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Author Topic: ADAP Watch June 11, 2010  (Read 8936 times)

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Offline leatherman

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ADAP Watch June 11, 2010
« on: June 11, 2010, 06:05:12 PM »
from the newest ADAP Watch (pdf):

As of June 10, 2010, there were 1,431 individuals on AIDS Drug Assistance Program (ADAP) waiting lists in eleven states. This is a 116 percent increase from the 662 individuals on the March 2010 ADAP Watch.  Twelve ADAPs, four with current waiting lists, have instituted additional cost-containment measures since April 1, 2009.  In addition, seven ADAPs, including two with current waiting lists, are considering implementing new or additional cost-containment measures by the end of March 2011. States that have instituted cost containment measures and those considering them, in addition to implementing waiting lists, are reducing program eligibility, capping enrollment, reducing the number of drugs on the formulary and cutting other services, all of which impact access to life saving HIV medications for medically vulnerable individuals.   
 
ADAP Watch June 11, 2010
(with changes from May 21, 2010 listed)

Florida: 113 (+113)
Hawaii: 7 (+2)
Idaho:  25 (+5)
Iowa: 91 (+7)
Kentucky: 177 (-31)
Montana: 18 (0)
North Carolina:  710 (+108)
South Carolina: 145 (+35)
South Dakota: 21 (+11)
Utah: 104 (+7)
Wyoming: 20 (+3)

There was some good news though. Several drug companies will be working with the ADAP program to provide free or discounted meds.

AHF Lauds Gilead for AIDS Drug Price Concessions for Nation’s ADAPs
The agreement was reached between Gilead and the ADAP Crisis Task Force (ACTF) of the National Alliance of State & Territorial AIDS Directors (NASTAD). Gilead, which markets the AIDS drugs Truvada®, Viread® and Emtriva® joins Abbott, Merck, Tibotec Therapeutics and ViiV Healthcare among the ranks of AIDS drug manufacturers that have recently offered significant price cuts, freezes, or price rebate adjustments and other concessions on the pricing of their lifesaving AIDS medications to ADAP
http://www.aidshealth.org/news/press-releases/ahf-lauds-gilead-for-aids.html

AHF Lauds Merck for Offer to Double ADAP AIDS Drug Rebates for Isentress
Merck is offering to double its drug discount rebates for hard-hit ADAP programs nationwide; freeze its price for ADAPs for Isentress at approximately $8,800 per patient yearly (more than $4,000 less than its $12,868 Average Wholesale Price [AWP] for the drug); and start paying its ADAP drug discount rebates to states upfront instead of months (or years) after the fact.
http://www.aidshealth.org/news/press-releases/victory-ahf-lauds-merck-for.html

AHF Advocacy Spurs AIDS Drug Companies to Yield on Pricing
ViiV Healthcare, a new drug company formed in a partnership between GSK and Pfizer, has announced an agreement that will provide additional cost savings to cash-strapped ADAPs nationwide. The agreement was reached between ViiV and the ADAP Crisis Task Force (ACTF) of the National Alliance of State & Territorial AIDS Directors (NASTAD). ViiV Healthcare, which markets the AIDS drug Selzentry (maraviroc, first introduced by Pfizer in August 2007) and the commonly prescribed anti-retroviral treatments Combivir and Trizivir, joins Merck and Company, Johnson & Johnson’s Tibotec Therapeutics and Abbott Labs among the ranks of AIDS drug manufacturers that have recently offered significant price cuts, freezes, price rebate adjustments and other concessions on the pricing of their lifesaving AIDS medications to ADAP.
http://www.aidshealth.org/news/press-releases/ahf-advocacy-spurs-aids-drug.html

Heinz Family Philanthropies, Welvista and Abbott Announce Solution to Help Patients on State ADAP Waiting Lists for No-Cost HIV Medications
Abbott is providing a grant to Welvista, a nonprofit organization that fills prescriptions for patients who are uninsured and underinsured.  This grant will help provide for a one-year program to help any patient on a state ADAP waiting list who needs an Abbott HIV medication [kaletra and norvir].  Abbott, the global health care company, makes protease inhibitors that are important components of many HIV combination treatment regimens.
http://www.prnewswire.com/news-releases/heinz-family-philanthropies-welvista-and-abbott-announce-solution-to-help-patients-on-state-adap-waiting-lists-for-no-cost-hiv-medications-93079254.html
leatherman (aka mIkIE)


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

Offline Just John

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Re: ADAP Watch June 11, 2010
« Reply #1 on: June 11, 2010, 06:18:49 PM »
from the newest ADAP Watch (pdf):

As of June 10, 2010, there were 1,431 individuals on AIDS Drug Assistance Program (ADAP) waiting lists in eleven states. This is a 116 percent increase from the 662 individuals on the March 2010 ADAP Watch.  Twelve ADAPs, four with current waiting lists, have instituted additional cost-containment measures since April 1, 2009.  In addition, seven ADAPs, including two with current waiting lists, are considering implementing new or additional cost-containment measures by the end of March 2011. States that have instituted cost containment measures and those considering them, in addition to implementing waiting lists, are reducing program eligibility, capping enrollment, reducing the number of drugs on the formulary and cutting other services, all of which impact access to life saving HIV medications for medically vulnerable individuals.

