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Author Topic: My meds ran out almost three weeks ago  (Read 599 times)

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Offline rockandahardplace

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  • Posts: 2
My meds ran out almost three weeks ago
« on: July 30, 2014, 08:00:24 PM »
I sorta feel like this is what I get when I let my healthcare be paid for by the government, but I'm beginning to get freaked out. I live in GA and without getting bogged down in too many details, I will cut to the chase. I'm on an ADAP (?) program and a few weeks ago I called for my refills and the pharmacy said my insurance had been cancelled.  I called my caseworker and she said I'm sure it's no big deal and it will come through soon. Now, I've been off the meds for almost 3 weeks at this point, and they have no answers for me except that my file along with several others were lost. I know that she can't really do anything about it other then check the status every day, but I feel so helpless. I'm on Truvada, Prezista and  Norvir. A friend of mine said he had some extra Truvada that he would send me because I'm starting to feel bad. The caseworker told me not to take anything if I can't take all three of them. Does anyone know if that's good advice or not? I don't doubt her but I'm just feeling a little overwhelmed. I welcome your thoughts.

Offline eric48

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  • Posts: 1,177
  • @HIVPharmaCure & tinyurl.com/HIVPharmaCure
Re: My meds ran out almost three weeks ago
« Reply #1 on: July 31, 2014, 05:06:04 AM »
The caseworker told me not to take anything if I can't take all three of them. Does anyone know if that's good advice or not?

She is correct as far as I understand

This regimen has excellent resistance profile, so this unfortunate shortage is unlikely to have consequences on this front

Using friend´s stock and face a second shortage a few days/weeks later may not be the best thing to do

I.ll let those who understand better than I provide further explanations if you need

Mobile.eric
NVP/ABC/3TC/... UD; CD4 > 1000; CD4/CD8 ~ 2.0   safety stock : 2 months

Offline leatherman

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  • Google and HIV meds are Your Friends
Re: My meds ran out almost three weeks ago
« Reply #2 on: July 31, 2014, 08:19:25 AM »
never take a partial regimen or take a regimen part of the time - that's when resistance can develop. Either of those options means that you  don't have enough med in your system to work full force, but enough meds in your system to let HIV learn to get around it. Stopping cold turkey is the best way to not take meds, if there is such a thing as "best way" to not take meds.

more info: http://i-base.info/ttfa/section-2/213-viral-lifecycle-drug-resistance-and-adherence/


IMHO you need to do whatever it takes to get this issue resolved. Camp out in your case manager's office. cry in the doctor's waiting room. talk to anyone at your ASO/clinic to find out how to get a temp prescription. find out where YOU need to go to complete whatever paperwork is missing to get back onto ADAP. call everyone. Do whatever it takes!!
leatherman (aka mIkIE)


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

Offline Almost2late

  • Member
  • Posts: 249
  • "My disease stops with me" - Jeff G
Re: My meds ran out almost three weeks ago
« Reply #3 on: July 31, 2014, 09:56:18 AM »
That so much sucks, its so wrong, its evil!  >:( .. I'm sorry but if I had to go through that here in florida, I would have to leave the state.. I hope you get your meds soon.
Atripla, Bactrim, Azithromycin
Date         CD4's          VL
02/14     13  2.79%    228k+
03/14     52       7%       3k-
04/14     not done          2k-
05/14     184     9%       595
06/14     117     8%       235  switched off Atripla
08/14     135    10%      110  stopped Azithromycin
Tivicay, Truvada, Bactrim

“I have heard there are troubles of more than one kind. Some come from ahead and some come from behind. But I've bought a big bat. I'm all ready you see. Now my troubles are going to have troubles with me!”
― Dr. Seuss

“Everybody dies … The thing is, to have a life before we die.”
― John Irving, The World According to Garp

Offline leatherman

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  • Google and HIV meds are Your Friends
Re: My meds ran out almost three weeks ago
« Reply #4 on: July 31, 2014, 11:57:11 AM »
just a quick aside because I don't want to lose the focus on the hard place that rockandahardplace is in right now.....

