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Author Topic: ADAP an entitlement? Should something be asked back for using it?  (Read 22040 times)

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Offline poet

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  • Poet living and working in Central Maine
This is coming sideways from an hour discussion (http://www.radioopensource.org/) about public service, military or other, compulsory via a draft or voluntary, a year of service for a year of college.  The Ryan White Act came about, in part, from the argument that so many young lives were being lost, that the cost to our country was so great that we, as Americans, had to do something: to fund drugs and other hiv services.  Is this drawing a circle halfway?  If someone agrees to accepting drug assistance, should that person be asked, be required to give back in some way, through community service, hiv/aids connected or not?  Does this bring the circle back as long as someone is only asked if medically capable of offering service?  If you yourself make use of Ryan White funds, do you feel compelled to do something, to give something back?  Are you waiting for the right call to service?  Do you feel that your current job, whether it's making great money on Wall Street which helps the economy or teaching in a school in fact would justify your using these funds, if you are, or, if you are not, if you are paying your own way through company insurance, how do you see this?  Win
« Last Edit: January 31, 2007, 06:20:48 AM by poet »
Winthrop Smith has published three collections of poetry: Ghetto: From The First Five; The Weigh-In: Collected Poems; Skin Check: New York Poems.  The last was published in December 2006.  He has a work-in-progress underway titled Starting Positions.

Offline aupointillimite

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Re: ADAP an entitlement? Should something be asked back for using it?
« Reply #1 on: January 30, 2007, 08:55:50 PM »
I don't mean to sound flippant at all... but I would think that paying taxes like everyone else would be sufficient.

I think it is highly unethical to offer a program and then demand "volunteer time" to get its benefits.  It's coercion of the needy... and I don't think it's right.

Your tastebuds can't repel flavor of this magnitude!

Offline fondeveau

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Re: ADAP an entitlement? Should something be asked back for using it?
« Reply #2 on: January 30, 2007, 09:01:47 PM »
A thank you would be more than sufficient.

Luke 17

    11Now on his way to Jerusalem, Jesus traveled along the border between Samaria and Galilee. 12As he was going into a village, ten men who had leprosy met him. They stood at a distance 13and called out in a loud voice, "Jesus, Master, have pity on us!"
    14When he saw them, he said, "Go, show yourselves to the priests." And as they went, they were cleansed.

    15One of them, when he saw he was healed, came back, praising God in a loud voice. 16He threw himself at Jesus' feet and thanked himóand he was a Samaritan.

    17Jesus asked, "Were not all ten cleansed? Where are the other nine? 18Was no one found to return and give praise to God except this foreigner?" 19Then he said to him, "Rise and go; your faith has made you well."

Offline AustinWesley

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Re: ADAP an entitlement? Should something be asked back for using it?
« Reply #3 on: January 30, 2007, 09:08:11 PM »
This is coming sideways from an hour discussion (opensource.org) about public service, military or other, compulsory via a draft or voluntary, a year of service for a year of college.  The Ryan White Act came about, in part, from the argument that so many young lives were being lost, that the cost to our country was so great that we, as Americans, had to do something: to fund drugs and other hiv services.  Is this drawing a circle halfway?  If someone agrees to accepting drug assistance, should that person be asked, be required to give back in some way, through community service, hiv/aids connected or not?  Does this bring the circle back as long as someone is only asked if medically capable of offering service?  If you yourself make use of Ryan White funds, do you feel compelled to do something, to give something back?  Are you waiting for the right call to service?  Do you feel that your current job, whether it's making great money on Wall Street which helps the economy or teaching in a school in fact would justify your using these funds, if you are, or, if you are not, if you are paying your own way through company insurance, how do you see this?  Win

Hey Win,

You bring an interesting topic to the table.   My flat out answer is NO.  After all the money and taxes I've paid as well as my family I think I am entitled to some assistance since our government seems incapable of contracting the HIV meds at a reasonable price and then gives away millions to people in 3rd world countries.   At present I do pay for health insurance, but I would not feel at all guilty accepting some assistance.  

Furthermore, as a gay man in this country I'm not even afforded equal rights as others.   As a single man I am contributing to an unfair and disproportionate portion of taxes to subsidize the education and health of others who choose to have children they can't afford.

Personally, I've done my bit for the cause.   I don't have to justify what that has been to anyone.

I'll be really interested to hear some other lines of thought on this topic! ; )

Wesley
Diag. 3/06  Infected aprx. 2 mo. Prior
Date        CD4   %      VL
4/6/06     627    32    36,500     NO MEDS YET!
6/7/06     409    27    36,100
8/23/06   408    25     22,300
1/2/07     354    23     28,700
2/9/07     139    30     23,000  Hep A Vaccine same day???
2/21/07   274    26     18,500 
3/3/07    RX of Truvada/Sustiva Started.
4/5/07    321     27      Undectable 1st mo.  
5/16/07  383     28    Undectable 2nd mo.
8/10/07  422     32   UD <48 on new scale!

Offline koi1

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Re: ADAP an entitlement? Should something be asked back for using it?
« Reply #4 on: January 30, 2007, 09:08:40 PM »
This would be such a non issue if we had universal healthcare. But we don't. And the reality is that ADAP is one of those programs that has to be funded every year, and not all states get the same money for it. No, I don't think requiring people to volunteer is the answer. Then it wouldn't exactly be volunteer work. I am public school teacher but I also volunteer, does that make me a better person? No. In fact it is just something that has made me feel better since being diagnosed.

I feel lucky that I don't have to rely on programs like ADAP, since the quality of the healthcare provided can vary greatly from state to state and even from county to county. But I am with a lot of others on this website that we cannot become complacent and think that ADAP will always be there or fully funded.

 We all need to do our part. Wether it is adopting a protecting others and ourselves attitude, to avoid new infections or superinfections which are both costly in terms of human and financial terms, or some sort of activism.

But that is just my view.

rob
diagnosed on 11/20/06 viral load 23,000  cd4 97    8%
01/04/07 six weeks after diagnosis vl 53,000 cd4 cd4 70    6%
Began sustiva truvada 01/04/07
newest labs  drawn on 01/15/07  vl 1,100    cd4 119    7%
Drawn 02/10/07
cd4=160 viral load= 131 percentage= 8%
New labs 3/10/07 (two months on sustiva truvada
cd4 count 292  percentage 14 viral load undetectable

Offline aupointillimite

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Re: ADAP an entitlement? Should something be asked back for using it?
« Reply #5 on: January 30, 2007, 09:19:47 PM »
Hey Win,

You bring an interesting topic to the table.   My flat out answer is NO.  After all the money and taxes I've paid as well as my family I think I am entitled to some assistance since our government seems incapable of contracting the HIV meds at a reasonable price and then gives away millions to people in 3rd world countries.   At present I do pay for health insurance, but I would not feel at all guilty accepting some assistance.   

