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Author Topic: Why are so many HIV+ people on state assistance?  (Read 10086 times)

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Offline buginme2

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Why are so many HIV+ people on state assistance?
« on: January 01, 2011, 11:44:19 PM »
I read quite often that HIV is a chronic manageable disease.  However, based on many of the posts on this forum it seems that quite a few people receive state assistance such as ADAP.  Is this due to not being able to work and therefore not having private insurance?  I don't mean any disrespect, there just seems to be a lot of mixed signals with regards to this disease.
"All I need are some tasty waves, a cool buzz, and I'm fine."

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Offline edfu

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Re: Why are so many HIV+ people on state assistance?
« Reply #1 on: January 02, 2011, 12:41:38 AM »
I don't mean any disrespect, but perhaps you haven't heard that more than 50 million Americans don't have health insurance.  Perhaps you haven't heard we are in a recession.

They don't have insurance because they have lost their jobs.  They don't have insurance because companies are dropping health-care benefits because of the excessively high cost.  They don't have insurance because they can't afford the premiums, often between $500-$1,000 per month for individual policies, and they would rather keep roofs over their heads and buy food.  Insurance premiums are 47% higher today than they were in 2005.  They don't have insurance because the insurance companies are more interested in profits than in preserving the health of their clients.  They may have insurance, but they still can't afford the outrageous co-pays, especially for HAART.  They don't have insurance because of pre-existing conditions.  They don't have insurance because the U.S. government does not deem health to be an intrinsic human right, as does every other government in the Western democratic world.    
« Last Edit: January 02, 2011, 12:48:18 AM by edfu »
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Offline woodshere

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Re: Why are so many HIV+ people on state assistance?
« Reply #2 on: January 02, 2011, 12:45:34 AM »
Perhaps it could be because we live in a country where over 40 million people live without insurance or many jobs have no benefits.  And last time I checked HIV ain't cheap.

Looks like edfu beat me to it, but wanted to get my 2 cents in on a thread that just rubbed my in a major bad way!!!
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Offline Jeff G

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Re: Why are so many HIV+ people on state assistance?
« Reply #3 on: January 02, 2011, 12:52:13 AM »
There are also some of us who have had complications from having HIV for so long that we require assistance or have been forced onto disability because of disease progression and high cost of health care . For some its a complicated answer to your question . 

Offline edfu

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Re: Why are so many HIV+ people on state assistance?
« Reply #4 on: January 02, 2011, 12:55:28 AM »
I read quite often that HIV is a chronic manageable disease.  However, based on many of the posts on this forum it seems that quite a few people receive state assistance such as ADAP.  Is this due to not being able to work and therefore not having private insurance?  

I see from your previous posts that you have insurance, yet you have also taken advantage of Atripla's co-pay assistance program.  If you have "insurance," why have you enrolled in this program?  
« Last Edit: January 02, 2011, 01:45:13 AM by edfu »
"No one will ever be free so long as there are pestilences."--Albert Camus, "The Plague"

"Mankind can never be free until the last brick in the last church falls on the head of the last priest."--Voltaire

Offline buginme2

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Re: Why are so many HIV+ people on state assistance?
« Reply #5 on: January 02, 2011, 01:50:32 AM »
Wow different response than I expected.  Maybe I didnt word my question accurately.  My concern isnt to fault anyone for taking a part in a program, I do take part of Atripla's copay assistance.  My question is:  it seems like there are many that are on some form of assistance, leading me to beleive that they are not employed full time.  Being told that HIV is a manageable disease yet there are quite a few unable to work is contradicotry. 
"All I need are some tasty waves, a cool buzz, and I'm fine."

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Offline edfu

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Re: Why are so many HIV+ people on state assistance?
« Reply #6 on: January 02, 2011, 02:11:14 AM »
Being employed full-time today is no longer a guarantee of health insurance, and even when health insurance is included as a benefit of full-time employment, it is not a guarantee of 100% benefits when co-pays can be so exceedingly high.  Your use of Atripla's co-pay assistance should have told you this.  There are many HIV-positives who are employed full-time and have insurance but still cannot afford the costs of treating their HIV infection.  There are others who can work full-time but have been unable to find employment.  It is incorrect to assume that all those on ADAP cannot work full-time. 

The question of "manageable" disease is a topic for another thread.  It may be "manageable" in medical terms, but many of us have to work full-time to access and afford the medical treatments and care that may make it "manageable."  Those treatments and care do not come free of charge, whether it be from  (woefully inadequate) insurance, ADAP programs, or pharmaceutical assistance programs.     
"No one will ever be free so long as there are pestilences."--Albert Camus, "The Plague"

"Mankind can never be free until the last brick in the last church falls on the head of the last priest."--Voltaire

Offline leatherman

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Re: Why are so many HIV+ people on state assistance?
« Reply #7 on: January 02, 2011, 02:13:11 AM »
There are also some of us who have had complications from having HIV for so long that we require assistance or have been forced onto disability because of disease progression and high cost of health care . For some its a complicated answer to your question . 
I think your simple answer is a perfect description of the assistance I receive. ;)

don't forget, bugs, that you'll hear more about the assistance issues here because this is a support site. ;) People with the funds, insurance and good health to not need assistance aren't here asking questions about the assistance; but a bunch of people without those resources often show up here trying to find some answers.

as JG points out too, remember for a bunch of us here HIV was NEVER called chronic and manageable because of the meds we started on. A bunch of us were "supposed" to die like our friends did. It's only those that started treatment in say 2005 on that got hiv deemed "chronic and manageable". Don't make the mistake of confusing apples and oranges here. ;)

also look at that membership number, 12797 when I'm writing this, and that's with people from around the world. So just taking 2/3 of the members as being from the US, is about 9597 out of 599,819 HIV infected (2007) is only 1.6% of HIV+ americans here (and not all posting, not all started on the newer meds, and not all on assistance either). Judging the issue of state assistance by the questions and responses here really can't be done because this isn't a good or accurate sampling.

