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Author Topic: Damn it, son! Die and be quick about it!  (Read 1705 times)

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Offline thunter34

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Damn it, son! Die and be quick about it!
« on: June 17, 2014, 09:14:58 AM »
The following is a possibly expletive laced rant against the rusty, almost immoveable wheel of the GA ADAP/RW system.

I just got off the phone with the IDP people  demanding an appointment to get my own meds (through the same place as Zach) because I have played hell trying to get someone to either answer the phone or call me back, and then actually try to make some attempt at being reasonably available for an appointment.

I finally got a return phone call, only to hear that "sorry, but I am unavailable until about 10 days from now" refrain that I've already heard before.  I had to tell her that I did not know my work schedule that far in advance, but the schedule was probably already being drafted so it's too late to ask off for anything in that period.  She then said I could try to call back when I know and we could  see from there.  But I already know how that works:  I would call then only to be told that she was unavailable during any of those times and to try again for further in the future.

I finally had to insist that someone else on that team see me THIS week.  I have been bounced like a ball for weeks down there this go around.

I am someone who has been pretty damn consistent with appointments, medications and the endless GA paperwork renewals, and yet here I sit with my last dose of pills - AND already out of my psyche meds, so I am already starting to do that roller coaster ride as well.  I have also been a pretty vocal supporter of this establishment - and still would like to be.  It really isn't them in and of themselves; it's the edicts that get handed down from on high through our state government.  It is maddening to me that I have to go through this over and over every 6 months.  Yes, I am still piss poor.  Yes, I am still as AIDSy as I ever was - if I wasn't, you'd probably have seen me on the news, ya know?  It seems like such an overkill, such needless redundancy...and it seems geared to do exactly what it is doing:  frustrate, agitate and hopefully push people through the cracks into oblivion.

I wonder what kind of tattoo best represents people in my situation?
AIDS isn't for sissies.

Offline zach

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Re: Damn it, son! Die and be quick about it!
« Reply #1 on: June 17, 2014, 11:37:49 AM »
((((tim))))

Offline Joe K

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Re: Damn it, son! Die and be quick about it!
« Reply #2 on: June 17, 2014, 01:05:20 PM »
Tim,

I am so sorry you are having such a hard time getting the services you need.  When I lived in Florida it was the same crap.  The local state run pharmacy was always being undermined by our wonderful state government.  What I finally did was to contact members on the HIV planning council to get some help.  Fortunately, we had a liaison from the state level, who could move things along.  Sadly, that only worked until the legislature found a new way to make pozzies life a living hell.

I wish I had an answer for you.

When you posted in the Bio-Hazard thread, you asked what crusade was worth joining.  One against this type of manipulation that occurs in many states, denying life saving services to the HIV community.

Joe

Offline zach

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Re: Damn it, son! Die and be quick about it!
« Reply #3 on: June 17, 2014, 01:37:14 PM »
 ;) see you ranted in my rant

you're renewing ADAP? dealing with ms shipp right  >:(

need borrow bat?

i know there are other members in atlanta. anyone else treated at the Ponce Clinic? its a great place, but piss poorly ran. maybe not their fault, they may be dealing with legislation shit, funding shit, whole bunch of shit. but i think tim would agree, at the medical care level the people are great

it really feels like our statehouse is coming with pitchforks and ropes now though. screw the hoods, they don't bother hiding. tims thread name, it sums up the climate so perfectly around here.

screw it tim, lets runnoft together to some left leaning utopia of milk and honey and free medicinal weed and great hiv healthcare. we'll paint the house pink and rescue dogs


edited to add... do i read that you're almost out of meds? i got you man, FB me, meet in atlanta

i don't know what the fuck is going on down at the grady infectious disease clinic on ponce de leon, but two members on this board are getting static, so obviously more that don't post here. is there like a god damn shortage of truvada?
« Last Edit: June 17, 2014, 01:47:53 PM by zach »

Offline thunter34

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Re: Damn it, son! Die and be quick about it!
« Reply #4 on: June 17, 2014, 04:20:19 PM »
To Joe:  Yeah.  I just participated in a study that was aimed at identifying obstacles to care, and I laid it out very clearly that the biggest was bureaucracy.  I have a hard time wrapping my head around things like pondering whether it's time for a shinier, happier AIDS tattoo because that is so far out of my experience.  All I see are people trying to stay afloat and stay alive in a sea of red tape and red ink.  Usually I am an observer.  Sometimes, like now, I'm dog paddling myself.

To Zach:  Yes, it is getting increasingly poor in its operation.  You used to be able to call the main line and get transferred to who you needed.  Now you most often get a VM that says to leave a message...which in my experience is almost never returned.  I know firsthand that the lady on the receiving end of that call is a fine woman and a hard worker.  I also know that she has been shifted from doing that to also being responsible for signing people in in the lobby.  So clearly she can't do both at the same time.  Hence, the calls spin into the void.

And that is the main trouble all over.  Money and manpower are getting increasingly spread thin.  There are only two people who are there to handle ADAP - Shipp and Bonner.  I am seeing Shipp now per my demand because I have been unsuccessful getting an appointment with Bonner.  There are a few thousand people that these two people have to funnel through.  That is why getting a slot is so hard, and if you miss that shot it can be a long time getting another one.  I like Lacey Bonner.  She and I have a long standing good relationship.  I do not see this as a fault of hers - it is just indicative of the state of ADAP/RW - and for that matter, the state of healthcare all around in the good ol' USA.

I have Truvada.  I am out of the Prezista and Norvir components of the combo.  I am also slap out of Depakote, so wheeeeeeeee!  I have an appointment at 2PM Friday.  I do not know whether that will allow me access to meds then or not.  I am going down early in the day to try to get both RW and ADAP done.  I suspect I will still have issues because it apparently takes ADAP two full weeks to "go through". 

