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Author Topic: ADAP crisis receives NY Times front page attention  (Read 42183 times)

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Offline Miss Philicia

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ADAP crisis receives NY Times front page attention
« on: June 30, 2010, 01:06:01 pm »
Here's just a small excerpt, click the link below for the full article.  At the time that I'm making this thread the article appears as the top news story on their web site.  I'd assume it's then also front page in the print copy for today or tomorrow.

NY Times link

Quote
The weak economy is ravaging the government program that provides life-sustaining antiretroviral drugs to people with H.I.V. or AIDS who cannot afford them. Nearly 1,800 have been relegated to rapidly expanding waiting lists that less than three years ago had dwindled to zero.

As with other safety-net programs, ballooning demand caused by persistent unemployment and loss of health insurance is being met with reductions in government resources. Without reliable access to the medications, which cost individuals in the AIDS Drug Assistance Program an average of $12,000 a year, people with H.I.V. are more likely to develop full-blown AIDS, transmit the virus and require expensive hospitalizations.

Eleven states have closed enrollment in the federal program, most recently Florida, which has the nation’s third-largest population of people with H.I.V. Three other states have narrowed eligibility, and two of them — Arkansas and Utah — have dropped scores of people from the program.

Last week, because of swelling numbers here in South Florida, the nationwide waiting list surged past record levels set in 2004, to 1,781 people, according to the National Alliance of State and Territorial AIDS Directors. The growth is expected to continue when Georgia starts deferring enrollment in its drug assistance program on July 1, and Illinois may soon follow.

Louisiana capped enrollment on June 1 but decided against keeping a waiting list. “It implies you’re actually waiting on something,” said DeAnn Gruber, the interim director of the state’s H.I.V./AIDS program. “We don’t want to give anyone false hope.”

Ten states’ programs have stopped covering drugs that do not directly combat H.I.V. or opportunistic infections. Unless money is found by Aug. 1, Florida plans to pare 53 of 101 medications from its formulary, including those for conditions that are often related to H.I.V., like diabetes, high blood pressure and anxiety.

In many states, there is a sense of reverting to the 1980s and early 1990s, before the development of protease inhibitors reversed the inexorable rise in AIDS deaths.

...
Quote
Drug assistance has grown since 1996 to become the largest component of the federal Ryan White program, which provides grants to states and localities. The drug program’s budget from all sources is now $1.6 billion, with Washington contributing about 55 percent, states offering 14 percent and drug company rebates accounting for 31 percent, according to the state AIDS directors.

A confluence of factors has caused the strain. Enrollment has spiked during the recession, up 12 percent from June 2008 to June 2009, to about 169,000 people. The trend has likely accelerated since then. In Florida, monthly enrollments grew by a third between May 2009 and May 2010.

A renewed emphasis on testing also is driving up caseloads, and federal treatment guidelines now recommend an earlier start to drug therapy. Because the drugs are so effective, people often stay on the rolls for extended periods.

Meanwhile, federal financial support has stayed essentially flat, up barely 2 percent this year, while appropriations from state budgets fell 34 percent, according to the state AIDS directors. The drug companies increased their contribution by half, to nearly $500 million, but it is still not enough.
« Last Edit: June 30, 2010, 01:12:29 pm by Miss Philicia »
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Offline leatherman

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Re: ADAP crisis receives NY Times front page attention
« Reply #1 on: June 30, 2010, 02:47:27 pm »
From just June 11, 2010, 409  more people have been added to the ADAP waiting lists in just two weeks time
(numbers in () indicate change from June 11 to June 25)

June 25, 2010 ADAP Watch pdf
Florida: 361 (+248)
Hawaii: 9 (+2)
Idaho:  26 (+1)
Iowa: 97 (-6)
Kentucky: 189 (-12)
Louisiana: 59 (+59)**
Montana: 21 (+3)
North Carolina:  769 (+59)
South Carolina: 175 (+30)
South Dakota: 22 (+1)
Utah: 112 (+8)
Wyoming: 0 (-20)*

*Wyoming has reduced their list to zero waiting clients since the first part of the month.
**Although the article Miss P references (and thanks for that link Philly! :-*) states that there is no list for Louisiana, that was an old announcement from the June 11th report. Since then, Louisiana has started a list with 59 people.

Thankfully, as I have posted previously and this article also mentions, several pharma companies are offering rebates to help with this problem. However, that still has not stopped the crisis. I urge everyone in the affected states to please contact your local State Representatives since this is mainly an issue of state budgeting.

Unfortunately, in my own state of SC, after several rallies, email and phone campaigns, even attendance at a Senate hearing for the state budget, dollars going to ADAP and HIV prevention have been cut from this state's budget. While the House and Senate finally reconciled and passed a budget including those programs, last week the Governor vetoed those items and the House upheld his veto.
leatherman (aka Michael)

We were standing all alone
You were leaning in to speak to me
Acting like a mover shaker
Dancing to Madonna then you kissed me
And I think about it all the time
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Offline Inchlingblue

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Re: ADAP crisis receives NY Times front page attention
« Reply #2 on: June 30, 2010, 03:15:19 pm »
Without reliable access to the medications, which cost individuals in the AIDS Drug Assistance Program an average of $12,000 a year, people with H.I.V. are more likely to develop full-blown AIDS, transmit the virus and require expensive hospitalizations.

I'm glad they included this since, when looking at this crisis from a purely economic perspective, it's penny wise and pound foolish and will cost State and Federal governments much more money in the long run if these people are left to get sicker and end up in emergency rooms. (I'm not even mentioning the human rights issue since that's lost on so many of these fiscally conservative folks).