For some its a complicated answer to your question . 
maybe the answer IS simple when you ask one individual; but asking that question across the board brings a complicated answer
leatherman (aka mIkIE)


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Oh my friends, my friends forgive me
That I live and you are gone.
There's a grief that can't be spoken.
There's a pain goes on and on.
Empty chairs at empty tables
Where my friends will meet no more.

"Empty Chairs at Empty Tables" from Les Miserables

Offline freaky_dream

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Re: Why are so many HIV+ people on state assistance?
« Reply #8 on: January 02, 2011, 02:14:42 AM »
You have to realize that there are people who have had this disease for over 15-20 plus years and did not initially have access to meds as they didn't exist then. The years without meds left a lot of people with chronic lingering health issues. Not to mention that a lot of the early meds caused problems on their own, such as Peripheral neuropathy ,which left many people unable to work due to the constant pain in their hands and feet.

You're lucky, so to speak, that you have access to modern medications that do not have serious adverse effects.

Offline Ann

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Re: Why are so many HIV+ people on state assistance?
« Reply #9 on: January 02, 2011, 05:44:38 AM »
There are plenty of ways that companies can get out of providing health insurance for their employees. I found that out first hand back in 1984 when I was working for a nursing home.

Most health care facilities will have overlapping shifts so everyone can be brought up to speed on the patients' current health status when coming on a new shift (usually called "hand-over"). Not this place. We had to get our "hand-over" from written reports which were often lacking. The shifts were straight eight-hour ones with no overlap. The RNs didn't have to clock out for lunch, so they worked a 40 hour week. Those of us who were cleaners and nurse's aides had to clock out at lunch, so the most we could work was a 37.5 hour week.

The state law said that a worker had to be clocked on for no less than 40 hours a week before their employer legally had to provide health-care coverage. So even though I was "at work" 40 hours a week (we were not permitted to leave the premises for lunch and if there was an emergency, we had to help out without clocking back in) I was not allowed to participate in the company's health care plan. I worked full time, for all intents and purposes, without health insurance to show for it. And as I was only paid pennies above minimum wage, I couldn't afford private insurance either.

Sure, I could have gotten another job, if any of the dozens I applied for each week had been hiring. I was lucky to have the poorly paid job I had.

As I said, this happened to me back in 1984. Things have only gotten worse since then where employment and health care coverage is concerned. Thank goodness I moved to the Rock long before I ended up with hiv. The NHS rocks.
« Last Edit: January 02, 2011, 05:46:41 AM by Ann »
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Offline Dachshund

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Re: Why are so many HIV+ people on state assistance?
« Reply #10 on: January 02, 2011, 08:01:59 AM »
Wow different response than I expected.  Maybe I didnt word my question accurately.  My concern isnt to fault anyone for taking a part in a program, I do take part of Atripla's copay assistance.  My question is:  it seems like there are many that are on some form of assistance, leading me to beleive that they are not employed full time.  Being told that HIV is a manageable disease yet there are quite a few unable to work is contradicotry. 

I work full time, but my job does not include health insurance. I receive assistance through Ryan White/ADAP. It covers my meds and labs and nothing else. Without it I could not afford my life saving meds.

Offline buginme2

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Re: Why are so many HIV+ people on state assistance?
« Reply #11 on: January 02, 2011, 11:02:57 AM »
Ok let me rephrase, jg stated many with HIV are forced onto disability.  Why? What is the disability and is it only due to older medication or is it due to HIV disease as well.   My whole point is there seems to be a contradictory message aboute this disease.  Chronic and manageable are thrown about quite often however when you read about peoples individual experiences with the disease there seems to be quite a lot of disability and hardship (anecdotically). 

It seems like for someone new to thisdisease there is something not being said.  Sorry if this is in the wrong category feel free to move it.  Nor is this a question regarding the political aspects of insurance as a whole.
"All I need are some tasty waves, a cool buzz, and I'm fine."

http://www.youtube.com/watch?v=6e0gcEC1TWE

Offline laslopaka

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Re: Why are so many HIV+ people on state assistance?
« Reply #12 on: January 02, 2011, 12:31:31 PM »
Hi All,
 BRAVO> LEATHERMAN. Well said. :)
You told it like it is. I woke up this morning feeling really good until I read this thread. I got really depressed and had to leave the web site and get my thoughts together. :' >:(( Because of my status I was forced to quit my job and go on state aid and food stamps. I got denied for SSDI and am appealing my case with the help of (LASH)another free benefit from my state for legal services.
With the help from my partner and family and the state Of Hawaii I have been able to just get by. I receive no help from the ASO I am with.
So until I get my SSDI I will continue to to get what ever help to  just survive.
Sorry folks, just had to vent and hope I am posting in the right way. LOL   ??? 