A little pink house sounds rather appealing right now.
AIDS isn't for sissies.

Offline Jody

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Re: Damn it, son! Die and be quick about it!
« Reply #5 on: June 17, 2014, 06:43:24 PM »
Dear Tim, and Zach...It is so heart breaking to hear of the constant stress you guys, and others in the south (and elsewhere) face.  This stress is so harmful to our health.  People with AIDS need their meds daily, a decent place to live and proper nutrition.  I wish I could help you in a more tangible way besides just keeping you in my thoughts.  I hope this latest crisis works out for you and you can remain in your hometowns that you otherwise love. 

Jody
"Wake up to find out that you are the eyes of the world".
 "Try to discover that you are the song that the morning brings."

Grateful Dead

Offline mitch777

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Re: Damn it, son! Die and be quick about it!
« Reply #6 on: June 17, 2014, 06:47:14 PM »
I feel the same way as Jody. It's shameful. But we all know the good old USA has the best medical care in the world, right?  >:(
31 years hiv+ (oct. 2013) with a curtsy.

Offline Joe K

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Re: Damn it, son! Die and be quick about it!
« Reply #7 on: June 17, 2014, 07:48:54 PM »
I feel the same way as Jody. It's shameful. But we all know the good old USA has the best medical care in the world, right?  >:(

To be fair, this issue has nothing to do with the health care delivery system in America, rather it has everything to do with legislatures constantly changing the rules for both ADAP and Ryan White eligibility.  The drugs and treatments are available, as long as someone can pay for them.  Republicans are experts at massaging the rules, to make it harder each year, to jump through the right hoops to get covered.

It's time for the federal government to dictate to the states, the rules of eligibility for both programs, so they are uniform in every state.  As long as legislatures can keep changing the rules, things like this will just continue to happen.  For some states, the goal of HIV services, is to deny as many as possible, so they can give tax breaks to those who hardly need them.

Joe

Offline zach

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Re: Damn it, son! Die and be quick about it!
« Reply #8 on: June 17, 2014, 08:03:10 PM »
agreed

governor nathan deal and his fat white men. he is evil incarnate, not just for the medicaid

i have no real hope, but we've got jason carter coming up,  grandson of ol jimmy hisself 

Offline leatherman

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Re: Damn it, son! Die and be quick about it!
« Reply #9 on: June 17, 2014, 08:05:43 PM »
just wondering, are these issues related to continuing ADAP coverage or beginning new ADAP coverage? Are you having these kinds of issues every month when trying to refill your meds?

I believe Zach's issue was with starting as a new ADAP client, so I was wondering if there are also issues with annual or bi-annual ADAP renewal
leatherman (aka mIkIE)


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

Offline Joe K

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Re: Damn it, son! Die and be quick about it!
« Reply #10 on: June 17, 2014, 08:42:09 PM »
I believe Zach's issue was with starting as a new ADAP client, so I was wondering if there are also issues with annual or bi-annual ADAP renewal

Tim is trying to renew and these games have been played for at least a decade, as I went through the same crap when I lived in Florida.  They tighten the rules, allocate less resources for client services and this is what you get.  It's not to say that you don't get hassled every month for drugs, but renewals are like walking on fire.

Joe

Offline initforlife

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Re: Damn it, son! Die and be quick about it!
« Reply #11 on: June 17, 2014, 08:49:02 PM »
  For some states, the goal of HIV services, is to deny as many as possible, so they can give tax breaks to those who hardly need them.

Joe
reading this scares the hell out of me
I should have known he was bi

Offline mecch

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Re: Damn it, son! Die and be quick about it!
« Reply #12 on: June 17, 2014, 09:24:17 PM »
Tommy gives a eulogy in The Normal Heart and says "They just don't like us very much."

They is the Establishment and us is gay people.  Gay people dying of an STD to be more precise. 

Combine that affront to normalcy the fact that being poor is a sin in the USA, a sign of character flaw, and increasingly being poor is illegal.  Thats the way too many people in power see it.  :-[

 

ďFrom each, according to his ability; to each, according to his needĒ 1875 K Marx

Offline zach

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Re: Damn it, son! Die and be quick about it!
« Reply #13 on: June 17, 2014, 11:31:09 PM »
i hear tims problems and joes fire walking, i see my future. tim, you got this baby, i'm sure in the end you'll navigate it. but the supreme hassle, who needs that shit?

i really believe its the politics. joe's post from 7:48PM sums it best

Offline thunter34

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Re: Damn it, son! Die and be quick about it!
« Reply #14 on: June 18, 2014, 12:33:34 AM »
Yes, indeed.  Joe has got it down.  This is exactly what is going on.  The problem is with renewals which have to happen every six months in GA.  You can walk in and take a number and wait for RW renewals.  You may be there are few hours, but you will get seen - and most times it is not that long.  For ADAP, however, you have to get an appointment - and there are only two people handling a few thousand clients. 

Just getting through on the phone to MAKE the appointment is a struggle these days, but I've fortunately gotten wise and landed the lady's direct phone line for a message rather than trying to get through the main line.  The next (and even bigger issue) is trying to negotiate a time because they usually don't have anything open for at least a week or two from the time you actually get someone on the line.  If you aren't able to commit to whatever slot they have (like if you are already scheduled to work or some such) then you have to just try again at a later time.  Lather, rinse. repeat.

