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Author Topic: ADAP Waiting List  (Read 2259 times)

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Offline SANJUANDUDE

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ADAP Waiting List
« on: May 20, 2012, 06:35:19 PM »
This may sound like an absurd question, but here goes it anyway.  Since I am in the process of relocating, but still am not quite sure where.   Since I rely solely on ADAP and Ryan White for my HIV and other medications; is it foolhardy to move to a state which has an ADAP waiting list...???  For example, I have been thinking of moving to Florida (again).  Is that taking an awful chance for medications or will they get me on a PAP program?
10/2011-CD-4-598-Undetectable
01/2012-CD-4-758-Undetectable
04/2012-CD$-780-70 Viral Load
08-2012-CD4-846--20 viral load
02/2013-CD$ 865----20 Undetectable Viral Load
08/2013- CD4-898----<20 undetectable viral load

Offline leatherman

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Re: ADAP Waiting List
« Reply #1 on: May 20, 2012, 07:01:41 PM »
is it foolhardy to move to a state which has an ADAP waiting list...???
Is that taking an awful chance for medications or will they get me on a PAP program?
as I told you at the first of the month in a previous thread, you would be incredibly foolish and stupid to move to Florida. you would be put onto the ADAP waiting list and be without medications unless some ASO could step in and save your ass or if you ponied up the $$$ for your own medications. None of the information told to you in that thread, or in your other thread about moving to a rural area, has changed in the last two weeks. ;)

if you're relying solely on the government to supply you with meds, you really have to live in the correct area to get proper care and have to conform to all the regulations to stay certified. If you are planning on moving to a new area you HAVE to take these things into consideration or run the risk of adding to the count of people who have already died with AIDS while on an ADAP waiting list.

if you currently are on ADAP, yes, you would no longer have ADAP help...

anyone that has a serious medical condition requiring extensive care or specialized medication and/or receiving assistance should always check during their planning for relocation. IF you cannot get service in your "new area" (ie ADAP waiting list, no HIV doctor for hundreds of miles, no ASO, no state medicaid, etc) then cleary you would be foolish to even move there.

So yes, in a way having HIV does make a very big factor on where you live. Many people have to move, or can't move elsewhere, to get or maintain proper medical care. Anyone using ADAP and moving to a state with a waiting list is incredibly foolish and stupid because they would run a huge risk of not having meds and dying from AIDS
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 SANJUANDUDE

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Re: ADAP Waiting List
« Reply #2 on: May 20, 2012, 07:10:49 PM »
I have just been hoping that these waiting lists would "clear up" from government funding and/or state funding.  It rots because the two states that I was considering moving two BOTH appear to have waiting lists; Florida or Lousiana.  Maybe time to just move back home to New Mexico.
10/2011-CD-4-598-Undetectable
01/2012-CD-4-758-Undetectable
04/2012-CD$-780-70 Viral Load
08-2012-CD4-846--20 viral load
02/2013-CD$ 865----20 Undetectable Viral Load
08/2013- CD4-898----<20 undetectable viral load

Offline SANJUANDUDE

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Re: ADAP Waiting List
« Reply #3 on: May 20, 2012, 07:20:21 PM »
Quote
author=leath  or if you ponied up the $$$


 ;D  Do you know what Atripla is going for these days?

Sorry, but no I didn't think that waiting lists have cleared in two weeks or so, but they should have, and here is why.  Instead of sending God knows how much to Africa for HIV care (I understand it's well into the millions, maybe more), take care of your own at home.  And not one person in this forum can argue that point with me. :P
« Last Edit: May 20, 2012, 07:34:38 PM by SANJUANDUDE »
10/2011-CD-4-598-Undetectable
01/2012-CD-4-758-Undetectable
04/2012-CD$-780-70 Viral Load
08-2012-CD4-846--20 viral load
02/2013-CD$ 865----20 Undetectable Viral Load
08/2013- CD4-898----<20 undetectable viral load

Offline leatherman

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Re: ADAP Waiting List
« Reply #4 on: May 20, 2012, 08:27:04 PM »
I have just been hoping that these waiting lists would "clear up" from government funding and/or state funding.
both of these states, as many that are on the list and ones that have been on the list until recently, have had ADAP waiting list for YEARS.