Offline buginme2

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Re: Why are so many HIV+ people on state assistance?
« Reply #13 on: January 02, 2011, 01:03:57 PM »
Laslopka you said because of your status you had to quit your job.  Why? What about your status caused this?  This is kind of why I started this thread.  I read statemebts like this quite often from people on here.  Many times there is nothing specific mentioned.   As someone who is new to being positive its kind of frightening reading anbout so mamy people who are disabled due to HIV, yet not understanding what the disability is.
"All I need are some tasty waves, a cool buzz, and I'm fine."

http://www.youtube.com/watch?v=6e0gcEC1TWE

Offline Jeff G

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Re: Why are so many HIV+ people on state assistance?
« Reply #14 on: January 02, 2011, 01:26:50 PM »
Ok let me rephrase, jg stated many with HIV are forced onto disability.  Why? What is the disability and is it only due to older medication or is it due to HIV disease as well.   My whole point is there seems to be a contradictory message aboute this disease.  Chronic and manageable are thrown about quite often however when you read about peoples individual experiences with the disease there seems to be quite a lot of disability and hardship (anecdotically). 

It seems like for someone new to thisdisease there is something not being said.  Sorry if this is in the wrong category feel free to move it.  Nor is this a question regarding the political aspects of insurance as a whole.


Go back and read Leathers reply , it really does hit at the heart of the matter .I will add this though , the chronic and manageable term covers any quality of life between running a marathon or being in a wheelchair , its simply not the same for all people and there are no guarantees with this disease .

Offline laslopaka

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Re: Why are so many HIV+ people on state assistance?
« Reply #15 on: January 02, 2011, 03:19:17 PM »
Well Let me begin,
I was diagnosed with aids cd4:84(now cd4:208) back in Jan 2010. Also had a diagnoses of HIV Encephalopathy(Dementia). Fell down and and required stitches to my face. My memory was shot and still is. I have trouble keeping my balance. Trouble with speech. Depression. Hepatitis among a lot of personal problems. Filed for bankruptcy. My partner and family does not want me to go back to work, because of my Encephalopathy not because of my HIV status which more or less I can handle. One of my Doctors said that I had been in my state for many years. I am 53 years old and have worked since I was 17 years old. I feel that I had paid for to be able to survive off of state aid and  state aid until i get my SSDI.
Sorry if I misunderstood you or anybody here but I am not trying to scam the state or the U.S. Gov. which I put 5 years of my life in the Air Force. I just am not able to work in my profession as a Chef. I do not see myself improving anymore which I pray will happen.
Aloha :)



Sorry if I misunderstood 
Laslopka you said because of your status you had to quit your job.  Why? What about your status caused this?  This is kind of why I started this thread.  I read statemebts like this quite often from people on here.  Many times there is nothing specific mentioned.   As someone who is new to being positive its kind of frightening reading anbout so mamy people who are disabled due to HIV, yet not understanding what the disability is.

Offline leatherman

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Re: Why are so many HIV+ people on state assistance?
« Reply #16 on: January 02, 2011, 04:40:53 PM »
reading anbout so mamy people who are disabled due to HIV, yet not understanding what the disability is.
actually, I would venture to say that very few people, if any, are disabled due to HIV per se (maybe even no one); instead it would be more accurate to say that most people who have been classified as disabled it has been due to AIDS. (Being below 200 cd4s and having OIs is often a life-changing health-altering situation.) To be classified as disabled you have to meet certain qualifications** and just being HIV positive is NOT a qualification.

edited to add:
**here's an article by Tim Horn discussing SS diability (and some proposed changes)
Quote
Current Qualifications
...
To qualify, individuals must meet SSA's definition of disability, which differs for adults and children. For adults, disability is defined as "an inability to engage in any 'substantial gainful activity'"--a level of work activity and earnings, as determined by SSA--"by reason of any medically determinable physical or mental impairment(s) which can be expected to result in death or which has lasted or can be expected to last for a continuous period of not less than 12 months."
as you can read, a person usually has to be quite ill to get disability, which results from late diagnosis, ineffective treatment, OIs, impairing side effects, etc
« Last Edit: January 02, 2011, 06:48:21 PM by leatherman »
leatherman (aka mIkIE)


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

Oh my friends, my friends forgive me
That I live and you are gone.
There's a grief that can't be spoken.
There's a pain goes on and on.
Empty chairs at empty tables
Where my friends will meet no more.

"Empty Chairs at Empty Tables" from Les Miserables

Offline wolfter

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Re: Why are so many HIV+ people on state assistance?
« Reply #17 on: January 02, 2011, 06:35:05 PM »
Maybe in terms of other illnesses will it drive the point home.  Diabetes is a chronic manageable disease but people still loose life and limb while others can live quite old.  It is chronic and manageable in SOME patients.  We'll have to wait til the next generation of LTS to see if the newer drugs cause less long term issues.  Thos newly diagnosed today obviously have a greater chance combating the illness then we did in the 80's and 90's.

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Offline jkinatl2

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Re: Why are so many HIV+ people on state assistance?
« Reply #18 on: January 02, 2011, 09:04:05 PM »
This is part of the point I was making in my "fallacy of no big deal" thread. Assuming a person adopts a first-line regimen with few appreciable short or long-term side effects, PAYING for that regimen is exhaustive.