Furthermore, as a gay man in this country I'm not even afforded equal rights as others.   As a single man I am contributing to an unfair and disproportionate portion of taxes to subsidize the education and health of others who choose to have children they can't afford.

Personally, I've done my bit for the cause.   I don't have to justify what that has been to anyone.

I'll be really interested to hear some other lines of thought on this topic! ; )

Wesley

Exactly.

We could go on and on and on about how tax money is appropriated... I could say it goes to pay for highways I don't use since I don't drive, or someone in a low crime area could complain that where I live is seeing an increase in federal funding because of the crime problem in this city... but I think most people in democracies generally shy away (and wisely I think) for complaining too loudly about what's being done with money domestically.

Because I can guarantee you that for every person who needs ADAP funding, there's someone who thinks that the program that pays to keep disease-ridden degenerates alive should be pulled.

So, I don't think that line of thinking gets anyone anywhere.  There are 300 million of us in this country, and we all need something from the government... and some of us more than others.

I suppose I have a rather strong liberatarian streak which balks at requiring anyone to do anything... taxes, yes those make sense.  The draft?  Not so much.  Universal service programs?  No. 

To be free is to have the freedom to say "fuck off to the lot of you" and do it all the while getting ADAP money if you qualify.  And I don't think I'd have it any other way. 
Your tastebuds can't repel flavor of this magnitude!

Offline koi1

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Re: ADAP an entitlement? Should something be asked back for using it?
« Reply #6 on: January 30, 2007, 09:21:07 PM »
As far as costing my HMO 1,200 dollars a month, I don't feel guilty. Whole families of my colleagues are insured at 650.00 a per person.  In a family of 5, that is a shitload of money. I have been a teacher for 10 years now and this the first time I have ever availed myself of the insurance benefits. So when the pharmascist said point blank "Do you know that your are saving 1,2OO dollars right now?" when I picked up my very first meds, I said yeah that's why they call it insurance. Thanks for anouncing it to everyone else. " I don't know what he meant by it. Was it to say that I am a burden? Maybe.

I don't feel like it at all. I pay over a third of my salary in taxes and other crap. That's 20 some odd thousand dollars a year that I never see. So would the same issue be raised if I had cancer? Hell no, he probably would not have made that comment. My brother in law took a medication for nausea that was 600 bucks retail. I doubt anybody ever made him feel bad for using his insurance to cover it.

rob
diagnosed on 11/20/06 viral load 23,000  cd4 97    8%
01/04/07 six weeks after diagnosis vl 53,000 cd4 cd4 70    6%
Began sustiva truvada 01/04/07
newest labs  drawn on 01/15/07  vl 1,100    cd4 119    7%
Drawn 02/10/07
cd4=160 viral load= 131 percentage= 8%
New labs 3/10/07 (two months on sustiva truvada
cd4 count 292  percentage 14 viral load undetectable

Offline Lis

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Re: ADAP an entitlement? Should something be asked back for using it?
« Reply #7 on: January 30, 2007, 10:19:51 PM »
I dont qualify for ADAP... i wish i did... I would do anything!!!
poz 1986....

Offline tsw923

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Re: ADAP an entitlement? Should something be asked back for using it?
« Reply #8 on: January 30, 2007, 10:32:04 PM »
I think I have to agree, I don't think I should be FORCED to give back for this.  I am a single woman with no kids.  I pay a LOT of taxes and I pay a LOT for health insurance.  And this is really the first time I've used the system.  The $1200 a month price for meds sucks, but if the insurance companies and the government are upset about it, then they should really do something about the pharmaceutical companies.  And trust me, this is not something I would FAKE to get an entitlement....

Now, in general I have no problem with volunteering and doing for those less fortunate than me in general.  I have done so before I knew my status and I've continued to do so.

Ty
Help find a cure for leukemia, lymphoma, and other blood-related cancers by sponsoring me as I walk a 1/2 marathon as a part of the Maryland chapter of Team in Training.  To find out more and to donate, please click on the following site:  http://www.active.com/donate/tntmd/tswtntmd

Offline MitchMiller

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Re: ADAP an entitlement? Should something be asked back for using it?
« Reply #9 on: January 30, 2007, 10:39:52 PM »
I don't use ADAP... in fact I pay for my own meds.  However, I think if you really need assistance, you shouldn't feel guilty about accepting it.  Actually I probably would, but that is because of the influence of my family in my upbringing.  But that is part of what our society is supposed to be about... providing some sort of safety net for those that need it.
I wonder if you would even think about asking this question if this were a forum for people that had been disabled in a car accident.   It sounds like there is an overhang about the "guilt" of catching HIV.... which is understandable because I feel the same thing.  If you look at things in perspective, people make mistakes all the time.  HIV just happened to be the consequence of the mistake many of us made... so it is no different than the driver that took a turn just a bit too fast on a wet road and ended up disabled from a car accident... making him/her dependent on public assistance.

Offline racingmind

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Re: ADAP an entitlement? Should something be asked back for using it?
« Reply #10 on: January 30, 2007, 10:59:28 PM »
I'm with Wesley on this one....
Tested Negative: 5/06
Tested Positive: 9/06 
9/06: CD4: 442 (28%) VL: +100,000
10/06: CD4: 323 (25%) VL: 243,440
11/06: CD4: 405 (28%) VL: 124,324
12/06: CD4: 450 (29%) VL: 114,600
1/07: CD4: 440 (27%) VL: 75,286
3/07: CD4: 459 (30%) VL: 44,860
5/07: CD4: 353 (24%) VL: 50,852
7/07: CD4: 437 (29%) VL: 39,475
9/07: CD4: 237 (32%) VL: 372,774
10/07: CD4: 324 (27%) VL: 115,454 
Started Atripla: 10/07
11/07: CD4: 524 (?%) VL: Undetectable!
2/08: CD4: 653 (35%) VL: undetectable
5/08: CD4: 822 (40%) VL: undetectable
8/08: CD4: 626 (35%) VL: undetectable
12/08: CD4: 619 (36%) VL: undetectable
3/09: CD4: 802 (38%) VL: undetectable
7/09: CD4: 1027 (43%) VL: not tested
10/09: CD4: 1045 (43%) VL: undetectable

Offline Tucsonwoody

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Re: ADAP an entitlement? Should something be asked back for using it?
« Reply #11 on: January 30, 2007, 11:24:30 PM »
Besides ADAP - there are many programs that people use that are not related to HIV.  Some do require that people go to work for assistance I think.   How about people who were born with HIV and others who had no responsibility for having HIV? Or should we be spending money on our citizens (whatever country you live in) first and then try to help others next?

