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Author Topic: Time for Meds. Looking for Assistance  (Read 2744 times)

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Offline lovedays08

  • Member
  • Posts: 9
Time for Meds. Looking for Assistance
« on: December 25, 2008, 10:02:09 AM »
Hello. Well, my 3rd round of labs showed no improvement since the diagnosis in September. I had hoped the Super Vitamins, the pounds of Swiss chard and other healthy foods would have stimulated my system. But, it's the same. Which is CD4 just under 300 and a jump to VL40,000. Doc says it's time for meds. I agree.

So, he wants me to take Atripla. Makes sense, except for the cost. I make too much for the local organization to help. I could fudge the numbers for a while, but would rather not. I pay my own insurance, which is high deductible, no co-pay, no scripts. So, I'm looking at having to pay cash for these meds. That will be problematic.

Does anyone know if the Pharmaceutical companies are willing to help? I have a stack of paperwork to review. Any other suggestions would be appreciated.

Happy Holidays, Everyone.

mj

Offline Nashvegas

  • Member
  • Posts: 196
Re: Time for Meds. Looking for Assistance
« Reply #1 on: December 25, 2008, 11:48:47 AM »
Hey there MJ.  Merry Christmas.

I know where you're coming from.  I do have insurance coverage for prescriptions, but it's limited to $1,500 a year.  So one month on meds would wipe that out.  My assets are too substantial to qualify for AIDS drug assistance programs. 

Your profile doesn't say where you live, but you may want to consider enrolling in a clinical trial.  I'm enrolled in a clinical trial to test the efficacy of extended release Viramune.  I started this past July, and have been really happy with this regimen -- no side effects and quickly went undetectable.  Barring unforeseen problems, I'll be able to continue with the clinical trial for three full years.  Not only does the trial cover the cost of my meds, it also covers extensive lab work, and even pays me a small travel allowance.  I would only advise enrolling in a trial of meds that you're comfortable with, but my trial has been a Godsend to me.  Over the course of three years, it'll save me something like $60,000. 

The problem is that most clinical trials are conducted only in certain locations.  If you don't live in a major city, it could be harder to find one to enroll in.  But conceivably, it could make sense to participate even if you have to travel to another city to do so. 

Anyway, feel free to PM me, and let us all know where you are so that we can be of more assistance.



8/12/06 - sero-conversion
9/14/06 -- Positive Test results confirmed
9/21/06 -- CD4 - 586; viral load 8,000; 29%
12/25/06 -- CD4 - 373; VL 2,800; 23%
2/10/07 - CD4 - 228; VL 865; 25%
3/15/07 -  CD4 - 365 (no viral load test)
5/1/07 = CD4 - 341; VL 4,358; 27%
8/1/07 - CD4 - 315; VL - 2,300; 25%
9/20/07 - CD4 - 378
11/22/07 - CD4 - 257; VL 7,300;
2/27/08 - CD4 231 (16.5 %), VL 5,960
5/20/08 - CD4 229 (18.3%), VL 11,100
6/17/08 - CD4 166 (14.5%), VL 9,030
6/17/08 - STARTED VIRAMUNE + TRUVADA
7/2/08 - CD4 272 (20%), VL 113  :-)
7/16/08 - CD4 -217 (21.1 %), VL - Undetectable
7/30/08 - CD4 - 220 (20.4%). VL - 92
8/14/08 - CD4 - 280 (22%) VL-undetectable
1/04/09 - CD4 - 250 (28%) VL-UD
5/15/09 - CD4 -393 (28%) VL-UD
8/15/09 - CD4-346, (26%) VL-UD
11/15/09 - CD4-373 (28%)

Offline lovedays08

  • Member
  • Posts: 9
Re: Time for Meds. Looking for Assistance
« Reply #2 on: December 26, 2008, 12:25:57 PM »
Hi NashVegas,

Thanks for the post. I am in Houston, TX. Any direction on how to find a trial would be appreciated. I did hit a couple of links in my digging around but nothing came up. The info I found seemed rather dated.

Glad you've had success on your end!
Have a Happy New Year.
mj

Offline freewillie99

  • Member
  • Posts: 311
Re: Time for Meds. Looking for Assistance
« Reply #3 on: December 26, 2008, 02:30:05 PM »
I am in Houston, TX. Any direction on how to find a trial would be appreciated.