And considering that many people get HIV before they are settled in their careers or are financially sound, HIV can not only limit a person's opportunities for advancement, but determine the course of their lives.

If you are a professional, highly degreed person and acquire HIV? Likely not as big an issue. But the average 25 year old? Well, until they find a definitive cure and until that cure trickles down from the wealthiest to the rest of us, relying on some sort of assistance with the horrific medical costs of HIV treatment will, even in the absence of side effects, become a controlling factor in a person's life.

That's part of what "manageable" means.

Can it be overcome? Absolutely. Ask girls who had children in high school. But will success stories be determined by outside sources? Yeah, probably.


Of course, this applies to the USA and places without socialized medicine. Other places' mileage may vary.
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Offline wtfimpoz

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Re: Why are so many HIV+ people on state assistance?
« Reply #19 on: January 03, 2011, 01:50:21 AM »
The OP asked why so many HIV+ are on public assistance.  We are in fact disproportionately uninsured, and this is a reasonable question for a newbie to ask, albeit one which he may not really want to know.  Acknowledging the truth behind this is an important step in understanding the magnitude of the problem HIV presents.  Realizing the truth of HIV is in itself important so that those of us who are "doing well" with the disease can sympathize with those who've had a more difficult time, understand the need to support them, and support the preservation of programs and benefits which they need and we may need. 

How exactly did we come to conclude that he needed to know the tangental fact that XX million people in the US are uninsured?  What does his participation in the privately funded Atripla copay assistance have to do with anything?  The inclusion of that fact doesn't even accomplish its goal of making him sound hypocritical.  Nothing in his original posts betrayed an ignorance of the general healthcare issues in this country, he merely wanted to know why our "chronic, manageable condition" oftentimes plays out in such a difficult way.  To those of you who actaully answered his questions, I applaud you.  You've responded with greater experience, clarity and wisdom than I have.  To the rest of you...how sad.  You blew an opportunity to teach on a chance to lecture.  Your decision has left us all a little more poor. 

***

From a sociological standpoint, I'd like to volunteer that pozzies are probably more likely to belong to groups that are uninsured or underinsured and to rely on public assistance more often.  We're more likely to suffer job discrimination which forces us into the reliance upon public assistance.  In the US, this discrimination is, unfortunately, logical, as we cost our employers tens of thousands of dollars a year in insurance premiums.  Many of us, even at big companies, have giant targets on our backs from the words "your test came back positive". 

Bug, you've come far enough to notice that "there's something not being said".  Ok, I'll say it.  Our long term prognosis, even with the "newer meds" is not currently as optimistic as, say, diabetes, and many of the complications which follow HIV infection are more likely to force us out of the labor market and onto public assistance.  The phrase "chronic, manageable condition" is a nicety extended to newly infected like ourselves trying to cope with the magnitude of what we face.  Its politically expedient too, as it justifies the recission of public assistance.  HIV is fraught with "comorbidities", at rates far greater than most things we would comfortably call "manageable".  A carpenter who loses his hips at 40, or a stockbroker who loses his mind at 50...both ultimately wind up receving state help.  These are issues which the meds only mitigate, but never completely eliminate the possiblity.  Does this mean it'll happen to you?  No.  There are plenty of long termers who've stumbled along with low cd4 and high viral loads for decades, and still kick it in the upper echelons Corporate America without any physical side effects.  You are however more likely to find yourself facing long term issues than your neighbor with, say, athsma.     

So what would I recommend?  Speak up for us.  Its never too late to drop a letter to the NIH's Francis Collins and request that we fund cure research.  Vote like you mean it, because improvements in healthcare laws will do wonders for your long term opportunities.  Donate your time, or at least your money.  Republicans in the house want to dismantle healthcare changes which could make your life better.  I recommend making sure that you're registered to vote.  Check out the activist forum and see what you can do to get involved. 
« Last Edit: January 03, 2011, 02:01:34 AM by wtfimpoz »
09/01/2009-neg
mid april, 2010, "flu like illness".
06/01/2010-weakly reactive ELISA, indeterminant WB
06/06/2010-reactive ELISA, confirmed positive.

DATE       CD4     %     VL
07/15/10  423     33    88k
08/28/10  489     19    189k
09/06/10-Started ATRIPLA
09/15/10  420     38    1400
11/21/10  517     25    51

Offline RapidRod

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Re: Why are so many HIV+ people on state assistance?
« Reply #20 on: January 03, 2011, 05:21:46 AM »
The OP asked why so many HIV+ are on public assistance.  We are in fact disproportionately uninsured, and this is a reasonable question for a newbie to ask, albeit one which he may not really want to know.  Acknowledging the truth behind this is an important step in understanding the magnitude of the problem HIV presents.  Realizing the truth of HIV is in itself important so that those of us who are "doing well" with the disease can sympathize with those who've had a more difficult time, understand the need to support them, and support the preservation of programs and benefits which they need and we may need. 

How exactly did we come to conclude that he needed to know the tangental fact that XX million people in the US are uninsured?  What does his participation in the privately funded Atripla copay assistance have to do with anything?  The inclusion of that fact doesn't even accomplish its goal of making him sound hypocritical.  Nothing in his original posts betrayed an ignorance of the general healthcare issues in this country, he merely wanted to know why our "chronic, manageable condition" oftentimes plays out in such a difficult way.  To those of you who actaully answered his questions, I applaud you.  You've responded with greater experience, clarity and wisdom than I have.  To the rest of you...how sad.  You blew an opportunity to teach on a chance to lecture.  Your decision has left us all a little more poor. 

