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Author Topic: ADAP Update 9/17/10 - Better News On A Bad Situation  (Read 6406 times)

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Offline leatherman

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  • Google and HIV meds are Your Friends
ADAP Update 9/17/10 - Better News On A Bad Situation
« on: September 18, 2010, 09:15:19 PM »
There's some better news with this latest ADAP update. As a result of ADAP Emergency Funding, Hawaii, Idaho, South Dakota, and Utah have eliminated their waiting lists. Iowa seemed to have cleared their list before capping enrollment. Kentucky's list is down by 38 while NC removed 172 from their list and SC cleared 187 from their list.

Sadly though Flordia's list continued to rise by another large amount, while Georgia, Louisiana and Ohio continued to add people to their respective waiting lists.

ADAPs with Waiting Lists
3,214 individuals in 9 states*, as of September 16, 2010
(changes from September 2, 2010 noted in parens (-344))

Florida: 1,712 individuals (+206)
Georgia: 533 individuals (+25)
Hawaii: 0 individuals* (-12)
Iowa: 0 individuals (program capped on September 15, 2010) (-125)
Kentucky: 227 individuals (-38)
Louisiana: 394 individuals** (+55)
Montana: 10 individuals (0)
North Carolina:  30 individuals (-172)
Ohio: 205 individuals (+49)
South Carolina: 103 individuals (-187)
South Dakota: 0 individuals* ( -25)
Utah: 0 individuals* (-145)

*As a result of ADAP Emergency Funding, Hawaii, Idaho, South Dakota, and Utah have eliminated their waiting lists.
**Louisiana has a capped enrollment on their program.  This number is a representation of their current unmet need.

http://nastad.org/Docs/Public/InFocus/2010917_ADAP%20Watch%20update%20-%209.17.10.pdf
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

Offline peteb

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Re: ADAP Update 9/17/10 - Better News On A Bad Situation
« Reply #1 on: September 18, 2010, 09:48:30 PM »
how about arizona

Offline leatherman

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Re: ADAP Update 9/17/10 - Better News On A Bad Situation
« Reply #2 on: September 18, 2010, 10:02:46 PM »
how about arizona
according to the watch list document, AZ has already reduced their formulary and is "considering" adding a wait list as a form of cost-containment before the end of the fiscal year on March 31, 2011 (but AZ doesn't currently have a list started).
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

Offline leatherman

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Re: ADAP Update 9/17/10 - Better News On A Bad Situation
« Reply #3 on: September 19, 2010, 02:59:02 PM »
Although the rallies for ADAP funding in SC back in Mar and May (SC ADAP Funding Cut Protest Rally) helped stopped the legislature from defunding the entire ADAP budget, unfortunately, the State's decision to inadequately fund ADAP may have serious repercussions and result in lessened federal funding in the future.

http://www.heraldonline.com/2010/09/19/2463376/budget-cuts-make-aids-patients.html
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

Offline peteb

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Re: ADAP Update 9/17/10 - Better News On A Bad Situation
« Reply #4 on: September 19, 2010, 04:09:52 PM »
Thanks for the info

Offline leatherman

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Re: ADAP Update 9/17/10 - Better News On A Bad Situation
« Reply #5 on: September 19, 2010, 05:30:04 PM »
Thanks for the info
no problemo.  ;D
that's what we here for isn't it? Some knowledge and a little companionship from people with similar issues. ;)

With some luck maybe AZ won't start up a waiting list; however, everyone who is currently receiving help from ADAP better be minding their P and Qs, lest they lose ADAP and end up on the waiting list.
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

Offline brooklynpoz

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  • My Babies, Pepper (8) & Rocko (3)
Re: ADAP Update 9/17/10 - Better News On A Bad Situation
« Reply #6 on: September 21, 2010, 04:47:50 PM »
Hi Leatherman,

I can't believe there is any waiting list in this country. :(
I'm scared now to relocate down to Florida, I'm in NY & on ADAP.
My Uncle is giving my partner & I,  a house down in pompano beach & we are stuck up here .
Are there any groups / activist in D.C. trying to help all the states to eliminate
a waiting list.
Have you heard from anyone in Florida say what ADAP is doing, or telling them to do?
For instance, wait 3 - 6 months  & don't take your med's, etc.
I read that if you 're undetectable & a some what nice Tcell count, you can fall into tier 3, low priority.
Well, that's because the miracle med's got some of us there.... I'm like  " Duh "...

Anyway, any info you can provide, is most welcomed.....
Thank you in advance,
BrooklynPoz
Diagnosed, Monday,  8/9/2004, 1ST year was ruff , now I am well adjusted .
Current Med's ; Kaletra & Truvada
Undetecable,<48 ,  531 tcells, 21%
Keeping the faith, that they will get a cure in our lifetime.
LIVE , LOVE , LAUGH

Offline leatherman

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Re: ADAP Update 9/17/10 - Better News On A Bad Situation
« Reply #7 on: September 21, 2010, 06:00:50 PM »
I'm scared now to relocate down to Florida, I'm in NY & on ADAP.
My Uncle is giving my partner & I,  a house down in pompano beach & we are stuck up here .
well, if you moved to FL, you'd end up on the waiting list, behind 1700+ others, and that could cause you to go without meds. Of course, this shouldn't be your first choice or course of action to take then ;)

Because there aren't that many people with HIV (relatively speaking), many people living in the boonies, have to drive 100s of miles for proper health care, or move to areas that will provide care. Sad to say but you might have to stay where you are to continue receiving proper care, unless the difference in the cost of the housing will allow you to get your meds.