And finally, if you've managed to get this far, then the fun stuff begins with the paperwork fire walk.  If you don't have everything in line exactly as needed at appointment time, the entire thing is a wash and you go back to square one.  One thing I was told I needed to bring in was a utility bill or a medical bill with my address on it - but they are the only medical place I go to and their bills don't count.  I also do not have utility bills in my name at this address.  I do have bank statements, but those apparently aren't good enough either.  So I have to get a notarized letter that states that I am at this address - even though I have bank mail and other mail that all goes here.  Oh...and I need the stubs from the last two pay periods at my job.  No other combination will do.  I once arrived with stubs for 3 months of pay, but was missing one from two weeks back and it was a no go.  And another fun fact:  when I applied for my current job, I stupidly listed my folks' address on the application.  Now my stubs have that address up top, and I have to get those changed before Friday because they don't match my license, my notarized letter, or any of the other mail I have.  Fun times.

I am glad that I thought to ask and double check today, though - because the requirements have changed just since the last time I renewed in the fall of last year.

Oh...and I was also told that, because these weeks have gone by while trying to get an appointment, I may now be listed as a "new" client.  All this for someone who has been steadily receiving care at this location for just shy of TEN YEARS with virtually no change in my information. 
AIDS isn't for sissies.

Online Jeff G

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Re: Damn it, son! Die and be quick about it!
« Reply #15 on: June 18, 2014, 08:56:26 AM »
I now see more clearly what the problem is over there . I get a Ryan White card for my dental and they are making us re-certify every 6 months now since last Jan . I was at my doc appointment the other day and and they issued me a temp card until I mailed them my proof of social sec. income letter . At our clinic you can walk in and sign in and a social worker will take care of you first come basis .

My read on this is its plainly political, not only have the red states refused to expand medicaid they have doubled down and are making people jump through hoops of red tape to get what we need . Despicable . 

Offline Buckmark

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Re: Damn it, son! Die and be quick about it!
« Reply #16 on: June 18, 2014, 09:45:12 AM »
The only reason I can see for this constant re-enrollment, and the constantly changing rules and procedures, is to discourage people from enrolling.  It is despicable.  But then I'll bet the politicians who come up with all turn around and  crow about how they are implementing programs to "take care of those in need".   ::)  That's what Texas own governor Rick Perry did in his inaugural speech in 2011, at the same time he was making deep cuts to social services.

Tim, this sounds awful -- like a game of "Simon Says".
"Life in Lubbock, Texas, taught me two things:
     One is that God loves you and you're going to burn in hell.
     The other is that sex is the most awful, filthy thing on earth and you should save it for someone you love."
- Butch Hancock, Musician, The Flatlanders

Offline thunter34

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Re: Damn it, son! Die and be quick about it!
« Reply #17 on: June 18, 2014, 11:49:54 AM »
Yes, Henry.  It is kind of like how Newt Gingrich carried on about how his "Welfare to Work" program help cut the roles down in GA, specifically in Cobb County.  What most people don't know is that it didn't help transfer people out in any positive way - it just made it so difficult on people that they just fell away.  When I was first sick, I went there to get food stamp assistance.  Because I wasn't working at the time, I was told I would have to work 20 hours a week for Cobb County...that's 80 hours a month of labor for $200 of food benefits.  That works out to $2.50 an hour.  You also, of course, had to either manage your own transportation (and therefore gas costs) into that equation or factor in the additional hours on the bus to get to and fro the county office buildings  in order to complete your labor commitment. Subtract all that and you are probably somewhere in the $1-ish range.

So obviously the roles dwindled.  Hurray for Newt.

I got exempted from that by playing the AIDS Card. 

*cough cough hack*  I'm too sick to work...besides, I might get AIDS all over the office water cooler.
AIDS isn't for sissies.

Offline Theyer

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Re: Damn it, son! Die and be quick about it!
« Reply #18 on: June 18, 2014, 11:51:43 AM »
Tim, to me this reads like a sadistic Alice in Wonderland Horror . Again I am left wondering what has happened to the investigating journalist , your forbearance is remarkable .

I have gathered from your Posts that you are also a carer for your parents? am I correct thinking this?

Meech,s point about being Poor is seen as a failing/crime in the U.S.A is pretty widely held here in Europe , what you have so soberly described goes further than neglet it is deliberate and i can only imagine how Punch drunk one must become working or dealing with this system.

I sincerely hope a outbreak off common decency occurs for you soon.

Yours

Michael
"If we can find the money to kill people, we can find the money to help people ."  Tony Benn

Offline Theyer

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Re: Damn it, son! Die and be quick about it!
« Reply #19 on: June 18, 2014, 12:03:58 PM »
Yes, Henry.  It is kind of like how Newt Gingrich carried on about how his "Welfare to Work" program help cut the roles down in GA, specifically in Cobb County.  What most people don't know is that it didn't help transfer people out in any positive way - it just made it so difficult on people that they just fell away.  When I was first sick, I went there to get food stamp assistance.  Because I wasn't working at the time, I was told I would have to work 20 hours a week for Cobb County...that's 80 hours a month of labor for $200 of food benefits.  That works out to $2.50 an hour.  You also, of course, had to either manage your own transportation (and therefore gas costs) into that equation or factor in the additional hours on the bus to get to and fro the county office buildings  in order to complete your labor commitment. Subtract all that and you are probably somewhere in the $1-ish range.

So obviously the roles dwindled.  Hurray for Newt.

I got exempted from that by playing the AIDS Card. 

*cough cough hack*  I'm too sick to work...besides, I might get AIDS all over the office water cooler.

