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Author Topic: A learning experience  (Read 4939 times)

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Offline AlanBama

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  • Alabama: the 'other' 3rd World Country!
A learning experience
« on: December 18, 2008, 11:29:27 PM »
This has been my first year to get my meds from ADAP.   In 2007, I had a Medicare Part D plan with no donut hole (Sierra RX); prior to that, I had private coverage;  this year, when I went into the donut hole in February, the State of AL had to start providing my meds.

No wonder the ADAP programs are broke -- if they do as many stupid things with everyone's meds as they have with mine.   In Nov, my doc decided to allow me to switch Truvada for Epzicom.  They put in the request;  took several weeks;  when I went to pick the Epzicom up, they had refilled my ENTIRE month of Nov meds, but incorrectly (no Epzicom, more Truvada).   So they had to mail me some Epzicom.   Then this month, I learned that the Epzicom was stirring up my PN problems, so the doc agreed to switch me to Ziagen and Emtriva....went to get meds after the change, they refilled the ENTIRE month of Dec again, incorrectly (more Epzicom).   So I now have 4 months worth of meds. (except still not the right ones, completely).   Why is it so difficult for them to make a change in someone's meds?   Is it only this State, or are they all this way?

My numbers are good, and I'm not in a panic about switching my drugs......but what if they WEREN'T so good?  What if I really needed a different med?   I'm sure it would be the same Keystone Cops routine.
Scares the crap out of me.

One good thing:  my Paxil is on the ADAP formulary; they have never provided it before, but it mysteriously appeared in the first 'wrong' sack of meds for November.  Now I have 8 bottles of Paxil....

Lisa, I'll have some Epzicom for your drug closet honey....

hugs,

Alan
« Last Edit: December 18, 2008, 11:34:25 PM by AlanBama »
"Remember my sentimental friend that a heart is not judged by how much you love, but by how much you are loved by others." - The Wizard of Oz

Offline BT65

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Re: A learning experience
« Reply #1 on: December 19, 2008, 10:31:15 AM »
Hey Alan,

So good to hear from you, though I'm sorry you're having to deal with all that wrong-filled med crap.

I've never used ADAP (not yet), but I hope if I do, things won't be as complicated as they've been for you.  Hey, you have a wonderful Christmas, sweetie. :-*
  Luv,
Betty
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline aztecan

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  • 29 years positive, 57 years a pain in the butt
Re: A learning experience
« Reply #2 on: December 19, 2008, 10:41:49 AM »
Hey Alan,

The ADAP here works pretty well, but it is only temporary. People here are put on an insurance plan that includes prescription coverage - it works out to be cheaper in the long run than just using ADAP, or so they say.

Sorry you are having such trouble, both with ADAP and with the meds.

Hope things smooth out for you soon.

BIG HUGS,

Mark

"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Offline J.R.E.

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  • Posts: 7,275
  • Joined Dec-2003 Living positive, since 1985.
Re: A learning experience
« Reply #3 on: December 19, 2008, 01:01:22 PM »
Alan.

Here's hoping that ADAP gets their CRAP together. Sorry to hear that you've got to go through that.


Ray
Current Meds ; Viramune, Epzicom, 40mg of simvastatin, 25 mg 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


Diagnosed positive in 1985,.. In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started on  HAART on October 24th, 2003.

 As of 8/25/14,  t-cells are at 402, Viral load <40

 Current % is at 11%

  
 63 years young.

Offline AndyArrow

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Re: A learning experience
« Reply #4 on: December 21, 2008, 04:26:28 AM »
Alan,

Sometimes I think the logic behind it all is they hope if they screw it up enough times you'll just give up!  I hope things get worked out soon.  Stockpile that Paxil!

AA
It is not the arrival that matters.  It is the journey along the way. -- Michel Montaigne

Online Dachshund

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Re: A learning experience
« Reply #5 on: December 21, 2008, 07:12:18 AM »
Having had to rely on ADAP (TN dropped it's insurance program) for the last five years, I've learned to walk that tightrope. I know it varies from state to state, but bureaucracy never will. Ask questions and then ask again, especially if and when your doctor changes your meds. Assume your doc knows little about how ADAP works, because they probably don't. Whenever changes in meds occur, I do two things. 1. Check with my caseworker about the paperwork involved and make sure they have sent it in. 2. Check with the pharmacy before I fill my prescription to see what they need. Nine times out of ten, it's the paperwork. Usually something hasn't been added , or eliminated from the computer.

I'm praying Obama comes through on his healthcare promise. ADAP was never meant to be more the a stopgap in HIV treatment. With rising infections and shrinking budgets, the future does not look rosy.

Offline ETNPoz

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Re: A learning experience
« Reply #6 on: December 31, 2008, 11:39:46 AM »
Hi Dachshund,
Does TN (Eastern Tennessee) have ADAP access?  Going into the hole again this year and wondering how it works.