I'll check into the national groups and get some links up later ;)
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

Offline tednlou2

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Re: ADAP Update 9/17/10 - Better News On A Bad Situation
« Reply #8 on: September 23, 2010, 01:27:00 AM »
This may not directly relate to HIV, but it made me think that HIVers aren't the only ones in need of life-saving drugs and why we need universal healthcare.  This is about a very effective, but extremely expensive, cancer drug that has to be taken for life or the cancer will come back.  And, with HIV putting us at higher risk for cancers, this may not be as off topic as I thought.  

http://www.msnbc.msn.com/id/3032619/ns/nightly_news/#39315634

Edited for spelling

Offline leatherman

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ADAP Update 9/24/10 - back to the grind
« Reply #9 on: September 28, 2010, 05:02:32 PM »
after some emergency funds rolled through before the last report, a few states cleared their waiting lists and a few other states were able to enroll some people and shrink their lists. There was the "better news about a bad situation"; but now we're "back to the grind" and adding to the lists again. Sigh. Hopefully the National HIV/AIDS Strategy++ can eventually be of some help with this ADAP issue.

ADAPs with Waiting Lists
3,441 individuals in 9 states*, as of September 23, 2010
(changes from September 16, 2010 noted in parens (+227))

Florida: 1,796 individuals (+84)
Georgia: 553 individuals (+20)
Iowa: 0 individuals (program capped on September 15, 2010)
Kentucky: 227 individuals (0)
Louisiana: 439 individuals** (+45)
Montana: 10 individuals (0)
North Carolina:  36 individuals (+6)
Ohio: 232 individuals (+27)
South Carolina: 148 individuals (+45)

*As a result of ADAP Emergency Funding, Hawaii, Idaho, South Dakota, and Utah have eliminated their waiting lists.
**Louisiana has a capped enrollment on their program.  This number is a representation of their current unmet need.

http://www.nastad.org/Docs/Public/InFocus/2010924_ADAP%20Watch%20update%20-%209.24.10.pdf

++for more information about the National HIV/AIDS Strategy see:
http://aids.gov/federal-resources/policies/national-hiv-aids-strategy/
http://blog.aids.gov/national-aids-strategy/
http://nationalaidsstrategy.org/
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

Offline tednlou2

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  • Posts: 4,606
Re: ADAP Update 9/17/10 - Better News On A Bad Situation
« Reply #10 on: September 29, 2010, 12:15:44 AM »
I just read something about how KY got something like $1.7 Million for ADAP.  I was very surprised by this that our small state got that kind of money.  I believe the only other states that got that kind of high dollar amount were CA, NC, and FL, no??  The other states got like $200K, 300k, etc.  $1.7 here hasn't cleared our waiting list?  Or, has it not all been allocated?  I'm trying to remember where I read it.  Probably right here on the poz homepage.

Did we get so much due to our large waiting list?  I know Sen McConnell surely didn't have anything to do with that.

Offline leatherman

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Re: ADAP Update 9/17/10 - Better News On A Bad Situation
« Reply #11 on: September 29, 2010, 12:58:24 AM »
I'm trying to remember where I read it.
praying to the great god google ;D, I came up with this link: http://www.thebody.com/content/art58596.html#breakdown

The ADAP crisis was a major topic of conversation at the recent United States Conference on AIDS (USCA 2010). Kathleen Sebelius, Secretary of the U.S. Department of Health and Human Services (DHHS), spoke at a plenary session. She mentioned the emergency funding that the Obama administration has allocated to help ease the crisis -- $25 million, announced in July -- and a recent request for an additional $30 million.


The largest allotment of federal funds went to Florida, which has 1,361 people on its ADAP waiting list, the largest in the nation. Florida received $6.9 million -- which will only pay for three weeks' worth of medication...

...the $1.78 million Kentucky received is enough to cover everyone on the state's waiting list....

Iowa, meanwhile, received about $665,000 in federal funds. Even put together with a supplemental Ryan White Part B award, it isn't enough to end the state's waiting list, though it will allow "many clients" to access medications...

Over in Ohio, Governor Ted Strickland stated that the influx of federal funds -- about $1.2 million -- will "sustain the program at its current levels through the remainder of the fiscal year." As positive as that sounds, it's also worth noting that Ohio's "current level" has dropped sharply from previous levels, after it reduced its drug formulary and lowered financial eligibility earlier this summer. Those moves led to 257 clients being disenrolled from the program altogether, according to the August 27 ADAP Watch.



