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Author Topic: HELP. ADAP has closed in my state, and I have five days worth of meds left!  (Read 4665 times)

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Offline retroMan

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I just got laid off in April. I was an independent contractor without health insurance.

I'm on Norvir/Reyataz/Truvada.  My CD4 is over 800, and VL under 50 copies.  With the success that I've had on this regime, I really don't want to risk resistance, or treatment failure. 

Does anyone know of a solution until I can move next month to a state with funding available?

Offline mecch

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I can make the same offer I did to Lord Berner who doesnt seem to need it. I am in Switzerland. I have a month of Reyataz, Norvir and Truvada I can send you, if you don't find a local solution.  I dont know anything about customs or stuff but assume if its a private person sending to a private person, we could just say I'm sending it to myself for my holiday.  I doubt it would get to you in five days, however.  Maybe dhl.

What state are you in? How did you get your HAART up to this point?
« Last Edit: May 05, 2010, 05:29:24 AM by mecch »
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline WillyWump

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Retro,

What State are you in?

What do you mean ADAP has "closed"? I'm assuming you're referring to a waiting list?

-Will
POZ since '08

Last Labs-
6/3/14 CD4- 736, UD 34%
6/25/13 CD4- 1036, UD,
2/4/13, CD4 - 489, UD, 28%

Current Meds: Prezista/Epzicom/ Norvir
.

Offline retroMan

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I was covered up until March 31st.  At which time, I had to re-certify by providing income information for the tax year of 2009.

Mind you, I filed my taxes early just to meet this deadline for meds assistance.  Something I hadn't planned on doing since I knew I would owe taxes, instead of getting a refund.  Not only did I get hit with a large tax bill, that I now have to pay installments on, but AFTER I gave the administrators what they asked of me I was advised that I'm over the income cap.  Then when I go to my clinic for help they tell me the program funds are no longer available any way.

I am in Utah.  Maybe I'm using the wrong terminology, perhaps it is a waiting list.


Offline Hellraiser

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You must've been making enough money that they assume you can buy your own meds.  If you had to pay a large amount of taxes that's what I'm leaning to anyway.  I'm not sure what you cuold do about this to be honest.  Have you spoken to a case worker and told them you lost your job so as of now your income is 0?

Offline WillyWump

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Hmmm , as of Feb '10 Utah had a waiting list of 64 individuals. I bleieve Utah also instituted Cost-Containment strategies (lowered financial Eligibility) which is where you may have been screwed.

http://www.nastad.org/Docs/Public/InFocus/201025_ADAP%20Watch%20update%20-%202.5.10.pdf

Like HellR said, I would speak to a caseworker ASAP and see what options you have. Do it today.

-Will
POZ since '08

Last Labs-
6/3/14 CD4- 736, UD 34%
6/25/13 CD4- 1036, UD,
2/4/13, CD4 - 489, UD, 28%

Current Meds: Prezista/Epzicom/ Norvir
.

Offline Hellraiser

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You may be able to go to a lawyer and get an affidavit stating you don't have the income to afford the meds, but if you're currently not on ADAP and there is a waiting list even if you get added you'll go to the back of the queue.

Offline WillyWump

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I thought I would just throw this out there...

Patient Assistance Programs offered by the drug companies to offset the cost of drugs:

Norvir- 1.866.992.9276
Reyataz- 1.800.850.3430
Truvada- 1.888.281.8981

While these programs do not offer free meds, they offer a substantial discount. Contact each for more info.

I realize your income is now zero, but perhaps with Unemployment compensation and the above discount programs you can attain your meds. It would be worth at least a call to them

-Will

POZ since '08

Last Labs-
6/3/14 CD4- 736, UD 34%
6/25/13 CD4- 1036, UD,
2/4/13, CD4 - 489, UD, 28%

Current Meds: Prezista/Epzicom/ Norvir
.

Offline Inchlingblue

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The pharmaceutical companies many times offer free meds, at least temporarily, for people in your situation. You should contact them or speak to a social worker who could steer you in the right direction.

One of the members here received about 3 months of Atripla for free at one point, from the manufacturer.

If I were you I'd take mecch up on his generous offer; maybe your doctor's office has a few days' supplies to tide you over.

Here are the most recent updates to ADAP Waiting lists in the United States (so make sure not to move to any of those states).