***

From a sociological standpoint, I'd like to volunteer that pozzies are probably more likely to belong to groups that are uninsured or underinsured and to rely on public assistance more often.  We're more likely to suffer job discrimination which forces us into the reliance upon public assistance.  In the US, this discrimination is, unfortunately, logical, as we cost our employers tens of thousands of dollars a year in insurance premiums.  Many of us, even at big companies, have giant targets on our backs from the words "your test came back positive". 

Bug, you've come far enough to notice that "there's something not being said".  Ok, I'll say it.  Our long term prognosis, even with the "newer meds" is not currently as optimistic as, say, diabetes, and many of the complications which follow HIV infection are more likely to force us out of the labor market and onto public assistance.  The phrase "chronic, manageable condition" is a nicety extended to newly infected like ourselves trying to cope with the magnitude of what we face.  Its politically expedient too, as it justifies the recission of public assistance.  HIV is fraught with "comorbidities", at rates far greater than most things we would comfortably call "manageable".  A carpenter who loses his hips at 40, or a stockbroker who loses his mind at 50...both ultimately wind up receving state help.  These are issues which the meds only mitigate, but never completely eliminate the possiblity.  Does this mean it'll happen to you?  No.  There are plenty of long termers who've stumbled along with low cd4 and high viral loads for decades, and still kick it in the upper echelons Corporate America without any physical side effects.  You are however more likely to find yourself facing long term issues than your neighbor with, say, athsma.     

So what would I recommend?  Speak up for us.  Its never too late to drop a letter to the NIH's Francis Collins and request that we fund cure research.  Vote like you mean it, because improvements in healthcare laws will do wonders for your long term opportunities.  Donate your time, or at least your money.  Republicans in the house want to dismantle healthcare changes which could make your life better.  I recommend making sure that you're registered to vote.  Check out the activist forum and see what you can do to get involved. 
What did you just say?

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Re: Why are so many HIV+ people on state assistance?
« Reply #21 on: January 03, 2011, 06:40:54 AM »
For better and for worse, definitely, I do get the impression in Switzerland and Germany and especially Berlin that people take HIV in stride differently than Americans because of universal healthcare.  I mean nobody wants it, its dramatic, but if you get it, less social and financial crisis come crashing down. 
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Offline Jeff G

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Re: Why are so many HIV+ people on state assistance?
« Reply #22 on: January 03, 2011, 03:47:47 PM »
The OP asked why so many HIV+ are on public assistance.  We are in fact disproportionately uninsured, and this is a reasonable question for a newbie to ask, albeit one which he may not really want to know.  Acknowledging the truth behind this is an important step in understanding the magnitude of the problem HIV presents.  Realizing the truth of HIV is in itself important so that those of us who are "doing well" with the disease can sympathize with those who've had a more difficult time, understand the need to support them, and support the preservation of programs and benefits which they need and we may need. 

How exactly did we come to conclude that he needed to know the tangental fact that XX million people in the US are uninsured?  What does his participation in the privately funded Atripla copay assistance have to do with anything?  The inclusion of that fact doesn't even accomplish its goal of making him sound hypocritical.  Nothing in his original posts betrayed an ignorance of the general healthcare issues in this country, he merely wanted to know why our "chronic, manageable condition" oftentimes plays out in such a difficult way.  To those of you who actaully answered his questions, I applaud you.  You've responded with greater experience, clarity and wisdom than I have.  To the rest of you...how sad.  You blew an opportunity to teach on a chance to lecture.  Your decision has left us all a little more poor. 

***

From a sociological standpoint, I'd like to volunteer that pozzies are probably more likely to belong to groups that are uninsured or underinsured and to rely on public assistance more often.  We're more likely to suffer job discrimination which forces us into the reliance upon public assistance.  In the US, this discrimination is, unfortunately, logical, as we cost our employers tens of thousands of dollars a year in insurance premiums.  Many of us, even at big companies, have giant targets on our backs from the words "your test came back positive". 

Bug, you've come far enough to notice that "there's something not being said".  Ok, I'll say it.  Our long term prognosis, even with the "newer meds" is not currently as optimistic as, say, diabetes, and many of the complications which follow HIV infection are more likely to force us out of the labor market and onto public assistance.  The phrase "chronic, manageable condition" is a nicety extended to newly infected like ourselves trying to cope with the magnitude of what we face.  Its politically expedient too, as it justifies the recission of public assistance.  HIV is fraught with "comorbidities", at rates far greater than most things we would comfortably call "manageable".  A carpenter who loses his hips at 40, or a stockbroker who loses his mind at 50...both ultimately wind up receving state help.  These are issues which the meds only mitigate, but never completely eliminate the possiblity.  Does this mean it'll happen to you?  No.  There are plenty of long termers who've stumbled along with low cd4 and high viral loads for decades, and still kick it in the upper echelons Corporate America without any physical side effects.  You are however more likely to find yourself facing long term issues than your neighbor with, say, athsma.     

So what would I recommend?  Speak up for us.  Its never too late to drop a letter to the NIH's Francis Collins and request that we fund cure research.  Vote like you mean it, because improvements in healthcare laws will do wonders for your long term opportunities.  Donate your time, or at least your money.  Republicans in the house want to dismantle healthcare changes which could make your life better.  I recommend making sure that you're registered to vote.  Check out the activist forum and see what you can do to get involved. 