Amount Each State to Receive From the $25 Million ADAP Funding

Alaska$38,111
Arizona$262,550
California$2,423,137
Colorado$221,356
DC$332,891
Florida$6,979,996
Georgia$731,614
Hawaii$148,165
Idaho$301,143
Iowa$664,928
Kentucky$1,768,076
Louisiana$1,066,761
Missouri$238,545
Montana$131,566
New Jersey$642,727
North Carolina$2,242,421
North Dakota$65,503
Ohio$1,238,314
Oregon$273,790
Puerto Rico$1,738,967
Rhode Island$79,016
South Carolina$1,549,180
South Dakota$29,835
Tennessee$319,040
Utah$724,806
Virginia$407,816
Virgin Islands$38,133
Washington$192,677
Wisconsin$102,197
Wyoming$46,052
TOTALS$24,999,313
Source: U.S. Health Resources and Services Administration's HIV/AIDS Bureau
 
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

Offline metekrop

  • Member
  • Posts: 351
Re: ADAP Update 9/17/10 - Better News On A Bad Situation
« Reply #12 on: September 29, 2010, 07:49:46 AM »
praying to the great god google ;D, I came up with this link: http://www.thebody.com/content/art58596.html#breakdown

The ADAP crisis was a major topic of conversation at the recent United States Conference on AIDS (USCA 2010). Kathleen Sebelius, Secretary of the U.S. Department of Health and Human Services (DHHS), spoke at a plenary session. She mentioned the emergency funding that the Obama administration has allocated to help ease the crisis -- $25 million, announced in July -- and a recent request for an additional $30 million.


The largest allotment of federal funds went to Florida, which has 1,361 people on its ADAP waiting list, the largest in the nation. Florida received $6.9 million -- which will only pay for three weeks' worth of medication...

...the $1.78 million Kentucky received is enough to cover everyone on the state's waiting list....

Iowa, meanwhile, received about $665,000 in federal funds. Even put together with a supplemental Ryan White Part B award, it isn't enough to end the state's waiting list, though it will allow "many clients" to access medications...

Over in Ohio, Governor Ted Strickland stated that the influx of federal funds -- about $1.2 million -- will "sustain the program at its current levels through the remainder of the fiscal year." As positive as that sounds, it's also worth noting that Ohio's "current level" has dropped sharply from previous levels, after it reduced its drug formulary and lowered financial eligibility earlier this summer. Those moves led to 257 clients being disenrolled from the program altogether, according to the August 27 ADAP Watch.



Amount Each State to Receive From the $25 Million ADAP Funding

Alaska$38,111
Arizona$262,550
California$2,423,137
Colorado$221,356
DC$332,891
Florida$6,979,996
Georgia$731,614
Hawaii$148,165
Idaho$301,143
Iowa$664,928
Kentucky$1,768,076
Louisiana$1,066,761
Missouri$238,545
Montana$131,566
New Jersey$642,727
North Carolina$2,242,421
North Dakota$65,503
Ohio$1,238,314
Oregon$273,790
Puerto Rico$1,738,967
Rhode Island$79,016
South Carolina$1,549,180
South Dakota$29,835
Tennessee$319,040
Utah$724,806
Virginia$407,816
Virgin Islands$38,133
Washington$192,677
Wisconsin$102,197
Wyoming$46,052
TOTALS$24,999,313
Source: U.S. Health Resources and Services Administration's HIV/AIDS Bureau
 

Why the state I am living in, Maryland is not listed above.  Does that mean that there are no waiting lists in there? :o
Diag on Dec 8, 2000, CD 440 VL 44K, No Meds
Dec/08 - Feb/09 CD< 50 & VL >500k hosp'z.
St. Atripla - July/09 CD 179, VL 197k
Oct/09 CD 300 VL UD Chol 267
Mar/10 CD 468 UD, Ch 220
Aug/10 CD 460 UD, Ch 195
Dec/10 CD 492 UD, Ch 172
Mar/11 CD 636 UD, Ch 201
Aug/11 CD 530 UD, Ch 98
Jan/12 cd 616 UD, ch 189
Jul/12 CD 640 UD, Ch ?
Dec/12 CD 669 Ud, Ch 125
May/7 CD711 Ud, Ch?
Nov/ 22 663 UD, Ch,

Offline leatherman

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Re: ADAP Update 9/17/10 - Better News On A Bad Situation
« Reply #13 on: September 29, 2010, 11:25:27 AM »
Why the state I am living in, Maryland is not listed above.  Does that mean that there are no waiting lists in there? :o
Maryland does not have a waiting list, nor is it listed in the lastest report as considering other "cost-containment strategies". (Scroll back 2 or 3 replies to see the Sept 23rd listing of the 9 states currently with a waiting list)

only 27 states and 3 territories are listed in this report receiving a portion of the $25 million emergency funds. While there are only 9 states currently with waiting lists, there have been over a dozen to use waiting lists already this year. Several other states (many who received a portion of this money) have implemented other cost-cutting methods (upping eligiblity, capping enrollment/expenditure, or cutting their formulary - that's what drugs they will cover through ADAP) in lieu of waiting lists. Some states have taken multiple steps.

checking on Maryland, I found that the state did not start HIV reporting until 2007 (in the "notes" section about maryland "HIV diagnosis all ages" in the data statehealthfacts.org). We have discussed in another thread, how contact-tracing/name-reporting (Required interview with state health department ) also influences how federal dollars are allocated to the states by their reported numbers of HIV diagnoses and AIDS cases. Perhaps there has also been an effect on the monies Maryland might or might not receive because the state has only started to report cases in the last few yrs. Without reporting any HIV/AIDS numbers, the state has probably only been receiving minimal federal dollars since they could not prove the need for a specific amount.
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

Offline leatherman

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while KY clears their ADAP, it's offset by other states continuing to add
« Reply #14 on: October 13, 2010, 12:02:48 AM »
As Kentucky cleared their ADAP list during the last week of Sept, the difference was offset by Florida, Georgia, Ohio, Louisiana, and South Carolina continuing to add people. Iowa which had capped their list earlier has started their list back up with 9 people.

