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Author Topic: Need input please.  (Read 2255 times)

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Offline TNDude

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  • Posts: 23
Need input please.
« on: November 04, 2009, 05:11:12 PM »
I will try to make this as short as possible. I have been on Atripla since March on a government/state assistance program. I just found out the pharmacy can't renew my prescription because I was dropped from the program. I called my doc/hiv center and they show that they re-certified me for the program in August. Now, apparently there is a waiting list. They are checking on it some more and will get back to me tomorrow. Needless to say I'm worried to death. I have 8 Atripla pills left and then I'm out. I don't know what to do. Don't know if this will be fixed, and am kind of a wreck at the moment. I'm a full time student finishing school in May with no income. Do I skip a day in between taking my Atripla to make it last longer? Do I try to apply for aid from the pharmaceutical companies? I know I need to relax till I hear back from them but at the same time I can't help but start to think these things. Any suggestions? Thanks so much.

Offline alejandroglz

  • Member
  • Posts: 40
Re: Need input please.
« Reply #1 on: November 05, 2009, 02:04:04 AM »
call your local AIDS Organization AS SOON AS POSSIBLE!!!!
they will help you

National AIDS Hotline:
1-800-CDC-INFO (1-800-232-4636)
TTY: 1-888-232-6348
Hours: 24 hours a day, 7 days a week
E-mail: cdcinfo@cdc.gov
In English, en Español.

05/09 poz
05/09 cd4 320 vl 500,000+
06/09 cd4 560 vl 442,000
07/09 cd4 460 vl 125,000 
09/09 cd4 389 vl 140,000
10/09 cd4 349 vl 148,000
11/09 cd4 350 vl 150,000 start Isentress/Truvada (11-18-09)
12/09 cd4 509 vl undetectable! As 12-03-09 + H1N1 vaccine
04/10 cd4 560 vl und
08/10 cd4 580 vl und start Isentress 2*400ml once a day/1truvada

Uno no vino al mundo a sufrir, arriba ese animo!

Offline Inchlingblue

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Re: Need input please.
« Reply #2 on: November 05, 2009, 09:34:11 AM »
Maybe these people can help:

http://www.atripla.com/Content.aspx?bmscontentpg=hiv-med-cost#contactPartnership


There was a study called FOTO in which people took Atripla "Five days on, Two days off, basically taking it Mon-Fri with weekends off. It seemed to work for those who were already undetectable (because Atripla stays in the bloodstream for a while after one stops). And there were fewer toxicities and cost. This is something to consider, in consultation with your doctor, when you are able to get the meds again, so that you can build up an emergency supply.

There is help out there, be persistent, the ADAP people are supposedly helping people in your shoes get the meds through the drug company, etc.

It important not to just stop Atripla altogether, because of the half-life, it could lead to resistance. Not saying this to scare you but it's good to know all the facts.

As a general recommendation: I have insurance and I make sure to re-fill as soon as they allow every month, which is every 22 days. This gives me an extra week of meds each month so I have been able to build a stockpile of meds in case I lose coverage, I have about 3 months extra in case of emergency. I highly recommend to everyone to do this if they are able to.

Be persistent with the ADAP people. Don't freak out, remain calm and be courteous to them but don't let the ball drop. I had read that waiting lists were instituted as far as not taking any new clients but for those already approved, they were not being dropped, so make sure this is not some sort of mistake, which it might be.
« Last Edit: November 05, 2009, 09:36:21 AM by Inchlingblue »

Offline hotpuppy

  • Member
  • Posts: 555
Re: Need input please.
« Reply #3 on: November 08, 2009, 08:07:44 PM »
I have about 3 months extra in case of emergency. I highly recommend to everyone to do this if they are able to.

I'll add to this... especially be nice when asking for help.  Nobody likes a jerk.

You might also ask around and see if anyone has built up a reserve.  Someone with a large reserve might be willing to just give you a bottle.

In most areas there are organizations that can help you to stay on meds.  Your ASO should be the first stop in your search for help.
Don't obsess over the wrong things.  Life isn't about your numbers, it isn't about this forum, it isn't about someone's opinion.  It's about getting out there and enjoying it.   I am a person with HIV - not the other way around.

Offline mecch

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  • Posts: 12,156
  • red pill? or blue pill?
Re: Need input please.
« Reply #4 on: November 08, 2009, 08:27:53 PM »
Update please...  Are you facing a gap in your daily dose... ?
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline TNDude

  • Member
  • Posts: 23
Re: Need input please.
« Reply #5 on: November 09, 2009, 08:06:50 PM »
Well...I've talked with my case manager. Apparently the "ball was dropped" by one or more people. I was dropped from the TN state plan even though I re-certified back in August. Now, there is a waiting list. He said he was calling around and trying everything he could to get me back on it or help from the drug companies themselves. I am down to 3 pills now. I read the study about the 5 days on, 2 days off, on Atripla. I may have to try that. I'm not sure. Calling my case mgr in the morning to see what he found out. On a side note, because I was  so worried, I ordered Viraday (generic Atripla) from an overseas company last week. Probably wont get that for another week or so though. Wish I knew someone with a week's worth of Atripla they would sell me, but alas I don't. Hopefully my call in the morning will reveal some better news as time is not on my side at this point.