Online Miss Philicia

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Re: A learning experience
« Reply #7 on: December 31, 2008, 01:51:27 PM »
ADAP used to work VERY well previous to the initiation of Medicare Pt. D a few years ago.  I couldn't have been simpler, at least in my use of it for 3 years in New York, and the first year here in Pennsylvania.  Once the initial paperwork was done I never had any problems getting this filled.  And I was always on newer HIV meds, and once they were FDA approved at most it took a month to go on the formulary, usually less.

Once Medicare Pt. D started it was at times not dealt with well, but they seem to have worked out the kinks.  Every year, due to increased Pt. D premiums (which the state pays) they've had to switch me to another carrier.  Last year they contracted out to a private company to coordinate all of this, and I was less than impressed at how they handled my case though in the end it worked out -- but barely in time for my first January refills.  This year I was sent a letter that informed me of what they'd switch me to, with instructions it would be done automatically unless I contacted PA's ADAP office and declined by such-and-such date.  I received my new insurance card promptly at the beginning of December, so I'm all set.  As far as annual ADAP paperwork, once a year before Thanksgiving I get a form to fill out and all I have to provide is a copy of income verification.  If there's ever any screw ups we have the ability to authorize a one-month "emergency" refill request, though you have to get a case worker to sign off on that.

I've never dealt with a donut hole, as those costs have always been picked up by the state.  I guess that's a "blue state" benefit because you know how those liberals like their high taxes.  All of ADAP budget cuts come out of the non-HIV medication part of Ryan White funding.
"Iíve slept with enough men to know that Iím not gay"

Offline denb45

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Re: A learning experience
« Reply #8 on: December 31, 2008, 02:11:45 PM »

I've never dealt with a donut hole, as those costs have always been picked up by the state.  I guess that's a "blue state" benefit because you know how those liberals like their high taxes.  All of ADAP budget cuts come out of the non-HIV medication part of Ryan White funding.

Yeah it's the same way here in New Mexico too, I've heard of the donut hole, but I don't think it really applies to me, being on "Extra Help" and Ryan White............the "Extra Help" is part of the Part D Medicare, if your in that low imcome braket, it depends on what State you live in, in most states, my Imcome woundln't be considered to be low, and depending on what State I lived in, I couldn't get any help at all
so, whatever the cost of living is, and the poverty level in that State is.......
« Last Edit: December 31, 2008, 02:21:04 PM by denb45 »
"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Offline AlanBama

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  • Alabama: the 'other' 3rd World Country!
Re: A learning experience
« Reply #9 on: January 07, 2009, 05:08:46 PM »
Well, the third time was NOT the charm in this case.....they still screwed up January's meds.   I give up.

They tried to take away the med in my combo that is being changed (Epzicom) but wouldn't give me anything to replace it with.   No way was I having that....

It's really not that big a deal, since I am dealing with the Epzicom o.k.....but what is scary to me, is what if I weren't?  What if it was making me very ill, giving me terrible diarrhea or headaches or something, would I still have this trouble switching meds?   I would, but I would be down there showing out to get something different.   I think it's a shame you have to act out to get the doctor/clinic to take any action.

Life in "the system".....oh what I wouldn't give to have a REAL doctor and REAL health insurance again.

 :-[
"Remember my sentimental friend that a heart is not judged by how much you love, but by how much you are loved by others." - The Wizard of Oz

Offline denb45

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Re: A learning experience
« Reply #10 on: January 07, 2009, 07:21:06 PM »
Well, the third time was NOT the charm in this case.....they still screwed up January's meds.   I give up.

They tried to take away the med in my combo that is being changed (Epzicom) but wouldn't give me anything to replace it with.   No way was I having that....

It's really not that big a deal, since I am dealing with the Epzicom o.k.....but what is scary to me, is what if I weren't?  What if it was making me very ill, giving me terrible diarrhea or headaches or something, would I still have this trouble switching meds?   I would, but I would be down there showing out to get something different.   I think it's a shame you have to act out to get the doctor/clinic to take any action.

Life in "the system".....oh what I wouldn't give to have a REAL doctor and REAL health insurance again.

 :-[

Yeah why anyone would even want to get on SSDI & Medicare, only to be placed into a broken system, is way beyond me  ??? I Cringe when I hear someone that wants to get into the system and go on disability :-\ I alway tell them "Keep your Job & your health Ins. as long as you can stand it" this is no Picnic or Party for a lotta of us here in this forum........
« Last Edit: January 07, 2009, 08:59:07 PM by denb45 »
"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Offline BT65

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Re: A learning experience
« Reply #11 on: January 07, 2009, 08:34:56 PM »
Life in "the system".....oh what I wouldn't give to have a REAL doctor and REAL health insurance again.