ADAPs with Waiting Lists (3,447 individuals in 8 states*, as of September 30, 2010)
(changes from September 23, 2010 noted in parens (+6))

Florida: 1,934 individuals (+141)
Georgia: 586 individuals (+33)
Iowa: 9 individuals (+9)
Kentucky: 0 individuals (-227)
Louisiana: 470 individuals** (+31)
Montana: 10 individuals (0)
North Carolina: 36 individuals (0)
Ohio: 244 individuals(+12)
South Carolina: 158 individuals (+10)

ADAP Oct 4th Watch List
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

Offline Assurbanipal

  • Member
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  • Taking a forums break, still see PM's
Re: ADAP Update 9/17/10 - Better News On A Bad Situation
« Reply #15 on: October 13, 2010, 09:58:56 AM »


On a better news front, the article sidebar on the left reports that ViV has just agreed to provide free drugs to anyone on an ADAP waiting list, through the Welvista program.  Together with the original three companies, that means that drugs manufactured by Abbott, Tibotec, ViV and Merck should all be available free to people on a waiting list.

Drugs manufactured by the various partners include:

Abbott: Kaletra, Norvir
Merck: Isentress, Crixivan
Tibotec: Intelence, Prezista, Rilpivirine
Viv: Combivir, Epivir, Epzicom, Lexiva, Rescriptor, Retrovir, Selzentry, Triziir, Viracept

Adding Viv, which brings both Epzicom and Combivir in, gives the program the critical mass needed to make it practical for many more people on a waiting list.
5/06 VL 1M+, CD4 22, 5% , pneumonia, thrush -- O2 support 2 months, 6/06 +Kaletra/Truvada
9/06 VL 3959 CD4 297 13.5% 12/06 VL <400 CD4 350 15.2% +Pravachol
2007 VL<400, 70, 50 CD4 408-729 16.0% -19.7%
2008 VL UD CD4 468 - 538 16.7% - 24.6% Osteoporosis 11/08 doubled Pravachol, +Calcium/D
02/09 VL 100 CD4 616 23.7% 03/09 VL 130 5/09 VL 100 CD4 540 28.4% +Actonel (osteoporosis) 7/09 VL 130
8/09  new regimen Isentress/Epzicom 9/09 VL UD CD4 621 32.7% 11/09 VL UD CD4 607 26.4% swap Isentress for Prezista/Norvir 12/09 (liver and muscle issues) VL 50
2010 VL UD CD4 573-680 26.1% - 30.9% 12/10 VL 20
2011 VL UD-20 CD4 568-673 24.7%-30.6%
2012 VL UD swap Prezista/Norvir for Reyataz drop statin CD4 768-828 26.7%-30.7%

Offline leatherman

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Re: ADAP Update 9/17/10 - Better News On A Bad Situation
« Reply #16 on: October 13, 2010, 10:15:30 AM »
gives the program the critical mass needed to make it practical for many more people on a waiting list.
thanks for pointing that out!  ;)

My local ASO hired a full time staffer this year to do nothing but the paperwork to obtain these discounted and free meds for our clients. We have been able to keep all of our clients in a three county area on meds and off the SC waiting list this whole year.

this has still got to be an emotionally tough time for many pozzies who are fearful of being able to keep obtaining meds, wondering how long ADAP or these drug companies will continue to provide them with meds. I wonder how many people don't test over fears that they might not be able to get treatment if their results are positive. Though I'm not knocking the assistance these companies are providing, and thank goodness they are, sadly it's still an imperfect and temporary solution to providing healthcare to positive people in America.
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

Offline Assurbanipal

  • Member
  • Posts: 2,173
  • Taking a forums break, still see PM's
Re: ADAP Update 9/17/10 - Better News On A Bad Situation
« Reply #17 on: October 13, 2010, 11:46:10 AM »
I was thinking about this some more (while going through my workout), and two more things pop to mind.

1) If you are on a waiting list, print out this list and bring it to your doctor.  It's really very very likely they can find a combo that works for you, especially since the vast majority of people on a waiting list are likely relatively new to treatment. 

