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Author Topic: Got my mail order meds today  (Read 5061 times)

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Offline Betelgeuse

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Got my mail order meds today
« on: June 15, 2011, 03:03:02 AM »
I thought I was doing so well with this whole thing until today.

As many of you know from my other posts, I am required by my insurance to order meds for chronic conditions in three-month increments.

I am taking a Truvada/Isentress/Bactrim combo.

I received my shipment of meds today.  Opened up a huge UPS thing of. . .  what can only be described as a pharmacy in a box.

I really try not to be dramatic about things, but it took every ounce of effort to hold back the tears.  What the hell did I get myself into?  You'd had to have been here to appreciate the enormity and the volume of these pills. The most I've taken in the past were a few benzos and tried a couple different SSRI's.  I wasn't prepared for all THIS. 

This is what I have to deal with for the rest of my life?!  I thought I was doing so well with my coming-to-terms with my new diagnosis. . .  until today. 

I know I'm being a big baby about this, but I'm truly scared again. 
04/19/11 - Diagnosed positive
04/29/11 - CD4 188 @ 12.5% / VL 18k
05/03/11 - CD4 171 @ unk% / VL 7k
06/04/11 - Start Truvada/Isentress
07/11/11 - CD4 not tested / VL UD
09/07/11 - CD4 252 @ unk% / VL UD

Offline mecch

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  • red pill? or blue pill?
Re: Got my mail order meds today
« Reply #1 on: June 15, 2011, 05:24:57 AM »
Some people experience starting HAART traumatically. Others are rather neutral and yet others are enthusiastic. It seems for you those pills are symbolic of sickness and lifelong responsibilities.  Eventually you might change your mind, either about the treatment, or about HIV itself, and take both in stride.  Many people hardly blink an eye taking their HAART everyday, its routine and banal.

It may seem like a lot of pills in a box, but your HAART itself is just 3 pills a day.  They fit in the tiniest pill box.

The Bactrim you will not be on forever.

The HAART, you may not be on forever because treatment changes.  Try to focus on the the here and now.  Think about all the advantages starting this treatment is going to bring to you, and very very fast.  You'll see.
ďFrom each, according to his ability; to each, according to his needĒ 1875 K Marx

Offline puuchai

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Re: Got my mail order meds today
« Reply #2 on: June 15, 2011, 06:07:45 AM »
Try to see it as your big box of treasure has arrived.I know it's difficult now but it will get better as time goes by.
Wish you all the best...

Offline metekrop

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Re: Got my mail order meds today
« Reply #3 on: June 15, 2011, 07:58:05 AM »
Yea my friend...  This reminds me back in 2008 when I get off the hospital that I was given almost fifteen types of medicines with one full bag with doctorís instructions that I should be taking them for the rest of my life.  When I see those all meds I say it is that day that my life is cut short.  Nonetheless taking these meds have given me my life back.  Now I am left with on a once daily HIV Atripla.  I take this meds just like a daily vitamin and living my absolutely normal life.  The same is going to be true for you too.  Love those meds and will definitely see when they give you life day by day. :) 
Diag on Dec 8, 2000, CD 440 VL 44K, No Meds
Dec/08 - Feb/09 CD< 50 & VL >500k hosp'z.
St. Atripla - July/09 CD 179, VL 197k
Oct/09 CD 300 VL UD Chol 267
Mar/10 CD 468 UD, Ch 220
Aug/10 CD 460 UD, Ch 195
Dec/10 CD 492 UD, Ch 172
Mar/11 CD 636 UD, Ch 201
Aug/11 CD 530 UD, Ch 98
Jan/12 cd 616 UD, ch 189
Jul/12 CD 640 UD, Ch ?
Dec/12 CD 669 Ud, Ch 125
May/7 CD711 Ud, Ch?
Nov/ 22 663 UD, Ch,
April 17 CD 797, UD

Offline leatherman

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Re: Got my mail order meds today
« Reply #4 on: June 15, 2011, 10:19:27 AM »
You'd had to have been here to appreciate the enormity and the volume of these pills.
but that's a good thing! That's not just one month's supply but enough for a whole quarter of a year!! ;D Why summer will be over and Halloween will practically be upon you before you have to get any more meds.