I was shocked four years ago when I first found out that this sort of situation existed in the USA.

I still find it difficult to comprehend, how it can not only continue for so long but even get worse; in a civilised, supposedly advanced, western country.

It upsets me when I hear of people in third world countries who are still dying through lack of drugs and healthcare. That the United States Government allows this to continue in their own backyard, especially whilst giving aid to other countries is shameful.

-John.
Some cause happiness wherever they go; others, whenever they go.

Offline leatherman

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Re: ADAP Watch June 11, 2010
« Reply #2 on: June 11, 2010, 06:45:17 PM »
It upsets me when I hear of people in third world countries who are still dying through lack of drugs and healthcare.
yes, it is very troubling. Four years ago in 2006, 3 people in Kentucky and 1 person in South Carolina actually died while on the ADAP waiting list before they could get meds. Already in 2008, 1 person has died in South Carolina while on the drug waiting list. Of course, someone can be diagnosed so late than even meds cannot reverse the situation; but not being able to receive meds at all can guarantee death.  :'(

Sadly many states are poised to use other cost cutting measures too. For example, by changing the requirements for ADAP, people in SC and NC who were receiving ADAP-supported meds have been dropped from the program when their yearly review came around. That means many of those people, now deemed ineligible by as little as $1, and unable to "find" $2000 a month or so, will find themselves with no meds - which of course can lead to resistance issues, increasing health problems, OIs, and potentially more deaths.
leatherman (aka mIkIE)


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

Offline hope_for_a_cure

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Re: ADAP Watch June 11, 2010
« Reply #3 on: June 11, 2010, 06:52:26 PM »
I am on of the 145 in SC that is waiting.  In the meantime I have sold pretty much all that I own (including my car) just to keep a few bucks in the bank and pay my bills.  If not for my family, I would be without a place to live.  My heart goes out to those who dont have the support of family and or friends.  I count my blessings but do know what it is like to 'make do' and 'live without'.


Offline leatherman

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Re: ADAP Watch June 11, 2010
« Reply #4 on: June 11, 2010, 07:26:47 PM »
I am on of the 145 in SC that is waiting.
did you catch my thread about the rallies back in March and May? SC ADAP Funding Cut Protest Rally

I'm sorry to hear that you're on "the list".
Damn! You're just having a tough time with everything this year, aren't you?
Hang in there!
leatherman (aka mIkIE)


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

Offline Hellraiser

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Re: ADAP Watch June 11, 2010
« Reply #5 on: June 11, 2010, 08:00:26 PM »
Hmm In Louisiana I have to renew every 6 months.  Is this not the case in other states?

Offline leatherman

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Re: ADAP Watch June 11, 2010
« Reply #6 on: June 11, 2010, 08:24:34 PM »
Hmm In Louisiana I have to renew every 6 months.  Is this not the case in other states?
it was only once a year in Ohio, and only once a year in SC
http://www.scdhec.gov/health/disease/stdhiv/docs/ADAP_Guidlines.pdf (pg 13)
SC ADAP will require all patients to recertify once a year.  All patients will recertify in their birth month. The recertification will include documentation of household income and the most recent CD4 and viral load.  Recertification forms should be returned within 90 days of receipt. If recertification has not been returned within 45 days, the patient will receive a 2nd Request reminding that the recertification form is due.  If the recertification form has not been received within 90 days, a Final request will be mailed to the patient, case manager and/or physician.  After 90 days, the client may be closed for non-compliance.

I wonder if it costs the state more money to do renewals every 6 months vs. once a year? Or do so many Louisanians have their situations improve so drastically that it's worth checking into their situations so frequently? Sounds like it could be a situation of more wasted money that would better be spent giving aide to the citizens. ::)
leatherman (aka mIkIE)


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

Offline Hellraiser

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Re: ADAP Watch June 11, 2010
« Reply #7 on: June 11, 2010, 08:26:16 PM »
it was only once a year in Ohio, and only once a year in SC
http://www.scdhec.gov/health/disease/stdhiv/docs/ADAP_Guidlines.pdf (pg 13)
SC ADAP will require all patients to recertify once a year.  All patients will recertify in their birth month. The recertification will include documentation of household income and the most recent CD4 and viral load.  Recertification forms should be returned within 90 days of receipt. If recertification has not been returned within 45 days, the patient will receive a 2nd Request reminding that the recertification form is due.  If the recertification form has not been received within 90 days, a Final request will be mailed to the patient, case manager and/or physician.  After 90 days, the client may be closed for non-compliance.

I wonder if it costs the state more money to do renewals every 6 months vs. once a year? Or do so many Louisanians have their situations improve so drastically that it's worth checking into their situations so frequently? Sounds like it could be a situation of more wasted money that would better be spent giving aide to the citizens. ::)

Yakamein is fairly clued into the system here, it may be a question he could answer.  They ask for your CD4 and VL, do they intend to cut you off if your numbers recuperate beyond a certain point?