2) To the extent the drug companies make any money by selling to the state ADAP dispensaries, this is going to put significant competitive pressure on the other companies to join in this free drug program, since once people start (on their competitor's drugs) while on the waiting list, most people will continue on the same regimen until they have a reason to change.  Also, doctors develoip prescribing habits, and are likely to have a bias toward prescribing drugs that are on the list.  So, if the non-participating companies don't join in soon, they could gradually be shut out of an increasing share of the ADAP market.
5/06 VL 1M+, CD4 22, 5% , pneumonia, thrush -- O2 support 2 months, 6/06 +Kaletra/Truvada
9/06 VL 3959 CD4 297 13.5% 12/06 VL <400 CD4 350 15.2% +Pravachol
2007 VL<400, 70, 50 CD4 408-729 16.0% -19.7%
2008 VL UD CD4 468 - 538 16.7% - 24.6% Osteoporosis 11/08 doubled Pravachol, +Calcium/D
02/09 VL 100 CD4 616 23.7% 03/09 VL 130 5/09 VL 100 CD4 540 28.4% +Actonel (osteoporosis) 7/09 VL 130
8/09  new regimen Isentress/Epzicom 9/09 VL UD CD4 621 32.7% 11/09 VL UD CD4 607 26.4% swap Isentress for Prezista/Norvir 12/09 (liver and muscle issues) VL 50
2010 VL UD CD4 573-680 26.1% - 30.9% 12/10 VL 20
2011 VL UD-20 CD4 568-673 24.7%-30.6%
2012 VL UD swap Prezista/Norvir for Reyataz drop statin CD4 768-828 26.7%-30.7%

Offline leatherman

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Re: ADAP Update 9/17/10 - Better News On A Bad Situation
« Reply #18 on: October 13, 2010, 02:43:22 PM »
that's a really good point there with #2 ;)
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

Offline Hellraiser

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Re: ADAP Update 9/17/10 - Better News On A Bad Situation
« Reply #19 on: October 14, 2010, 02:44:05 AM »
I wonder how many people don't test over fears that they might not be able to get treatment if their results are positive.

This was one of the rationalizations I used for not testing a good solid decade ago.  Long before I knew what Ryan White or ADAP were.  I figured if I had it there was nothing I could do about it, so what purpose would it serve to know.

Offline leatherman

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Re: ADAP Update 9/17/10 - Better News On A Bad Situation
« Reply #20 on: October 14, 2010, 09:05:07 AM »
This was one of the rationalizations I used for not testing a good solid decade ago.  ...  I figured if I had it there was nothing I could do about it, so what purpose would it serve to know.
that was my rationalization too, two decades ago; but there weren't any meds nor even a viral load test then. Getting a poz result around 1990 really was just a death sentence. I put off getting tested for years, and it was actually a combination of PSAs I saw on TV and my partner having a "mystery illness" for a month that prompted me to go get tested for the heck of it. We both went to a ID doctor after that and were told it was teh aids. As was common back then too, eighteen months later from that aids diagnosis, my partner died.

What a different world we're living now, in which the test-n-treat strategy is even a viable option ;)
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

Offline leatherman

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another watch list is out and it's getting bigger again
« Reply #21 on: October 18, 2010, 12:45:12 PM »
Another 2 weeks have rolled around and another ADAP watch list is out. Although Iowa was able to help a few people, on the whole the numbers have jumped back up again. While the previous report only added 6 individuals to the lists, this reports adds another 318 people onto the lists. :(

ADAPs with Waiting Lists (3,765 individuals in 8 states*, as of October 14, 2010)
(changes from September 30, 2010 noted in parens (+318))

Florida: 2,110 individuals (+176)
Georgia: 617 individuals (+31)
Iowa: 13 individuals ( -4)
Louisiana: 502 individuals** (+32)
Montana: 8 individuals (+8)
North Carolina:  52 individuals (+16)
Ohio: 269 individuals (+25)
South Carolina: 194 individuals (+36)

ADAP Oct 15th Watch List

*As a result of ADAP emergency funding, Hawaii, Idaho, Kentucky, South Dakota, and Utah eliminated their waiting list
**Louisiana has a capped enrollment on their program.  This number is a representation of their current unmet need.
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

Offline J.R.E.

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  • Joined Dec-2003 Living positive, since 1985.
Re: ADAP Update 9/17/10 - Better News On A Bad Situation
« Reply #22 on: November 06, 2010, 05:24:23 AM »
Florida to drop 350 HIV/AIDs patients:

http://www.medicalnewstoday.com/articles/206692.php


Florida To Drop 350 Uninsured HIV/AIDS Patients From Drug Program; Ore. & Wash. Set Up Enrollment Periods For Children's Insurance; Calif. Medicaid
Main Category: Medicare / Medicaid / SCHIP
Also Included In: Health Insurance / Medical Insurance;  HIV / AIDS
Article Date: 04 Nov 2010 - 4:00 PDT



The Miami Herald/The Sun Sentinel: "The Florida Department of Health plans to drop about 350 uninsured HIV/AIDS patients from a federally funded program that pays for all or most of their drugs, because of a budget crisis. An additional 2,000 or more HIV-positive patients are at risk of being bumped from the program unless the state can close a $16 million shortfall in the next few months, officials said Tuesday. ... In June, the shortfall forced the Health Department to put more than 2,300 patients on a waiting list for the AIDS Drug Assistance Program. About 1,100 live in South Florida. The program also halted coverage for many drugs that treat HIV-related complications" (Lamendola, 11/3).