 :-[

Tell it like it is.  I'm so sorry you're having to go through this, Alan.  I hope there's some light soon. :-*
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline AlanBama

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  • Alabama: the 'other' 3rd World Country!
Re: A learning experience
« Reply #12 on: January 15, 2009, 12:01:48 PM »
Well, I received my new (and correct!) meds yesterday.   I also received MORE of the ones that were correct initially.  So I have quite a load of Paxil, Emtriva, Viramune, and Valtrex (about 6 bottles of each).    Wow, no wonder ADAP is hurting; everytime there is a change in someone's meds, they send out the ENTIRE MONTH's supply again.   They have now revised the form we sign when picking up our meds to include TWO lines for each month (so obviously this is a regular occurrance).   Sign once the first time you pick them up, then sign again when you get the correct meds (plus all the others for the 2nd time!)

 ???
"Remember my sentimental friend that a heart is not judged by how much you love, but by how much you are loved by others." - The Wizard of Oz

Offline denb45

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Re: A learning experience
« Reply #13 on: January 15, 2009, 12:27:37 PM »
Well, I received my new (and correct!) meds yesterday.   I also received MORE of the ones that were correct initially.  So I have quite a load of Paxil, Emtriva, Viramune, and Valtrex (about 6 bottles of each).    Wow, no wonder ADAP is hurting; everytime there is a change in someone's meds, they send out the ENTIRE MONTH's supply again.   They have now revised the form we sign when picking up our meds to include TWO lines for each month (so obviously this is a regular occurrance).   Sign once the first time you pick them up, then sign again when you get the correct meds (plus all the others for the 2nd time!)

 ???

Alan........every State is different in the way they do ADAP, that is just the way yours does it, Here in New Mexico, ADAP is very limited, and only for those who cannot afford any meds, and who make under a certain amount of income......a person like me, that's on Medicare part D, and who uses that for there Meds cannot even use ADAP anymore, and I don't even qualify for medicaid or Food stamps, due to my imcome,the Medicare part D has been that way for the last 3 yrs. 2006...........it varies form State to State , here in New Mexico, if you make under 1, 850 a month your considered way below the federal Poverty line 150% to 200% to be exact, and some States requirements for assistance
isn't even as high as that figure, when I lived in California over 10 yrs. ago, that figure was about 2,200 a month........ ( I'm not even sure what it is now) some states are even lower than that figure.........
« Last Edit: January 15, 2009, 12:39:18 PM by denb45 »
"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Offline leatherman

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Re: A learning experience
« Reply #14 on: January 15, 2009, 01:17:08 PM »
I alway tell them "Keep your Job & your health Ins. as long as you can stand it" this is no Picnic or Party
amen brother.

I have a few acquaintances trying to get SSd (non-HIV reasons) but I keep telling them they don't understand how miserable and poor they'll be on disability. Why anyone, except the seriously ill, would consider disability at only 30 is beyond me. Don't they realize how bad things will be for them when they have been on it 20 yrs and are going into their 50s?? Gimme another couple of yrs and I'll be living proof. ;) ;D

One of the reasons I haven't moved back to NC after losing Randy and Jim is because I have things (meds and health care) pretty stable here in Ohio after 11 years on SSd. ADAP pays my spenddown amount, so that I receive a medical card up front each month - which covers the doc and labs. I still have to pay a small copay for my meds thru part D (about $14 for the first 5 months of the year until I reach that spenddown amount) to get my meds at the local Rite Aid pharmacy; but then I get the rest of the year's meds by just signing on the electronic dotted line when I pick them up.

That's worlds better than when I was released from the hospital after PCP with a VL >900,000 in 96 and had to wait four weeks until ADAP approved me and got me my first real med cocktail (instead of AZT mono-therapy) ;) I was pretty scared for a while that I was going to end up dying before I got any meds.

Glad to hear that you finally got the right meds, Alan.  ;D

braving the bitter cold of Ohio to keep medicated,
mikie
leatherman (aka mIkIE)


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

Offline denb45

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Re: A learning experience
« Reply #15 on: January 15, 2009, 01:29:21 PM »
amen brother.


Why anyone, except the seriously ill, would consider disability at only 30 is beyond me. Don't they realize how bad things will be for them when they have been on it 20 yrs and are going into their 50s?? Gimme another couple of yrs and I'll be living proof. Wink Grin

I don't understand it either mikie, if I was in my 30's I sure wouldn't do it, I'd love my 45K a yr job back, humm let me see, after 10 yrs. that would be about 55K a yr. for Today  ???
"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Offline BT65

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Re: A learning experience
« Reply #16 on: January 16, 2009, 09:17:25 PM »
Alan sweetie, I'm glad you finally got the right meds.  I really don't know anything about ADAP.  Since I qualify for Medicaid (I make under $1000/month) I'm not eligible for ADAP.  Every state is different. 

Anyway, thank goodness you'll be medicated the right way. :-*
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

 


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