LOL ... pot calling the kettle black .

Offline thunter34

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Re: Why are so many HIV+ people on state assistance?
« Reply #23 on: January 03, 2011, 04:58:52 PM »
My whole point is there seems to be a contradictory message aboute this disease.  Chronic and manageable are thrown about quite often however when you read about peoples individual experiences with the disease there seems to be quite a lot of disability and hardship (anecdotically). 

It seems like for someone new to thisdisease there is something not being said. 

I just felt like this post needed to be quoted.  What a mouthful.  Speaks volumes. 
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Offline Joe K

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Re: Why are so many HIV+ people on state assistance?
« Reply #24 on: January 03, 2011, 06:58:45 PM »
The reason why "chronic and manageable" makes no sense, in relation to HIV, is that it is a "sound-bite" for politicians to throw around to pretend to everyone that they actually give a damn about HIV.  Since HIV is so damn chronic and manageable, why the hell do I keep burying friends who die from it?  It's all a marketing game to assure Americans that someone cares about HIV, just not enough legislators to find a couple hundred million, in a trillion dollar plus budget, for life saving medications.

You get warm fuzzies when you hear the phrase, as you forget the fact that millions of pozzie Americans barely exist, due to failing health, no job, no or inadequate health care, crushing health care costs or all of the above.  Pay no attention to that man behind the curtain, the drug companies got you covered with drug assistance programs, that would not be needed with universal health care.  Doesn't it warm your heart, to think that the drug companies cover a couple hundred dollar copay on a drug, they alone market, at a cost far above the cost of the actual drug, including development costs.  I was almost giddy when they passed the Medicare Part D - Prescription Benefit, including that huge profit drug pipeline and our combined drug copays rose to almost $11,000.

Chronic and Manageable is misdirection at best, but millions believe it, so there you go.  The fact is you can never encapsulate the experience of HIV into a sound bite, because that trivializes the disease and the misery it has caused.  Instead, I view the pozzies of today, as having HIV that can most probably be controlled, with medications, but only time will tell how kind those medications are.  I have always disliked labels, because they are simply too confining, but it seems in this age of instant gratification, that "warm fuzzies" always win out over reality.

Especially when that reality, can be so unsettling, for so many reasons.
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Re: Why are so many HIV+ people on state assistance?
« Reply #25 on: January 04, 2011, 05:46:50 AM »
It's like I've always said, Joe; I cannot quite decide if hiv is chronically terminal or terminally chronic. There are millions living with hiv around the world and only a small fraction of these people have affordable access to hiv monitoring, let alone treatment. And the key word there is affordable. For a person diagnosed today, money can buy you manageability - at least in the short term. As you say, the long term is yet to be ascertained.
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Offline mewithu

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Re: Why are so many HIV+ people on state assistance?
« Reply #26 on: January 04, 2011, 08:29:49 AM »
Being employed full-time today is no longer a guarantee of health insurance, and even when health insurance is included as a benefit of full-time employment, it is not a guarantee of 100% benefits when co-pays can be so exceedingly high.  Your use of Atripla's co-pay assistance should have told you this.  There are many HIV-positives who are employed full-time and have insurance but still cannot afford the costs of treating their HIV infection.  There are others who can work full-time but have been unable to find employment.  It is incorrect to assume that all those on ADAP cannot work full-time. 

The question of "manageable" disease is a topic for another thread.  It may be "manageable" in medical terms, but many of us have to work full-time to access and afford the medical treatments and care that may make it "manageable."  Those treatments and care do not come free of charge, whether it be from  (woefully inadequate) insurance, ADAP programs, or pharmaceutical assistance programs.     
It is only managable if you have access to a DR and can afford the meds you have to take to keep HIV/AIDS managable. I totally disagree with the statement chronic manageable disease. It will kill you if you can't afford all the things you need to stay alive with this disease.
1997 is when I found out, being deathly ill. I had to go to the hospital due to extreme headache and fever. I fell coma like,  two months later weighing 95 pounds and in extreme pain and awoke to knowledge of Pancreatis, Cryptococcal Meningitis, Thrush,Severe Diarea,  Wasting, PCP pneumonia. No eating, only through tpn. Very sick, I was lucky I had good insurance with the company I worked for. I was in the hospital for three months that time. 
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I have become resistant to many nukes and non nukes, Now on Reyataz, , Combivir. Working well for me not too many side effects.  I have the wasting syndrome, Fatigue  . Hard to deal with but believe it or not I have been through worse. Three Pulmonary Embolism's in my life. 2012 520 t's <20 V load

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Re: Why are so many HIV+ people on state assistance?
« Reply #27 on: January 04, 2011, 11:48:40 AM »
COST.  My husband and my meds currently cost just shy of $6,000.  per month.  Last year we paid $3542.20 out of pocket for meds that weren't covered by Medicaid, HSI or private insurance.  Insurance companies deemed me uninsurable  decades before HIV. My husband's insurance company continues to raise his premiums as his healthcare gets more costly to a current premium of $1144.  Even with the gov't assistance, you find yourself daily deciding what you are going to do without  so you can get by.