Offline Inchlingblue

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Re: Need input please.
« Reply #6 on: November 09, 2009, 08:12:14 PM »
I'm not on Atripla or I would offer you some. It wouldn't be bad idea to start a thread asking if anyone has any extra Atripla they can "share" until you sort all of this out, or at least until you get the Viraday.


Skipping two days (not more than that) might be an option that buys you a little time, as long as you are undetectable, as per the FOTO study. I personally would not skip two days in a row but do one day on one day off, repeat.
« Last Edit: November 09, 2009, 08:15:04 PM by Inchlingblue »

Offline TNDude

  • Member
  • Posts: 23
Re: Need input please.
« Reply #7 on: November 09, 2009, 08:20:59 PM »
I have been undetectable since May/June. I may skip tonight and take it again tomorrow and repeat. I'm not sure. Certainly not a situation I want to be in.

Offline pos2007

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  • Posts: 116
Re: Need input please.
« Reply #8 on: November 09, 2009, 08:33:45 PM »
 I  know   how  frustrating  this  can  be. See the  link  below  for assistance
https://www.atripla.com/pdfs/Atripla_PAP_Application.pdf
« Last Edit: November 09, 2009, 09:16:39 PM by pos2007 »
Diagnosed  CD4 138 VL. 38,000
Partner Diagnosed CD4 <20  VL.  488,000

Offline Inchlingblue

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Re: Need input please.
« Reply #9 on: November 09, 2009, 08:39:26 PM »
I  know   how  frustrating  this  can  be. I  got  dropped several  times till we finally got  through  all  the  bugs in  the  system  here. The  drug  laws are  pretty  strict and  penalties  pretty  tough  for recycling   the  meds.  I have  tried to  donate  drugs I  couldn't take  before and it  is  not  easy  to  do  it  and  stay out of  the  clink. I  guess  to protect  the  quality  of  the  drug  supply.  I  know  I  can donate  my  excess drugs  for  use in Africa.  I have  been in  the  hospital enough times this  year that I  have a few  to   spare. If  someone  knows a safe verifiable and  legal  way I  can  donate  them  send  me a PM.  I'll try  to  ask  the  pharmacist tomorrow.

If individuals want to give extra meds to each other privately no one is the wiser, especially when dealing with life and death drugs such as those for HIV.

But there are also great organizations, such as Aid For AIDS, that recycle HIV drugs.

www.aidforaids.org

Offline pos2007

  • Member
  • Posts: 116
Re: Need input please.
« Reply #10 on: November 09, 2009, 09:10:27 PM »
You  might try:

 The Atripla Drug  assistance  program
.  Here  is  the  application  form:
 https://www.atripla.com/pdfs/Atripla_PAP_Application.pdf

 others are:
  http://www.rxassist.org/
 http://www.scbn.org/?gclid=CMuozfGq_50CFYJC5godQ1dTpA

There are several  prescription assistance  programs.   Try googling  drug assistance  programs  or prescription assistance  programs.  I  used  to  have  some of  the applications in  a file ,  but  I can't  find  them  tonight.  I  guess I  can't remember  which  file  they  are  in. Hope  this  helps.
Diagnosed  CD4 138 VL. 38,000
Partner Diagnosed CD4 <20  VL.  488,000

Offline skeebo1969

  • Member
  • Posts: 5,707
Re: Need input please.
« Reply #11 on: November 10, 2009, 01:50:20 AM »



   TNdude check your private messages.
I despise the song Love is in the Air, you should too.

Offline TNDude

  • Member
  • Posts: 23
Re: Need input please.
« Reply #12 on: November 10, 2009, 11:30:04 PM »
Just an update...My case mgr is trying to get me some meds while he gets me on some other type of drug program. I have to speak with him again tomorrow. I did manage to get a few pills from a very generous person that should hold me over for about a week. I will keep you posted. Thanks to all who have been so generous.

Offline pos2007

  • Member
  • Posts: 116
Re: Need input please.
« Reply #13 on: November 11, 2009, 01:09:22 AM »
Glad you got some  meds. Did you try this  link listed above/ again below?  I  was told  you  could fax  in  the  completed form and,  if approved  they would contact a pharmacy in your area to get you  some  meds. 

 The Atripla Drug  assistance  program.  Here  is  the  application  form:
 https://www.atripla.com/pdfs/Atripla_PAP_Application.pdf


 
Diagnosed  CD4 138 VL. 38,000
Partner Diagnosed CD4 <20  VL.  488,000

Offline skeebo1969

  • Member
  • Posts: 5,707
Re: Need input please.
« Reply #14 on: November 12, 2009, 08:18:57 AM »


  TNDude,

      Hey, when you talked to your case manager yesterday did they give you any idea when they might be able to get you some Atripla?  Please keep us updated on what your situation is...

   

   
I despise the song Love is in the Air, you should too.

 


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