Offline leatherman

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Re: ADAP Watch June 11, 2010
« Reply #8 on: June 11, 2010, 08:34:51 PM »
They ask for your CD4 and VL, do they intend to cut you off if your numbers recuperate beyond a certain point?
Acceptance into the Program is on a first come first served basis. There is no priority given to persons with lower CD4 counts or higher viral loads.-per the SC ADAP pdf

No, being an ADAP client is basically decided by monetary/insurance eligiblity, along with being HIV+. Requiring the lab results is to "prove" you are HIV+, need the HIV meds, and hence need ADAP to provide meds.
« Last Edit: June 11, 2010, 08:36:26 PM by leatherman »
leatherman (aka mIkIE)


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

Offline hope_for_a_cure

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Re: ADAP Watch June 11, 2010
« Reply #9 on: June 11, 2010, 08:37:16 PM »
My hope is that ADAP will come through but I dont hold my breath.

This year has thrown me a few punches thats for sure.  I am still alive and kicking!  I guess in a way its made me stronger in many ways.  I found out just how valuable family really is.  The slower pace of life here in SC is 'prolly' just what I need now... after all, I am turning 49 in August and dont mind the peace and quiet as much as I would have in my earlier years. 

I have applied for all types of assistance and time will tell.  In the meantime I dont allow myself to get too down in the dumps about the whole thing.  The 'maters' in the garden are growing and I spend time taking care of my mom (we went to Wally Mart today, then I fixed her some BBQ chicken on the grill). 

Thanks for the encouragement and words of wisdom. 

Offline leatherman

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Re: ADAP Watch June 11, 2010
« Reply #10 on: June 11, 2010, 08:52:38 PM »
I am turning 49 in August

The 'maters' in the garden are growing
You old man.  :D You're about 9 months older than me. Ha ha  ;) :D

my tomato plants were freaking 6 1/2 feet tall - with no fruit on them at all. That storm the other night, and me with some clippers, have reduced them to about 5 ft tall, and I'm finally seeing just a few green tomatoes. I have gotten enough squash to make a casserole already though. Right now, I'm just upset that the cantaloupe plants from the nursery turned out to have been mis-marked and are actually cucumber plants.  ::)

do you have an ASO in that part of the state? Are they/can they help with your meds?
leatherman (aka mIkIE)


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

Offline hope_for_a_cure

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Re: ADAP Watch June 11, 2010
« Reply #11 on: June 11, 2010, 09:00:19 PM »
Yes there is an AIDS Service Organization here in this part of the state, that is how I am able to see the ID Spec. for 20bucks/visit.  My major expense is medication (other than Atripla).  I have no income currently so I have to watch every little penny that I have left.  The sale of my property did allow me to re-pay my mother for hospital expenses and all those tests.  I have a little bit left but it by no means will see me through the rest of my life.  I will find a way though... I am sure of that! 

Offline WillyWump

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Re: ADAP Watch June 11, 2010
« Reply #12 on: June 11, 2010, 10:32:39 PM »
 
 
ADAP Watch June 11, 2010
(with changes from May 21, 2010 listed)

Florida: 113 (+113)
Hawaii: 7 (+2)
Idaho:  25 (+5)
Iowa: 91 (+7)
Kentucky: 177 (-31)
Montana: 18 (0)
North Carolina:  710 (+108)
South Carolina: 145 (+35)
South Dakota: 21 (+11)
Utah: 104 (+7)
Wyoming: 20 (+3)


Sigh. This is very disheartening news.

-Will
POZ since '08

Last Labs-
11-6-14 CD4- 871, UD
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 leatherman

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Re: ADAP Watch June 11, 2010
« Reply #13 on: June 11, 2010, 11:03:03 PM »
Kentucky: 177 (-31)
does anybody know why KY has 31 fewer people 2 weeks after the last report?
I'm hoping those people were able to get medications ;D, since I didn't heard about a slew of deaths in KY. :o
(I mean, that is a state where people in previous yrs have died while on the waiting list)

having been born in NC (and actually just living about 500 ft south of the NC/SC state line), I was especially saddened to see by how much their waiting list jumped up (again). Their waiting list makes up almost half of the total clients waiting in America. I thought things were bad in SC; but maybe I ought to run up to Charlotte, find out what's going on, and see if there are some rallies to attend in Raleigh.
leatherman (aka mIkIE)


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

Offline WillyWump

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Re: ADAP Watch June 11, 2010
« Reply #14 on: June 11, 2010, 11:18:54 PM »
does anybody know why KY has 31 fewer people 2 weeks after the last report?
I'm hoping those people were able to get medications ;D, since I didn't heard about a slew of deaths in KY. :o
(I mean, that is a state where people in previous yrs have died while on the waiting list)


Yeah that's very interesting, perhaps they just gave up and re-located to a state that doesnt have a waiting list.

-Will
POZ since '08

Last Labs-
11-6-14 CD4- 871, UD
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 tednlou2

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Re: ADAP Watch June 11, 2010
« Reply #15 on: June 11, 2010, 11:46:20 PM »
does anybody know why KY has 31 fewer people 2 weeks after the last report?
I'm hoping those people were able to get medications ;D, since I didn't heard about a slew of deaths in KY. :o
(I mean, that is a state where people in previous yrs have died while on the waiting list)

having been born in NC (and actually just living about 500 ft south of the NC/SC state line), I was especially saddened to see by how much their waiting list jumped up (again). Their waiting list makes up almost half of the total clients waiting in America. I thought things were bad in SC; but maybe I ought to run up to Charlotte, find out what's going on, and see if there are some rallies to attend in Raleigh.