I'm not sure if those that decide these things (legislators I suppose) are aware of the medical facts behind HIV progression. They might think it's OK not have meds for a while if they don't understand how resistance works and how damaging drug holidays can be.

I wonder why the Times article said the cost is $12K a year, it's more like double that for the HIV meds alone, not to mention any other meds ADAP offers.

If I lost my insurance I would not qualify for ADAP even if there were no waiting lists, welcome to America.

This whole ADAP crisis is why I'm all for Test and Treat to be officially adopted if it means that anyone and everyone with HIV can have access to HIV meds without having to jump through hoops to get them.

One more thing, this whole "National HIV Testing Day" is a crock of shit if many (or most) of those who do test positive won't have access to treatment and medications.
« Last Edit: June 30, 2010, 03:22:37 pm by Inchlingblue »

Offline max123

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Re: ADAP crisis receives NY Times front page attention
« Reply #3 on: June 30, 2010, 07:26:50 pm »
just outrageous
1/86 - 6/08 (annually): neg elisa
7/09: pos elisa/pos wb
8/09: cd4 560, cd4% 35, vl 13,050
12/09: cd4 568, cd4% 33, vl 2,690
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Offline Hellraiser

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Re: ADAP crisis receives NY Times front page attention
« Reply #4 on: June 30, 2010, 07:32:32 pm »
just outrageous

It's good that there is attention being paid to this outside of the hiv+ circles though.  Front page of the NYT is pretty good, just need everyone to dial into this.

Offline max123

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Re: ADAP crisis receives NY Times front page attention
« Reply #5 on: June 30, 2010, 07:52:28 pm »
It's good that there is attention being paid to this outside of the hiv+ circles though.  Front page of the NYT is pretty good, just need everyone to dial into this.

absolutely agreed, trey. the us government always seems to find funding for everything else we do: foreign aid, unnecessary warfare, etc...our government & the general public needs to wake up and look at this for what it really is
1/86 - 6/08 (annually): neg elisa
7/09: pos elisa/pos wb
8/09: cd4 560, cd4% 35, vl 13,050
12/09: cd4 568, cd4% 33, vl 2,690
4/10: cd4 557, cd4% 29.3, vl 6,440
7/10: cd4 562, cd4% 29.6, vl 3,780

Offline Joe K

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Re: ADAP crisis receives NY Times front page attention
« Reply #6 on: June 30, 2010, 08:42:39 pm »
absolutely agreed, trey. the us government always seems to find funding for everything else we do: foreign aid, unnecessary warfare, etc...our government & the general public needs to wake up and look at this for what it really is

Sorry, but the people who need to wake up are in the HIV community, because if we don't do this, who do you think will? It's 25 years into this and we still can't find a couple billion a year to fund HIV services. If you plan to wait around and expect someone else to do all the lifting, then don't complain when the money runs out. This battle has played out for almost three decades and it's time for 21st century advocates, to step forward, harness technology and get the message out.

Long ago, die-ins were staged, legislators bullied, persuaded, begged, whatever was necessary to get the funding we need. Folks, wake up and understand that the majority of Americans do not care if you live or die, especially if it means, a pet project of theirs goes without funding. Sad that life saving medications have to compete with inanimate or wasteful spending, but that's how the game is played and somebody better start playing, for our side, before we no longer have even a seat at the table.

Offline Jeffreyj

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Re: ADAP crisis receives NY Times front page attention
« Reply #7 on: June 30, 2010, 09:03:41 pm »
I am having MAJOR flash backs to the 1980's.

This is a disgrace. it is becoming, i'm affraid, our National nightmare.

Killfoile, Yes we need to do something. But exactly what? This is beyond fustrating.

Damn i'm so angry right now  >:(
Positive since 1985

Offline Joe K

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Re: ADAP crisis receives NY Times front page attention
« Reply #8 on: June 30, 2010, 09:44:52 pm »
If you want to help, start locally. Contact your representatives and state officials who deal with Ryan White and ADAP funding. Get involved with HIV planning councils or your local ASO. Write emails to officials and include copies of articles like these and then send the same thing to everyone who knows you are poz. Change comes one person at a time and with the Internet you can reach many, with very little effort. When I volunteered I had mail lists of representatives, at various government levels, that I could send mass emails to, very quickly and regularly.

Make your friends and family aware of what is happening and enlist their help. If you have to, do the work for them and send a package that they can just forward with their name. As I said, the technology is here and there is no reason that some group, could not coordinate a world event, say on World AIDS day, to bring attention to the reality of HIV and the necessity of continued funding. You have to look past your anger and learn how to play the game, by their rules. It doesn't mean you must compromise yourself, however, pick your battles wisely and realize that doing something, anything, is better than just getting angry.

Fortunately, this is not the 1980s, because we had no meds, not so today, but what use are they, if people cannot afford them? America has the money and Congress has the power to make all of this go away. Realize that HIV services are competing for federal dollars and that the only ones who can tell our story, is us and the sooner the better. Given the current waiting lists, I expect deaths from these lists, before the year is out.