938 individuals, as of April 16, 2010

Idaho: 26 people
Iowa: 69 people
Kentucky: 191 people
Montana: 17 people
North Carolina: 400 people
South Carolina: 48 people
South Dakota: 32 people
Tennessee: 61 people
Utah: 80 people
Wyoming: 14 people


LINK:

http://www.thebody.com/content/art56401.html

Offline retroMan

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Thanks, all, for your contribution to this topic.  I visited the social worker the day after I received my ineligibility letter.  As an independent contractor, I'm not eligible for unemployment compensation.  She had me apply for it anyway to show denial to the drug companies.  So I have already applied for the drug programs, and it is taking longer than I thought to hear back from anyone.

I saved money for moving expenses, and a couple months rent, not factoring expensive meds into the equation.  I've asked friends, and looked into other local resources.  Putting it all out here is my last, desperate attempt.  Fortunately, I have two job possibilities lined up in another state.  A state that is not on that waiting list.   

Today, I will attempt a follow up on the status of the drug programs.  In the meantime, mecch, I will take you up on your offer.  I will private message you.

Offline Hellraiser

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I really hope things turn out well for you.

As for those waiting lists...how can those states justify denying meds to people?  Are there even any cheaper meds that are off patent yet so that potentially a change of regimen would enable them to stay on ADAP more cost effectively?

191 people in Kentucky...is the epidemic that bad there?  are there just more people below the poverty line or uninsured?

Offline Inchlingblue

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Thanks, all, for your contribution to this topic.  I visited the social worker the day after I received my ineligibility letter.  As an independent contractor, I'm not eligible for unemployment compensation.  She had me apply for it anyway to show denial to the drug companies.  So I have already applied for the drug programs, and it is taking longer than I thought to hear back from anyone.

I saved money for moving expenses, and a couple months rent, not factoring expensive meds into the equation.  I've asked friends, and looked into other local resources.  Putting it all out here is my last, desperate attempt.  Fortunately, I have two job possibilities lined up in another state.  A state that is not on that waiting list.  

Today, I will attempt a follow up on the status of the drug programs.  In the meantime, mecch, I will take you up on your offer.  I will private message you.

As far as ADAPs, also check eligibility requirements since many of them have been getting stricter with income requirements. And if you are an independent contractor I would fudge my income if necessary.
« Last Edit: May 05, 2010, 04:30:00 PM by Inchlingblue »

Offline mecch

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Private me soon then.  Norvir should be fine for 30-60 days without refrig so it should be fine to get through the mail.
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline madbrain

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If you do run out of some meds but not the others for some reason, don't take just one or two - it may cause resistance. It's better to take none or all.

Offline Miss Philicia

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I thought Ryan White is a federal law.
"I’ve slept with enough men to know that I’m not gay"

Offline aztecan

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I thought Ryan White is a federal law.

The Ryan White Care Act is federal.

The money is divvied up among the states based on the number of people that can be documented as being served.

That is why New Mexico and other states started reporting HIV cases, not just AIDS cases.

Once the states get the money, it is spent by the state on various programs, including ADAP. The problem it, there is never enough money.

Most states have to augment the amount they set aside for ADAP with state money. These days, state money is harder to come by.

I know people who moved to New Mexico from Utah because of the situation in which retroman finds himself.

One of them has yet to find a job after nearly a year. But, the meds are available as is medical care.

People are literally having to choose between earning a living and continuing to live.

This is abysmal.

HUGS,

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

Offline retroMan

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[quote author=aztecan link=topic=32528.msg399824#msg399824 date=1273165134

People are literally having to choose between earning a living and continuing to live.

This is abysmal.

HUGS,

Mark

[/quote]

Yeah, now I know I have a limitation on my salary if I want to continue to take meds.  Unless, of course, I am willing to pay for them out of pocket.

Offline leatherman

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Yeah, now I know I have a limitation on my salary if I want to continue to take meds. 
sadly, for several decades now in the US of A, quite often HIV and poverty go hand-in-hand so that one can stay eligible to having access to meds. Worse yet is that often to obtain disability to get access to both meds and doctors requires abject poverty.
leatherman (aka mIkIE)


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

Offline retroMan

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Good news, all!  I was approved for the pharmaceutical companies' drug assistance programs.  My worker said she put the info in on April 30th, and that it takes about four days to receive them.  I'm not sure how many will be provided at one time, but it appears they won't be a major cost to me.  

Thank you all involved in this thread!  Mecch, you are a life-saver.  

I find it ironic that I got more support, and information in this forum than from recent contact I attempted at an ASO.  I'll post separately for that one.  I would like to get the group's input!