I asked our ADAP guy about this.  I'm actually enrolled in ADAP here in KY, but I'm still not on meds.  I asked him whether I should take my name off, because I was taking a spot for someone else.  He said I should stay on it, because I never know when I will need to start meds.  He said I could take my name off and then be told on my next appt that I need to start meds.  He told me no one is being allowed to die--at least here in KY.  He said they go through drug company programs for the people who need meds until they can get on ADAP. 

I mentioned how I've heard of people dying on waiting lists in other states.  He said we don't know the all the circumstances.  He said those could have been people diagnosed very late and already very ill and would probably have died anyway.  He said if someone ended up in the hospital, he can't imagine denying that person life saving meds.  Now these are his words...not mine.  I contacted him, because I was feeling guilty taking a spot.  He did say he was very surprised that the state hasn't contacted me, because if you go 90 days ( I believe) without using ADAP, you are kicked off.  You have to re-enroll every July.  I've been on the list since Jan 2009. 

Offline leatherman

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Re: ADAP Watch June 11, 2010
« Reply #16 on: June 12, 2010, 12:29:52 AM »
Four years ago in 2006, 3 people in Kentucky and 1 person in South Carolina actually died while on the ADAP waiting list before they could get meds. Already in 2008, 1 person has died in South Carolina while on the drug waiting list.
oops I got some numbers and dates wrong - and the actual numbers are worse!
In 2003, eight Americans (five in Kentucky and three in W Virginia) died while on ADAP waiting lists, and in 2006 four South Carolinians suffered the same fate. In fact, thirty-five people have died on ADAP waiting lists since 2000.
http://www.adapadvocacyassociation.org/pdf/2009_aaa_Newsletter_January_ADAPs.pdf

I mentioned how I've heard of people dying on waiting lists in other states.  He said we don't know the all the circumstances.  He said those could have been people diagnosed very late and already very ill and would probably have died anyway.
That's a pretty pessimistic spin on it for an advocate for HIV positive people.

I totally understand that some people are not diagnosed in time for the meds to be able to help in time (case in point my own late partner. in the hospital after his AIDS diagnosis they began treatment, yet he died 2 months later); however, plenty of people are diagnosed late, get treatment, and live (case in point, I was diagnosed with AIDS in a hospital with PCP, was immediately put onto meds, and am still here nearly 20 yrs later. and there are plenty of other stories just like that here ;) ).

It's also a pretty shoddy attitude for an advocate for HIV poz people in a state where 5 people died while on a previous waiting list. ;)

I contacted him, because I was feeling guilty taking a spot.  He did say he was very surprised that the state hasn't contacted me, because if you go 90 days ( I believe) without using ADAP, you are kicked off.  You have to re-enroll every July.  I've been on the list since Jan 2009. 
definitely keep up on that paperwork Ted! Even if you're not contacted, you need to stay up on that kind of thing (be proactive) and stay in contact with them.

Although you may feel bad about "taking a spot", if they aren't providing you meds, then they obviously aren't spending any money on you (yet), so you're probably not taking someone else's care away. Your case mgr is right on this acct though. You never know what the future might hold, so keep your name on the rolls, just in case.

It's part of dealing with the bureacracy. Plenty of people apply for disability, etc. knowing they will be turned down. But years down the line when they really do need assistance, they are already in the database with the first turn down. All the pertinent data about their case is already in the system (hiv diagnosis, lab work, etc) so then it's much easier to show the disease has progressed and help is obtained faster. ;)

wouldn't it be so much nicer to have universal health care, where everyone has some sort of basic care, without having to learning of the ropes of working the system. ::)

oh and by the way  :D
I asked our ADAP guy about this.
So? did he tell you why the KY waiting list decreased? ???
leatherman (aka mIkIE)


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

Offline tednlou2

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Re: ADAP Watch June 11, 2010
« Reply #17 on: June 12, 2010, 02:12:29 AM »
oh and by the way  :DSo? did he tell you why the KY waiting list decreased? ???

He said he would look into it.  I'll check back with him next week to see.

Offline mecch

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Re: ADAP Watch June 11, 2010
« Reply #18 on: June 12, 2010, 06:26:09 AM »
If big pharma ok'ed price cuts to ADAP, does this just give some wiggle room to ADAP with reduced budgets, or does it help eliminate waiting lists.

If agencies administering ADAP find a way for temporary free drugs direct from Pharma for those in dire need, is there a way to legislate this so Pharma HAS to supply drugs to those in need without insurance or government aid.

I ask because it just feels like America allows HIV+ Americans to be victimized by big corporations.

It boggles my mind that legislators want to keep the BP liability a mere millions.  And fishermen will suffer horrible and forever because of this.

That the Obama administration did not achieve any sort of reform or punishment of the big banks that stole billions for themselves and shareholders and only sufferred one bad year. While millions lost so much.

And that Big Pharma gets its high price from many many many countries - all Europe for example with socialised medicine is paying a good price for all these drugs.  So SURELY there can be some give back in the USA.  The insurance companies and the government is paying top dollar for a lot of prescriptions. Surely there can be some "required" give back from BIG PHARMA for the gaps.