I've thought of this before and still haven't resolved these things in my own mind...I will cogitate on this more.  Thanks to everyone who posted their opinions..you make me exercise my flabby brain.
And I wished for guidance, and I wished for peace
I could see the lightning; somewhere in the east
And I wished for affection, and I wished for calm
As I lay there - Nervous in the light of dawn

Offline poet

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Re: ADAP an entitlement? Should something be asked back for using it?
« Reply #12 on: January 31, 2007, 06:39:09 AM »
'Do Americans Need To Serve?'  The army is at war.  Americans are at Wal-Mart....  I fixed the link to radio open source from which this discussion was pulled.  Before I read the posts to date, the arguments, coming from someone in the military, a father whose son is serving, a Harvard graduate who chose to enlist in the Marines with others posited the questions: should there be a draft; should there be volunteer or compulsory service, military or civil (i.e. Americorps)?  The father admitted that he was orignally shocked by his third son's decision, looking at service as a lesser choice (as opposed to becoming a doctor, a lawyer, something socially upscale like the father) but changed his mind based on the reception he got, as the father, now linked to other parents with sons and daughters in the military.  The Harvard grad., Seth, felt that his peers, who argued against his decision, who now work on Wall Street, seem to wish that they, too, had had that sort of experience behind them as well.  One of the speakers noted that Americans have not paid for this war, that politicians seem afraid of asking Americans to pay, via taxes, via service, via anything, for this war whereas Americans, without politicians, have shown that, given a disaster in the world, Katrina here, they do give and give a lot. 

Ok, that was the starting point for my post.  Then we have entitlement programs which do, in fact, require work/service.  MassHealth which I have requires so many hours of work per week.  Welfare for work, the revision of the program, admittedly from the concept that there is a need to nudge people back to work and off the free cash flow.  But where are the programs, other than disability, for cancer patients, for patients with other diseases who, until they can't (legally proven) do anything, are left out?  We, however, have the Ryan White Act funding/ADAP. 

Still without reading the posts, what if, as part of putting a face on hiv/aids, with a form of activism within this community, those of us who have access to such hiv/aids funding were to, on a voluntary basis, support our a.s.o.'s through work, by helping with the food pantry, delivering meals, answering the phone?  Again, this would not apply to people who do not access such funding, but their take on this is also important.  Do those of you who work, pay taxes, have health insurance you also pay for wonder about those who don't work, perhaps don't pay taxes, have ADAP, could do something, but don't?  Is this the wrong image, another wrong image of people with hiv/aids?  Does this shoot in the foot the yearly effort to keep the funding (as happened with other entitlement programs)?  Does this leave the a.s.o. short staffed for no reason?  Going back to the original draft/volunteer service question, create a nation within the positive community of those who serve and those who don't?  Win
Winthrop Smith has published three collections of poetry: Ghetto: From The First Five; The Weigh-In: Collected Poems; Skin Check: New York Poems.  The last was published in December 2006.  He has a work-in-progress underway titled Starting Positions.

Offline Cliff

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Re: ADAP an entitlement? Should something be asked back for using it?
« Reply #13 on: January 31, 2007, 06:54:06 AM »
Quote
If someone agrees to accepting drug assistance, should that person be asked, be required to give back in some way, through community service, hiv/aids connected or not?
No!  We don't ask parents to volunteer in schools, while their children are soaking up tax money in the education system.  We don't ask folks to do highway clean-up as a way of giving thanks for highway spending. 

No, it's a service that the government should provide regardless of whether or not the people say thanks or give back buy volunteering.

Offline mjmel

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Re: ADAP an entitlement? Should something be asked back for using it?
« Reply #14 on: January 31, 2007, 06:58:54 AM »
Excellent response, AustinWesley!

Offline poet

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Re: ADAP an entitlement? Should something be asked back for using it?
« Reply #15 on: January 31, 2007, 07:05:44 AM »
No, I don't think requiring people to volunteer is the answer. Then it wouldn't exactly be volunteer work. I am public school teacher but I also volunteer, does that make me a better person? No. In fact it is just something that has made me feel better since being diagnosed.

 We all need to do our part. Wether it is adopting a protecting others and ourselves attitude, to avoid new infections or superinfections which are both costly in terms of human and financial terms, or some sort of activism.

But that is just my view.

rob
 

Without meaning to pick on Rob and noting that I have copied only part of his post, IF 'we all need to do our part' how is volunteering, not compulsory, but volunteering not part of activism within the hiv/aids community?  How is it different than not f------g without a condom, protecting others and so, saving dollars?  Rob, you, like my parents, are a teacher.  You would be the first to know that with your education, with your hours, you are in some ways underpaid, no?, compared to the guy on Wall Street, his first year with the investment bank.  But you, presumably, like my parents, got a reward from your choice of work?  If the volunteering which you do do makes you 'feel better' which you can, perhaps, define more for us, would this be asking too much of us, of those of us who get something to contribute something back of our choice?  

Yes, from another post, we pay taxes, but voting alone can try to direct those tax dollars.  If we volunteer our time to an a.s.o. which is underfunded by tax dollars, are we not strengthening it?  Are we not putting our non-tax, non-dollars time and investing it to make a point, a point about the importance we find there?  Would we be doing this out of guilt?  How so?  Win
Winthrop Smith has published three collections of poetry: Ghetto: From The First Five; The Weigh-In: Collected Poems; Skin Check: New York Poems.  The last was published in December 2006.  He has a work-in-progress underway titled Starting Positions.

Offline Lisa

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Re: ADAP an entitlement? Should something be asked back for using it?
« Reply #16 on: January 31, 2007, 07:06:09 AM »
I find this to be a circular discussion, as it is the people who depend on ADAP that are least able to do anything to "pay back" the system.
No Fear  No Shame  No Stigma
Happiness is not getting what you want, but wanting what you have.

Offline poet

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Re: ADAP an entitlement? Should something be asked back for using it?
« Reply #17 on: January 31, 2007, 07:10:53 AM »
No!  We don't ask parents to volunteer in schools, while their children are soaking up tax money in the education system.  We don't ask folks to do highway clean-up as a way of giving thanks for highway spending. 

No, it's a service that the government should provide regardless of whether or not the people say thanks or give back buy volunteering.


But Cliff, much as we don't 'ask' parents to volunteer in schools, we need parents to do so (again as the son of parents who volunteered).  It supports the schools.  It brings attention to the schools.  Ditto highway clean-ups.  We don't ask people to do it, but we need them to do it.  And make a point of the signs which say 'this stretch of the highway has been adopted by ____ ____' which points out the need and recognises those who have volunteered.  Or hospitals which rely on volunteers.  So if, given the opportunity to focus our time, the opportunity to 'give back,' would we not want it to go back to the hiv/aids community somehow or, at least, to be recognised as coming from that community, our community? Win
Winthrop Smith has published three collections of poetry: Ghetto: From The First Five; The Weigh-In: Collected Poems; Skin Check: New York Poems.  The last was published in December 2006.  He has a work-in-progress underway titled Starting Positions.