Offline WillyWump

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Excellent Retro! This is great news! I've been worried about your situation. Glad some sort of closure is occuring :)

-Will
POZ since '08

Last Labs-
6/3/14 CD4- 736, UD 34%
6/25/13 CD4- 1036, UD,
2/4/13, CD4 - 489, UD, 28%

Current Meds: Prezista/Epzicom/ Norvir
.

Offline mecch

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  • red pill? or blue pill?
I guess one of the lessons here for those in the states is to try very very hard to build a reservoir of drugs of at least a few weeks.
It would take some sort of major unprecedented event to interrupt the supply in many countries but in the USA it happens. 
At least if you are on the ball you can find solutions, but the weeks of stress - I would never want to deal with that. It seems so cruel and unnecessary in a rich country.
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline leatherman

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I guess one of the lessons here for those in the states is to try very very hard to build a reservoir of drugs of at least a few weeks.
always a good suggestion. ;) If I had not had a three month reserve of stored up meds when I moved from OH to SC about half a yr ago, I would have gone that long without meds before all the paperwork and issues where cleared up, even though I had been receiving meds for over 15 yrs.
leatherman (aka mIkIE)


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

Offline Inchlingblue

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I guess one of the lessons here for those in the states is to try very very hard to build a reservoir of drugs of at least a few weeks.
 

That's one of the first lessons I learned when I came on this forum (from Bocker). I now have about 3 months extra meds because I have been filling my Rx as soon as I'm able to every month, which is every 24 days. Plus, when I started meds I still had decent numbers so I did not take the meds for a whole month after filling the first Rx.

Any little thing can screw things up. A friend of mine recently went on COBRA and because a person at his old job made an error the COBRA coverage was asking him for a $3000. co-pay. Even though it was a mistake it took weeks for it to be cleared up.

Always good to have extra meds.

Offline metekrop

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I now have about 3 months extra meds because I have been filling my Rx as soon as I'm able to every month, which is every 24 days.

It is amazing why people are negligent on life saving stuff.  Every request for such meds should be quick and instantaneous.  I also realized that having a back up meds is essential.  By now I think I have a one month back up meds.  When I request for fill up I always make it four or five days earlier.  In that way I do now save my meds for one moth.  If I continue in this way I will hopefully have several months of back up medications. Keeping money cash for emergency is also advisable.  Who knows?
« Last Edit: May 07, 2010, 07:39:25 AM by metekrop »
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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When I request for fill up I always make it four or five days earlier. ... Keeping money cash for emergency is also advisable.
for many people that is much easier said that done :D, and for some it just can't be done. :o keeping adequate medical access and medicine access can be quite tricky living in the states.

because my meds are paid through medicare and medicaid, my meds are sent out by UPS on exact 30 day intervals through a pharmacy. I have no access to requesting them any sooner. (Though I do not advise this method - but we do what we have to do ;) - so the meds I store up are from days that I skip taking my meds)

Also, living on SS disability checks, there is no extra money ever left over for emergencies. (Heck after paying rent, utils, etc, I have <$75 a month to cover dog food, soap, shampoo, razor, garbage bags, all the "taxable" items)
leatherman (aka mIkIE)


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

Offline retroMan

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for many people that is much easier said that done :D, and for some it just can't be done. :o keeping adequate medical access and medicine access can be quite tricky living in the states.

because my meds are paid through medicare and medicaid, my meds are sent out by UPS on exact 30 day intervals through a pharmacy. I have no access to requesting them any sooner. (Though I do not advise this method - but we do what we have to do ;) - so the meds I store up are from days that I skip taking my meds)


Exactly.  The program I was on for the past year only provided 30-day supplies.  I continuously asked for at least 2 weeks extra due to my traveling consultant schedule, but they wouldn't oblige.  I've had at least two missed doses of 3-4 days because of this. 

Offline leatherman

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I've had at least two missed doses of 3-4 days because of this. 
once again this is NOT medical advice, just telling people how it is when you're poor, and on federal and state assistance in the States.