« Last Edit: June 12, 2010, 06:28:34 AM by mecch »
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline leatherman

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Re: ADAP Watch June 11, 2010
« Reply #19 on: June 12, 2010, 10:09:10 AM »
If big pharma ok'ed price cuts to ADAP, does this just give some wiggle room to ADAP with reduced budgets, or does it help eliminate waiting lists.
it probably allows some wiggle room

every month more people turn up infected and need to be added to the ADAP rolls. look at the NC numbers for example. Although NC ADAP may be able to get a price cut for some of the current 600+ clients, in the last two weeks that system picked up another 100+ clients that need meds. There goes the wiggle room. ::)

it possibly eliminates PART of the waiting list

some people may be able to have their whole regimen cost removed now by these pharma programs, allowing someone on the waiting list to be able to get fully enrolled into ADAP and to receive meds. However, if another new 50+ clients show up in the next month, well, they'll probably end up on the expanded waiting list.  ::)

like I just mentioned in the Florida ADAP thread
funding is based on last year's numbers because they have no way to accurately predict how many new cases will show up during the current year along with how many of those cases will need ADAP funding. Plus there is only a limited amount of money set aside for ADAP so if your state's ADAP rolls would jump by say 2000 people this year, there still might not be enough Federal funds for your state.
so no matter what extra money the feds give, no matter what deals pharma does to help provide more meds, it's an unending vicious cycle as people continually get infected. :'(
leatherman (aka mIkIE)


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

Offline gregftl

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Re: ADAP Watch June 11, 2010
« Reply #20 on: June 12, 2010, 02:00:12 PM »
One thing (and i know it will never happen) is the federal govt needs to let programs like ADAP get generic meds from Canada. Imagine how much money that would save. Didnt Illinois a few years ago approve getting meds from Canada for medicare or medicaid?

Offline mecch

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Re: ADAP Watch June 11, 2010
« Reply #21 on: June 12, 2010, 02:25:56 PM »
Since when does Canada make generic HIV drugs?????
I assume you mean other drugs for HIV+ people?
And are they "generic"?

If you mean HIV generic drugs, they are made in India, aren't they?
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline tednlou2

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Re: ADAP Watch June 11, 2010
« Reply #22 on: June 13, 2010, 12:23:43 AM »
definitely keep up on that paperwork Ted! Even if you're not contacted, you need to stay up on that kind of thing (be proactive) and stay in contact with them.

Although you may feel bad about "taking a spot", if they aren't providing you meds, then they obviously aren't spending any money on you (yet), so you're probably not taking someone else's care away. Your case mgr is right on this acct though. You never know what the future might hold, so keep your name on the rolls, just in case.

It's part of dealing with the bureacracy. Plenty of people apply for disability, etc. knowing they will be turned down. But years down the line when they really do need assistance, they are already in the database with the first turn down. All the pertinent data about their case is already in the system (hiv diagnosis, lab work, etc) so then it's much easier to show the disease has progressed and help is obtained faster. ;)

wouldn't it be so much nicer to have universal health care, where everyone has some sort of basic care, without having to learning of the ropes of working the system. ::)


The ADAP guy told me if the state tried to kick me off for not filling meds, I could always have my doc prescribe vitamins that ADAP covers.  Well, that seems kinda shady and I would be taking money from ADAP for vitamins that I could afford myself.  But a girl has to do what a girl has to do.  You're right that as long as I'm not filling meds, I'm not pulling money out of the program.  That makes me feel better.  If I were forced to do the vitamin thing, I would have to take the vitamins.  I would feel bad about having them pay for them and not take them. 

Offline leatherman

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Re: ADAP Watch June 11, 2010
« Reply #23 on: June 13, 2010, 01:31:40 AM »
to let programs like ADAP get generic meds from Canada.
Canada does not manufacture generic HIV meds, nor are generic meds the reason Canadians pay less for their HIV meds.

What happens is that Americans not only spend millions in aide for HIV drugs throughout the world, but we also pay a higher price for meds at home because we are a more wealthy nation. This in turn a) pays for the research and development of these drugs in the first place, and b) subsidizes the costs so that other (mainly poorer/lower GNP) nations can also have access to these life saving meds.

(of course, some may disagree with the concept of the med price paying for R&D - as it seems an awful lot of money goes into advertising various meds - but that's a whole other discussion. ;) )

Though it's not about HIV meds in particular, you might be interested to read this about.com page Why Are Medications Cheaper in Canada?. This page states that there are multiple reasons for the lower prices in Canada:

the Canadian government puts a cap, or ceiling, on the amount that drug companies can charge pharmacies and other distributors of drugs; the Canadian provinces have a drug formulary that puts restrictions on the use of new and expensive medications; Canadian pharmaceutical companies have lower liability costs than U.S. drug companies; and the most important factor may be the difference in the standard of living between the two countries. The average Canadian's standard of living is 20 percent to 30 percent lower than the average American's standard of living.

I thought that article also produced a nice example/explanation:
In the U.S, for example, a can of Miller’s beer may be less expensive in rural New Mexico than it is in Beverly Hills. Similarly, that is why some brand name drugs like Lipitor and Diovan are cheaper in Canada –- many Canadians cannot afford to pay as much as their American counterparts and the drug companies sell these medications for less.

so just like food prices vary throughout the states depending upon the economic climate, so too do HIV med prices around the world. Can you imagine if someone in Malawi, earning the average in 2007 of $160 a year, had to pay the $2300 a month my meds cost?
leatherman (aka mIkIE)


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

Offline edfu

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Re: ADAP Watch June 11, 2010
« Reply #24 on: June 13, 2010, 06:27:07 AM »
Some bottom-line food for thought:

The National ADAP Monitoring Project Annual Report notes:  "Drug spending by ADAPs has inceased more than seven-fold (617%) since 1996, more than twice the rate of client growth over this same period."