Offline bocker3

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Re: ADAP an entitlement? Should something be asked back for using it?
« Reply #18 on: January 31, 2007, 07:44:52 AM »
Do I think anyone should be compelled to volunteer??  Absolutely not!  Do I think people should be willing to volunteer, if able -- absolutely.
The problem with the entitlement attitude is that it is NOT supported by government policy.  These programs exist because it is politically expedient.  In the US, the government is not obligated to provide medical care -- whether it SHOULD is another question entirely (I think the answer is yes -- but we have to be careful for what we wish for), the Constitution does not guarantee that.  When people say that they are "owed" something from the government, they are really saying they are "owed" something from the US population.  Every entitlement program is a form of welfare.  Now -- let me be clear -- I am bring up these points for discussion.  I believe that SOCIETY has an obligation to help out people in need, if that is done through the government, fine!  So I am not against ADAP, I don't think anyone who gets meds through this program should be forced to do anything -- volunteer, feel guilty, etc.  However, I'm reading responses that seem so vehemently opposed against the idea of volunteering, that I'm unclear how to read them.  Volunteering is not compulsory.
I understand the whole idea of "I've paid my taxes and I am owed this.", but that is a dangerous argument.  Even people with insurance and resources pay taxes -- shouldn't they be entitled to these programs too?  I think the answer is No -- because it has to be needs based.  If it's needs based, then no one is "entitled" they are simply "qualified".
When I was first diagnosed, I received counseling from a Free Clinic.  I felt very guilty about taking free care when I had insurance and resources to pay.  The therapist told me that he was there to support the newly diagnosed and that I was perfectly right for being there.  Although, he could not accept payment for his services, the clinic could accept donations -- so that is what I did.

Anyway -- ADAP exists and should be used by those who need it -- without guilt, without stigma and without compulsory service.  However, if someone is receiving it and can volunteer -- what's the harm??

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

Offline fondeveau

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Re: ADAP an entitlement? Should something be asked back for using it?
« Reply #19 on: January 31, 2007, 07:52:32 AM »
I find this to be a circular discussion, as it is the people who depend on ADAP that are least able to do anything to "pay back" the system.

 

To the Least of These - Matthew 25:33-40   

The Son of Man will put the sheep (good people) on his right and the goats (bad people) on his left. "Then the king will say to those good people on his right, 'Come. My Father has given you great blessings. Come and get the kingdom God promised you. That kingdom has been prepared for you since the world was made. You can have this kingdom, because I was hungry and you gave me food to eat. I was thirsty, and you gave me something to drink. I was alone and away from home, and you invited me into your home. I was without clothes, and you gave me something to wear. I was sick, and you cared for me. I was in prison, and you came to visit me.' "Then the good people will answer, 'Lord, when did we see you hungry and give you food? When did we see you thirsty and give you something to drink? When did we see you alone and away from home and invite you into our home? When did we see you without clothes and give you something to wear? When did we see you sick or in prison and care for you?' "Then the king will answer, 'I tell you the truth. Anything you did for any of my people here, you also did for me.' "Then the king will say to those bad people on his left, 'Go away from me. God has already decided that you will be punished. Go into the fire that burns forever. That fire was prepared for the devil and his angels. You must go away, because I was hungry, and you gave me nothing to eat. I was thirsty, and you gave me nothing to drink. I was alone and away from home, and you did not invite me into your home. I was without clothes, and you gave me nothing to wear. I was sick and in prison, and you did not care for me.' "Then those people will answer, 'Lord, when did we see you hungry or thirsty? When did we see you alone and away from home? Or when did we see you without clothes or sick or in prison? When did we see these things and not help you?' "Then the king will answer, 'I tell you the truth. Anything you refused to do for any of my people here, you refused to do for me.'"Then those bad people will go away. They will have punishment forever. But the good people will go and have life forever."

ó Matthew 25:33-46

We could add, I was HIV+ and you gave me Atripla....It does amaze how conservative Republicans who often claim the moral high ground based on Christian faith are often in the vanguard of those voices who either wish to cut or eliminate funding for ADAP.  Of course, to really sell the program they have to choose an innocent such as Ryan White for the poster child, rather than say, Gaetan Dugas?  But, back to the thread..."compulsory" volunteerism is called slavery. 
« Last Edit: January 31, 2007, 07:55:53 AM by fondeveau »

Offline Cliff

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Re: ADAP an entitlement? Should something be asked back for using it?
« Reply #20 on: January 31, 2007, 08:33:32 AM »
Yes, from another post, we pay taxes, but voting alone can try to direct those tax dollars.  If we volunteer our time to an a.s.o. which is underfunded by tax dollars, are we not strengthening it?  Are we not putting our non-tax, non-dollars time and investing it to make a point, a point about the importance we find there?  Would we be doing this out of guilt?  How so?  Win
I don't see how receiving other types of services from the government is any different.  Everything the government does is underfunded.  HIV care is not unique to that problem.  We obviously could throw more money at education, mass transportation systems, poverty reduction, etc...  And having parents and community leaders (business or otherwise) volunteer their time could strengthen those areas.

Yes, it's a good thing if someone volunteers (that goes without saying and that's just not specific to HIV Inc.).  BUT there should be NO expectation or obligation, simply because someone receives government assistance.  That's not fair to them.  Just because I have not receive governmental assistance, doesn't mean I'm am less responsible for giving back than someone who does.

Offline koi1

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Re: ADAP an entitlement? Should something be asked back for using it?
« Reply #21 on: January 31, 2007, 08:55:09 AM »
I think the point was compulsory volunteerism for using certain services. So I am still going to say that compulsory volunteering by definition is not volunteering. It it like likening it to the forced to do community hours mentality.
The people that got HIV are not criminals that need to do time in a soup kitchen.

Again forcing someone to volunteer defeats the purpose. If one volunteers it is because one feels it. And yes you could say that more people should be feeling it, but there are other ways to accomplishing this than by making it compulsory. I got into the volunteering with an ad on a website for an aso. My other volunteer work is giving time to afterschool programs at my school. In other words my volunteerism has been meaningful to me.

Should they force cancer patients whoget services at county hospitals and are able to to do volunteer to do so? After all they are using tax dollars. I think the reasoning behind forcing people who use ADAP to volunteer is just because of the stigma still attached to this disease. That is you got it. It is your fault. You deserve it. So why should I pay for your treatment? This is still tied to a moralistic, discriminatory, homophobic, right wing mentality.