Absolutely disgraceful for a country that spends almost ONE TRILLION DOLLARS per year, on defense spending.
« Last Edit: June 30, 2010, 09:47:35 pm by killfoile »

Offline leatherman

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Re: ADAP crisis receives NY Times front page attention
« Reply #9 on: June 30, 2010, 09:56:05 pm »
Given the current waiting lists, I expect deaths from these lists, before the year is out.
Sadly, there's already been one death in South Carolina :'(

great message and great ideas to put into action, Joe ;)
leatherman (aka Michael)

We were standing all alone
You were leaning in to speak to me
Acting like a mover shaker
Dancing to Madonna then you kissed me
And I think about it all the time
- Darren Hayes, "Chained to You"

Offline Miss Philicia

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Re: ADAP crisis receives NY Times front page attention
« Reply #10 on: June 30, 2010, 10:14:31 pm »
absolutely agreed, trey. the us government always seems to find funding for everything else we do: foreign aid, unnecessary warfare, etc...our government & the general public needs to wake up and look at this for what it really is

If you read the article, and while certainly the federal level should increase some funding, most of the problem is with state governments.  I've made this point so often here that I'm growing weary.  And yeah, it's mostly conservative states with already low tax rates that take more from the federal government than what they contribute.  I don't know why "blue" states with already higher tax rates should, once again, bail out the faulty budget process controlled by conservative legislators.
"I’ve slept with enough men to know that I’m not gay"

Offline Jody

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Re: ADAP crisis receives NY Times front page attention
« Reply #11 on: June 30, 2010, 10:48:48 pm »
Great post Philly with outstanding responses and it's certainly good the NY Times took the time and effort to report, what as Joe Killfoile astutely points out, many Americans have little concern for it would most certainly appear, perhaps even feeling some disdain for the disease and the attention and funding it gets, from their conservative, screw them point of view.

Many good folks can't wait until the economy improves or do people's judgemental attitudes.

Yes Joe the war economy just keeps pumping out that cash, even if it has to be printed up on demand without sufficient backing and leading one to wonder who really are the sacred cows on this planet.

Jody
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Offline max123

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Re: ADAP crisis receives NY Times front page attention
« Reply #12 on: June 30, 2010, 11:49:53 pm »
Sorry, but the people who need to wake up are in the HIV community, because if we don't do this, who do you think will? It's 25 years into this and we still can't find a couple billion a year to fund HIV services. If you plan to wait around and expect someone else to do all the lifting, then don't complain when the money runs out. This battle has played out for almost three decades and it's time for 21st century advocates, to step forward, harness technology and get the message out.

Long ago, die-ins were staged, legislators bullied, persuaded, begged, whatever was necessary to get the funding we need. Folks, wake up and understand that the majority of Americans do not care if you live or die, especially if it means, a pet project of theirs goes without funding. Sad that life saving medications have to compete with inanimate or wasteful spending, but that's how the game is played and somebody better start playing, for our side, before we no longer have even a seat at the table.

agreed joe, we pozzies are included in the 'general public' that i had referred to. interestingly, here at my aso in florida, poll workers have been diligently working with clients the past few weeks to document the exact ryan white and adap needs of our local hiv community. the results of the polls will be forwarded to the state, in order to justify the need for increased funding. i sure hope that is occuring in asos nationally.
1/86 - 6/08 (annually): neg elisa
7/09: pos elisa/pos wb
8/09: cd4 560, cd4% 35, vl 13,050
12/09: cd4 568, cd4% 33, vl 2,690
4/10: cd4 557, cd4% 29.3, vl 6,440
7/10: cd4 562, cd4% 29.6, vl 3,780

Offline max123

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Re: ADAP crisis receives NY Times front page attention
« Reply #13 on: June 30, 2010, 11:59:06 pm »
If you read the article, and while certainly the federal level should increase some funding, most of the problem is with state governments.  I've made this point so often here that I'm growing weary.  And yeah, it's mostly conservative states with already low tax rates that take more from the federal government than what they contribute.  I don't know why "blue" states with already higher tax rates should, once again, bail out the faulty budget process controlled by conservative legislators.

absolutely, philly. as ryan white and adap are federal programs, perhaps the federal government can establish a matching plan or do something to ensure that each state complies with the essential tenets of what these federal programs mandate.
1/86 - 6/08 (annually): neg elisa
7/09: pos elisa/pos wb
8/09: cd4 560, cd4% 35, vl 13,050
12/09: cd4 568, cd4% 33, vl 2,690
4/10: cd4 557, cd4% 29.3, vl 6,440
7/10: cd4 562, cd4% 29.6, vl 3,780

Offline Miss Philicia

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Re: ADAP crisis receives NY Times front page attention
« Reply #14 on: July 01, 2010, 10:35:14 am »
More bad news -- thanks to another teabaggin' Republican governor...

Quote
The new state budget signed by Governor Christie on June 29 results in the loss of access to HIV drugs for 957 individuals in New Jersey, effective August 1, 2010.

Despite the recommendations of AIDS activists and organizations such as Hyacinth AIDS Foundation, the Christie administration increased the income threshold for people living with HIV/AIDS from 500% to 300% of the federal poverty level, effectively disallowing access to life saving drugs for 957 people, including 600 individuals, 200 couples and 157 families. Since the State appropriations for the AIDS Drug Distribution Program increased by $7.5 million there is absolutely no need to change eligibility.
"I’ve slept with enough men to know that I’m not gay"

Offline leatherman

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Re: ADAP crisis receives NY Times front page attention
« Reply #15 on: July 01, 2010, 11:00:21 am »
Quote
increased the income threshold for people living with HIV/AIDS from 500% to 300% of the federal poverty level,
wow! 500%

I can't say I'm surprised by that move though. Only 7 states were at 500%, making 24 states above 300%. This just makes their eligibility requirements match what half of America has been at already.
http://www.statehealthfacts.org/comparetable.jsp?ind=543&cat=11&sub=127&yr=63&typ=2&sort=a

what is tragic though is the amount of people this is going to affect :'(

ensure that each state complies with the essential tenets of what these federal programs mandate.
well, that's one way for it happen, huh? ::) drop the standards to the lower common denominator. Ouch!
leatherman (aka Michael)