SC's list was cleared, restarted in 2006 and didn't clear again until last month - that means we held an ADAP waiting list for almost 6 yrs! FL and LA have had their lists for nearly as long. Waiting until the lists clear is a fool's errand.

Because of the ever-expanding HIV epidemic in the South coupled with short-sighted miserly Republican-controlled budgets in most of the states (which is the real problem, not so much the dollars going to PEPFAR), you're better off moving anywhere but the South. As the cases of HIV continue to grow, along with the need for assistance and the lack of proper funding for the most part, the situation will probably get worse before it gets better.
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 SANJUANDUDE

  • Member
  • Posts: 125
Re: ADAP Waiting List
« Reply #5 on: May 21, 2012, 09:42:41 AM »
Quote
Because of the ever-expanding HIV epidemic in the South coupled with short-sighted miserly Republican-controlled budgets in most of the states (which is the real problem, not so much the dollars going to PEPFAR), you're better off moving anywhere but the South. As the cases of HIV continue to grow, along with the need for assistance and the lack of proper funding for the most part, the situation will probably get worse before it gets better.

Now Leatherman, I may be mistakened, but isn't the vast majority of funding for HIV/ADAP/Ryan White designated for each state or territory from the federal government.  There area a few, very few, states which give some state funding to the program, but most of it is federal money.  My point in saying that is, this money is coming from the federal government for specifically one purpose!!! ;)  So I guess it is time to pull some of Kenya's HIV money and drop it into Florida, Alabama, Georgia and whoever else's funding.
10/2011-CD-4-598-Undetectable
01/2012-CD-4-758-Undetectable
04/2012-CD$-780-70 Viral Load
08-2012-CD4-846--20 viral load
02/2013-CD$ 865----20 Undetectable Viral Load
08/2013- CD4-898----<20 undetectable viral load

Offline Miss Philicia

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  • celebrity poster, faker & poser
Re: ADAP Waiting List
« Reply #6 on: May 21, 2012, 12:23:06 PM »
Now Leatherman, I may be mistakened, but isn't the vast majority of funding for HIV/ADAP/Ryan White designated for each state or territory from the federal government.  There area a few, very few, states which give some state funding to the program, but most of it is federal money.  My point in saying that is, this money is coming from the federal government for specifically one purpose!!! ;)  So I guess it is time to pull some of Kenya's HIV money and drop it into Florida, Alabama, Georgia and whoever else's funding.

It's supposed to be a combination of federal and state funding, but as you know we have a federal system of government so like many programs the federal government sets things up that gives states much local decision making, and the state funding portion isn't mandating but expected to be a supplement. This is how Ryan White was able to gain broad bipartisan support from the 90's through about 2003 in continual reauthorizations and increased funding.

I suppose perhaps you don't follow politics much, but the Republican part has become wildly more right wing in terms of party control in the past decade, both nationally and on the local/state level. Look at the states that have a waiting list and those that don't -- some states are continuing to supplement adequately their share while others are not. It's simple to see.

But yes, at the same time the federal government should not "flat line" their re-authorization funding due to a combination of increased HIV patient populations (due to new infections and patients no longer dying in previous amounts) as well more people with HIV finding themselves out of work due to the recession.

That said, it doesn't help in the situation like Florida that a continual stream of already diagnosed poz queens from other states want to move there to enjoy the lovely palm trees. That's been the problem in that state (among a greatly increased amount of new of local HIV infections, and being one of the highest states with foreclosure since the 2008 financial crisis).
"I’ve slept with enough men to know that I’m not gay"

Offline mecch

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  • red pill? or blue pill?
Re: ADAP Waiting List
« Reply #7 on: May 21, 2012, 01:05:48 PM »
I have just been hoping that these waiting lists would "clear up" from government funding and/or state funding. 

Your "hope", plus 2 dollars, will get you a ride on the NYC subway. 

(That's a saying my New York friends use when someone has farfetched hopes.)