Of course, if you get a 4-a-day 7-day-a-week pill container, and put 3 pills into each slot, one of that kind of pill containers will last you a whole month (that is if you take pills once a day) and you can "hide" the rest of the pills in a storage, out of sight. My pill container like that is about the size of a large paperback novel and holds meds for a whole month. That's not an overwhelming sight at all. ;)

(I remember back in the day when I was taking 28 pills and tablespoons of meds a day. I took so many pills a day, and so many of them were so large, that they filled up the 4 time-of-day-slots (breakfast, lunch, dinner, night) and spilled over in a second day. ::) )

The most I've taken in the past were a few benzos and tried a couple different SSRI's.  I wasn't prepared for all THIS.
LOL well, it's not like you're taking them all at once. :D

Hang in there. Once the novelty of taking meds wears off and becomes just another part of your daily routine, you'll do fine. ;)
leatherman (aka mIkIE)


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

Offline newt

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Re: Got my mail order meds today
« Reply #5 on: June 15, 2011, 06:39:22 PM »
Yer, it's a moment, a big load of meds in a bag first few times round. But personally, I am looking forward to me 4 month delivery in August, it saves so much time, better than hanging round clinic and pharmacy. They go in the drawer til needed.

- matt
"The object is to be a well patient, not a good patient"

Offline Inchlingblue

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Re: Got my mail order meds today
« Reply #6 on: June 15, 2011, 07:37:47 PM »
Shortly after I started taking meds I was filling up two weeks worth of Isentress/Truvada in pill containers while I complained to myself about what a f***ing hassle it is to have to do this. I then had a reality check in which I realized how fortunate I am that I have access to these meds. So many people died before they came out and so many others with HIV/AIDS alive now have no access to them (even in the good ol' US of A).

I haven't complained since.

As an aside: I recommend that you refill the Rx as soon as you can so that you can build up an "emergency" stash. I have about 3 months extra just in case.

Offline Raf

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Re: Got my mail order meds today
« Reply #7 on: June 15, 2011, 10:04:33 PM »

I really try not to be dramatic about things, but it took every ounce of effort to hold back the tears.  What the hell did I get myself into?  You'd had to have been here to appreciate the enormity and the volume of these pills. The most I've taken in the past were a few benzos and tried a couple different SSRI's.  I wasn't prepared for all THIS. 

This is what I have to deal with for the rest of my life?!  I thought I was doing so well with my coming-to-terms with my new diagnosis. . .  until today. 

I know the feeling, in fact each time I have refill my pill container (each 3 days or so) and sometimes even when I have to take them reminds me of this disease, and the fact it won't go away, ever. It's discouraging, even 3 years afterwards I couldn't overcome this feeling.
Dx: 05/14/2008
Latest HIV Meds combo I've been taking:

Kaletra + Combivir (since 05/16/2008 - today)

Offline Betelgeuse

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Re: Got my mail order meds today
« Reply #8 on: June 15, 2011, 10:48:30 PM »
I hate to give myself false hopes, but I have to believe in my heart (for my own sanity) that science could be close to technology that would require a once-a-week injection type regimen or even a cure sometime in our lifetime.

It is this very thought that keeps me optimistic about the future. 
04/19/11 - Diagnosed positive
04/29/11 - CD4 188 @ 12.5% / VL 18k
05/03/11 - CD4 171 @ unk% / VL 7k
06/04/11 - Start Truvada/Isentress
07/11/11 - CD4 not tested / VL UD
09/07/11 - CD4 252 @ unk% / VL UD

Offline Miss Philicia

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Re: Got my mail order meds today
« Reply #9 on: June 15, 2011, 10:53:17 PM »
You shit and piss several times a day -- why are a few pills any different? (assuming you aren't experiencing any side effects, naturally).
"Iíve slept with enough men to know that Iím not gay"

Offline Betelgeuse

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Re: Got my mail order meds today
« Reply #10 on: June 15, 2011, 10:57:26 PM »
Point well taken.
04/19/11 - Diagnosed positive
04/29/11 - CD4 188 @ 12.5% / VL 18k
05/03/11 - CD4 171 @ unk% / VL 7k
06/04/11 - Start Truvada/Isentress
07/11/11 - CD4 not tested / VL UD
09/07/11 - CD4 252 @ unk% / VL UD

Offline LM

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Re: Got my mail order meds today
« Reply #11 on: June 16, 2011, 12:32:04 AM »
I would hate injections once a week. A few pills once a day, having little to no side effects, sounds much better.