Offline wolfter

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Re: Why are so many HIV+ people on state assistance?
« Reply #28 on: January 04, 2011, 05:59:36 PM »
I've mulled around the idea of why so many hiv+ people on this forum are on assistance.  It's probably that many of the forum members didn't reach out for support until they reached a crisis. 
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Re: Why are so many HIV+ people on state assistance?
« Reply #29 on: January 04, 2011, 06:14:14 PM »
South Park got it correct in their episode about the cure for HIV - liquified money.
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Offline denb45

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Re: Why are so many HIV+ people on state assistance?
« Reply #30 on: January 04, 2011, 07:52:27 PM »
I've mulled around the idea of why so many hiv+ people on this forum are on assistance.  It's probably that many of the forum members didn't reach out for support until they reached a crisis.  

No that's not it, if your income-level is BELOW a certain amount at least according to the Federal-Poverty-Line witch I believe is about $900 a month or 100% of the Federal-Poverty-Line, then you need some type of assistance, without this you just wouldn't be able to live are afford any of your HIV MEDS, as well as Rent, Utilities, and Food (the Basics each month) Here in New Mexico, if you make less than 1,860 a month your considered LOW INCOME...

 (I'm not sure if this amount is correct, but I'm sure MARK will chime-in, if anyone wants to know this info about  the State of New Mexico) so you would get some type of help, (Rent-Sec 8-HUD, ADAP, HOPWA, Food Stamps or State Medicaid) in some states that monthly amount is a lot LOWER, and State funds are VERY LIMITED, and each State is different, with different guide-lines for what is considered Poverty...

The bottom-line here is this, if your making any less than above or below the Federal-Poverty-Level, then you need some type of assistance just about ANYWHERE in the USA, that's the way it is, and it's been that way for the last 20 yrs. are maybe even longer than this.......
« Last Edit: January 04, 2011, 08:13:57 PM by denb45 »
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Offline edfu

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Re: Why are so many HIV+ people on state assistance?
« Reply #31 on: January 04, 2011, 07:59:57 PM »
It's probably that many of the forum members didn't reach out for support until they reached a crisis. 

That's a very broad generalization and not true at all.  There are many members who sought support, even if it was only a consultation with an ASO, quite soon after their diagnosis.  The crisis WAS their diagnosis.   

 
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Re: Why are so many HIV+ people on state assistance?
« Reply #32 on: January 04, 2011, 08:03:41 PM »
I've mulled around the idea of why so many hiv+ people on this forum are on assistance.  It's probably that many of the forum members didn't reach out for support until they reached a crisis. 

Thats ridiculous.  Its only logical that people wait until they need assistance to go on assistance. You don't go on assistance if you dont need it. You can't even get it.
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Offline wolfter

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Re: Why are so many HIV+ people on state assistance?
« Reply #33 on: January 04, 2011, 08:10:04 PM »
That's a very broad generalization and not true at all.  There are many members who sought support, even if it was only a consultation with an ASO, quite soon after their diagnosis.  The crisis WAS their diagnosis.   

 

I was talking about why so many people in these forums might appear to need assistance disportionate to the general public.  I said probably and many, which is not a broad generalization.  And it IS true that many people did not join these forums until they had a crisis other than their diagnosis.
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Offline leatherman

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Re: Why are so many HIV+ people on state assistance?
« Reply #34 on: January 04, 2011, 08:11:28 PM »
don't forget that a fair number of people don't even find out that they need assistance until they present to the hospital, find out that they have AIDS, barely survive some OI, and then get out to find their whole life has fallen apart.  ;)
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Offline edfu

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Re: Why are so many HIV+ people on state assistance?
« Reply #35 on: January 04, 2011, 08:15:58 PM »
I was talking about why so many people in these forums might appear to need assistance disportionate to the general public.  I said probably and many, which is not a broad generalization.  And it IS true that many people did not join these forums until they had a crisis other than their diagnosis.

It's disproportionate to the general public because the general public doesn't have thousands of dollars of antiretrovirals to take each month. 
"No one will ever be free so long as there are pestilences."--Albert Camus, "The Plague"

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Online mecch

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Re: Why are so many HIV+ people on state assistance?
« Reply #36 on: January 04, 2011, 08:37:11 PM »
It doesn't surprise me that poor people might need state assistance if they have a chronic disease. Any chronic expensive medical problem.  Whats the final point of this thread?
And anyway, the experience of HIV is changing year by year, so we'll see what the future holds for how employable HIV+ people are... 
It probably would help this discussion if anyone had actual figures on number of HIV+ people "on the dole".
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Offline denb45

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Re: Why are so many HIV+ people on state assistance?
« Reply #37 on: January 04, 2011, 08:39:35 PM »
It's disproportionate to the general public because the general public doesn't have thousands of dollars of antiretrovirals to take each month. 

Because antivirals COST TO MUCH, even if you have Health Insurance, it's still NOT Affordable to a lot of people, meaning that (in most cases) even people who still work, have a HARD TIME paying for them, so hence some type of assistance State or Federal is needed.........so, to the OP of this thread there's your answer (in-nut-shell) we all simply cannot put it any plainer then THIS.....
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Offline buginme2

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Re: Why are so many HIV+ people on state assistance?
« Reply #38 on: January 04, 2011, 08:44:23 PM »
Well, SINCE you pit it in CAPS. WE must pay attention.