This is related to the fantasy I am running , it involves chains , padlocks duct tape , radiator , Politicians Office , Press handouts etc.
"If we can find the money to kill people, we can find the money to help people ."  Tony Benn

Offline thunter34

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Re: Damn it, son! Die and be quick about it!
« Reply #20 on: June 18, 2014, 12:11:50 PM »
Tim, to me this reads like a sadistic Alice in Wonderland Horror . Again I am left wondering what has happened to the investigating journalist , your forbearance is remarkable .

I have gathered from your Posts that you are also a carer for your parents? am I correct thinking this?

Meech,s point about being Poor is seen as a failing/crime in the U.S.A is pretty widely held here in Europe , what you have so soberly described goes further than neglet it is deliberate and i can only imagine how Punch drunk one must become working or dealing with this system.

I sincerely hope a outbreak off common decency occurs for you soon.

Yours

Michael

Yes, I have two elderly parents.  One, my father, almost died in February.  He is on the mend.  They took care of me when I was on the brink.  It is now my time to repay the favor.  I've bounced back and forth between their place in the country and various spots in and around the city over the last 10 years.

This is very frustrating.  I mean....people around here can tell you:  I've been a member of these forums for about 8 years.  I've been extremely diligent about meds.  I take HIV seriously.  I don't let it rule my life - I rule my life by taking care of it.  I try to be respectful of the public assistance I am getting and mindful of my obligations for it, but even someone like me still keeps getting bounced or placed right on the line here.  This sort of thing has happened two or three times to me before despite my best efforts at keeping my ducks in a row.  It frightens me to think about how many other people - the homeless in town, for example, or those with insistent dependence issues - get routinely tossed out of programs and forgotten until they either wash up on the shores of Grady Memorial Hospital or just turn up at the morgue.

And what really riles me about this is that it isn't really fiscally conservative at all.  When you toss people out like this, they end up at Grady like I said...and that costs the taxpayers even more money than if you just cared for them in a preventative fashion.  And those who do NOT go to Grady are just out in society, infectious, and most likely further spreading the virus....thus also driving up healthcare costs.  It is madness, yet if the obvious and immediate costs appear to be lowered it remains the name of the game.

And for what it is worth:  This lowly leech on society started out with a pretty decently paying career at the start of last decade.  Condo, 401k, the works.  I lost my job in the travel industry post 9/11 and seroconverted just after...once I no longer had insurance.  I was now in the land of "pre-existing condition of the worst kind" and have since been at the mercy of ADAP and RW.  I'm also kind of stuck in the working poor financial bracket since I either have to land a really swank job with kick ass benefits or stay poor enough to keep these services.  There is no sliding scale, and if I make $1 over the cut off range I will lost all meds and services.    It would then take everything I make to pay for my own healthcare, so I would have to quit or cut my pay down to re-qualify.
AIDS isn't for sissies.

Offline Theyer

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Re: Damn it, son! Die and be quick about it!
« Reply #21 on: June 18, 2014, 03:11:11 PM »
Well lets start Up a severely disgruntled international group off merry Pranksters . Being nouveaux pauvres we know how to blag our way into Power Places and I can be so obnoxious its almost a new art form.

It could seem cruel to suggest anything is going to make this better , though it does seem like a good time if possible to meet up with friends and do what you do in these circumstances.

Take good care and never forget you do not in anyway deserve any off this cruel inhumane treatment.

Michael
« Last Edit: June 18, 2014, 03:14:02 PM by Theyer »
"If we can find the money to kill people, we can find the money to help people ."  Tony Benn

Offline zach

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Re: Damn it, son! Die and be quick about it!
« Reply #22 on: June 18, 2014, 03:30:51 PM »
not to hijak tims thread, i don't think he'll mind

just a story about the people at the clinic

my nurse is an older lady. super sweet, she's the one that sent me to the hospital. haven't seen her since that day but speak weekly on the phone.

i needed to call her today, hoping for good news, but misplaced her phone number so i did some googling. found her number. also found an article in the creative loaf she was profiled in. she is pos, an lts, and lost her husband in the 80's.

as i'm reading this, she returned my call. with news i'm UD. and she thought thats why i was so choked up.

now i just broke tears

i'm also whats called a grady baby, atlantans know the term, i was born at grady hospital

its not the people, the people are great

Offline thunter34

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Re: Damn it, son! Die and be quick about it!
« Reply #23 on: June 18, 2014, 04:08:58 PM »
not to hijak tims thread, i don't think he'll mind

as i'm reading this, she returned my call. with news i'm UD.

i'm also whats called a grady baby, atlantans know the term, i was born at grady hospital

its not the people, the people are great

If there was a post more germane to the intent of this thread, I can't imagine what it would be.

Besides, as far as I am concerned you are my Atlanta viral brother (aren't you just thrilled with that title?) and we are in this together.  You can say what you want.

And what a thing to say....Undetectable.

You've just succeeded in making about 95% of my frustration with this situation melt away.

Now go get your celebratory tattoo, my friend.
AIDS isn't for sissies.

Offline BT65

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Re: Damn it, son! Die and be quick about it!
« Reply #24 on: June 19, 2014, 06:44:40 AM »
Tim, it's the same in Indiana.  When I started at the ASO people only had to re-certify for adap once a year; when I left it was twice a year.  They were also making it harder for undocumented clients, and anyone making good pay (a person had to be within 300% of the poverty level).  Which, here isn't a bad income, but it stops people, as you were saying, to go above that level.

And it used to be, when people did go above that, we could have them fill out a "faux" tax form to claim their children on it and mail it with the re-certify.  That was good enough then.  Now, they check with the IRS, so if the form isn't correct, they get cut off. 

As you said, I believe they started doing this to get people off the roles.  That's a big reason I got out.  I couldn't tell a client "everything is going to be fine," when I know it's damn well not.