We were standing all alone
You were leaning in to speak to me
Acting like a mover shaker
Dancing to Madonna then you kissed me
And I think about it all the time
- Darren Hayes, "Chained to You"

Offline Miss Philicia

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Re: ADAP crisis receives NY Times front page attention
« Reply #16 on: July 01, 2010, 11:05:58 am »
The cost of living in New Jersey is a bit high, as most of the state is either a suburb of Philadelphia or NYC.  Comparing it to "half of America" is disingenuous.
"I’ve slept with enough men to know that I’m not gay"

Offline HippieLady

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Re: ADAP crisis receives NY Times front page attention
« Reply #17 on: July 01, 2010, 11:06:11 am »
Reading all this is quite scary.  I think this is what has bothered me and my husband the most thoughout finding out my status.  We have good insurance at the moment, my labs have been costing me more than my meds.  But there has been talk at his work of the company changing insurance plans to a HSA (health savings account).  We've been trying to figure out what that would mean for me.  We've even discussed him sending his resumes out to larger companies that might have better health coverage.

I think it's the health coverage that worries us the most.  It looks like we might need to get a good backup plan in order.
~Katie~
Diagnosed HIV+ April 30, 2010

Current CD4-638  VL-UD  11/2013

Offline leatherman

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Re: ADAP crisis receives NY Times front page attention
« Reply #18 on: July 01, 2010, 11:09:39 am »
Comparing it to "half of America" is disingenuous.
since it's percentages, it really depends on the dollar amount for the poverty level in each state.

Though different dollar amounts,
300% of poverty in NJ should "equal" 300% poverty in Louisiana.
leatherman (aka Michael)

We were standing all alone
You were leaning in to speak to me
Acting like a mover shaker
Dancing to Madonna then you kissed me
And I think about it all the time
- Darren Hayes, "Chained to You"

Offline Miss Philicia

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Re: ADAP crisis receives NY Times front page attention
« Reply #19 on: July 01, 2010, 11:22:47 am »
since it's percentages, it really depends on the dollar amount for the poverty level in each state.

Though different dollar amounts,
300% of poverty in NJ should "equal" 300% poverty in Louisiana.

It's a % of the federal poverty level, Missy.
"I’ve slept with enough men to know that I’m not gay"

Offline Miss Philicia

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Re: ADAP crisis receives NY Times front page attention
« Reply #20 on: July 01, 2010, 11:27:28 am »
btw, IMO states should make eligibility vary for different regions within their own states if necessary.  As that link in my last post shows in the footnotes, only two places do this, one being Virginia where I grew up.  The cost of living in norther Virginia (i.e. DC suburbs) is way out of line for the rest of the state.  Those counties aren't only pricey, but they're among the highest median household income in the entire United States (mainly Loudoun and Fairfax).  Even that tiny 33% differential Virginia made is laughable.
"I’ve slept with enough men to know that I’m not gay"

Offline Inchlingblue

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Re: ADAP crisis receives NY Times front page attention
« Reply #21 on: July 01, 2010, 11:59:50 am »
This issue about access to meds (and to health care in general) is the major issue facing anyone with HIV/AIDS.

Even those of us who have insurance have cause to worry. I don't for a minute buy that Big Pharma is being magnanimous in lowering their costs to ADAPs, they will likely pass the costs on to the insured, who will face higher premiums and have higher co-pays and higher deductibles.

As stated before, wouldn't questions about access be a non-issue if Test and Treat were adopted? It saddens me that  a respected and influential activist such as Sean Strub would be spending his energies on fighting the so-called civil liberties questions behind Test and Treat. The proposals for T & T that I've seen are quite reasonable and don't in any way infringe on anyone's rights. I see T & T as a win-win. What is so wrong with guaranteeing that everyone with HIV can have access to medications and treatment?

When I see people on these forums and elsewhere debating whether or not to start meds I can't help thinking most of them have got to be from Europe or Canada, etc., where there's access to Universal health care because certainly here in the US the number of people who can have the luxury, indeed the freedom, to sit around and debate the pros and cons of starting are dwindling. A person is lucky if they can access the meds at all, let alone decide they want to start.
« Last Edit: July 01, 2010, 03:05:45 pm by Inchlingblue »

Offline mecch

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Re: ADAP crisis receives NY Times front page attention
« Reply #22 on: July 01, 2010, 02:50:36 pm »
I see T & T as a win-win. What is so wrong with guaranteeing that everyone with HIV can have access to medications and treatment?

I think it is win win. But its easy to ask a different question - that doesn't set right with HIV+ people --  is there any disease for which patients are guaranteed treatment, in the US?  TB maybe, for public health reasons?
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline Inchlingblue

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Re: ADAP crisis receives NY Times front page attention
« Reply #23 on: July 01, 2010, 04:18:30 pm »
I think it is win win. But its easy to ask a different question - that doesn't set right with HIV+ people --  is there any disease for which patients are guaranteed treatment, in the US?  TB maybe, for public health reasons?

I think it all depends on how it's presented or "sold" to the public.  This certainly would be a start:

Antiretroviral Treatment Cuts HIV Transmission Rate by 92 Percent
Heterosexual HIV-positive people who are taking antiretroviral (ARV) therapy were 92 percent less likely to pass on the virus to their HIV-negative sex partners, according to a study published online May 27 in The Lancet.


From a fiscal point of view, it can be argued that those on treatment cost less to the public coffers in the long run, since it means fewer emergency room visits and hospital stays, etc.