This startling statistic demonstrates that a large percentage of ADAP funding increases are being applied toward rising drug costs, instead of to increasing the number of patients accessing life-saving AIDS medication.


"No one will ever be free so long as there are pestilences."--Albert Camus, "The Plague"

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Offline Miss Philicia

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Re: ADAP Watch June 11, 2010
« Reply #25 on: June 13, 2010, 06:31:22 PM »
I asked our ADAP guy about this.  I'm actually enrolled in ADAP here in KY, but I'm still not on meds.  I asked him whether I should take my name off, because I was taking a spot for someone else.  He said I should stay on it, because I never know when I will need to start meds.  He said I could take my name off and then be told on my next appt that I need to start meds.  He told me no one is being allowed to die--at least here in KY.  He said they go through drug company programs for the people who need meds until they can get on ADAP. 

I mentioned how I've heard of people dying on waiting lists in other states.  He said we don't know the all the circumstances.  He said those could have been people diagnosed very late and already very ill and would probably have died anyway.  He said if someone ended up in the hospital, he can't imagine denying that person life saving meds.  Now these are his words...not mine.  I contacted him, because I was feeling guilty taking a spot.  He did say he was very surprised that the state hasn't contacted me, because if you go 90 days ( I believe) without using ADAP, you are kicked off.  You have to re-enroll every July.  I've been on the list since Jan 2009. 

I've heard that both from people I know personally on the Ryan White Planning Council in Philly and have read the same in an interview with the ADAP honcho in Florida.
"I’ve slept with enough men to know that I’m not gay"

Offline gregftl

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Re: ADAP Watch June 11, 2010
« Reply #26 on: June 26, 2010, 03:22:35 AM »
What I meant was getting generic hiv meds from Canada. I didnt intend on meaning meds that were made in Canada. One of the more popular companies, Cipla, that makes generic hiv meds can be readily purchased in Canada and on Canadian online websites. According to the FDA website ......Cipla is FDA approved and also has approval from the WHO. In fact, Cipla actually manufactures some drugs that are sold here in the United States.

http://en.wikipedia.org/wiki/Cipla

http://www.answers.com/topic/cipla
« Last Edit: June 26, 2010, 03:27:45 AM by gregftl »

Offline leatherman

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Re: ADAP Watch June 11, 2010
« Reply #27 on: June 26, 2010, 10:52:42 AM »
In fact, Cipla actually manufactures some drugs that are sold here in the United States.
Could you provide a source for that information?
Many of the meds that Cipla makes are generic versions of US meds still currently under patents (ie Viraday for Atripla, and Antiflu for Tamiflu), so I doubt any of their drugs are sold here. The articles you mentioned, and others I read, use the euphemism "North America" when they are really speaking about Canada.

But that's beside the point. Meds in America are more expensive than in say Uganda, or even Canada, in the same way that rent for a single bedroom in New York City is much much higher than say rent on a single bedroom in York SC.

Though in part I'm sure that there is some "greed" involved, for the most part the reason things cost differently in different areas of the nation or different areas of the world is about simple economics.
leatherman (aka mIkIE)


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

Offline WillyWump

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Re: ADAP Watch June 11, 2010
« Reply #28 on: July 26, 2010, 11:09:17 PM »
7/23/10 Updated list from NASTAD:

http://nastad.org/Docs/Public/InFocus/2010723_ADAP%20Watch%20update%20-%207.23.10.pdf

2158 individuals.

Florida: 839 individuals
Georgia: 192 individuals
Hawaii: 13 individuals
Idaho: 29 individuals
Iowa: 98 individuals
Kentucky: 214 individuals
Louisiana: 189 individuals*
Montana: 22 individuals
North Carolina: 182 individuals
Ohio: unknown individuals**
South Carolina: 231 individuals
South Dakota: 23 individuals
Utah: 126 individuals

Interestingly, Louisiana has capped their enrollment with no waiting list so there is no telling how many people are going without in LA. This stinks of politics, "lets just cap the enrollment and that way we only have to report 189 Individuals". This scares me, as I hope it doesnt set precedence that other states will begin to follow.

Ohio is reporting "unknown individuals", undoudtedly due to the fiasco Inchling reported on in the other thread.

-Will
POZ since '08

Last Labs-
11-6-14 CD4- 871, UD
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 leatherman

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Re: ADAP Watch June 11, 2010
« Reply #29 on: July 26, 2010, 11:42:29 PM »
Thanks for that update WW. ;)
The changes over the last 3 weeks:

Florida: +726
Georgia: +192
Hawaii: +6
Idaho: +4
Iowa: +7
Kentucky: +36
Louisiana: +189
Montana: +22
North Carolina: +528
Ohio: ??
South Carolina: +86
South Dakota: +2
Utah: +22
Wyoming: -20

The good news is that Wyoming cleared their list; however, that improvement was totally trashed by the huge additions from Florida, Georgia, Louisiana, North Carolina, and god only knows how many will be added from Ohio.