Good luck with this.  I'm sorry you're going through it.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Online Miss Philicia

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Re: Damn it, son! Die and be quick about it!
« Reply #25 on: June 19, 2014, 08:19:06 AM »
In Pennsylvania certification used to be annual and it's now every six months -- I think this must be a federal thing. However the mechanics of how that is done are set by the state, in that here we can do it all by mail for renewals. They've even increased income eligibility to 500% of FPL so it's $58,350 for a single person.

But I have heard complaints lately -- the slightest clerical error on a patients part (missing date or signature on one piece of paper) gets a full rejection instead of a letter to correct the issue like used to be done. Evidently the ADAP process is no longer handled by the state department of health, but is now handled by a 3rd-party private company -- and guess what -- they are paid every time it touches an application, so the more rejections generated over trivial issues the more they get paid.

read this from our own Poz blog section

Of course, farming things out to a private company and increasing renewals to 6 months surely has increased the operational cost of these state programs, but politicians are able to point to a decrease in state workers during a recession and fool taxpayers.

Case management can help you with these things, but they've changed that apparatus here too -- you can only be assigned a case manager for no longer than six months, they you have to go through the city health department and get assigned a new one.
"Iíve slept with enough men to know that Iím not gay"

Offline wolfter

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Re: Damn it, son! Die and be quick about it!
« Reply #26 on: June 19, 2014, 10:12:12 AM »
Tim, sorry for not responding sooner.  This entire situation is just too frustrating.  Hoping you get it all sorted out soon.  We have to get certified every 6 months now in Ohio instead of annually.  I guess they all hope some people will simply say F*** it and give up.

best wishes
greg
productivity breeds content

Offline thunter34

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Re: Damn it, son! Die and be quick about it!
« Reply #27 on: June 19, 2014, 01:10:36 PM »
In Pennsylvania certification used to be annual and it's now every six months -- I think this must be a federal thing. However the mechanics of how that is done are set by the state, in that here we can do it all by mail for renewals. They've even increased income eligibility to 500% of FPL so it's $58,350 for a single person.

But I have heard complaints lately -- the slightest clerical error on a patients part (missing date or signature on one piece of paper) gets a full rejection instead of a letter to correct the issue like used to be done. Evidently the ADAP process is no longer handled by the state department of health, but is now handled by a 3rd-party private company -- and guess what -- they are paid every time it touches an application, so the more rejections generated over trivial issues the more they get paid.

read this from our own Poz blog section

Of course, farming things out to a private company and increasing renewals to 6 months surely has increased the operational cost of these state programs, but politicians are able to point to a decrease in state workers during a recession and fool taxpayers.

Case management can help you with these things, but they've changed that apparatus here too -- you can only be assigned a case manager for no longer than six months, they you have to go through the city health department and get assigned a new one.

I'm not sure of the exact limit now, but ours is certainly not 500%.  It's much lower.  Last I recall, it was something along the lines of $29.500.  Seriously.  And I think it still is somewhere in that ballpark because if you read the article Zach linked, the woman clearly laments about people making $36k with no insurance being in no man's land.  So I don't know...maybe they've given it a cost of living increase to a whopping $35k or something.  Woo hoo.  But I'm not entirely certain it is even that high down here.  And you have to be hand to mouth with no assets of any kind beyond one car for transportation.

The future's so bright I gotta wear shades, y'all.
AIDS isn't for sissies.

Offline Joe K

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Re: Damn it, son! Die and be quick about it!
« Reply #28 on: June 19, 2014, 02:00:52 PM »
I'm not sure of the exact limit now, but ours is certainly not 500%.  It's much lower.  Last I recall, it was something along the lines of $29.500.  Seriously.  And I think it still is somewhere in that ballpark because if you read the article Zach linked, the woman clearly laments about people making $36k with no insurance being in no man's land.  So I don't know...maybe they've given it a cost of living increase to a whopping $35k or something.  Woo hoo.  But I'm not entirely certain it is even that high down here.  And you have to be hand to mouth with no assets of any kind beyond one car for transportation.

The future's so bright I gotta wear shades, y'all.

The eligibility guidelines are another way that states can reduce their cost.  I think there are three rails to HIV services in America.  1. Eligibility, 2. Formulary and 3. Administration (includes enrollment and provided services.)

Eligibility is determined between the state and the federal government, represented as some percent of the FPL (Federal Poverty Level).  To cover more people, you raise the limit, to exclude more people, you lower it.

Formulary has been used for decades to trim expenses in HIV services.  At one time, almost all drugs for pozzies were covered and not just antivirals.  Then the formulary games began.  First, they excluded most drugs that do not treat HIV directly.  Then they found ways to exclude certain HIV drugs, simply because they cost too much.  This trick has now been transferred to the medical insurance industry, as witnessed by the number of antivirals that are in the top tiers of drug formularies, requiring high co-payments from patients.

The last, administration has been an absolute bonanza for some states.  They can do it in many ways.  Limit the number of pharmacies for ADAP/Ryan White in the state, placing some folks at great distances to secure their services.  Another way is to simply limit the number of folks who actually do the work.  At the Broward County Health Services, which served thousands of clients, we had two pharmacists and that was it.  When one was not working, the prescriptions just pilled up and there was nothing done to reduce any backlog.

The flip side of administering the drugs, is the services and the same games apply.  They set rules that nit-pick a person to death and I have yet to hear a reason why this is necessary.  Instead, what I have witnessed is they do this to "wear down" applicants and I know many who simply gave up trying to get services.

I just threw up in my mouth a bit.  The more things change, the more they stay the same.