Should people want to volunteer? In an ideal worl dyes. But we have never lived in an ideal world. Again getting people to volunteer is either innate or should be done through campaigns to get people to act.
And it is important to in at least securing adequate funding for those who depend on ADAP and other ASO's.

rob
« Last Edit: January 31, 2007, 09:05:38 AM by koi1 »
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Offline skeebo1969

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Re: ADAP an entitlement? Should something be asked back for using it?
« Reply #22 on: January 31, 2007, 09:07:47 AM »
But Cliff, much as we don't 'ask' parents to volunteer in schools, we need parents to do so (again as the son of parents who volunteered).  It supports the schools.  It brings attention to the schools.   

  Win,

     I first want to point out that your generation is different that Cliff's and my generation.  It was my generation and a majority of this one that  had/have households that are comprised of parents who both worked to support their families.  That is of course if both parents were present as I am assuming both yours were.  Speaking of those fortunate to have both parents involved they were generally in 9-5 jobs which left very little time for family, let alone volunteering at their child's school.  Sorry Cliff, don't mean to assume both your parents worked , but for the most part this is how our generation was raised.  Economics, Win, necessitated it in mine.

I find this to be a circular discussion, as it is the people who depend on ADAP that are least able to do anything to "pay back" the system.

  Win, if you read some of Lisa's blogs I think you will get a better understanding of what she is saying.  I think this might speak for a majority of those on ADAP by the way.

Or hospitals which rely on volunteers.   

  Win, have you seen the age of most of those sexy little candy stripers as of late.  A majority of them are retirees.   Retirees have pretty much always comprised a large part of the volunteering effort.  Why?  Because they have the time.

  So if, given the opportunity to focus our time, the opportunity to 'give back,' would we not want it to go back to the hiv/aids community somehow or, at least, to be recognised as coming from that community, our community? Win

   I think many of us do!  We just don't plaster our efforts on the boards.   Read Moffie's blogs and this may give you an idea of how some here put forth the effort when they have the "opportunity" to "give back".

   Also, Win, have you seen the latest cell phone commercials?  Where they say a portion of proceeds go to Africa to help those with AIDS?  You are a much better writer than I.  Why not write to them telling them of the people here on waiting lists for ADAP.  People like the mother and son Dachsund/Hal referred to in two other threads.   I think this will be time better spent than asking us or writing in your local paper.  Just my two cents.

  Regards,

  Thomas
I despise the song Love is in the Air, you should too.

Offline marc11864

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Re: ADAP an entitlement? Should something be asked back for using it?
« Reply #23 on: January 31, 2007, 09:15:24 AM »
Very well said , Rob!  :)

I'd say more, but my other meds (Read coffee) haven't kicked in yet.  ;)
Let us cavort like the Greeks of old! You know the ones I mean.

Offline poet

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Re: ADAP an entitlement? Should something be asked back for using it?
« Reply #24 on: January 31, 2007, 10:19:13 AM »
Ok, we hope to hear more from Marc. :) 

To Thomas, as I am sure you know, when your father is a teacher in the public schools as mine was, your mother was also working, in my case sometimes nursery school, sometimes as a teacher's assistant, sometimes tutoring because, as you point out, you can't make it (in the 1950's-1970's) on one pay check as a teacher. 

I have p.m.'s Lisa to get a sense of where her argument has been because I am unclear why 'the people on ADAP are the least able to do anything to "pay back" the system.  Let me be clear that I am not personally arguing for or against 'paying back.'  I am wondering outloud here whether volunteering for an a.s.o. or other community need when you physically can and when you are receiving some assistance via ADAP or other program isn't a way of strengthening those support organisations, demonstrating a point to those who might need to see one, that if you (Americans) help those of us with hiv/aids in one way, we will be able to do something in return for the benefit of others.

Time, yes, a good point.  Time is a reason for why certain clients from our a.s.o. can show up for board meetings which occur during the day.  They either aren't working or are on seasonal hiatus here on the Cape.  So they offer help during the off-season. 

Finally, my point in this thread is not to pull out what people may or may not be doing, but to deal with the much more abstract question: should (knocking out compulsory) volunteering be encouraged (think activism)? 

Which goes back to Rob: 'Should people want to volunteer?'  Yes, my a.s.o. lists opportunities, but that's as far as it goes.  Do we need more focus on what 'you' get back, how important it is to the health of an a.s.o. to have volunteers.  How it could help those who post here that they feel all alone, are depressed, are disconnected from others?  Try it.  You might just like it. 

And back to Mike: 'What is the harm?'  Or does this rub some the wrong way by seeming that someone should be doing something in return?  Win



Winthrop Smith has published three collections of poetry: Ghetto: From The First Five; The Weigh-In: Collected Poems; Skin Check: New York Poems.  The last was published in December 2006.  He has a work-in-progress underway titled Starting Positions.

Offline Lisa

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Re: ADAP an entitlement? Should something be asked back for using it?
« Reply #25 on: January 31, 2007, 10:32:56 AM »
I agree Win, we have allowed ourselves to become complacent. The current generation has come up in a more instant gratification kind of way, and unfortunately it is of our own doing. ....My own doing. I did instill a strong sense of work ethic into my kids, hell, I raised three on my own, on a nurses salary.(and a minimal one at that, this being the south, and the wages are notoriously crappy) But everything is hurry, hurry, hurry, gimmee, gimmee, gimmee.
My own life hs been a train wreck, ask anybody here. But I am finally in a mindset that it has come time to help blaze a way for those who will follow me/us.
I'll be spending the next year and maybe a half on a project that is still making me want to make water in my panties. (See the Activism Forum)
No Fear  No Shame  No Stigma
Happiness is not getting what you want, but wanting what you have.

Offline skeebo1969

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Re: ADAP an entitlement? Should something be asked back for using it?
« Reply #26 on: January 31, 2007, 10:36:44 AM »
 Win,

     Your title suggests a debateable topic indeed.  I won't speak for those who are on disability and do not have the energy to volunteer.  Also remember that not all those on ADAP are getting their meds absolutely free.  Some do work and while the taxes are drawn from their paychecks they additionally have to pay an amount according to ADAP guidelines.

      I just felt in post #17 you were bringing up some points that I needed to address.  Like I said earlier, I do think many here give back.   I also have to agree with those here that ask,"Why should I be asked to?".

     By the way Win, I for one like the topic.  I think it is one that raises the awareness in all of us.  

     (((hugs)))

    Thomas
I despise the song Love is in the Air, you should too.

Offline bear60

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Re: ADAP an entitlement? Should something be asked back for using it?
« Reply #27 on: January 31, 2007, 10:46:59 AM »
Win
Are you old enough to remember the military draft.  I grew up knowing that at age 18 I had to register with the draft board. If I went to college I would get a deferment.
Much to my suprise, when I was in my 5th year at college ( long story...I tranferred schools) I was drafted.  That was 1966.  And let me tell you it was not a good time to be drafted.  I appealed the draft board decision and my father bless his heart went to bat for me and testified that he "wanted his son to finish college."  They allowed me to finish college.  I immediately applied to the Peace Corps and was accepted and sent to Peru after I graduated.  When I returned from the 2 years in the Peace Corps I got a job teaching school. So that I would get another deferment from the draft board. Finally I just was too old to qualify for the draft.