(boy if I was still living in OH, I guess for a change I would have to be happy to have had such low cd4 counts as 5, 12, 22, and 44 ::) I would have never imagined that having a low 176 average cd4 for 10 yrs would be a good thing; but if I was still in Ohio at least it would insure that I would still have access to meds)
leatherman (aka mIkIE)


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

Offline phildinftlaudy

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Re: ADAP Watch June 11, 2010
« Reply #30 on: July 27, 2010, 08:04:16 AM »
Also, the waiting list reflects those persons eligible for ADAP who are not receiving -- it doesn't even begin to reflect those who were on ADAP who are now being dropped because the eligibility criteria has been changed..... right?  >:(
September 13, 2008 - diagnosed +
Labs:
Date    CD4    %   VL     Date  CD4  %   VL
10/08  636    35  510   9/09 473  38 2900  12/4/09 Atripla
12/09  540    30    60   
12/10  740    41  <48   
8/11    667    36  <20  
03/12  1,041  42  <20
05/12  1,241  47  <20
08/12   780    37  <20
11/12   549    35  <20
02/12  1,102  42  <20
11/12   549    35  <20

Offline WillyWump

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Re: ADAP Watch June 11, 2010
« Reply #31 on: July 27, 2010, 12:15:49 PM »
Also, the waiting list reflects those persons eligible for ADAP who are not receiving -- it doesn't even begin to reflect those who were on ADAP who are now being dropped because the eligibility criteria has been changed..... right?  >:(

This is true.

With just a cursory perusal of the lists one could easily think " Oh, there are only 2158 people waiting for assistance and no more". However the "Waiting lists" is just a small glimpse of the bigger problem overall and doesnt even begin to account for the people who are turned away due to lowered financial eligibility or capped enrollment. 6 or more states have already or will be lowering financail eligibility by March 2011. So this means there is a certain amount of people who will not even be counted as needing ADAP assistance. Hell, Look at Louisiana with their capped enrollment, they dont even bother with a waiting list at all. They just slammed the door shut. Who knows how many people are in need of assistance in that state. Ohio is also considering a capped enrollment by March 2011. Capped enrollment is a scapegoat and is a tool states can use to avoid reporting the true numbers of people needing assistance. Capped enrollment should be outlawed and they should be required to maintain a waiting list so a better view of the situation is apparent to all (although this wouldnt reflect the number of people affected by lowered financial eligibility).

So it seems the ADAP waiting lists numbers are quickly becoming a bogus snapshot into the real situation. A state can lower eligibility or initiate capped enrollments and they dont have to account for the "real" number of people needing ADAP assistance. Politically it's good for them because with lower reported numbers of people waiting for assistance there is less outcry, and thus they can avoid pressure to increase funding to clear the waiting lists. In a way they are sweeping the problem under the rug out of the sight of everyone. By doing this, Capping enrollment/Lower financial eligibility, they are also avoiding the unsavory situation of having to report people dying while on waiting lists. Afterall, having a large amount of people dying while on waiting lists would create a huge public outcry and would result in the states having to increase funding for ADAP..which is something they dont want to do.

-Will
« Last Edit: July 27, 2010, 12:18:30 PM by WillyWump »
POZ since '08

Last Labs-
11-6-14 CD4- 871, UD
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 gregftl

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Re: ADAP Watch June 11, 2010
« Reply #32 on: September 06, 2010, 05:13:01 PM »
leatherman,

about cipla making drugs that are sold here in the US. it says so on that wikipedia link i provided:

"Other drugs

"Cipla has a product range comprising antibiotics, anti-bacterials, anti-asthmatics, anthelmintics, anti-ulcerants, oncology, corticosteroids, nutritional supplements and cardiovascular drugs. The company has at least nine different prescription drugs registered with the US FDA.[15] Cipla is into anti-bacterial and anti-asthmatic segments and is the first player in Asia to launch non-CFC metered dose inhaler."

Link to Cipla info
http://en.wikipedia.org/wiki/Cipla

Offline leatherman

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Re: ADAP Watch June 11, 2010
« Reply #33 on: September 06, 2010, 05:29:22 PM »
The company has at least nine different prescription drugs registered with the US FDA.[15]
Ah! I do see that now, so I went and did a little more research on Cipla, and on Viraday. However, the Atripla patent doesn't end until 2017, so Viraday has a while to go before it's marketed within the US.
leatherman (aka mIkIE)


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

Offline gregftl

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Re: ADAP Watch June 11, 2010
« Reply #34 on: September 11, 2010, 02:11:55 PM »
Yah but there are tons of canadian online pharmacies u can order Viraday from. They just call your doctor get a rx for the brand name then their pharmacist converts the US rx to a canadian rx and gives you the Viraday. Best place i've found online with the best prices is candrugstore.com but you can check out a ton of other sites for hiv meds.... at pharmacychecker.com they have customer ratings on there too.

Offline leatherman

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Re: ADAP Watch June 11, 2010
« Reply #35 on: September 11, 2010, 03:09:28 PM »
have you contacted an ASO, or even Atripla (Bristol-Myers Squibb & Gilead Sciences), about getting your meds? with the ADAP crisis going on, the manufacturers of hiv meds (I think all now http://forums.poz.com/index.php?topic=33054.msg407202#msg407202) have discounts, or special plans with low co-pays, to get the meds. for more info check out this link http://www.atripla.com/hiv-med-cost.aspx .