Would more people on treatment mean that prices of HIV meds might go down, since there's a larger market? Maybe that's wishful thinking. Prices go down with competition not necessarily because the market increases. If the government were buying more of the meds they could negotiate prices the way that EU countries do.

LINK:

http://www.poz.com/articles/hiv_treatment_prevention_761_18487.shtml

Of course if we had proper access to health care this would all be moot.

I wonder, are transmission rates lower in countries with universal health care? I guess it might be only if more people actually test and get treated.
« Last Edit: July 01, 2010, 04:21:17 pm by Inchlingblue »

Offline PeteNYNJ

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Re: ADAP crisis receives NY Times front page attention
« Reply #24 on: July 02, 2010, 01:05:34 am »
Quote
The cost of living in New Jersey is a bit high, as most of the state is either a suburb of Philadelphia or NYC.  Comparing it to "half of America" is disingenuous.

It is ridiculously expensive, especially Northern Jersey where I live.  Ironically, I just got approved for ADAP in NJ.  Gov. Christie basically cut every budget as opposed to raise any tax on his fat cat (and I do mean fat..look at the man) republican friends.  Just another "let the eat cake" Republicans.  Le Douche.


Offline edfu

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Re: ADAP crisis receives NY Times front page attention
« Reply #25 on: July 02, 2010, 03:52:51 am »
As stated before, wouldn't questions about access be a non-issue if Test and Treat were adopted? 

How so?  Test and Treat does NOT pay for ARV's if the HIV+ newbie does not have insurance or cannot afford them.   If we can't fully fund the ADAP programs now, how would we if Test and Treat became policy?   

If the government were buying more of the meds they could negotiate prices the way that EU countries do.


Ha!  Are you serious?  Obama removed governmental negotiation with pharmaceutical companies on drug prices from the table BEFORE the Insurance Industry Profit Protection and Enhancement Act was even written.   
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Offline mecch

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Re: ADAP crisis receives NY Times front page attention
« Reply #26 on: July 02, 2010, 04:29:50 am »
Ha!  Are you serious?  Obama removed governmental negotiation with pharmaceutical companies on drug prices from the table BEFORE the Insurance Industry Profit Protection and Enhancement Act was even written.   

Yes he did this low down dirty deal.  But it came to light during the congressional machinations over health care reform and I'm not sure congress finally respected any of his secret agreements, which were no longer secret.  Probably they both did, knowing how wont the mainstream US government is to ever curtail "free market" profiteering.
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Offline Inchlingblue

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Re: ADAP crisis receives NY Times front page attention
« Reply #27 on: July 02, 2010, 11:30:13 am »
How so?  Test and Treat does NOT pay for ARV's if the HIV+ newbie does not have insurance or cannot afford them.   If we can't fully fund the ADAP programs now, how would we if Test and Treat became policy?  
 

The whole point of Test & Treat, if adopted, is that both aspects would be addressed: the "Test" part and the "Treat" part. IF adopted, and I know it's a big "if," it would mean that those testing positive would be treated.

The strategy would involve annual HIV screening and treatment for everyone who tests positive for the virus.

But you're right, in this economic climate Test & Treat is not likely to happen. HIV activist Sean Strub is against T & T and all I'm saying is it would not necessarily be a bad thing if it were to be adopted. As far as an economic argument for T & T, if it is found to lower infection rates, this will reduce overall costs.


It seems the NY Times article has caused a spike in more articles about the ADAP crisis in smaller publications, such as:

http://colorlines.com/archives/2010/07/support_for_hiv_and_aids_drugs_still_weak.html
« Last Edit: July 02, 2010, 01:56:14 pm by Inchlingblue »

Offline leatherman

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Re: ADAP crisis receives NY Times front page attention
« Reply #28 on: July 02, 2010, 01:44:11 pm »
It seems the NY Times article has caused a spike in more articles about the ADAP crisis in smaller publications, such as:
http://colorlines.com/archives/2010/07/support_for_hiv_and_aids_drugs_still_weak.html
That article not only left me with questions; but seemed to mis-state several things.

Quote
Although life-sustaining antiretroviral drugs are available, they cost an average of $12,000 a year.
I see this number bantered around a lot. Does anyone know where this number comes from? Quite frankly, from most people I've ever talked to (clients and case managers) in OH, NC, and SC, the cost is double that at >$2k per month. What sort of med regimen only costs $1k per month?

Quote
While states like New Jersey and Illinois plan to dramatically shrink the numbers of people on their rolls, others, like Louisiana, are doing away with waiting lists altogether.
1) "dramatically shrink" is too nice an euphemism for changing eligibility requirements, and kicking people, who have been receiving meds thru ADAP, off with rolls without any help afterward to continue receiving meds. These people then become the "uncounted" who aren't even on an ADAP waiting list, but still need medications and have no access to them.
2) according to ASO workers on the Presidential Advisory Council on HIV/AIDS (PACHA) conference call and live blog just the other day, IL (along with OH and GA) will be "shrinking the numbers" on ADAP by cutting them off and putting them on the soon-to-start waiting lists
OH is about to post a big wait list, IL will soon join the list with over 400 people, and GA probably started their wait list today (7/1).
3) LA is not "doing away with" but just started a waiting list with 112 people a week ago in this last June 25th ADAP Watch.