Offline mikeyb39

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  • Posts: 921
Re: Got my mail order meds today
« Reply #12 on: June 16, 2011, 12:43:23 AM »
i always thought an implant of some sort would be nice under the skin like they do for some birth control's, that way you would never miss a dose and would just have to have them replaced every six months.  I think i may patent that idea.  lol
11/02/2010  cd4-251, vl-591000
12/09/2010  started Atripla
02/18/2011  cd4-425, vl-800
06/10/2011  cd4-447, vl-70
10/10/2011  cd4-666, vl-80
01/05/2012  swiched med (prezista,norvir ,isentress, )
02/10/2012  cd4-733, vl-UD  Viread removed
06/10/2012  cd4-614, vl-UD
12/14/2012  cd4-764, vl-UD
09/01/2013  cd4-785, vl-UD
03/06/2014. cd4- 1078, VL-UD

Offline Betelgeuse

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Re: Got my mail order meds today
« Reply #13 on: June 16, 2011, 02:13:10 AM »
Shortly after I started taking meds I was filling up two weeks worth of Isentress/Truvada in pill containers while I complained to myself about what a f***ing hassle it is to have to do this. I then had a reality check in which I realized how fortunate I am that I have access to these meds. So many people died before they came out and so many others with HIV/AIDS alive now have no access to them (even in the good ol' US of A).

I haven't complained since.

As an aside: I recommend that you refill the Rx as soon as you can so that you can build up an "emergency" stash. I have about 3 months extra just in case.

REGARDING the reserve that everyone talks about, how does that work?  I am not eligible to order another "batch" until the time comes (when my insurance company deems I'm close to running low).  Oxymoronishly, I think it's prudent for me to have a 3-month stash.  How did you go about building this up?
« Last Edit: June 16, 2011, 02:16:00 AM by Betelgeuse »
04/19/11 - Diagnosed positive
04/29/11 - CD4 188 @ 12.5% / VL 18k
05/03/11 - CD4 171 @ unk% / VL 7k
06/04/11 - Start Truvada/Isentress
07/11/11 - CD4 not tested / VL UD
09/07/11 - CD4 252 @ unk% / VL UD

Offline mecch

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Re: Got my mail order meds today
« Reply #14 on: June 16, 2011, 03:47:37 AM »

It is this very thought that keeps me optimistic about the future. 

I really encourage you to be optimistic about the HAART for right now, your life. Today and the next few months. It is going to work.  You are about to benefit from years of great research, a massive investment in this one disease.   You don't have to be hoping for a cure to be optimistic.  The HAART is the thing that will make you optimistic about your life, and your future, with or without a cure.  But yeah, of course we want the cure.
ďFrom each, according to his ability; to each, according to his needĒ 1875 K Marx

Offline bocker3

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Re: Got my mail order meds today
« Reply #15 on: June 16, 2011, 07:28:57 AM »
REGARDING the reserve that everyone talks about, how does that work?  I am not eligible to order another "batch" until the time comes (when my insurance company deems I'm close to running low).  Oxymoronishly, I think it's prudent for me to have a 3-month stash.  How did you go about building this up?
Your insurance company should be able to tell you when they will allow you to order your refill (or the pharmacy can find out).  Typically I've seen a 1-4 week "early" window.  They have to allow for the mail to work and not risk you running out.  If you order at the earliest possible time, you will slowly build that reserve.  I have a 6 month reserve myself.  It helps me sleep better to know that if something happened to my insurance, I'd have at least 6 months to fix it.

Mike
Atripla - Started 12/05
Reyataz/Norvir - Added 6/06
Labs - Pre-Meds
Sep05 T=350/25% VL98,559
Nov05 288/18%  47,564
Current Labs
May2013 691/31% <20

Offline Inchlingblue

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Re: Got my mail order meds today
« Reply #16 on: June 16, 2011, 08:27:13 AM »
REGARDING the reserve that everyone talks about, how does that work?  I am not eligible to order another "batch" until the time comes (when my insurance company deems I'm close to running low).  Oxymoronishly, I think it's prudent for me to have a 3-month stash.  How did you go about building this up?

When I filled my first Rx, before starting meds, my numbers were still OK so I waited one month after I got the first Rx to actually start taking the meds. This gave me a one month lead.

After that, as Bocker says, insurance companies will let you fill the Rx a little earlier. In my case, which is dispensed monthly, the Rx goes through on the pharmacy's computer every 24 days. My mail order pharmacy is aware of this and they set up automated calls to remind people. This ends up being 14 refills per year instead of 12 if one were to do it once every 30 or so days.

Since you get a 3-month supply you can ask the pharmacy how soon the next Rx will go through. I'm pretty sure you'll be able to fill the Rx sooner than the actual cut-off 90 days. If you do this repeatedly you'll start building a reserve.