Joe

Offline mitch777

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Re: Damn it, son! Die and be quick about it!
« Reply #29 on: June 19, 2014, 08:11:44 PM »
To be fair, this issue has nothing to do with the health care delivery system in America, rather it has everything to do with legislatures constantly changing the rules for both ADAP and Ryan White eligibility.  The drugs and treatments are available, as long as someone can pay for them.  Republicans are experts at massaging the rules, to make it harder each year, to jump through the right hoops to get covered.

It's time for the federal government to dictate to the states, the rules of eligibility for both programs, so they are uniform in every state.  As long as legislatures can keep changing the rules, things like this will just continue to happen.  For some states, the goal of HIV services, is to deny as many as possible, so they can give tax breaks to those who hardly need them.

Joe

Joe, I couldn't agree more. I wasn't referring to the medical delivery system but healthcare in general here and we all know that politics plays a major role.

After catching up on this thread my disdain has grown further.

I feel like I live I a separate country living in a liberal state. Sad to say but the title of this thread seems to say it all. Are there any activist movements making any headway? Seems like they are needed now in many places like it was needed in the 80's.

My heart is breaking for you (Tim and Zach) and everyone else in your boat. :(
31 years hiv+ (oct. 2013) with a curtsy.

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Re: Damn it, son! Die and be quick about it!
« Reply #30 on: June 19, 2014, 08:36:53 PM »
I'm not sure of the exact limit now, but ours is certainly not 500%.  It's much lower.  Last I recall, it was something along the lines of $29.500.  Seriously.  And I think it still is somewhere in that ballpark because if you read the article Zach linked, the woman clearly laments about people making $36k with no insurance being in no man's land.  So I don't know...maybe they've given it a cost of living increase to a whopping $35k or something.  Woo hoo.  But I'm not entirely certain it is even that high down here.  And you have to be hand to mouth with no assets of any kind beyond one car for transportation.

The future's so bright I gotta wear shades, y'all.

In all fairness the cost of living is a lot cheaper in Atlanta than in the Northeast urban areas, so that's part of it. Assets like residence/land are exempt however. But yes I agree that 300% is too low.

Hey, at least yours isn't 200% like Texas.
"Iíve slept with enough men to know that Iím not gay"

Offline zach

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Re: Damn it, son! Die and be quick about it!
« Reply #31 on: June 19, 2014, 10:21:10 PM »
don't feel bad for me, i'm half bottle of muscadine wine and two joints in, and i'm undetectable beeches... life is good, ca c'est bon, la vie, tout baigne

see i figured out how to piss em off, stay alive, bastards hate it
« Last Edit: June 19, 2014, 10:40:36 PM by zach »

Offline thunter34

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Re: Damn it, son! Die and be quick about it!
« Reply #32 on: June 20, 2014, 12:15:24 AM »
They set rules that nit-pick a person to death and I have yet to hear a reason why this is necessary.  Instead, what I have witnessed is they do this to "wear down" applicants and I know many who simply gave up trying to get services.

see i figured out how to piss em off, stay alive, bastards hate it

Yes, young grasshopper.  That is the secret.  Living well (or at least trying to) is indeed the best revenge.

And fear not, Joe.  I may get frustrated, but I don't get worn down and give up.  I get pissed off.  I bow up and make a scene.  Eventually.  I'm pleasant and by the book until it is time to throw the book at someone's head.

I will not just go away.  I will literally coat myself in red paint and lay down naked on the steps of city hall before I just curl up and die.  Bipolar is great for theatrics, and you can be damn sure any forced exit I make will be a grand one.
AIDS isn't for sissies.

Offline BT65

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Re: Damn it, son! Die and be quick about it!
« Reply #33 on: June 20, 2014, 07:18:17 AM »
In all fairness the cost of living is a lot cheaper in Atlanta than in the Northeast urban areas, so that's part of it. Assets like residence/land are exempt however. But yes I agree that 300% is too low.

That's what Indiana's is-300%, or $32,000-something for one person.  I have never heard, however, of counting one's assets.  That's something they don't do here. 

Tim, I love your attitude.  It's something we all need to hear.  I'm hoping, and wishing, that this situation is resolved quickly.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Online Miss Philicia

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Re: Damn it, son! Die and be quick about it!
« Reply #34 on: June 20, 2014, 07:24:02 AM »
That's what Indiana's is-300%, or $32,000-something for one person.  I have never heard, however, of counting one's assets.  That's something they don't do here. 

Tim, I love your attitude.  It's something we all need to hear.  I'm hoping, and wishing, that this situation is resolved quickly.

I have a dual-eligible Medicare/Medicaid set up and for the Medicaid application they do count assets.

As far as the annoying paperwork, I have to renew this just like ADAP (which I can't be on with Medicaid) similarly every six months, though I do it by mail. But they send me the renewal form and give me basically 7 days to get it back to them. Which causes me endless worry about scheduling any visit home to my parents, etc. around those times of the year.
« Last Edit: June 20, 2014, 07:26:30 AM by Miss Philicia »
"Iíve slept with enough men to know that Iím not gay"

Offline Theyer

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Re: Damn it, son! Die and be quick about it!
« Reply #35 on: June 20, 2014, 07:48:40 AM »
don't feel bad for me, i'm half bottle of muscadine wine and two joints in, and i'm undetectable beeches... life is good, ca c'est bon, la vie, tout baigne

see i figured out how to piss em off, stay alive, bastards hate it

And that is why I wear CHASMIRE AND THE best tailoring the charity shop stocks>
"If we can find the money to kill people, we can find the money to help people ."  Tony Benn

Offline thunter34

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Re: Damn it, son! Die and be quick about it!
« Reply #36 on: June 20, 2014, 10:03:51 AM »
OK, kids...this is it.  Moment of truth time.