Quote
There are more than a million people living with HIV today, more than ever before. Southern states in particular have been unable or unwilling to maintain their share of the costs required to keep ADAPs running with that level of demand.... Either way, there's not enough money overall: Federal contributions to ADAP have never kept pace with demand, in good times or bad, and the Centers for Disease Control's HIV prevention budget has never topped $800 million.
I saw this complaint in the PACHA conference also. Although some states are failing to adequately fund their portion of ADAP (as in my state of SC, thanks to the "evil" Republicans in the state legislature), each year more people are infected and more need ADAP while the federal budget has not increased in proportion to keep apace the raising amount of infected people who need treatment, much less caring for the amount of people already in need.
leatherman (aka Michael)

We were standing all alone
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Offline Inchlingblue

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Re: ADAP crisis receives NY Times front page attention
« Reply #29 on: July 02, 2010, 01:51:45 pm »

I see this number bantered around a lot. Does anyone know where this number comes from? Quite frankly, from most people I've ever talked to (clients and case managers) in OH, NC, and SC, the cost is double that at >$2k per month. What sort of med regimen only costs $1k per month?
 

I was questioning this number too. After thinking about it the only explanation I can think of is that maybe this is what ADAPs pay after their discounts. Or it could just be an error on the part of the Times. ADAPs do buy the meds at a lower price, though (not sure how much lower).

I understand this is also the ballpark price the NHS pays in the UK.

Here in the US the retail price for a standard 3-drug combo of drugs not yet available as generic is in the $2K per month range.

Offline Miss Philicia

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Re: ADAP crisis receives NY Times front page attention
« Reply #30 on: July 02, 2010, 04:38:23 pm »
the only explanation I can think of is that maybe this is what ADAPs pay after their discounts.

That was my assumption, since the article references the rebate at 31% so NYT is just trying to calculate the cost per patient to the taxpayer.  But whatever, they assuredly got the number from a source.
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Offline phildinftlaudy

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Re: ADAP crisis receives NY Times front page attention
« Reply #31 on: July 02, 2010, 04:42:06 pm »
I'm trying to think of the best, most powerful way to take action regarding what is happening with ADAP and the growing waitlist.  I want to organize a gathering in Tallahassee - the problem is the legislature here only meets for a few months of the year - I believe that aren't in session again until February.... can you believe it?  Any other suggestions of how to make a powerful statement that will result in action?
September 13, 2008 - diagnosed +
Labs:
Date    CD4    %   VL     Date  CD4  %   VL
10/08  636    35  510   9/09 473  38 2900  12/4/09 Atripla
12/09  540    30    60   
12/10  740    41  <48   
8/11    667    36  <20  
03/12  1,041  42  <20
05/12  1,241  47  <20
08/12   780    37  <20
11/12   549    35  <20
02/12  1,102  42  <20
11/12   549    35  <20

Offline Inchlingblue

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Re: ADAP crisis receives NY Times front page attention
« Reply #32 on: July 02, 2010, 04:51:57 pm »
That was my assumption, since the article references the rebate at 31% so NYT is just trying to calculate the cost per patient to the taxpayer.  But whatever, they assuredly got the number from a source.


I don't think the 31% refers to the rebates that ADAPs get on drugs. It seems to be referring to the chunk of the ADAP pie that comes from pharmaceutical rebates. But it's possible that the discount is in that ballpark.

The drug program’s budget from all sources is now $1.6 billion, with Washington contributing about 55 percent, states offering 14 percent and drug company rebates accounting for 31 percent, according to the state AIDS directors.

The price the Times quoted is basically a 50% rebate and I doubt that's what ADAPs are getting but it's possible; there have been recent re-negotiations between ADAPs and some of the pharmaceuticals.
« Last Edit: July 02, 2010, 04:54:48 pm by Inchlingblue »

Offline leatherman

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Re: ADAP crisis receives NY Times front page attention
« Reply #33 on: July 02, 2010, 07:47:04 pm »
I was questioning this number too.
But whatever, they assuredly got the number from a source.
in googling "antiretroviral $12000" it seems this $12k number has been in use since at least 1998. In numerous references however, no information is ever given on just what that number is actually based upon.

American Psychiatric Assoc. - treatment psychiatric diseases compendiom 2006 pg 203
"cost is $12,000 per year"

thebody.com mar 2002
Policy Facts: Catch-22: Medicaid and HIV
"But the costs of HIV care can impoverish anyone, and people living with HIV are already disproportionately low-income. Antiretroviral therapy alone costs approximately $10,000-$12,000 annually, making it virtually impossible for low-income people to access life-prolonging medications without health insurance."

aidsaction.com ETHA pdf
"Treatment with antiretroviral therapy costs between $10,000 and $12,000 annually, and the cost of monitoring patients
and other services related to antiretroviral therapy rises to $18,500. 5"
"5 Bartlett, J. & Finkbeiner, A. (1998). The Guide to Living with HIV Infection, 4th Ed. Baltimore, MD: The Johns Hopkins University Press."

"This expansion is quite cost-effective when compared to the $10,000 to $12,000 it costs annually to pay for antiretroviral therapy and the $34,000 it can cost annually to treat someone with advanced AIDS.7"
"7 Feig, Kristy. (2002). Study explores high cost of HIV care in U.S. (Web page).
http://www.cnn.com/2002/HEALTH/conditions/07/10/aids.costs/ [retrieved January 22, 2003]."
 
notice the above reference says "$10-12k" when the article they are quoting says "$14k" as the low number
CNN July 10 2002
"The average annual cost of treating HIV-positive patients in the United States can vary from about $34,000 to $14,000, depending on the stage of the virus, according to a study released Wednesday at the 14th International AIDS Conference.
The yearly expense for treatment averages $34,000 for people in the advanced stage of illness compared with $14,000 for those infected who are keeping the virus at bay with a combination of anti-retroviral medications known as the AIDS drug cocktail, the report found."