Even though ADAP is an issue in many places right now, depending on the eligibility requirements, there are a ton of ways to get ahold of the meds. You just gotta shop around or know a source (like an ASO) that knows of the various methods of obtaining meds. Although there's a waiting list in SC, my local ASO has been able to keep all of it old clients - and the new ones that come in each month - stocked with meds.
leatherman (aka mIkIE)


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

Offline gregftl

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Re: ADAP Watch June 11, 2010
« Reply #36 on: September 11, 2010, 07:23:28 PM »
n/m
« Last Edit: September 11, 2010, 08:12:55 PM by gregftl »

Offline onemoretime

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Re: ADAP Watch June 11, 2010
« Reply #37 on: September 11, 2010, 07:46:15 PM »
right now i work and have great ins and i am very greatfull.   but i worry about what ahappens when i dont work. willl i be able to  get meds
08/04 diag 490 cd4 vl 50,000
10/25/05 436 50,513 hvb 1.1 billion
12/13/05 truvada sustiva
02/16/06 742 und, hpb 63,000
04/27/06 740 und hpb 60,000
01/05/07 458 und hvb und
03/08   470 undetectable still on atripla. Non smoking (chantex)
08/08 cd4 550 undetectable hiv, Hep B UND. Atripla
06/09  cd4 444, vl undetectable testo 130
09/09/09 CD4 687 46% UND  Testo 213 started androgel
10/12/09 cd4 682 46% und testo 597
01/12/10 cd4 842 48% und testo 434
041010 cd4 693  53% testo 492
100410 cd4 568 48% testo 523
012711 cd4 523 hcv 56 testo 596
083011 cd4 280 Hcv/HIV und
042912 cd4 158 hcv /hiv und, was on hep c for 11 months. do have ssdi filed and getting LTD
061912 cd4 151, bactrum, hep c and hiv und
071712 cd4 287 52% HIV HCV und
112012 cd4 520

Offline leatherman

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Re: ADAP Watch June 11, 2010
« Reply #38 on: September 11, 2010, 07:59:15 PM »
but i worry about what ahappens when i dont work. willl i be able to  get meds
does it look like you'll be losing that insurance soon? are you nearing retirement?
the good thing about meds is that they can give you nearly a normal lifespan, so having to quit work becomes less likely and working till retirement is more of a probability. ;)

don't go looking for trouble or worries when things are good for you. ;)
leatherman (aka mIkIE)


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

Offline gregftl

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Re: ADAP Watch June 11, 2010
« Reply #39 on: September 11, 2010, 08:13:24 PM »
well i take combivir and viramune..........i was only talking about viraday b/c you brought up that medicine. i can get combivir and viramune on candrugstore.com for a total of 199 bucks a month. 110 for the viramune (nevimune-cipla) and 89 for the combivir (duovir-cipla). i've already asked my doctor who attends worldwide hiv conferences all the time and he says cipla is a very reputable company.

as for the patient assistance programs.....i've called both companies that make my drugs and i make too much money to qualify for any of their assistance programs
« Last Edit: September 12, 2010, 12:18:52 PM by gregftl »

Offline onemoretime

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Re: ADAP Watch June 11, 2010
« Reply #40 on: September 11, 2010, 08:42:35 PM »
does it look like you'll be losing that insurance soon? are you nearing retirement?
the good thing about meds is that they can give you nearly a normal lifespan, so having to quit work becomes less likely and working till retirement is more of a probability. ;)

don't go looking for trouble or worries when things are good for you. ;)

Hey man.  no so far so good, ur right i soulld just chill.  i would llike to retire a little earleir then a regular person >>>LOLOL   just inscase.. i dont want to wokr till im dead.  after alll i have lived a crazy life.  I can qualify for disability with my back issues if i really needed tooo
08/04 diag 490 cd4 vl 50,000
10/25/05 436 50,513 hvb 1.1 billion
12/13/05 truvada sustiva
02/16/06 742 und, hpb 63,000
04/27/06 740 und hpb 60,000
01/05/07 458 und hvb und
03/08   470 undetectable still on atripla. Non smoking (chantex)
08/08 cd4 550 undetectable hiv, Hep B UND. Atripla
06/09  cd4 444, vl undetectable testo 130
09/09/09 CD4 687 46% UND  Testo 213 started androgel
10/12/09 cd4 682 46% und testo 597
01/12/10 cd4 842 48% und testo 434
041010 cd4 693  53% testo 492
100410 cd4 568 48% testo 523
012711 cd4 523 hcv 56 testo 596
083011 cd4 280 Hcv/HIV und
042912 cd4 158 hcv /hiv und, was on hep c for 11 months. do have ssdi filed and getting LTD
061912 cd4 151, bactrum, hep c and hiv und
071712 cd4 287 52% HIV HCV und
112012 cd4 520

Offline gregftl

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Re: ADAP Watch June 11, 2010
« Reply #41 on: September 18, 2010, 08:34:22 PM »
Florida up to over 1600 people on the waiting list since it was implemented June 1st. 1600 people in 3.5 months. Pitiful

I feel like we are living back in the 1980's.

 


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