"Cover me, I'm going in!"

Appointment is for 2PM, but going in earlier to try to tackle RW beforehand.

One last grumble before I go:

Let's all take a moment to remember that this is also one of the states that refuses to expand Medicare and is letting rural hospitals shut down across the state because poor people.

While this particular battle has been specific to me, I ain't the only one and we aren't the only group having to fire walk around here. 

If you are reading this and live in GA, V-O-T-E.

Bye, y'all.  I'll let you know how it goes, of course.

Or you'll see me on the news.

Whichever.
AIDS isn't for sissies.

Offline zach

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Re: Damn it, son! Die and be quick about it!
« Reply #37 on: June 20, 2014, 10:07:13 AM »
i got bail money  8)

Offline Jody

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Re: Damn it, son! Die and be quick about it!
« Reply #38 on: June 20, 2014, 11:44:36 AM »
Best of luck good guy Tim, hope all works out well for you this Friday and you can enjoy your weekend.  Stress sucks, that's for sure!

Hugs, Jody :)
"Wake up to find out that you are the eyes of the world".
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Offline Theyer

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Re: Damn it, son! Die and be quick about it!
« Reply #39 on: June 20, 2014, 12:24:17 PM »
The very best off luck , I too would contribute a sadly small sum to any ensuing legal cost,s as I am sure other,s would to.

Hoping this the end off this book not another chapter.
m
"If we can find the money to kill people, we can find the money to help people ."  Tony Benn

Offline BT65

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Re: Damn it, son! Die and be quick about it!
« Reply #40 on: June 21, 2014, 07:56:21 AM »
I have a dual-eligible Medicare/Medicaid set up and for the Medicaid application they do count assets.

As far as the annoying paperwork, I have to renew this just like ADAP (which I can't be on with Medicaid) similarly every six months, though I do it by mail. But they send me the renewal form and give me basically 7 days to get it back to them. Which causes me endless worry about scheduling any visit home to my parents, etc. around those times of the year.

Yes, I believe "Medicaid" everywhere counts assets; I know it does here.  But as far as ADAP, in Indiana they do not count assets.  They don't even ask about them.

I have Medicare and Med Works-which is the Medicaid for working people (that's just what it's called in Indiana).  I pay a small premium for the Medicaid, and it covers the Medicare premiums and also helps with the Part D plan I have.  The paperwork for this, the Med Works, is done once a year, around the end of the year, and it's all mailed in.  And yeah, they usually only give me a week also.

I know about the nervousness when this happens, I always get a nervous stomach when this is going on, with the Med Works.

Tim I hope everything went well.  I will be watching this thread to see what happened. 
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline thunter34

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Re: Damn it, son! Die and be quick about it!
« Reply #41 on: June 24, 2014, 11:25:28 PM »
UPDATE:

Well, ADAP went fine, but RW did not.  I still have to finish that side of it, most likely this Friday.  ADAP had switched to accepting a notarized letter as part of proof of residence (along with a photo ID) which was the same thing RW accepted.

Or used to.

Apparently RW decided to shake things up as well, and now they no longer accept a notarized letter as part of your proof.  It has to be a utility bill or bank statement in your name with that address...which makes me wonder about people who move into apts where the utilities are in the roomie's name already, or the homeless, or just someone piss poor like me who is having to schlep in to my credit union to get them to give me some official form of bank statement - because I need the envelope with the address on it.

Almost no one uses snail mail anymore.  All my crap is electronic.  Even my paystubs had to be officially requested from work to get them as needed.  Sigh.

On the lighter side, this awesome pharmacist named Wendy happened in while I was renewing and with just an earshot of my conversation with ADAP came to me with two weeks worth of Depakote.  With that along with the meds I had left and some others that were sent to me - YET AGAIN showing the true heart and soul of these forums - I am good on meds on all fronts for the time being, and should be until everything is completely good to go again.

Oh, and get this:  at least from the ADAP front, I was still active in not yet in need of renewal.  Apparently my old renewal did not get processed in a timely fashion downtown, so my six month window still had not come up yet.  I could still go get meds that very moment if it wasn't for the fact that RW had  been processed in proper time and was expired...and without that bank statement or utility bill they were having none it.  So close and yet so far.

PS: 
I would have done this update sooner, but it was a heck of a weekend.  My old cellphone is dead for real real, and other such aggravations.

PPS: 
I was fine with the bipolar almost all last week, but now that I am getting back ON the meds full tilt I am swinging back and forth between irritable and very weepy. 

At least I did not go fully manic and end up in midtown with a bottle of poppers up each nostril while trying to squat on a fire hydrant.
AIDS isn't for sissies.

Offline zach

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Re: Damn it, son! Die and be quick about it!
« Reply #42 on: June 24, 2014, 11:35:09 PM »
divalproex er ext 500mg circa oct 2012

200 pills, they're yours

let me know anytime

Offline Joe K

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Re: Damn it, son! Die and be quick about it!
« Reply #43 on: June 25, 2014, 03:11:34 AM »
At least I did not go fully manic and end up in midtown with a bottle of poppers up each nostril while trying to squat on a fire hydrant.

Oh no, not again.   8)

Joe

Offline Buckmark

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Re: Damn it, son! Die and be quick about it!
« Reply #44 on: June 25, 2014, 09:13:07 AM »
UPDATE:

Well, ADAP went fine, but RW did not.  I still have to finish that side of it, most likely this Friday.  ADAP had switched to accepting a notarized letter as part of proof of residence (along with a photo ID) which was the same thing RW accepted.

Or used to.