I am not telling my life story here.  I am illustrating that when the government REQUIRES its citizens to do something,  try as they will, it never is equal in the carrying out of the law.
 I was able to get deferrments whereas many thousands were NOT able to and were killed in that damn war. 
Dont get me started on survivor guilt...first it was Vietnam and now its HIV.
Modified to add:  That draft board is responsible for changing my life for the worse and for killing thousands of people.  The members of the draft board  were good citizens.  Pillars of the community. They were efficiently doing what the government asked them to do.  But at what cost to the kids it ruined.  I think government interference in this or any other area is not necessary.
I can just see Kurt, trying to pick up trash along the highway on his crutches because it was his day to do so.



« Last Edit: January 31, 2007, 02:29:02 PM by bear60 »
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Online Joe K

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Re: ADAP an entitlement? Should something be asked back for using it?
« Reply #28 on: January 31, 2007, 11:14:19 AM »
For the majority of people who use ADAP their poor health all but prevents most of them, from volunteering for much of anything.  Add to that that many on these programs are living in poverty and have few if any resources (like a car) to be able to offer much assistance, even those who really want to help.  I find the whole idea of forced service, in return for medical treatment to be beyond the absurd.  Just think of the turmoil that would ensue if ADAP recipients were required to perform forced service.  Who would decide if you were well enough to work?  What about when you get really "sick"?  The whole idea is foolish and to me, anyone who thinks that such service should be mandatory, needs to become educated on what being poz means.

This still leaves the issue of volunteerism on the table and the real concern should center on how do we get more people to become involved in a cause?  Most of our ASO are in shambles due to drastic budget cuts, poor management and public apathy.  We had an advocacy group here that folded two years ago, because nobody thought we needed to advocate for pozzies.  However, since the Ryan White funds keep shrinking, now everybody is screaming that "we need someone to speak on our behalf."  Too bad they were so shortsighted that they allowed that "someone" to fold.

One of our ASOs recently closed and tossed about 3,000 clients out and left them scrambling to find new services.  But our other ASOs were of limited help, because they are beyond capacity with their clients.  At this point it is even unclear if more volunteers would make any difference, because the real issues deal with cold hard cash.  We seem to have volunteers for limited duties, but very few step forward to work on the "soft issues" involving funding and the politics of HIV.

All of this leads to the indisputable fact that you cannot "force" volunteerism from anyone, because it requires  desire and dedication that can only come from the heart.  The needs of our community have been known for decades and the lack of volunteers has many reasons, not the least is that many people feel absolutely no obligation to ever do anything for their fellow human.

Offline poet

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Re: ADAP an entitlement? Should something be asked back for using it?
« Reply #29 on: January 31, 2007, 11:23:03 AM »
Win
Are you old enough to remember the military draft.  I grew up knowing that at age 18 I had to register with the draft board. If I went to college I would get a deferment.
Much to my suprise, when I was in my 5th year at college ( long story...I tranferred schools) I was drafted.  That was 1966.  And let me tell you it was not a good time to be drafted.  I appealed the draft board decision and my father bless his heart went to bat for me and testified that he "wanted his son to finish college."  They allowed me to finish college.  I immediately applied to the Peace Corps and was accepted and sent to Peru after I graduated.  When I returned from the 2 years in the Peace Corps I got a job teaching school. So that I would get another deferment from the draft board. Finally I just was too old to qualify for the draft.

I am not telling my life story here.  I am illustrating that when the government REQUIRES its citizens to do something.  Try as they will, it never is equal in the carrying out of the law.
 I was able to get deferrments whereas many thousands were NOT able to and were killed in that damn war. 
Dont get me started on survivor guilt...first it was Vietnam and now its HIV.
Modified to add:  That draft board is responsible for changing my life for the worse and for killing thousands of people.  The members of the draft board  were good citizens.  Pillars of the community. They were efficiently dong what the government asked them to do.  But at what cost to the kids it ruined.  I think government interference in this or any other area is not necessary.
I can just see Kurt, trying to pick up trash along the highway on his crutches because it was his day to do so.






Thanks for bringing us back to where the thread started, Bear.  ALL the speakers last night, the army veteran, the father with his son in the Marines, the active Marine himself made clear that no draft except perhaps the one for WWII was what it should have been, that any number were not chosen, that it fails to bring out the best and the brightest.  I think they agreed that some sort of return to country, military or civil service, might make sense, might bring the members of the country back to its core values and that offering something, i.e. free college tuition per year of such service might help in another way, making education available to more people.  I edged around the draft, turning 18 in April of 1973.

Moving back to where things here started, I don't want to lose the concept of volunteerism being a means of changing the face of hiv/aids.  Were those physically able to do so going out 'there' in the community as a group of volunteers, perhaps sponsored by an a.s.o., whether it was planting bulbs in a public park or painting a classroom, known, first, as only an anonymous group of volunteers but then, if agreed to, known as a group with hiv/aids, this would be a form of activism which hits those who only know of the groups who demonstrate (and rightly so) as 'the faces.'  Yes, I am shifting things a bit here to say that anytime we, as a group, are out there it helps those who are trying to get ADAP in their state, to keep the funding in place because suddenly the value of such a group is evident to those who would otherwise think of people with hiv/aids as degenerates, of people you would never want to see or know.  So, the question might also be, are we missing an opportunity by not encouraging volunteering.

This is not that far afield from what we do with the mentally challenged.  Rather than keeping them inside behind closed doors, we are encouraged to bring them out, take them out, take them to a movie, to a restaurant.  Not that everyone would want to see them.  But to understand the mentally challenged, you do have to see them.  By bringing them into the wider community, we make the community wider: we broaden the minds of the community.  

I also bring in the mentally challenged because what 'they' can do is not necessarily what others might think of.  So to enable them, we have to rethink what we mean by employment, jobs, work.  But it can be done, as shown by my organisation.  So, to support the concerns addressed here, are we perhaps missing opportunities for volunteering by not attempting to redefine what we mean by them?  Are we sending the wrong message to someone who feels overwhelmed and abandoned that there is 'nothing that they can do,' whereas there just might be, if we thought about redefining what we meant.  Working through this thread we can see a recognision that doing something has a tremendous value to one's wellbeing, to one's feeling whole.  Win
Winthrop Smith has published three collections of poetry: Ghetto: From The First Five; The Weigh-In: Collected Poems; Skin Check: New York Poems.  The last was published in December 2006.  He has a work-in-progress underway titled Starting Positions.