« Last Edit: November 06, 2010, 05:26:06 AM by J.R.E. »
Current Meds ; Viramune, Epzicom, 40mg of simvastatin, 12.5mg of Hydrochlorothiazide.
Metoprolol tartrate 25mg



http://forums.poz.com/index.php?topic=40802.0

http://forums.poz.com/index.php?topic=45159.0

http://forums.poz.com/index.php?topic=39722.msg495621;topicseen#msg495621

http://forums.poz.com/index.php?topic=46806.0

http://forums.poz.com/index.php?topic=39414.msg491701#msg491701


 In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started my first  HAART regimen  on October 24th,03.

 As of DEC 9th, 2013,  t-cells are at 437 Viral load  <40 .

 Current % is at 16% (L)

  
 62 years young.

Offline leatherman

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ADAP Update 10/510
« Reply #23 on: November 07, 2010, 12:35:35 AM »
ADAPs with Waiting Lists (4,078 individuals in 9 states*, as of November 4, 2010)
(changes from September 30, 2010 noted in parens (+313))

Florida: 2,374 individuals (+264)
Georgia: 674 individuals (+57)
Iowa: 37 individuals (+24)
Louisiana: 378 individuals** (-124)
Montana: 10 individuals (+2)
North Carolina:  60 individuals (+8)
Ohio: 318 individuals (+49)
Rhode Island: 6 individuals (+6)
South Carolina: 221 individuals (+27)

ADAP Nov 5th Watch List
**Louisiana has a capped enrollment on their program.  This number is a representation of their current unmet need.

here's a Poz article about the upcoming Florida ADAP patient drop
http://www.poz.com/articles/Florida_Drops_Patients_1_19326.shtml
Quote
The 350 people will be dropped because they have incomes three times the federal poverty level (federal poverty level is $10,830 for a single person and $14,570 for a family of two). The health department said cutting eligibility is the least-painful money-saving step available.
I bet it doesn't seem very painless of a cost-cutting measure if you're one of the 350 who will no longer be receiving HIV meds. I wish them all the best luck on trying to get insurance coverage, filling out the paperwork, finding the "extra" $2000 a month to pay for meds and/or hopefully getting onto a pharmaceutical company program to receive meds before they go too long without meds to build up resistance or begin to get sick.

Quote
The Sun Sentinel reports. An additional 2,000 people may be bumped if the department canít close a $16 million shortfall.
Sadly, in some upcoming NASTAD update, those 350 people in Florida might just have another 2000 friends in the same predicament.
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

Offline ElZorro

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Re: ADAP Update 9/17/10 - Better News On A Bad Situation
« Reply #24 on: November 07, 2010, 12:39:23 AM »
disgraceful  :'(

Offline thunter34

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  • His name is Carl.
Re: ADAP Update 9/17/10 - Better News On A Bad Situation
« Reply #25 on: November 07, 2010, 01:00:18 AM »
I came close to finding myself on the list.  I was due to renew paperwork (yet AGAIN), but had a schedule conflict with work...so I blew it off for a bit since I still had pills and this has never been a big issue.  After I got it done, I discovered that by the beginning of the next month (which was just a few days away) missing a renewal date would get one automatically booted off the books and onto the dreaded list.

There was no other notice sent to me about this.  I just happened to see it posted all over the building once I came in to recertify.

It was a bit of a chiller for me.  I had a meds lapse last year between regimens, and in just the short span of about two months my numbers plunged from the 500 range down well into the 200's.  I had a personal sense of the fragility of my healthcare situation - which I had allowed to be a little too easy to forget while trucking along in my "undetectable with good numbers" bubble of existance.

And in all honesty, the first person who actually came to mind was Tim.

Moffie always said there would be days like these.
AIDS isn't for sissies.

Offline leatherman

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Re: ADAP Update 9/17/10 - Better News On A Bad Situation
« Reply #26 on: November 07, 2010, 01:29:26 AM »
It was a bit of a chiller for me.  I had a meds lapse last year between regimens, and in just the short span of about two months my numbers plunged from the 500 range down well into the 200's.  I had a personal sense of the fragility of my healthcare situation
I went off my regimens a couple times in the early-mid 90s and all three times within 9 months my numbers were so bad and I was so sick, I ended up back in a hospital with OIs. I'm very glad to hear that you missed having a similar situation.

For me, thinking back to my situations, it's why I'm concerned about ADAP. Although I don't use it anymore, I can only imagine if someone should fall out of the system for a while (all it takes is one mistake and then how long to correct it? One month, two, three (like it did for me to transfer from OH medicaid to SC medicaid), or longer? That could be someone's life.

So while I'm healthy, I keep banging the drum about the problem, especially here to my local legislators in SC, trying to keep everyone in treatment - and alive.
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

Granny60

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Re: ADAP Update 9/17/10 - Better News On A Bad Situation
« Reply #27 on: November 07, 2010, 11:28:37 AM »
I just read something about how KY got something like $1.7 Million for ADAP.  I was very surprised by this that our small state got that kind of money.  I believe the only other states that got that kind of high dollar amount were CA, NC, and FL, no??  The other states got like $200K, 300k, etc.  $1.7 here hasn't cleared our waiting list?  Or, has it not all been allocated?  I'm trying to remember where I read it.  Probably right here on the poz homepage.