Offline Miss Philicia

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Re: Got my mail order meds today
« Reply #17 on: June 16, 2011, 08:39:06 AM »
Betelgeuse, you really don't need more than a 4 weeks buffer. The ones here recommending anything larger are slightly paranoid types.

Six month reserve bocker? Seriously, girl.
"Iíve slept with enough men to know that Iím not gay"

Offline Assurbanipal

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Re: Got my mail order meds today
« Reply #18 on: June 16, 2011, 09:20:25 AM »
Betelgeuse, you really don't need more than a 4 weeks buffer. The ones here recommending anything larger are slightly paranoid types.

Six month reserve bocker? Seriously, girl.

I don't agree with this.  I think it might be reflective of your own (Miss P's) experience but not of Betelgeuse's situation.

He isn't just building up a reserve against screw-ups at the pharmacy -- he is building up a reserve against the possibility of job loss and loss of coverage, against changes in his employer's medical plan, against the need in either of those cases to spend a lot of time on an ADAP waiting list (and even though Seattle is a liberal place -- the state of Washington goes back and forth, so the potential of a waiting list is there -- even more so if one might move for a new job)

That said, Betelgeuse, it is just a reserve against risks -- not something to stress over.  Typically mail order pharmacies let you order ahead, as several people here have already said.  I like Inchling's strategy of waiting a month to start as well, but just to be clear, that is a strategy ONLY for people with good numbers.  Since you are already on Bactrim it would be a LOUSY strategy for you personally. 

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 Miss Philicia

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Re: Got my mail order meds today
« Reply #19 on: June 16, 2011, 09:44:23 AM »
I don't agree with this.  I think it might be reflective of your own (Miss P's) experience but not of Betelgeuse's situation.

He isn't just building up a reserve against screw-ups at the pharmacy -- he is building up a reserve against the possibility of job loss and loss of coverage, against changes in his employer's medical plan, against the need in either of those cases to spend a lot of time on an ADAP waiting list (and even though Seattle is a liberal place -- the state of Washington goes back and forth, so the potential of a waiting list is there -- even more so if one might move for a new job)

Yep, and all of those things you just listed have mostly happened to me over the past 20 years and I've never needed such excessive "reserves"... just sayin'

But go ahead and ramp up this poor child's anxiety levels excessively -- it will do wonders.
"Iíve slept with enough men to know that Iím not gay"

Offline leatherman

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Re: Got my mail order meds today
« Reply #20 on: June 16, 2011, 10:42:27 AM »
everyone's experiences are valid. Some of us are worriers and some are not. Some have had unfortunate experiences and some have not. Frequently people who have had really bad circumstances are prone to a lot of caution afterwards and frequently pass those warnings/precautions along. some of us have actually had 2 months or more worth of time when we would have been without meds due to circumstances beyond our control and that's why there's a precautionary note to stock pile meds, if possible.

Depending on your part of the world, and the unknown future we all face, if one is able to provide themselves a bit of security for a source of medications during unfortunate circumstances, there isn't any harm is taking the precaution of stock piling at least a month, if not more, worth of medications.
leatherman (aka mIkIE)


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

Offline Hellraiser

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Re: Got my mail order meds today
« Reply #21 on: June 16, 2011, 10:47:29 AM »
Yep, and all of those things you just listed have mostly happened to me over the past 20 years and I've never needed such excessive "reserves"... just sayin'

But go ahead and ramp up this poor child's anxiety levels excessively -- it will do wonders.

It's not excessive to have a slightly larger back up than one month.  I would say 6 weeks to 2 months is the lowest I feel comfortable with.  Although while the mail order indian pharmacies are a possibility i think of it as having access just in a round about and more expensive way.  1 month is a great starter but if you are thinking about changing jobs you could get lost out in the cold with only 1 month's supply.

I do agree that 6 months seems like someone's stockpiling for nuclear winter :)

Offline Inchlingblue

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Re: Got my mail order meds today
« Reply #22 on: June 16, 2011, 08:44:39 PM »
I wouldn't listen to Miss P on this one.

I know that if I lost coverage I would not qualify for ADAP so it wouldn't be that easy to access meds unless I used up my modest nest egg at which point I could then get ADAP and all sorts of public assistance.

In the US if you don't have a job with good insurance you better either be rich or be dirt poor, because if you're in the middle you're screwed when it comes to health insurance coverage.