I purposefully skip a day once in a while, especially since I have been UD with stable cd4s for several years (well, I did it the years I wasn't stable too; but that's just how it was). I skip days when I'm feeling pukey (I've barfed up enough meds in my life to just think that defeats the purpose LOL), or days when I don't want to feel pukey (like when I go the amusement park to ride the coasters, or white-water rafting trips), and sometimes I forget (wink wink) to take them with me when I go out to eat with friends and family. With these stored up meds, I'm never at a point of missing SEVERAL days in a row. A day here or there is not going to be enough to cause resistance or allow the little bit of remaining virus to grab a tangible handhold in my system. Going 3 or 4 days would definitely be something I would want to avoid.
leatherman (aka mIkIE)


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

Offline mecch

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Well I sent two envelops to you today, one small one with five days supply and one larger one with 40.  I hope you look really hard to find enough pills to tide you over until they get to you, or until your state comes through with the meds. 
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline WillyWump

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Well I sent two envelops to you today, one small one with five days supply and one larger one with 40.  I hope you look really hard to find enough pills to tide you over until they get to you, or until your state comes through with the meds. 


Amazing. Hats off to Mecch!

-Will
POZ since '08

Last Labs-
6/3/14 CD4- 736, UD 34%
6/25/13 CD4- 1036, UD,
2/4/13, CD4 - 489, UD, 28%

Current Meds: Prezista/Epzicom/ Norvir
.

Offline GNYC09

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Amazing. Hats off to Mecch!

-Will

retroMan, good news.

Mech, you are a hero!

Offline mecch

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Switzerland has private insurance companies and a mix of government run hospitals and private cliniques. Doctors are almost all private.
Everyone must buy insurance.  All insurance companies must offer their "basic" package to anyone who asks for it.  When I arrived in Switzerland my health was fine. I wanted a bit more luxury of a package and I wanted alternative medicine coverage, these were denied because I (stupidly) checked that I had Hep A in my youth. Anyway, I got my basic and thats that.

Poor people and the unemployed can apply for a subsidy to pay for their monthly insurance premiums.  The basic monthly package costs about 300-400 swiss francs.  About the same in dollars. (Swiss franc is so strong, again).   Children all get a subsidy.

My deductible for medical costs is 300 a year.  Then 10% of costs up to 700, so 1000 total per year.

I grew up in the states and lived in NYC in the 80s and 90s and had many a horrible experience with friends and lovers with HIV and medical access.  A few nice stories too, of course.

In my bones I was petrified when i seroconverted here in Europe in 2008 about garanteed affordable treatment.  

I remember asking the pharmacy, what happens if I loose medicine. What happens if I want to travel and need extra for security.  She looked at me like a Martian and said Mr. Mecch, we are not counting pills in Switzerland if you need pills come and get them, ok?

So its not free or dirt cheap like in some countries.
But wouldnt it have been wonderful if Hillary Clinton hadn't been laughed off the hill with her Hillary Care proposals so long ago.  SHe had studied the Swiss method but maybe her big mistake was still linking health insurance to employers. 
 
Everyone here gets something - doctors stay private. Insurance companies make money (but maybe not SCADS!) and pharmaceuticals get top dollar for their drugs.  And people get health care.

Why is it so FREAKING complicated in the states??

Anyhow - thank Switzerland!
« Last Edit: May 08, 2010, 08:30:39 AM by mecch »
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline Inchlingblue

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That sounds very sane and civilized  . . . . what a concept!

A lesbian friend of mine recently officially married her partner, who is from Spain. I think the Spanish gov't recognizes gay unions and she will be eligible for EU citizenship in about a year, not sure, but that's what I heard.

Not to pry and you don't have to answer but how were you able to move to Switzerland? Not just anyone can do that right?

Offline mecch

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I have Europeans passports and USA:  Not swiss, yet. I guess I am eligible now however. Switzerland has open borders and labour market now with most of the EU. But not all. I think.

Every country has its good and bad points.  The swiss are not so friendly and very private.  I was just talking to a morroccan lady this afternoon and we were comparing our reactions to this special country.

Here you have to live by the rules down to the last detail. You can get a bill for a penny. If you don't pay it, they will send you to the state collection office and give you enormous fines.  People who live in your building won't say hi to you, years after you think you might "know" them.

Amercia would be the paradise if they could just get a sense of community and the common good back when it comes to working, health, education, etc.

« Last Edit: May 08, 2010, 01:27:51 PM by mecch »
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline LordBerners

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mecch I'd just like to chime in and applaud your assistance to retroman and to thank you again for having made a similar offer to me.  I don't think I was as appreciative as I should have been at the time! 

I also wanted to make a comment about Switzerland - I used to live there, in Geneva, for a while in the late 90s/early 2000s, and I'll second your comments.  Alas for me I could not get any EU passport nor certainly a Swiss one.  But you're also right about the USA - it could be a good place, if it weren't for the economic genocide that everyone seems so attached to.
Please, just call me Berners.. or Baron.

 


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