Did we get so much due to our large waiting list?  I know Sen McConnell surely didn't have anything to do with that.

We see McConnell on the news all the time being across the river.   I can't understand how that despicable man keeps getting elected.  He has a nastier attitude than Newt Gingrich had and that idiot Gingrich couldn't say anything nice about anything..

Offline leatherman

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ADAP Update 11/12/2010
« Reply #28 on: November 17, 2010, 12:50:12 AM »
ADAPs with Waiting Lists (3,811 individuals in 9 states, as of November 11, 2010)
(changes from November 4, 2010 noted in parens (-267))

Florida: 2,043 individuals (-331)
Georgia: 672 individuals (-2)
Iowa: 39 individuals  (-2)
Louisiana: 404 individuals** (+26)
Montana: 10 individuals (0)
North Carolina:  66 individuals
Ohio: 328 individuals  (+10)
Rhode Island: 10 individuals (+4)
South Carolina: 239 individuals (+18)

ADAP Nov 11th Watch List
**Louisiana has a capped enrollment on their program.  This number is a representation of their current unmet need.

Obviously there's some good news that quite a few states have fewer people waiting for meds now. I haven't heard why FL dropped so many and will have to check on those.

I joined the SC HIV/AIDS Task Force today and attended the Nov meeting with the exe director at my ASO. I heard a lot of bad news too. Because of the way funding has gone, by the time this fiscal year (FY2011) ends (Mar 15, 2012 I believe), they are projecting 900+ on the SC wait list based on the current monthly average. With no supplemental funding by the end of FY2012 there could be 2000+ on the list. THE SC ADAP program will have a deficit of $10mill by the end of FY2011. Compounding the bad news, the SC Medicaid program will be $28mill in arrears by Feb 2011.

At this point healthcare is 25% of the gross state product and 11% employment is in the healthcare sector. That means the silver lining is that medical care in SC doesn't have to just be viewed as an expense sector; but is also an economic sector.

There was good news though from the CEO (Ken Trogdon) from Wellvista (which is headquartered in the Columbia SC), who spoke at the meeting. By Jan, all the major pharmaceutical companies will have joined their program to dispense free HIV meds to those who meet their state ADAP waiting list requirements. So that's good news, that while people are on the waiting list, they can obtain more than just Crixivan :D, for 12 months. (Gilead just joined the program and Atripla will be available by 12/1/10)

But there is the rub. This program with the assistance of the Heinz Family Philanthropies is not a guaranteed program. It was initially approved as a stopgap measure for 1 yr. It has now been extended another year through 2011 - but there is no guarantee of any further extensions.

So while this greatly helps with the ADAP waiting list problem throughout the states, it is not a permanent solution or even much of a semi-permanent fix either; but it will keep people in America from dying without meds.

*edited for incorrect math
Ohio had +10 not -124
« Last Edit: November 18, 2010, 03:42:47 PM by leatherman »
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

Offline wolfter

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Re: ADAP Update 9/17/10 - Better News On A Bad Situation
« Reply #29 on: November 18, 2010, 02:59:43 PM »
Ohio went from 318 to 328, so I'm not sure why it indicates a huge reduction either?
Judging someone does not define them, it defines you. 

True peace is not merely the absence of war, it is the presence of justice.

Offline leatherman

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Re: ADAP Update 9/17/10 - Better News On A Bad Situation
« Reply #30 on: November 18, 2010, 03:41:16 PM »
Ohio went from 318 to 328, so I'm not sure why it indicates a huge reduction either?
Ohio: 328 individuals (-124)
oops. my bad copy-paste-and-calculating. I musta copied the wrong numbers at some point. I do all those change numbers when the reports come out so we can more easily see the differences.
but you are correct!  ;) and thanks for catching that!  ;D
instead of my incorrect (-124) Ohio actually had a (+10).
So Ohio didn't have a good change at all, but their waiting list continued to grow.
« Last Edit: November 18, 2010, 03:43:40 PM by leatherman »
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

Offline smiteler

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Re: ADAP Update 9/17/10 - Better News On A Bad Situation
« Reply #31 on: November 20, 2010, 02:51:28 PM »
disgraceful  :'(
and depressing  >:(
i hope someday this country can pull its
head out of its ass and get its priorities straight
but somehow i doubt i will ever see it  :-\

Offline Lucky2behere

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  • Kick'n a bugs butt
Re: ADAP Update 9/17/10 - Better News On A Bad Situation
« Reply #32 on: November 20, 2010, 09:00:35 PM »
I was just put on The Ryan White program in April and I'm supposed to be elligible until April 14th 2011. I had a 2 month waiting period to start meds but wondor if I will actually start at the end of November. I am not a perfect person and not sure what is meant by Ps and Qs? What are the requirements for the Ryan White Program and how can I get kicked off? I was approved for it back in a April because of my salary from last year. it was a bad year for income. This year really hasn't been much better. It's pretty sad that Florida is doing this to people on their Ryan White program. 