Everyone's situation is different. I don't want to come close to dying and lose all my money before I could then get on disability and public assistance and not have to worry anymore about accessing meds. Just sayin'

« Last Edit: June 16, 2011, 08:47:12 PM by Inchlingblue »

Offline buginme2

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Re: Got my mail order meds today
« Reply #23 on: June 16, 2011, 08:53:06 PM »
I worried about this for awhile. I have about a 3 week reserve built up and am slowly building a couple extra each month.  I'm not so worried anymorr since I take Atripla.  If anything happens even thouh I wouldnt qualify for ADAP or other assistance I could buy generic Atripla online.

Offline Miss Philicia

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Re: Got my mail order meds today
« Reply #24 on: June 16, 2011, 09:01:51 PM »
I wouldn't listen to Miss P on this one.

I know that if I lost coverage I would not qualify for ADAP so it wouldn't be that easy to access meds unless I used up my modest nest egg at which point I could then get ADAP and all sorts of public assistance.

In the US if you don't have a job with good insurance you better either be rich or be dirt poor, because if you're in the middle you're screwed when it comes to health insurance coverage.

Everyone's situation is different. I don't want to come close to dying and lose all my money before I could then get on disability and public assistance and not have to worry anymore about accessing meds. Just sayin'



Actually, fyi, I did at one time have a high(ish) paying job when I lived in NYC... in fact I passed through three of them after my diagnosis. I also was laid off after 8 years on one of them, at which time I went on COBRA.  Blah blah blah, I could go on and on. And guess what, my lay off happened 2 months before Osama bin Laden rammed airplanes into the WTC -- have a guess what it was like to be unemployed and trying to get a job interview in Manhattan at that time.  But you're right, I simply know nothing about any of this. How utterly silly of me.

So Inchling, do you recommend having a 3 month buffer, 6 month buffer, or 12 month buffer? Also please go into detail why one is better than the other.  Also, once you save up your 12 month buffer you could suddenly need to go on an entirely new drug regimen, and then WHOA WHAT IF YOU LOST YOUR JOB THAT NEXT MONTH.  Seriously, lots of shit can happen in life. Like, if the Rapture occurs do you recommend a larger buffer, say perhaps 2 years? Or 3? Should I go on?
"Iíve slept with enough men to know that Iím not gay"

Offline Betelgeuse

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Re: Got my mail order meds today
« Reply #25 on: June 16, 2011, 09:48:32 PM »
Well, you're not actually missing out on anything building a reserve, and it takes no more effort to order just a little bit earlier.  These meds have a fairly long shelf life so why NOT build up as big a reserve as you can?

Of course with my luck, they'll come out with a cure the moment I build up a 6-month reserve.

. . . if only . . .
04/19/11 - Diagnosed positive
04/29/11 - CD4 188 @ 12.5% / VL 18k
05/03/11 - CD4 171 @ unk% / VL 7k
06/04/11 - Start Truvada/Isentress
07/11/11 - CD4 not tested / VL UD
09/07/11 - CD4 252 @ unk% / VL UD

Offline bocker3

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Re: Got my mail order meds today
« Reply #26 on: June 16, 2011, 10:17:43 PM »
I have a 6 month buffer of meds for the same reason I try to keep a 6 month liquid reserve of living expenses -- because it is prudent and I can.   If I lose my job I have time to find a job that will get me back on insurance and I can still pay the mortgage.  I am not a worrier by nature -- but I am an ex-Boy Scout (Be Prepared).
If you think it is excessive, fine -- you needn't keep one that long.

To each their own.

Mike
Atripla - Started 12/05
Reyataz/Norvir - Added 6/06
Labs - Pre-Meds
Sep05 T=350/25% VL98,559
Nov05 288/18%  47,564
Current Labs
May2013 691/31% <20

Offline Miss Philicia

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Re: Got my mail order meds today
« Reply #27 on: June 16, 2011, 10:46:37 PM »
I quit Boy Scouts after three weeks because they were making me learn how to tie knots in ropes.
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Offline Hellraiser

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Re: Got my mail order meds today
« Reply #28 on: June 17, 2011, 03:54:46 AM »
I quit Boy Scouts after three weeks because they were making me learn how to tie knots in ropes.

You mean you didn't stick around long enough for the buggery badge?

Offline mecch

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Re: Got my mail order meds today
« Reply #29 on: June 17, 2011, 04:05:40 AM »
I have a 6 month buffer of meds for the same reason I try to keep a 6 month liquid reserve of living expenses -- because it is prudent and I can.   If I lose my job I have time to find a job that will get me back on insurance and I can still pay the mortgage.  I am not a worrier by nature -- but I am an ex-Boy Scout (Be Prepared).
If you think it is excessive, fine -- you needn't keep one that long.