(Oh, and if you got 2 bucks for the subway, you can ride around and get the services you need, cause there is no ADAP waiting list.)
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline leatherman

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  • Google and HIV meds are Your Friends
Re: ADAP Waiting List
« Reply #8 on: May 21, 2012, 06:04:03 PM »
There area a few, very few, states which give some state funding to the program, but most of it is federal money.
I will have to see if I can find the exact formula but ADAP is federally funded along with a percentage of matching state funds. If state underfunds or defunds their ADAP program the federal amount can be reduced to a basic minimum grant. All states receiving federal ADAP monies, including those with waiting lists, also currently fund the program so that they remain eligible for federal funding in the next fiscal year.

The Republican-led SC legislature threatened to defund ADAP last fiscal year but their effort was vetoed by the Republican governor, forcing the massively Republican majority Senate to put basic funds towards the program. After reducing the state ADAP funding over the last 5 years in row, this fiscal yr budget contained a 4-yr recurring $4.6 million amount, along with an extra $1million amount for fiscal yr 2012, to actually ensure continued reasonable federal funding rather than the basic minimum.
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 SANJUANDUDE

  • Member
  • Posts: 125
Re: ADAP Waiting List
« Reply #9 on: June 01, 2012, 10:40:41 AM »
both of these states, as many that are on the list and ones that have been on the list until recently, have had ADAP waiting list for YEARS.

SC's list was cleared, restarted in 2006 and didn't clear again until last month - that means we held an ADAP waiting list for almost 6 yrs! FL and LA have had their lists for nearly as long. Waiting until the lists clear is a fool's errand.

Not to be argumentative, but Florida has not had a waiting list for anywhere even close to six years.  Florida began a their waiting list in either June or July of 2010.  I was living in Fort Pierce when that began and at that time, I beat being on the waiting list.  However, I had friends who were not so lucky. 

10/2011-CD-4-598-Undetectable
01/2012-CD-4-758-Undetectable
04/2012-CD$-780-70 Viral Load
08-2012-CD4-846--20 viral load
02/2013-CD$ 865----20 Undetectable Viral Load
08/2013- CD4-898----<20 undetectable viral load

Offline leatherman

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  • Google and HIV meds are Your Friends
Re: ADAP Waiting List
« Reply #10 on: June 01, 2012, 02:23:39 PM »
Not to be argumentative, but Florida has not had a waiting list for anywhere even close to six years.
your right! :) sorry about that.  :-[

I've just been typing out this current waiting list info for 2+ yrs and it seems like Florida has always on the list - along with the same old bunch - and has usually had some of the highest numbers. they've been the same states on the list so long, I can rattle them off in my sleep ::) . :o

SC didn't always have anyone on our waiting list all those years but they did keep it open just in case. And while Florida's ADAP totally went broke last year, SC's ADAP has had 4 people die while waiting (3 from the 2005-06 list and 1 from this current 2010-12 list). It's a horrible mess in either state :'( (and several others, like AL and LA)  and well worth avoiding.

Regardless of when a list started and how many people are on it, moving to a state with an ADAP waiting list, when a person is using ADAP in their current state to get meds, is not a good option at all.
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 whatstheodds

  • Member
  • Posts: 18
Re: ADAP Waiting List
« Reply #11 on: June 05, 2012, 12:57:00 AM »
Wow I had no idea......
I was infected in Nov 2010 and on Compera in May 2011 and as of April 2012 I was told I was "dropped" into ADAP (I thought that meant I was denied not that I was put into the program) prior to that I got to see a dr every 3 months with labs and got meds by Ryan White funding every month (complera) I knew nothing of the process until coming on here.

Offline mecch

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  • red pill? or blue pill?
Re: ADAP Waiting List
« Reply #12 on: June 06, 2012, 07:51:44 AM »
And while Florida's ADAP totally went broke last year, SC's ADAP has had 4 people die while waiting (3 from the 2005-06 list and 1 from this current 2010-12 list). It's a horrible mess in either state :'( (and several others, like AL and LA)  and well worth avoiding.