LD08:

This might be something to check out:

http://clinicaltrials.gov/ct2/show/NCT00745823?term=NCT00745823&rank=1&show_locs=Y#locn

It's a trial testing once daily Isentress in combination with Truvada.  Looks like they have a Houston location that's currently recruiting.  Best of luck getting in.  I'd love to hear if you do.
Beware Romanians bearing strange gifts

Offline Nashvegas

  • Member
  • Posts: 196
Re: Time for Meds. Looking for Assistance
« Reply #4 on: December 26, 2008, 02:44:56 PM »
Houston, huh?  You're probably in luck then.  I checked out the Clinicaltrials.gov website, and found that the Viramune clinical trial I'm enrolled in has a Houston location, and they're still recruiting volunteers.  In Houston, I'm sure that there are may other clinical trials, like the Isentress one, that would be open to you, subject to your satisfying the criteria for enrollment. 

I gather that many clinical trials last only for 48 weeks, so the possibility of staying enrolled in a clinical trial for up to three years -- like my extended release Viramune study -- was a real plus for me. 

If you're interested in learning more about the same clinical trial I'm involved with call the Boehringer Ingelheim Study Coordinator at 800-542-6257, ext 4, or email them at: clintriage.rdg@boehringer-ingelheim.com

Cheers!
8/12/06 - sero-conversion
9/14/06 -- Positive Test results confirmed
9/21/06 -- CD4 - 586; viral load 8,000; 29%
12/25/06 -- CD4 - 373; VL 2,800; 23%
2/10/07 - CD4 - 228; VL 865; 25%
3/15/07 -  CD4 - 365 (no viral load test)
5/1/07 = CD4 - 341; VL 4,358; 27%
8/1/07 - CD4 - 315; VL - 2,300; 25%
9/20/07 - CD4 - 378
11/22/07 - CD4 - 257; VL 7,300;
2/27/08 - CD4 231 (16.5 %), VL 5,960
5/20/08 - CD4 229 (18.3%), VL 11,100
6/17/08 - CD4 166 (14.5%), VL 9,030
6/17/08 - STARTED VIRAMUNE + TRUVADA
7/2/08 - CD4 272 (20%), VL 113  :-)
7/16/08 - CD4 -217 (21.1 %), VL - Undetectable
7/30/08 - CD4 - 220 (20.4%). VL - 92
8/14/08 - CD4 - 280 (22%) VL-undetectable
1/04/09 - CD4 - 250 (28%) VL-UD
5/15/09 - CD4 -393 (28%) VL-UD
8/15/09 - CD4-346, (26%) VL-UD
11/15/09 - CD4-373 (28%)

Offline aztecan

  • Member
  • Posts: 5,399
  • 29 years positive, 57 years a pain in the butt
Re: Time for Meds. Looking for Assistance
« Reply #5 on: December 27, 2008, 08:37:56 AM »
Hey Lovedays,

To answer your question, yes the pharmaceutical company may allow you to take part in an assistance program. I've not dealt with them much because most people have other options available.

Keep in mind that even big pharma assistance is limited and, eventually, you will need to find another way to pay for your meds.

Also keep in mind that this assistance usually isn't available if there is any other option to the individual.

Since you are paying for it, is it possible for you to look for new insurance? At the very least, find an insurance plan that offers prescription coverage.

While the suggestion of a clinical trial may be fine, there are some caveats. Clinical trials are great if you can tolerate the medication in question and not part of the control group.

Another issue is what will you do when the clinical trial ends, as they all do? If memory serves, Eric (Life) did this and then had to finally switch over to his private medical insurance.

In other words, a clinical trial may give you more time to consider your next step, but it isn't a final solution.

I have discussed situations like this with several people over the years. In one case, the only option the person had to was to divorce his wife. She was the breadwinner and was at the limit of allowed income. Even so, they could not afford to pay for his meds out of their own pockets.

Luckily, she lost her job and they didn't have to divorce. She now works in a different field making less money, so that situation has been resolved.

Another individual was considering taking a job that paid more than allowed to be enrolled in the local ASO. Nice money, but no benefits. That means that person will have to foot the bill for all doctor visits, all labwork and all, of course, all meds.

When he and I talked about it, I mentioned he could make very good money, but see no benefit from that income because much of it would go for medication. The other option was to stay with the job he had, which paid less but allowed his enrollment in the local ASO as well as the state medical insurance pool.

I am afraid you may be faced with a similar tough decision. The easiest option would be to arrange for better insurance coverage, if that is possible.

Worst case scenario may be to find another job that includes benefits, i.e., health coverage that is worth having, or to take a job that pays less but allows you to enroll in your local ASO and access the benefits available there.