To each their own.

This is all Suze Orman certified and I agree, if one can manage a personal safety net, why not? Its a comfortable feeling and we have ALL seen friends, neighbors, or family members crash to dire straits because there is no safety net.
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Offline Assurbanipal

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Re: Got my mail order meds today
« Reply #30 on: June 17, 2011, 10:15:11 AM »
Miss P

I was not questioning your experiences so much as the timing of them versus considerations for someone diagnosed today.  (Although, basing a discussion on the experience of those who did ok, has a certain problem of survivorship bias.)

Building a reserve of medications is effectively insurance against the risk of a treatment interruption.  And the value of avoiding a  treatment interruption has gone up over time:

First, the benefit of getting on and staying on the drugs is much better understood -- meaning that it should be assigned a greater value than in the past:
- we now have 16 years experience that HAART works -- the longer the time period of efficacy is demonstrated, the greater the value
- back then there serious questions as to whether people might improve their health with periodic treatment interruptions.  For people who start with low tcell counts that question has been resolved -- and it lands securely on the side of not interrupting treatment
- drugs are better with fewer major disaabling side effects-- so the personal cost benefit trade off of being on drugs tilts much more towards drugs

Second the pathways to getting alternative coverage are much harder
- we are in a considerably worse economic climate than the modest downturn after the WTC.  This is the worst downturn since the Depression.
- COBRA costs are higher as a percent of perople's earnings making it much harder for people to afford.  People who think they have saved 6 months worrth of living expenses can need to recalculate when they get the first COBRA bill for the full cost of insurance.  Health insurance costs have been going up far faster than wages for decades and this has an exponential effect. 
- ADAP has waiting lists in many states -- or is closed
- As the prognosis for people with HIV has improved it has become much more difficult to get approved for Social Security disability, with its pathway to Medicaid and eventually Medicare.

There is one contrary trend and that is health care reform.  But it isn't fully in place yet. 

Summing up, the benefits of uninterrupted treatment have a higher value today and the cost of getting an alternative source of treatment is also higher.  So if one's "insurance" used to be good as a 30 day stockpile, it makes sense to have a greater one today. 


It is certainly nothing to be anxious about and people who need to start treatment should not delay treatment or target poor adherence in order to increase their stockpiles.  But it is worthwhile to get on a mail order plan if one is available and to order meds as soon as they let you.



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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Re: Got my mail order meds today
« Reply #31 on: June 17, 2011, 06:54:17 PM »
David likes to create drama where there is none, it's part of his charm. ;)

David = Miss P (for those wondering)


Offline Miss Philicia

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Re: Got my mail order meds today
« Reply #32 on: June 17, 2011, 07:02:24 PM »
No, I just guess I'm missing something -- COBRA pays for your medications.  If you opt to not go on COBRA when you're unemployed and HIV+, then you won't be able to go to a doctor or get lab work done, and you'll be screwed when you try to get on another policy when you get hired again.

What am I missing here -- school me. I realize that both of you have gone through a year of unemployment while being HIV+.  I still don't get how some here are recommending 3 months extra supply, six months extra, and some longer. Which of you are doing it wrong? Or am I the only wrong one?

ps: this is yet another excellent reason for you folks to come out of the poz closet to Momsums and Dadsums, so when your ass is on the dole they can pony up for that COBRA policy! :)
"Iíve slept with enough men to know that Iím not gay"

Offline bocker3

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Re: Got my mail order meds today
« Reply #33 on: June 17, 2011, 11:40:17 PM »
No, I just guess I'm missing something -- COBRA pays for your medications.  If you opt to not go on COBRA when you're unemployed and HIV+, then you won't be able to go to a doctor or get lab work done, and you'll be screwed when you try to get on another policy when you get hired again.

What am I missing here -- school me. I realize that both of you have gone through a year of unemployment while being HIV+.  I still don't get how some here are recommending 3 months extra supply, six months extra, and some longer. Which of you are doing it wrong? Or am I the only wrong one?

ps: this is yet another excellent reason for you folks to come out of the poz closet to Momsums and Dadsums, so when your ass is on the dole they can pony up for that COBRA policy! :)

Why is anyone wrong?  I am not recommending any amount.  I have only stated it is wise to have some extra and told how much I have saved up.
Of course, paying for COBRA would be a top priority -- but if I can get away without also having to pay for the Rx copays on top of the COBRA -- why wouldn't I want to do this.  I just get back to the fact that I am trying to be prepared for a personal financial crisis.  You needn't buy into my approach -- but it isn't "wrong" -- nor is your approach "wrong".  They are just different.