Please excuse this morbid question, I ask out of ignorance.  So what happens in those instances of death.  A person is on a waiting list so that means the doctors know and have perscribed HAART and nobody, no institution, no fund can pay for it.  So these people got AIDS and probably had months or years of infections.  Do they go to the hospital several times during the dying period?  And each visit, the hospital has to do something to treat the illnesses, and yet nobody can find a way to get a supply of the HAART.  Besides how hideous and final this is for the dying person, this must be absolutely wrenching for all parties, both people who know the sick person, and all the health care staff who are helpless to treat the HIV?  And just as aside, Im checking, doesnt this cost the state more, paying for all those treatments during the dying period, rather than the monthly cost of the HAART?  Who eats the hospital bills?
« Last Edit: June 06, 2012, 07:55:31 AM by mecch »
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline leatherman

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Re: ADAP Waiting List
« Reply #13 on: June 06, 2012, 09:05:52 AM »
Please excuse this morbid question, I ask out of ignorance.  So what happens in those instances of death.  A person is on a waiting list so that means the doctors know and have perscribed HAART and nobody, no institution, no fund can pay for it.  So these people got AIDS and probably had months or years of infections.  Do they go to the hospital several times during the dying period?
I don't know about all the cases but I know that most of the cases were people recently diagnosed - and diagnosed at late-stage AIDS.

Often treatment can be very confused when one presents at a hospital as "self pay". Unlike one of our members here who was treated for a short time in the hospital and then released w/o meds and developed resistance, one of these people wasn't started on meds because access/funding was uncertain. Another was started on meds, and an ASO took up funding afterward while the patient went onto the waiting list; however that person was too sick and didn't respond to the meds fast enough before AIDS/PCP caused their death.

there isn't a case of someone having AIDS for months and years while waiting on ADAP and dying. Thankfully ASOs have been able to arrange funding for the people in their areas on the waiting list. However in dealing with this disease, we do know that timely treatment can often save even the worst cases. Postponing treatment for several weeks while dickering about access to medications sometimes is the crucial time period dwindling away that could have made the difference - not to mention the extra stress and strain on the dying person (and their psyche) knowing that in such a time of need no one is willing or able to step in immediately with treatment to help them.

when I was diagnosed in the hospital with AIDS and PCP in 1996, I was not treated for HIV in the hospital. I had already gone off the AZT after 9 months because of it deleterious effects and that was how I ended up in the hospital. I had to wait one and half months after my release for the state to re-approve Ryan White funds and to finally approve medicaid coverage which in turn allowed me to get medications. By the time I was out of the hospital and received medicaid, early HAART was finally available. Needless to say through much of that time I believed that my death was assured and I'm sure that added depression of not being able to get medications wasn't helping the problem. This happened in 1996 in Ohio when HIV deaths were still common and stigma high, so it's not hard to envision something similar in 2012 in poverty-ridden SC surrounded by a continuing HIV stigma.

Quote
And just as aside, Im checking, doesnt this cost the state more, paying for all those treatments during the dying period, rather than the monthly cost of the HAART?  Who eats the hospital bills?
The hospitals and the state absorb most of the costs. A hospital can retroactively apply for medicaid and/or medicare on behalf of a deceased patient and be reimbursed by the feds and/or the state for most of their costs. Attending physicians at the hospital and others (like radiologists, etc) however are not reimbursed.

In March 2011, the SC state HIV Task Force (http://schacctf.org) hired Harvard Law to produce a report for us detailing how much it cost to treat a patient vs. the costs of hospitalization and eventual death of an untreated person. The basic findings were that annual costs per person for treatment of HIV infection was $11,000 while the annual costs per person of untreated HIV infection was $86,485. (these are just the costs to the state. these figures do not include the other doctors I mentioned who have to absorb their costs on their own which they in turn pass on to the general public through higher insurance claims and higher costs)

Around that time when we spoke with legislators as our ADAP waiting list was at 527 people, we were able to show that funding ADAP treatment at a cost of $5,797,000 could offset $45,577,595 in costs to the state if ADAP was not funded and those people became sick needing other medical treatment and hospitalization. Using that data in several conversations, I know of two Republican house members and 3 Republican Senators who changed their votes towards funding ADAP. Getting that data out there over this past year, the task force's efforts paid off in this years budget automatically including a recurring $4 million for 4 years for ADAP and a one time $1 million for this year.

of course that's not enough funding to cover the ever increasing amount of people applying for ADAP every month (because of the economic downturn and from an increasingly high HIV infection rate); but it has cleared the SC waiting list and, after several years worth of increasing numbers, has kept the list at zero for a little over 2 months.
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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