I'm sorry but if I had to go through that here in florida, I would have to leave the state.
you might want to check into the HIV advocacy organizations in your state. Just a few years ago, Florida ADAP went totally bankrupt and 6500 patients would have been without meds if a SC agency, Welvista, had not stepped up to help. I don't know the details of ADAP funding in FL right now; but here in SC we only have one more year left out of a 4 yr recurring budget item. the SC HIV Task Force was able to encourage our legislators to override the Governor's veto to retain this funding. As you are living in another red state which has also rejected Medicaid Expansion and previously had a Ryan White ADAP waiting list, I would encourage you to find out more about the situation in your state and add your voice to advocate for ME and/or proper ADAP funding.

http://forums.poz.com/index.php?topic=36414
http://forums.poz.com/index.php?topic=36814
http://www.poz.com/articles/HIV_ADAP_Florida_401_19820.shtml

I would have to leave the state.
here's a good time to repeat an important piece of advice:
if anyone is thinking of moving, especially to another state, it is very important to determine how to continue your access to healthcare and to medications before moving.  for example, Utah currently has an ADAP waiting list with 35 people. If you use ADAP, right now is not the time to move to Utah or you will be without medications.
leatherman (aka mIkIE)


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

Offline Almost2late

  • Member
  • Posts: 249
  • "My disease stops with me" - Jeff G
Re: My meds ran out almost three weeks ago
« Reply #5 on: July 31, 2014, 01:36:17 PM »
Thanks Leatherman for the heads-up.. I currently don't have a problem since I get private health insurance thru my present job, along with co-pay assistance I'm okay.. I joked once about collecting SS because of my aids diagnoses but really just trying to keep my present job for the medical benefits I think is a better idea... I really am planning to move to a bluer state in the future cause I'll never know if I'll need public assistance and I miss the four seasons.

The political bullshit that puts peoples lives at risk is disgusting in some of these red states, it should be considered criminal.. It doesn't make any sense having pozzies off their meds while increasing viral loads would maybe contribute to more infections, more hospitalizations, a bigger financial burden on the state... It would be cheaper to make sure everyone hiv poz gets their meds, right?... WWJD? .. Unfortunately too many riding around town with these bumper stickers haven't a clue  :-[

Atripla, Bactrim, Azithromycin
Date         CD4's          VL
02/14     13  2.79%    228k+
03/14     52       7%       3k-
04/14     not done          2k-
05/14     184     9%       595
06/14     117     8%       235  switched off Atripla
08/14     135    10%      110  stopped Azithromycin
Tivicay, Truvada, Bactrim

“I have heard there are troubles of more than one kind. Some come from ahead and some come from behind. But I've bought a big bat. I'm all ready you see. Now my troubles are going to have troubles with me!”
― Dr. Seuss

“Everybody dies … The thing is, to have a life before we die.”
― John Irving, The World According to Garp

Offline Almost2late

  • Member
  • Posts: 249
  • "My disease stops with me" - Jeff G
Re: My meds ran out almost three weeks ago
« Reply #6 on: July 31, 2014, 01:55:06 PM »
I would encourage you to find out more about the situation in your state and add your voice to advocate for ME and/or proper ADAP funding.

BTW, I will be getting more involved while I am here.. I didn't vote for the ass of a governor who refused assistance from the federal government and who presently is running for re-election.

Hiv meds for ALL who need them should be a right.
Atripla, Bactrim, Azithromycin
Date         CD4's          VL
02/14     13  2.79%    228k+
03/14     52       7%       3k-
04/14     not done          2k-
05/14     184     9%       595
06/14     117     8%       235  switched off Atripla
08/14     135    10%      110  stopped Azithromycin
Tivicay, Truvada, Bactrim

“I have heard there are troubles of more than one kind. Some come from ahead and some come from behind. But I've bought a big bat. I'm all ready you see. Now my troubles are going to have troubles with me!”
― Dr. Seuss

“Everybody dies … The thing is, to have a life before we die.”
― John Irving, The World According to Garp

Offline rockandahardplace

  • member
  • Posts: 2
Re: My meds ran out almost three weeks ago
« Reply #7 on: July 31, 2014, 04:51:19 PM »
Thank you all for the responses; I sincerely appreciate it.  When I started the meds in October of last year, it was not long after the government shut-down and I thought about all kinds of things that might happen to prevent me from getting them.  But I never thought that seven months into the regimen they might lose my file. It just seems so ridiculous.  I will call my case worker and ask what I can do to possibly speed things up.  My friend actually has some Truvada and Norvir and is going to see if he can find some Prezista.  It's exhausting to think that I will be chasing these meds for the rest of my life.