Sorry to be such a wet blanket here, but I'm afraid there are times we have to make tough choices. I don't know about you, but paying more than $1,700 a month for Atripla isn't something I could afford.

Hope things work out for you.

HUGS,

Mark


« Last Edit: December 27, 2008, 08:48:27 AM by aztecan »
"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Offline lovedays08

  • Member
  • Posts: 9
Re: Time for Meds. Looking for Assistance
« Reply #6 on: January 01, 2009, 11:00:59 AM »
Thanks all for the insights and information. So many variables and decisions! My first effort has been to call my insurance company and they can move me to coverage that has a script plan that's affordable (considering the $1700/mo option!).

Now, that sounds WAY too easy. It's a lateral move within UHC. I wonder, will they ask questions regarding preexisting etc? I've had the insurance for 4 years.

They mentioned a "formulary" on which I'm certain Atripla is NOT listed. LOL. I guess I'll call the agent and ask him the pointed question, "is Atripla covered?" At which point he will have info as to my situation.

I don't want to shoot myself in the foot here. But I have to give it a go.

And Matt, thanks for the thoughts. I definitely will take your advice under consideration if Plan A doesn't work out.

Happy New Year to everyone!


Offline Assurbanipal

  • Member
  • Posts: 2,173
  • Taking a forums break, still see PM's
Re: Time for Meds. Looking for Assistance
« Reply #7 on: January 01, 2009, 04:40:33 PM »

They mentioned a "formulary" on which I'm certain Atripla is NOT listed. LOL. I guess I'll call the agent and ask him the pointed question, "is Atripla covered?" At which point he will have info as to my situation.

Hi

Odds are that Atripla is covered.   I spent a few days googling formularies on the Web some months back; most formularies for private insurance did cover Atripla and almost all other common HAART.  Sometimes it will be in a tier with a higher co-pay but it is almost always in the formulary.

Also no need to disclose more than needed to the agent -- just ask for the formulary website and you can look it up yourself.  Many formularies are available through Google without a password, but every plan will have a way for you to look up drugs either online or on paper.  (The reason a plan or insurer sets up a formulary is to try to guide patients to use more (cost) effective drugs.  There's no point in setting up a formulary if it is secret from the patients/members.)

Best wishes
A
5/06 VL 1M+, CD4 22, 5% , pneumonia, thrush -- O2 support 2 months, 6/06 +Kaletra/Truvada
9/06 VL 3959 CD4 297 13.5% 12/06 VL <400 CD4 350 15.2% +Pravachol
2007 VL<400, 70, 50 CD4 408-729 16.0% -19.7%
2008 VL UD CD4 468 - 538 16.7% - 24.6% Osteoporosis 11/08 doubled Pravachol, +Calcium/D
02/09 VL 100 CD4 616 23.7% 03/09 VL 130 5/09 VL 100 CD4 540 28.4% +Actonel (osteoporosis) 7/09 VL 130
8/09  new regimen Isentress/Epzicom 9/09 VL UD CD4 621 32.7% 11/09 VL UD CD4 607 26.4% swap Isentress for Prezista/Norvir 12/09 (liver and muscle issues) VL 50
2010 VL UD CD4 573-680 26.1% - 30.9% 12/10 VL 20
2011 VL UD-20 CD4 568-673 24.7%-30.6%
2012 VL UD swap Prezista/Norvir for Reyataz drop statin CD4 768-828 26.7%-30.7%

Offline Inchlingblue

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  • Posts: 3,119
  • Chad Ochocinco PETA Ad
Re: Time for Meds. Looking for Assistance
« Reply #8 on: January 19, 2009, 07:50:31 PM »
I'm not exactly sure what the bet way to go about this is but generic Atripla is manufactured in India (called Viraday) and it runs approximately $220. per month. I know there are online pharmacies that sell it but have not personally used any. I've just done the initial research in case I am ever at a point that I need to purchase medications myself. Maybe ask on this or other forums for anyone who has gone this route?

Offline Inchlingblue

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  • Chad Ochocinco PETA Ad
Re: Time for Meds. Looking for Assistance
« Reply #9 on: January 19, 2009, 07:53:58 PM »
If you have any specific insurance questions (you mentioned pre-existing conditions above), thebody.com has an excellent forum in which you can "Ask The Experts" specific questions, one of the forums is specifically deals with Workplace/Insurance questions:

http://www.thebody.com/Forums/AIDS/Workplace/index.html

 


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