Offline bear60

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Re: ADAP an entitlement? Should something be asked back for using it?
« Reply #30 on: January 31, 2007, 11:57:33 AM »
I also bring in the mentally challenged because what 'they' can do is not necessarily what others might think of.  So to enable them, we have to rethink what we mean by employment, jobs, work.  But it can be done, as shown by my organisation.  So, to support the concerns addressed here, are we perhaps missing opportunities for volunteering by not attempting to redefine what we mean by them?  Are we sending the wrong message to someone who feels overwhelmed and abandoned that there is 'nothing that they can do,' whereas there just might be, if we thought about redefining what we meant.  Working through this thread we can see a recognision that doing something has a tremendous value to one's wellbeing, to one's feeling whole.  Win
.......................................................................................
It occurs to me that (some) ASO's have social workers attached to their program.  If the people on ADAP had EQUAL...and I mean that EQUAL....access to social wokers who could assess their needs and direct them to volunteer work or to  something of their choice maybe just maybe this would be a good thing.  But Win, get real, there is no EQUAL...each state, each municipality is different and money is tight.
My partner Kurt was given an intake interview and had follow ups with his case manager....he basically told them he didnt need the services of a case manager.  He would not have volunteered for anything because he has problems with neuropathy and being on his feet for even a few hours is enough.
When we have the AIDS Walk here... and someone asks why Kurt or I aren't going....our response is that this is for the neggies out there to experience a feelgood feeling by volunteering and raising money.  I have participated in the walk....... Kurt cannot.  Its people like Kurt  that the WALK is supposed to benefit. He wont go and he wont sit in a wheelchair.
Its not the HIV positive people who are poor and sick that need to volunteer.....its those wealthy society folks who think volunteering means putting on a ball gown and attending a fundraiser for the Art Museum.  But I understand that DOING SOMETHING is often a good thing.  Well fine, if thats what the individual pozzie wants.
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Offline Miss Philicia

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Re: ADAP an entitlement? Should something be asked back for using it?
« Reply #31 on: January 31, 2007, 12:02:40 PM »
otherwise this ain't nothing more than indentured servitude
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Offline AustinWesley

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Re: ADAP an entitlement? Should something be asked back for using it?
« Reply #32 on: January 31, 2007, 01:55:33 PM »
Win
Are you old enough to remember the military draft.  I grew up knowing that at age 18 I had to register with the draft board. If I went to college I would get a deferment.
Much to my suprise, when I was in my 5th year at college ( long story...I tranferred schools) I was drafted.  That was 1966.  And let me tell you it was not a good time to be drafted.  I appealed the draft board decision and my father bless his heart went to bat for me and testified that he "wanted his son to finish college."  They allowed me to finish college.  I immediately applied to the Peace Corps and was accepted and sent to Peru after I graduated.  When I returned from the 2 years in the Peace Corps I got a job teaching school. So that I would get another deferment from the draft board. Finally I just was too old to qualify for the draft.

I am not telling my life story here.  I am illustrating that when the government REQUIRES its citizens to do something.  Try as they will, it never is equal in the carrying out of the law.
 I was able to get deferrments whereas many thousands were NOT able to and were killed in that damn war. 
Dont get me started on survivor guilt...first it was Vietnam and now its HIV.
Modified to add:  That draft board is responsible for changing my life for the worse and for killing thousands of people.  The members of the draft board  were good citizens.  Pillars of the community. They were efficiently dong what the government asked them to do.  But at what cost to the kids it ruined.  I think government interference in this or any other area is not necessary.
I can just see Kurt, trying to pick up trash along the highway on his crutches because it was his day to do so.






Hey Bear,

What a great analogy.   I agree with everyone here that compulsary volunteerism is a contradiction in terms and akin to slavery.    I had to laugh at the mental picture in my head of someone on crutches picking up trash along the highway. ; )   Oh, too funny!

Why we are on the topic of the criminalization of HIV+ people, what about the actual criminals in jail?   How bout offering them some incentive for joining the armed forces in exchange for reduced jail time?   What's the average cost of keeping someone in prison for non violent offenders?    Something like 30K a year or more.   The US has more people in prison than any other country in the world.    How many are in for ridiculous drug charges that will end up being career criminals?

Hell, if I go out and commit the right crime I will then be entitled to Free room and board and Free HIV Drugs and medical care.   So, if I am to be demonized for becoming HIV+ and made to feel guilty if I am sucking the system dry to save my life, Hell  I guess I might as well do it up good and rob a 7 Eleven at gunpoint!

Then I could sit peacefully in jail, and still be able to post classified ads for a partner cause the Supreme Court ruled that's a right I should have!

Come on people, let's fuel this fire with a little common sense. ; )   Just some of my own random thoughts ; )

Wesley
« Last Edit: January 31, 2007, 02:41:40 PM by AustinWesley »
Diag. 3/06  Infected aprx. 2 mo. Prior
Date        CD4   %      VL
4/6/06     627    32    36,500     NO MEDS YET!
6/7/06     409    27    36,100
8/23/06   408    25     22,300
1/2/07     354    23     28,700
2/9/07     139    30     23,000  Hep A Vaccine same day???
2/21/07   274    26     18,500 
3/3/07    RX of Truvada/Sustiva Started.
4/5/07    321     27      Undectable 1st mo.  
5/16/07  383     28    Undectable 2nd mo.
8/10/07  422     32   UD <48 on new scale!

Offline poet

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Re: ADAP an entitlement? Should something be asked back for using it?
« Reply #33 on: January 31, 2007, 03:16:08 PM »
Wesley, I wasn't aware that we were on the topic of the criminalisation of hiv positive people and I hope that I have not suggested it in any way. I also haven't attached the word guilt in connection with receiving assistance because there should be none.  Someone qualified to do so established the conditions under which someone would be able to apply for and receive benefits.  But, clearly, some still sit with guilt which we have discussed in the forums.  Sitting with it rarely gets at the cause or lifts it from them. 

I agree with you, Bear, that money is tight with almost every a.s.o.  But that is why we had both G.M.H.C. in NYC (through which healthy people told 'sick' people what to do) and P.W.A.C. where people with hiv/aids discovered self-empowerment.  If the a.s.o. is short-staffed, that's where volunteers from the hiv/aids community come in.  We are the ones who are on the advisory board for a reason and one of those reasons is to suggest gaps, opportunities.  I honestly can't think of one situation in which an a.s.o. thought of contributing to its community.  Understandably, Kurt is not going to participate in a walk or in something which requires him to stand, which is why I commented earlier that, as with the mentally challenged community I work with, perhaps we need to rethink what volunteering means in actions?  Perhaps we need to create not only AIDS walks but other actions of fundraising, awareness and self-empowerment? Perhaps Kurt's is the voice we need to hear from on this, not that yours isn't valued, the voice of someone who might just say, 'yes, figure out how to work around my limitations and I would want to think about it.'