Also -- my mom and dad know all about my HIV -- however, neither of them are in a place to help me -- I am the one helping out my family members.  I am trying to be prepared because I am the one who would need to figure it all out. 

If I don't have to look for some form of public assistance, I would prefer it.  Not that there is anything wrong with getting it, but if I have the means now, to set myself up to weather through a rough patch and leave the finite public resources to those who don't have those means, I feel that I should.

So -- I hope that is some "schooling" -- there is no wrong here, just differences.

Mike
Atripla - Started 12/05
Reyataz/Norvir - Added 6/06
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Offline edfu

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Re: Got my mail order meds today
« Reply #34 on: June 18, 2011, 02:29:04 AM »
No, I just guess I'm missing something -- COBRA pays for your medications. 

ps: this is yet another excellent reason for you folks to come out of the poz closet to Momsums and Dadsums, so when your ass is on the dole they can pony up for that COBRA policy! :)

No, COBRA doesn't always pay in full for one's medications.  It pays (in the full amount) for a continuation of the employer related insurance you had when employed.  If that insurance leaves a high medication copay or is similarly deficient, you're doubly screwed, because you're paying a much higher premium yourself than when you were still employed and your employer was paying a portion of that premium.   

Not all of us have Momsums and Dadsums in the Virginia gentry who can afford to pay for a COBRA policy, especially if they're having difficulty themselves with medical bills.   
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Offline skeebo1969

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Re: Got my mail order meds today
« Reply #35 on: June 18, 2011, 07:44:06 AM »
ps: this is yet another excellent reason for you folks to come out of the poz closet to Momsums and Dadsums, so when your ass is on the dole they can pony up for that COBRA policy! :)

What if mommy and daddy are dead?

In the real world I think it makes sense to have a reserve to fall back on, in Miss P's world maybe not.
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Offline Ann

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Re: Got my mail order meds today
« Reply #36 on: June 18, 2011, 08:56:47 AM »
One thing that I'd like to point out to everyone who keeps a reserve - make sure you keep your stock rotated!!! Always use your oldest meds first and put your new meds at the back of the drawer/shelf/whatever and rotate them forward with each new batch of reserve meds. My bf neglected to do this when he was first on meds and ended up with several bottles of way out-of-date (some were more than three years out-of-date) meds.
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"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline Inchlingblue

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Re: Got my mail order meds today
« Reply #37 on: June 18, 2011, 10:24:55 AM »
ps: this is yet another excellent reason for you folks to come out of the poz closet to Momsums and Dadsums, so when your ass is on the dole they can pony up for that COBRA policy! :)

You are joking with that one, right?

You can't possibly be living in such a bubble that you think everyone has well-to-do parents or even parents that are alive.

Offline Miss Philicia

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Re: Got my mail order meds today
« Reply #38 on: June 18, 2011, 10:44:34 AM »
You are joking with that one, right?

You can't possibly be living in such a bubble that you think everyone has well-to-do parents or even parents that are alive.

No, I wasn't implying that -- it's a stretch to read that as "everyone" in what I wrote, if so then whatevs. Certainly many have parents that can chip in during a period of unemployment, and all I'm saying is that being out with your medical status just like you would with any other medical situation would possibly help.

And no, my parents didn't pay my entire policy, the only offered to help and paid part of it. It's not like I was on it a short time, it was ages, as in the full 18 months or close to it -- plus it was during the period of intense wasting and I was hobbling with neuropathy to the doctor for twice monthly steroid shots, blah blah blah.  Yes, how dare I.
"Iíve slept with enough men to know that Iím not gay"

Offline Assurbanipal

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Re: Got my mail order meds today
« Reply #39 on: June 18, 2011, 10:58:36 AM »
You are joking with that one, right?

You can't possibly be living in such a bubble that you think everyone has well-to-do parents or even parents that are alive.

It is another strategy that will work for some -- especially people under 25 who may have the ability to go back onto their parent's work-related insurance.  Or for those with living parents and some assets in a house that will sacrifice to see their child stay alive.  

It isn't going to work for everyone.  But neither is a stockpile -- you may need to go off the drug you have stockpiled due to accumulating side effects.  They are strategies -- and back to Jimmy -- it is just a strategy to protect against a risk that may never happen -- not something to be anxious about.



As far as schooling Miss P, because COBRA is so expensive and you have two months to elect it (but then you have to pay retroactively) many people prefer to look for a job for a while before they sign up -- you can probably put off doctor visits and labs for a couple of months before you have to elect COBRA or lose the opportunity, but you need to keep taking your meds.