Assessing the barriers to universal antiretroviral treatement access for hiv/aids in South Africa
"In early 2000, the price of [HAART] for one patient for a year was $US10,000-$12,000. By the end of 2000, prices has dropped to US$500-$800 per person per year for the first-line antiretroviral treatment in low-income countries."
dailybeast
"In just 10 years, the price of antiretroviral drugs was reduced from $12,000 to $170, making them far more accessible to those who need them. And the numbers of AIDS-related deaths and HIV infections have recently declined for the first time."
leatherman (aka Michael)

We were standing all alone
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Acting like a mover shaker
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- Darren Hayes, "Chained to You"

Offline Inchlingblue

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Re: ADAP crisis receives NY Times front page attention
« Reply #34 on: July 02, 2010, 07:52:15 pm »
This article from Public Health Reports (2007) is more accurate:

The average annual cost of ARV treatment in the United States is from $20,000 to $24,000

LINK:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1802113/

Offline edfu

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Re: ADAP crisis receives NY Times front page attention
« Reply #35 on: July 02, 2010, 07:57:19 pm »
Perhaps a letter-writing campaign can be initiated to newspapers and publications, correcting their use of the incorrect $12,000 figure and referring them to the more accurate figure from the NIH. 
"No one will ever be free so long as there are pestilences."--Albert Camus, "The Plague"

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Offline leatherman

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Re: ADAP crisis receives NY Times front page attention
« Reply #36 on: July 02, 2010, 08:13:58 pm »
Any other suggestions of how to make a powerful statement that will result in action?
My ASO held a letter writing campaign to the state legislators on the finance committee. Xeroxed letters were put into pre-stamped envelopes and then people hand addressed and signed them. (this information was also posted onto their website and facebook site as a fan page)

I compiled a list of the legistlator's email addresses (that I had also posted here in my SC ADAP thread), from my district and on the finance committe, and sent the list and a pre-written email out to an email list of friends, family, and ASO clients, so that they could send emails out to our legislators.

During the recent rally on the capital steps, one of the speakers would come up every so often and give us the phone number to one of the legislator's office . Everyone in the crowd would then dial in, swamping that legislator's switch board and office with phone calls and voice mails.
leatherman (aka Michael)

We were standing all alone
You were leaning in to speak to me
Acting like a mover shaker
Dancing to Madonna then you kissed me
And I think about it all the time
- Darren Hayes, "Chained to You"

Offline phildinftlaudy

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Re: ADAP crisis receives NY Times front page attention
« Reply #37 on: July 02, 2010, 08:56:45 pm »
Thanks Mikie --- Good suggestions ---- We really gotta get on this and stay on this.
September 13, 2008 - diagnosed +
Labs:
Date    CD4    %   VL     Date  CD4  %   VL
10/08  636    35  510   9/09 473  38 2900  12/4/09 Atripla
12/09  540    30    60   
12/10  740    41  <48   
8/11    667    36  <20  
03/12  1,041  42  <20
05/12  1,241  47  <20
08/12   780    37  <20
11/12   549    35  <20
02/12  1,102  42  <20
11/12   549    35  <20

Offline edfu

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Re: ADAP crisis receives NY Times front page attention
« Reply #38 on: July 02, 2010, 09:11:36 pm »
I wish we had more specific details about actual cases:  those who have died in the past while on ADAP wait lists and those who are now on wait lists and what they have had to do and what they are enduring, both physically and mentally.  These human and particular stories have much more visceral and dramatic impact than the generic features of this crisis (x number died, x number are on wait lists).   
"No one will ever be free so long as there are pestilences."--Albert Camus, "The Plague"

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Offline mecch

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Re: ADAP crisis receives NY Times front page attention
« Reply #39 on: July 03, 2010, 08:31:14 am »
The 2K USD per month average is a bit surprising to me, as I thought Switzerland was paying "top dollar" (i.e. top swiss franc) to the companies.  
The Isentress I just picked up was double the price of the Intelence I just quit. Isentress 1350 CHF equals 1270 USD.  

Isentress is solely the property of the US subsidiary of the German MERCK?
Intelence is American.

Atripla is all American produced, as well.

Is this the American pharmaceuticals getting the price they want, purely, or is it also Congress protecting the right of American corporations to gouge Americans?

But then again, I suppose quite a few people are on 4 drug HAART, so it all ads up.

Is the US paying too much for these drugs? I mean it seems to this naive person that the US should be paying about the same as European countries since the wealth of these countries is pretty much the same.
Or, in another logic, the US could be paying a bit less, morally, since there are SO many people not covered by any safety net, which doesn't yet exist - riddled with holes in fact.

« Last Edit: July 03, 2010, 08:32:50 am by mecch »
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Offline leatherman

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Re: ADAP crisis receives NY Times front page attention
« Reply #40 on: July 03, 2010, 10:16:48 am »
The 2K USD per month average is a bit surprising to me
norvir($275)/reyataz($955)/truvada($951) plus acyclovir($28) = $2249 per month (USD)
since my SC ASO recently changed out viread and videx ec for truvada in my regimen, the costs for my meds went down about $230 - and that's why the $1k a month ($12k a yr) cost sounded way low to me.

