even LTNPs edge ever more closer to the point of needing HAART. HIV, unchecked/untreated always "wins" in the end. So all this is just quibbling about the best starting point of meds, not the idea of starting meds when they aren't needed.

It shows ignorance when one is pretty darn sure about side effects that meds offer in exchange of saving lives and act pretty ignorant about it! Studies after studies shows people suffer from heart attacks, liver disease, kidney problems,etc. for using meds along with some unknown side effects in the long run!
the studies do NOT show that everyone, much less the majority of patients, end up with these side effects. Check out those studies - really consider the numbers/percentages of who experiences what side effects. Although cases of heart attack, liver disease, etc are elevated in those with HIV and/or on HAART (the jury is often still out on whether these problems are from the disease or the meds), these issues do NOT strike everyone by any stretch of the imagination. While 22% having liver disease is an issue of concern, it's a non-issue for 3/4ths of the people on those drugs.

And to be honest, although those issues are worth considering, consider the alternative. I would much rather die from a heart attack at 72 than from AIDS at 32. I was in a hospital quite possibly dying from AIDS/PCP when I was 32. Because of 19 yrs of HAART, from which I currently have no liver, heart, kidney etc related issues, I'm coming on 50 in the first part of the new year. If I were to die at 55 from a HAART-related side effects, the extra 20+ years would have been worth the trouble of HAART rather than having been dead back at 32.

Some of us don't have any choice (as I said I may be one of them soon) but the ones can they shouldn't be encouraged unnecessarily (Unnecessarily is the key word).
no HIV+ person has a choice. (well they do, but I don't encourage suicide ;) ) In the end we will all have to be on HAART or risk dying from AIDS. About 1/3 of us had no choice from the very beginning as we were diagnosed with AIDS when we found out we were positive. We've never seen the meds in a bad light (no matter the side effects) because the meds represent the only life-saving, life-enhancing option. I've also known plenty of people in that other 2/3rds that didn't believe meds were bad either, so they started meds early enough to never experience any of the horror of having AIDS, so starting early is definitely not that bad of a thing.
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Oh my friends, my friends forgive me
That I live and you are gone.
There's a grief that can't be spoken.
There's a pain goes on and on.
Empty chairs at empty tables
Where my friends will meet no more.

"Empty Chairs at Empty Tables" from Les Miserables

 


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