And why is California's and North Carolina's allotment of funding from ADAP almost the same?

And since there is a waiting list and I am on it, I guess I should take the list that Assurbanipal posted to the ID doc with me on November 30th and get the doc to check it if I am still on the waiting list?  :( 

This sucks. I was looking forward to feeling better. My brain seems to get worse every day.  :-\  I hope my concerns are unwarranted.
March 2010 tested HIV Pos
probably infected 2.5 years
Sept.  2010 CD4 520 %24 vl 18,000
Nov.   2010 CD4 560    ?   vl  1,400
Dec. 5 2010 Started Truvada Isentress
Jan.  5 2011 CD4 380   ?    vl      63

Offline leatherman

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Nov 18th update
« Reply #33 on: November 20, 2010, 09:21:17 PM »
ADAPs with Waiting Lists (4,109 individuals in 9 states*, as of November 18, 2010)
(changes from November 11, 2010 noted in parens (+267))

Florida: 2,246 individuals  (+203)
Georgia: 751 individuals  (+79)
Iowa: 0 individuals  (-39)
Louisiana: 435 individuals** (+31)
Montana: 13 individuals  (+3)
North Carolina: 66 individuals (0)
Ohio: 338 individuals  (+10)
Rhode Island: 12 individuals  (+2)
South Carolina: 248 individuals  (+9)
Virginia: 0 individuals (program capped on November 15, 2010)

ADAP Nov 18th Watch List
**Louisiana has a capped enrollment on their program.  This number is a representation of their current unmet need.

Though no one has been officially added yet, Virginia has capped ADAP enrollment as of 11/15, and so has been "welcomed" to the ADAP Watch List this month.


At the recent meeting of the SC HIV/AIDS Task Force that I attended, we were surpised to find that only a handful of of the 248 SC people on the ADAP waiting list were utilizing the services of Wellvista until ADAP gets more funding. It seems many case managers and patients do not know of this help. If you or anyone that you know of is on the ADAP waiting list in the states being serviced, please pass along this vital information - free HIV medications are available to anyone who is on a state ADAP waiting list.

http://www.welvista.org/
Welvista is licensed in the following states and ready to serve patients that are on waiting lists for HIV medications: Delaware, Florida, Hawaii, Iowa, Kentucky, Montana, New Jersey, North Carolina, New Jersey, Ohio, South Carolina, South Dakota, Texas, Utah, Wyoming

Welvista is in the process of applying for licenses in the following states and will serve additional patients on state waiting lists for HIV medications: Arizona, Arkansas, DC, Illinois, Louisiana, Mississippi, Tennessee
http://www.wellvista.org/adap_states.php
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

Offline leatherman

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more meds coming to the wellvista program over the next 2 months
« Reply #34 on: November 20, 2010, 09:58:33 PM »
And since there is a waiting list and I am on it, I guess I should take the list that Assurbanipal posted to the ID doc with me on November 30th and get the doc to check it if I am still on the waiting list?  :( 
That drug list is going to be updated the first part of Dec and again the first part of Jan, bringing nearly every HIV med onto the Wellvista program, so if your meds are not available right now, they soon will be (atripla will be offered starting in Dec). You will need to fill out the prescription form (available from http://www.wellvista.org/adap_how.php), and have it signed by the State ADAP Coordinator. Your doctor is only concerned with your healthcare and writing your prescriptions, all ADAP/Ryan White matters (ie obtaining the meds) must be handled through a Ryan White/ADAP case manager.

By minding your Ps and Qs, I meant that if you are on the ADAP program and want to stay on it, you need to always provide the appropriate information on time to avoid being taken off the list. If you do not keep your information up to date when required, you could be taken off the list, have to re-apply and end up losing your place and being put last on the list.

If you applied this past April and have not used ADAP yet, you really should double check to make sure you're still in the program. With 2,246 people who need meds and are still waiting for meds with their name on the list, it could be possible that someone else with more immediate needs was given your place. It's hard to say what would happen in a state with such a drastic situation. I would counsel you to check into this matter the first of the week, so that if your position has been filled, you can still obtain meds through Wellvista, if you and your doctor decide it's time for you to start meds
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

Offline leatherman

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ADAP Update 12/3/10
« Reply #35 on: December 03, 2010, 10:32:19 AM »
Since the end of ADAP FY2010 isn't until March 31, 2011, just because we're coming up on the end of the year doesn't mean we're going to be seeing the ADAP waiting lists go away. They'll be continuing to grow for a long time yet.  :'(

ADAPs with Waiting Lists
(4,369 individuals in 9 states*, as of December 2, 2010)
(changes from November 18, 2010 noted in parens (+260))

Florida: 2,311 individuals  (+65)
Georgia: 828 individuals  (+77)
Louisiana: 477 individuals**  (+42)
Montana: 14 individuals  (+1)
North Carolina: 78 individuals  (+12)
Ohio: 363 individuals  (+25)
Rhode Island: 16 individuals  (+4)
South Carolina: 269 individuals  (+21)
Virginia: 13 individuals  (+13)

ADAP Dec 3rd Watch List
**Louisiana has a capped enrollment on their program.  This number is a representation of their current unmet need.
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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