I wish that report you found, Inch, said more about the actual med regimens though. The report explained that the $2k (actually "$1,863 per month") was the average of what the patients' meds cost each month, based upon data sources from 1996, 1998, 2001, 2005

"A study by Wong calculated the average cost per inmate of HIV care in the Virginia Department of Corrections.12 (2001) This estimate, along with 1998 actual costs from Michigan, New York, and Rhode Island Departments of Corrections (MDOC 1998, NYDOC 1998, RIDOC 2005) were used to create a national estimate of the cost of HIV care per inmate. Data on proportion of costs attributable to HIV medications were taken from Bozzette et al., who randomly surveyed 3,072 HIV-infected patients throughout the United States.14 (1996)"

The information in the "Bozzette et al" report from 1996 could have been a bit lop-sided too as those patients were in poorer health. (and yet that average of $1863 is still $386 less than my meds in 2010 ::))
"RESULTS: During the first two months of 1996, an estimated 231,400 HIV-infected adults (95 percent confidence interval, 162,800 to 300,000) received care. Fifty-nine percent had the acquired immunodeficiency syndrome according to the case definition of the Centers for Disease Control and Prevention, and 91 percent had CD4+ cell counts of less than 500 per cubic millimeter."

(I was one of those 231,400 HIV-infected adults in 1996 and part of the 59% with AIDS. WooHoo! :D )
leatherman (aka Michael)

We were standing all alone
You were leaning in to speak to me
Acting like a mover shaker
Dancing to Madonna then you kissed me
And I think about it all the time
- Darren Hayes, "Chained to You"

Offline leatherman

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Re: ADAP crisis receives NY Times front page attention
« Reply #41 on: July 03, 2010, 10:36:05 am »
I wish we had more specific details about actual cases:  those who have died in the past while on ADAP wait lists and those who are now on wait lists and what they have had to do and what they are enduring, both physically and mentally.
one of our newer members, hope_for_a_cure, is on the SC waiting list

I am one of the 145 in SC that is waiting.
Yes there is an AIDS Service Organization here in this part of the state, that is how I am able to see the ID Spec. for 20bucks/visit.  My major expense is medication (other than Atripla).  I have no income currently so I have to watch every little penny that I have left.  The sale of my property did allow me to re-pay my mother for hospital expenses and all those tests.  I have a little bit left but it by no means will see me through the rest of my life.  I will find a way though... I am sure of that! 
(I hope you don't mine me pointing this out J; but I worry about your situation. :-*)
leatherman (aka Michael)

We were standing all alone
You were leaning in to speak to me
Acting like a mover shaker
Dancing to Madonna then you kissed me
And I think about it all the time
- Darren Hayes, "Chained to You"

Offline Inchlingblue

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Re: ADAP crisis receives NY Times front page attention
« Reply #42 on: July 03, 2010, 11:54:52 am »
The 2K USD per month average is a bit surprising to me, as I thought Switzerland was paying "top dollar" (i.e. top swiss franc) to the companies.  
The Isentress I just picked up was double the price of the Intelence I just quit. Isentress 1350 CHF equals 1270 USD.  
 

I'm pretty sure that the reason for the price disparity is that in Europe and in other countries with National health care systems such as Canada and Australia, the governments are able to negotiate prices with the drug companies.

Here in the US the Big Pharma lobby is so powerful that it has ben able to stop any legislation that would allow for price negotiations.

The price you quote for Isentress is for one month? If so, that sounds pretty high.
« Last Edit: July 03, 2010, 11:56:45 am by Inchlingblue »

Offline mecch

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Re: ADAP crisis receives NY Times front page attention
« Reply #43 on: July 03, 2010, 12:51:50 pm »
Yep one month, and I just took by mistake a double dose, 2 times.  :P
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Offline Inchlingblue

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Re: ADAP crisis receives NY Times front page attention
« Reply #44 on: July 03, 2010, 01:34:05 pm »
Yep one month, and I just took by mistake a double dose, 2 times.  :P

The price you quote sounds very high. My insurance pays $912. per month for 60 pills and the drugstore.com price is $994.

I guess it's just because of an unfavorable exchange rate when you convert to dollars?
« Last Edit: July 03, 2010, 04:36:57 pm by Inchlingblue »

Offline mecch

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Re: ADAP crisis receives NY Times front page attention
« Reply #45 on: July 03, 2010, 05:32:52 pm »
Should be less than a 1000 CHF then, the exchange rate is wonderful for us right now. 
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline edfu

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Re: ADAP crisis receives NY Times front page attention
« Reply #46 on: July 03, 2010, 09:11:35 pm »
Epzicom ($1,157.99) + Sustiva ($738.99) = $1,896.98 per month.

If I include the Valacyclovir ($359.49) = $2,256.47 per month. 

If I also include psychotropics (citalopram + Seroquel:  $421.97) = $2,678.44 per month.
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Offline red_Dragon888

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Re: ADAP crisis receives NY Times front page attention
« Reply #47 on: July 04, 2010, 12:00:29 pm »
The govt should force the drug companies to reduce the cost of medication, afterall, they have made enormous profits over the past years.   I mean a couple of thousand a month for pills is ridiculous.  The govt can't and probably won't want to pay the high cost of medication and health benefits for HIV people and it was bound to happen.  The only recourse is to protest what is happening and force the govt to do the right thing before we are back in the 1980's Aids epidemic.
http://www.youtube.com/watch?feature=player_embedded&v=I3ba3lnFHik

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Offline mecch

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Re: ADAP crisis receives NY Times front page attention
« Reply #48 on: July 05, 2010, 02:58:15 pm »
PS, if someone is in a bind and needs Intelence, please contact me.  ;)
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline Inchlingblue

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Re: ADAP crisis receives NY Times front page attention
« Reply #49 on: July 05, 2010, 03:22:25 pm »
PS, if someone is in a bind and needs Intelence, please contact me.  ;)

More people will probably see this in its own thread . . . just sayin'

(I think you had a thread about this, maybe?)

 


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