Offline zach

  • Member
  • Posts: 1,456
  • not fade away
Re: My meds ran out almost three weeks ago
« Reply #8 on: July 31, 2014, 05:16:28 PM »
jeff, mods, et all

i'm a member of another group, whatever system they use we have the option of making a thread a "sticky" note of things that rate as required reading. sort of a step towards someone editing the info into an official article.

just an idea, works well over there, i know the lessons are pretty thorough, but still

good stuff in this thread
gonna go up to the mountain, for to find a little peace
looking over the valley, for the beauty i see
out across the hills, forevermore

Offline eric48

  • Member
  • Posts: 1,177
  • @HIVPharmaCure & tinyurl.com/HIVPharmaCure
Re: My meds ran out almost three weeks ago
« Reply #9 on: July 31, 2014, 06:19:49 PM »
Now, I've been off the meds for almost 3 weeks at this point

My humble understanding:
Your VL most likely back to pretreatment levels

Your Cd4 will go downwards but not as fast as your VL

So,  your current risk ,is, in a worst case scenario, similar to what it was rigth before treatment

In a nutshell,if your pre treatment risk was moderate, then your current risk is moderate too

This may guide you on how fast you need to react

Taking meds,even full combo, for 1 or 2 weeks, without being sure you can continue,100 percent adherent untill you are back to UD,  is calling for (future) trouble

While this matter requires full attention and effort, you may want to adjust your sense of urgent to your pretreatment risk level

Mobile.eric
NVP/ABC/3TC/... UD; CD4 > 1000; CD4/CD8 ~ 2.0   safety stock : 2 months

Offline a2z

  • Member
  • Posts: 193
Re: My meds ran out almost three weeks ago
« Reply #10 on: August 04, 2014, 04:17:02 AM »
Thank you all for the responses; I sincerely appreciate it.  When I started the meds in October of last year, it was not long after the government shut-down and I thought about all kinds of things that might happen to prevent me from getting them.  But I never thought that seven months into the regimen they might lose my file. It just seems so ridiculous.  I will call my case worker and ask what I can do to possibly speed things up.  My friend actually has some Truvada and Norvir and is going to see if he can find some Prezista.  It's exhausting to think that I will be chasing these meds for the rest of my life.

First, good luck.  Do whatever it takes short of crime to get your medications.  This is survival.

Second, I had insurance issues for a month a few years back (I didn't even remember it until I looked at my signature again tonight) - I got through them and the lesson I learned: if possible, build up a small stockpile.  For me that meant filling my meds religiously every 28 days until I had a month's worth.  That recently came in handy as we switched from one health insurance plan to another at work and my stockpile took a hit (down to about 2 weeks) -- unfortunately now Truvada requires a prior auth with most health insurance companies.

In addition to the lesson learned I got lucky; no resistance issues.   So, fix the issues, come up with a plan and have hope.
Dates are blood draw dates:
5/23/14: CD4 895 --.-% VL UD - Truvada/Isentress
09/21/09: CD4 898 27.0% VL 120 - back on track, same meds.High level enzymes, but less so
06/15/09: CD4 478 21.8% VL 1150 - high liver enzymes... looks like I may not be resistant
05/22/09: Fixed insurance, resumed medicine
04/17/09: Ran out of medicine, could not resolve insurance problems
04/01/09: CD4 773 28% VL 120 - high liver enzymes
12/01/08: CD4 514 23% VL 630
10/17/08 started Reyataz, Norvir and Truvada. -- possibly minor neuropathy, but otherwise okay.
9/10/08: CD4 345 17%, VL > 78K
8/18/08: CD4 312 18%, VL > 60K (considering meds)
12/19/07: CD4 550 28% VL > 100K (no meds yet)
Diagnosed 10/23/07

 


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