Apparently RW decided to shake things up as well, and now they no longer accept a notarized letter as part of your proof.  It has to be a utility bill or bank statement in your name with that address...which makes me wonder about people who move into apts where the utilities are in the roomie's name already, or the homeless, or just someone piss poor like me who is having to schlep in to my credit union to get them to give me some official form of bank statement - because I need the envelope with the address on it.

Almost no one uses snail mail anymore.  All my crap is electronic.  Even my paystubs had to be officially requested from work to get them as needed.  Sigh.


Oy, what a mess.  For your bank statement, is it available on your credit union's web site?  That's how my credit union makes my account statements available to me.  It is identical to the paper statement they used to send me via snail mail. 

Quote
On the lighter side, this awesome pharmacist named Wendy happened in while I was renewing and with just an earshot of my conversation with ADAP came to me with two weeks worth of Depakote.  With that along with the meds I had left and some others that were sent to me - YET AGAIN showing the true heart and soul of these forums - I am good on meds on all fronts for the time being, and should be until everything is completely good to go again.


Yes, thank God for kind people with free medications.  My neurologist just gave me 4 weeks worth of Lyrica to try for my neuropathy, which saved me a huge copay.

Quote
PS: 
I would have done this update sooner, but it was a heck of a weekend.  My old cellphone is dead for real real, and other such aggravations.

Incommunicado without a mobile phone?  Miss P will start harassing you now about getting an iPhone.  ::)

Quote
PPS: 
I was fine with the bipolar almost all last week, but now that I am getting back ON the meds full tilt I am swinging back and forth between irritable and very weepy. 

At least I did not go fully manic and end up in midtown with a bottle of poppers up each nostril while trying to squat on a fire hydrant.

Not yet, anyway.  :-*  Keep taking your meds, you're doing great.

Henry
"Life in Lubbock, Texas, taught me two things:
     One is that God loves you and you're going to burn in hell.
     The other is that sex is the most awful, filthy thing on earth and you should save it for someone you love."
- Butch Hancock, Musician, The Flatlanders

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Re: Damn it, son! Die and be quick about it!
« Reply #45 on: June 25, 2014, 09:18:24 AM »
Henry is right -- I just print out a bank statement from my on-line account as I no longer receive them in the mail in an effort to be "green". And I've been doing so for a decade. No bureaucratic entity has ever balked about using this as proof of residence/income/assets or whatever. I even black out my account number with a Sharpie, and only provide them with the first page/summary page of the account balance, figuring they have no business knowing what I spend my own money on per transaction.

I know you say you don't have a lease either, but you could in effect make up a legal one. Get a standard lease form at an office supply store and write it out that your parents rent your residence to you for a nominal sum.

My neurologist just gave me 4 weeks worth of Lyrica to try for my neuropathy, which saved me a huge copay.

I hope you don't pork up and lose the ability to masturbate. You've been warned (plus that shit doesn't work anyway).
« Last Edit: June 25, 2014, 09:23:25 AM by Miss Philicia »
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Offline Dachshund

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Re: Damn it, son! Die and be quick about it!
« Reply #46 on: June 25, 2014, 09:54:20 AM »
Timantha. I've been wondering did you ever apply for Obummer Care? I know our circumstances are similar, working poor, wards of the HIV state, etc. I got it and Ryan White covers my premium and copays. I still have to re-certify every six months but I now have complete health insurance coverage.

Offline Buckmark

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Re: Damn it, son! Die and be quick about it!
« Reply #47 on: June 25, 2014, 09:55:45 AM »
Henry is right --

I like the sound of that, so I just had to reply and quote it.

Quote
I hope you don't pork up and lose the ability to masturbate. You've been warned (plus that shit doesn't work anyway).

Thanks for the encouraging words, Mary Sunshine.  I'm aware of Lyrica's potential side-effects, and I'm already aware it may not help (just like the neurontin / gabapentin didn't work).  I can manage my weight (especially since the radiation is trashing my mouth / throat).  As for the masturbation, honey, I haven't done that since chemo.   :(

"Life in Lubbock, Texas, taught me two things:
     One is that God loves you and you're going to burn in hell.
     The other is that sex is the most awful, filthy thing on earth and you should save it for someone you love."
- Butch Hancock, Musician, The Flatlanders

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Re: Damn it, son! Die and be quick about it!
« Reply #48 on: June 25, 2014, 10:10:32 AM »
As for the masturbation, honey, I haven't done that since chemo.   :(


How horrible. Would you like me to urinate all over you and see if that helps?
"Iíve slept with enough men to know that Iím not gay"

Offline allanq

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Re: Damn it, son! Die and be quick about it!
« Reply #49 on: June 25, 2014, 12:51:17 PM »
Hi Tim,

I've been reading your posts about the frustration and stress that you have been going through in renewing ADAP and RW. Your talent for writing makes me feel like I'm experiencing it all myself.

Over the last 25 years I've had many frustrating encounters with health care providers and the insurance bureaucracy, but your experiences are much worse than anything I've gone through. For the last few years I've been receiving HIV care and meds through the San Francisco Veterans Administration clinic. I'm very lucky that despite widespread problems in the VA, the San Francisco clinic is well-run, efficient, and staffed by very kind and capable people.

I wish I had some concrete suggestions or help to offer you. All I can say is that I admire your spirit. I wonder how many people who lack your ability and tenacity just give up.

The crucial point that these inflexible bureaucracies seem to either not get or not care about is that their byzantine and ever-changing rules and procedures have life and death consequences.

The best of luck to you. I'm glad you were able to get the ADAP part of this problem resolved. I hope resolution of the RW part follows very soon.

Allan
Top (Breakfast): Prezista, Norvir, Isentress, Zoloft (2), Glyburide (2), Aspirin
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