I dont Buy it.
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Offline denb45

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Re: Why are so many HIV+ people on state assistance?
« Reply #39 on: January 04, 2011, 08:51:43 PM »
Well, SINCE you pit it in CAPS. WE must pay attention.

I dont Buy it.

Fine, but if you wanna know why they cost so much, then you'll have to take that up with BIG PHARMA
I doubt you'll even get a str8 or correct answer for this, and I know you won't get one from any of your
State Legislators, they say (The Cost) is for the testing and research of all of these Drugs, so read into that what you will........
« Last Edit: January 04, 2011, 08:56:30 PM by denb45 »
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Re: Why are so many HIV+ people on state assistance?
« Reply #40 on: January 04, 2011, 08:52:42 PM »
Maybe you should get stats on how many HIV+ people work full time in a country with universal health care.
What is it exactly that poses you this cognitive dissonance?  There is a "mixed message" about HIV being overwhelming or being manageable by virtue of the way individuals experience HIV in the place they live, the time they have lived with it, etc.  Life is complicated.  You might enjoy reading up on epidemiology. There was an article in the times today about how POVERTY itself is a proven health hazard.  Its a beautiful piece of research.
http://www.nytimes.com/2011/01/02/opinion/02kristof.html?_r=1
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Offline phildinftlaudy

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Re: Why are so many HIV+ people on state assistance?
« Reply #41 on: January 04, 2011, 08:54:26 PM »
Question: Why are so many HIV+ people on state assistance?

Answer:  Just because
             Next irrelevant question?

http://forums.poz.com/index.php?topic=35964.msg448518#msg448518
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 edfu

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Re: Why are so many HIV+ people on state assistance?
« Reply #42 on: January 04, 2011, 09:00:44 PM »
Well, SINCE you pit it in CAPS. WE must pay attention.
I dont Buy it.

What, exactly, don't you buy?  

Because antivirals COST TO MUCH, even if you have Health Insurance, it's still NOT Affordable to a lot of people, meaning that (in most cases) even people who still work, have a HARD TIME paying for them, so hence some type of assistance State or Federal is needed.........so, to the OP of this thread there's your answer (in-nut-shell) we all simply cannot put it any plainer then THIS.....

You have health insurance, bug, but you still get pharma copay assistance.  Why?  I asked you this many posts back, but you cleverly didn't answer the question, and some posters didn't understand the purpose of my question.   You obviously cannot afford the copays even with insurance.  Or are you just gaming the system?  How can you still not understand why so many require assistance?  
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Re: Why are so many HIV+ people on state assistance?
« Reply #43 on: January 04, 2011, 09:04:28 PM »
Well, that said, I would take copay assistance if I could get it - maybe then I could put more money into a retirement account.  I suppose that might seem like gaming the system but the drugs are really expensive and if the pharma company is willing to shave a little off their profit with this small gesture, why say no?
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline edfu

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Re: Why are so many HIV+ people on state assistance?
« Reply #44 on: January 04, 2011, 09:17:00 PM »
Well, that said, I would take copay assistance if I could get it - maybe then I could put more money into a retirement account.  I suppose that might seem like gaming the system but the drugs are really expensive and if the pharma company is willing to shave a little off their profit with this small gesture, why say no?

Quite so; I agree completely.  It should be obvious that I would not be adverse to cutting a few dollars off the billiions Big Pharma makes.  However, you don't suffer from the "cognitive dissonance" of the OP, and I'm trying to explain to him why so many need assistance, more than he currently does.     
"No one will ever be free so long as there are pestilences."--Albert Camus, "The Plague"

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Offline Jeff G

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Re: Why are so many HIV+ people on state assistance?
« Reply #45 on: January 04, 2011, 09:19:59 PM »
Well, SINCE you pit it in CAPS. WE must pay attention.

I dont Buy it.

Why do you think there are so many HIV + people on state assistance ? What is your opinion Bug ?

I'm asking this in all seriousness , I really would like to know what you think .

Offline Jeff G

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Re: Why are so many HIV+ people on state assistance?
« Reply #46 on: January 04, 2011, 09:21:09 PM »
posted by mistake  :-[

Offline buginme2

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Re: Why are so many HIV+ people on state assistance?
« Reply #47 on: January 04, 2011, 09:25:12 PM »
I think it is because HIV is a bigger deal than what is being let on and discussed including, on here.

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Re: Why are so many HIV+ people on state assistance?
« Reply #48 on: January 04, 2011, 09:29:30 PM »
I think it is because HIV is a bigger deal than what is being let on and discussed including, on here.

You need to stick around here in the forums longer and read more. There is an ongoing debate about this very topic. But we are the "converted". 

Anyway, if your perspective is the US - you have to take into account the fragile safety net, relatively low basic wage allowed, lack of health insurance, etc.

You do know that its possible to work at WalMart, for example, and be denied full time job, by a few hours, yet be on call for full time work, and make so little that the local state has to support your kids with public assistance. 
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Offline Jeff G

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Re: Why are so many HIV+ people on state assistance?
« Reply #49 on: January 04, 2011, 09:35:24 PM »
I think it is because HIV is a bigger deal than what is being let on and discussed including, on here.



Now that's better , your opening up and we are getting somewhere ... please expand on your thoughts about it .

I'm of the hopeful school where I think HIV is a big deal but once you have it there are things one can do to mitigate the damage through treatment and lifestyle choices can also help to some degree .

 


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