There are also some relatively new but increasingly common types of plans that are very expensive (very high deductibles) until you reach a certain point of expense, but then have almost no co-pay -- that gives people a lot of things to think about depending on where they are in the cycle when they lose their job.  If they are at the start of  a cycle they face a deductible/co-pay that can equal the full cost of drugs plus the COBRA payment -- if they are at the end of the cycle they may have no cost but the COBRA until the year starts up again.

But generally COBRA is relatively more expensive than it was in the past, since health insurance costs keep going up much faster than wages, and some of these new health plans add additional costs that are really high if you lose a job at the wrong point.

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 Miss Philicia

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Re: Got my mail order meds today
« Reply #40 on: June 18, 2011, 11:48:36 AM »
Every person is going to have a situation that plays out differently, the point is to sit down and think of what would happen if you were to suddenly find yourself unemployed for 6 - 12 months. I would even recommend sitting down with a case manager and discussing X, Y, Z of how things might play out for you personally if you find yourself in this position, so as to better anticipate your needs.

And I've repeatedly recommended to our NYC residents to attend a Per Larson seminar on HIV and "money issues" like this at Friends in Deed, not that anyone seems to ever pay attention to that.
"Iíve slept with enough men to know that Iím not gay"

Offline Inchlingblue

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Re: Got my mail order meds today
« Reply #41 on: June 18, 2011, 12:29:44 PM »
Every person is going to have a situation that plays out differently, the point is to sit down and think of what would happen if you were to suddenly find yourself unemployed for 6 - 12 months. I would even recommend sitting down with a case manager and discussing X, Y, Z of how things might play out for you personally if you find yourself in this position, so as to better anticipate your needs.

And I've repeatedly recommended to our NYC residents to attend a Per Larson seminar on HIV and "money issues" like this at Friends in Deed, not that anyone seems to ever pay attention to that.

Yeah. And none of this precludes having a reserve of meds if one is able to have one and if it gives one peace of mind.

There isn't a case manager in the world who can wave a magic wand and get you coverage if you simply don't qualify based on having too much in savings or any other of a number of criteria.

Offline Miss Philicia

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Re: Got my mail order meds today
« Reply #42 on: June 18, 2011, 12:50:51 PM »
I never said not to have a reserve of meds, and clearly stated I have one -- in fact, previous to some of you showing up on this forum I was often the sole person advocating maintaining said reserve and specifically building one up to people new to treatment. So you can shove off on warping my words, Inchling. I also didn't say that sitting down with a case manager is a magic panacea. Seriously girl, get a grip.

Lay off the macchiato this PM and focus on your needle dicks via craigslist :)
« Last Edit: June 18, 2011, 12:53:34 PM by Miss Philicia »
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Offline Inchlingblue

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Re: Got my mail order meds today
« Reply #43 on: June 18, 2011, 01:06:32 PM »
I never said not to have a reserve of meds, and clearly stated I have one -- in fact, previous to some of you showing up on this forum I was often the sole person advocating maintaining said reserve and specifically building one up to people new to treatment. So you can shove off on warping my words, Inchling. I also didn't say that sitting down with a case manager is a magic panacea. Seriously girl, get a grip.

Lay off the macchiato this PM and focus on your needle dicks via craigslist :)

She's feeling cornered so after playing the sympathy card (above) didn't work, she's resorting to personal attacks. How predictable!

If you read back through her 50,000 posts you'll find the same boring pattern.
« Last Edit: June 18, 2011, 01:10:35 PM by Inchlingblue »

Offline Miss Philicia

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Re: Got my mail order meds today
« Reply #44 on: June 18, 2011, 01:13:08 PM »
fascinating analysis
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Offline Ann

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Re: Got my mail order meds today
« Reply #45 on: June 18, 2011, 01:18:41 PM »
Inch, Miss P, knock it off, both of you. It's getting tedious.
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"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline randym431

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Re: Got my mail order meds today
« Reply #46 on: June 20, 2011, 10:22:20 AM »
It can be hiv, or diabetes, or whatever. Having to take pill long term is part of life today for more people than not.
I think of the time when there were no treatment. All those people that had no hope at all.
And I wish I could take a train load of hiv meds back into the past for all those people that never had a chance.
My cousin died in 1990 after two years of hell. He had gone totally blind and looked like a stick person.

Maybe someday one pill will cure and totally wipe hiv from the body completely.
Until then, bring on the pill(s).

 


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