You and others also probably know the reality of fundraising.  It's the fancy dress balls which attract those with the largest incomes which, in theory, net out the largest payoffs of charities.  In theory because we all remember the scandal of the AIDS Rides and how much of the gross receipts were needed to cover 'costs' which is the curse of any benefit by any organisation.  I have always felt that an event must cater to every income level.  A night of a thousand dinners at every possible price level so that Mr. and Mrs. W.F. Buckley as well as John and Mary can participate IF they so choose to.  And so it should never be the 'need' to volunteer, to contribute, to circle back to the thread, but the desire to do something and the means to fulfill that desire and feel that you have, in your own way, of your own will, contributed by volunteering. 

Yes, it's inescapable in the Commonwealth, the 'ask not what your country can do for you, but what you can do for your country.' Here, I am asking in 2007, what can those of us with hiv/aids do for ourselves as well as for our communities as actions of self-empowerment.  Win

Winthrop Smith has published three collections of poetry: Ghetto: From The First Five; The Weigh-In: Collected Poems; Skin Check: New York Poems.  The last was published in December 2006.  He has a work-in-progress underway titled Starting Positions.

Offline AustinWesley

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Re: ADAP an entitlement? Should something be asked back for using it?
« Reply #34 on: January 31, 2007, 04:50:41 PM »
Wesley, I wasn't aware that we were on the topic of the criminalisation of hiv positive people and I hope that I have not suggested it in any way. I also haven't attached the word guilt in connection with receiving assistance because there should be none.  Someone qualified to do so established the conditions under which someone would be able to apply for and receive benefits.  But, clearly, some still sit with guilt which we have discussed in the forums.  Sitting with it rarely gets at the cause or lifts it from them. 

I agree with you, Bear, that money is tight with almost every a.s.o.  But that is why we had both G.M.H.C. in NYC (through which healthy people told 'sick' people what to do) and P.W.A.C. where people with hiv/aids discovered self-empowerment.  If the a.s.o. is short-staffed, that's where volunteers from the hiv/aids community come in.  We are the ones who are on the advisory board for a reason and one of those reasons is to suggest gaps, opportunities.  I honestly can't think of one situation in which an a.s.o. thought of contributing to its community.  Understandably, Kurt is not going to participate in a walk or in something which requires him to stand, which is why I commented earlier that, as with the mentally challenged community I work with, perhaps we need to rethink what volunteering means in actions?  Perhaps we need to create not only AIDS walks but other actions of fundraising, awareness and self-empowerment? Perhaps Kurt's is the voice we need to hear from on this, not that yours isn't valued, the voice of someone who might just say, 'yes, figure out how to work around my limitations and I would want to think about it.'

You and others also probably know the reality of fundraising.  It's the fancy dress balls which attract those with the largest incomes which, in theory, net out the largest payoffs of charities.  In theory because we all remember the scandal of the AIDS Rides and how much of the gross receipts were needed to cover 'costs' which is the curse of any benefit by any organisation.  I have always felt that an event must cater to every income level.  A night of a thousand dinners at every possible price level so that Mr. and Mrs. W.F. Buckley as well as John and Mary can participate IF they so choose to.  And so it should never be the 'need' to volunteer, to contribute, to circle back to the thread, but the desire to do something and the means to fulfill that desire and feel that you have, in your own way, of your own will, contributed by volunteering. 

Yes, it's inescapable in the Commonwealth, the 'ask not what your country can do for you, but what you can do for your country.' Here, I am asking in 2007, what can those of us with hiv/aids do for ourselves as well as for our communities as actions of self-empowerment.  Win



Hey Win,

That's true.  I got a little off topic, but I wanted to make a point.   Nobody seems to question what convicts can do for the community while they are incarcerated recieving all this medical treatment at our expense.   Perhaps we need to look at pulling resources out of jails and prioritizing the health and safety of those who haven't commited a crime first?   In that respect, I feel there is a correlation and relevance.   Why are convicts placed as more important by societies standards and how come we are allowing that?  What kind of message does that send to people with HIV or AIDS?

Another person posted that not all of us here boast about what we've done in the way of volunteering or contributing.   Amen to that.  It seemed as though people were getting frustrated (myself included) with the train of thought that people should be required to "pay back" or do this or that.  Not suggesting you are pushing one way or another!

I understand your point.   There is a sense of empowerment that comes from volunteering or contributing back in some way which can be very rewarding regardless of one's situation or means.   I think just letting people know what's needed is the first step.   

Forcing it on them was what I wanted to make crystal clear is not going to work.   Additonally, I don't think I used the word properly when I used criminalization.   I should have said guilting and shaming people isn't an acceptable or appropriate approach to encouraging people to give back.

Additionally, I think volunteer work especially for those newly diagnosed can be an excellent means of coping and restoring their self worth etc.   It's an excellent way to meet supportive friends etc.   The list goes on and on with the rewards that people can gain from volunteering who also happen to be positive.   

That said, I now have read some other things you've brought up that have my interest.   The scandals with some of the AIDS organizations.  Don't get me started on that.   And the pretentious players in the Activism scene throwing lavish parties and creating frivolous litigation.   Power corrupts ;)   Many people are apathetic because of things like that and I see some excellent and creative ideas your bringing into play in the next post. 

I'm not arguing with you.  I'm glad you are bringing up these ideas and getting people to think and hopefully brainstorm to find some inovative ways to help improve the current situation.

Wesley

« Last Edit: January 31, 2007, 04:53:13 PM by AustinWesley »
Diag. 3/06  Infected aprx. 2 mo. Prior
Date        CD4   %      VL
4/6/06     627    32    36,500     NO MEDS YET!
6/7/06     409    27    36,100
8/23/06   408    25     22,300
1/2/07     354    23     28,700
2/9/07     139    30     23,000  Hep A Vaccine same day???
2/21/07   274    26     18,500 
3/3/07    RX of Truvada/Sustiva Started.
4/5/07    321     27      Undectable 1st mo.  
5/16/07  383     28    Undectable 2nd mo.
8/10/07  422     32   UD <48 on new scale!

Offline aupointillimite

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Re: ADAP an entitlement? Should something be asked back for using it?
« Reply #35 on: January 31, 2007, 04:59:11 PM »
I also haven't attached the word guilt in connection with receiving assistance because there should be none. 

I think, given the state of American culture... with the heavy emphais on "hard work" and "prosperity being a sign of God's favor" (inheritances from the New England Puritans which have seeped into our national consciousness), that it's already hard for Americans to accept public assistance without feeling some residual guilt. 

Seriously, the message that we always hear essentially boils down to, "being poor is bad and undesireable" which means we look at poor people and make a subconcious connection that they are bad and undesirable.  Welfare receipients barely rank above the homeless on the American social ladder... there's already a whole bunch of guilt there... and there will be guilt simply because this is taking place within the context of American society.

And Win, I know that you are absolutely not trying to make anyone feel guilty... but I think since American society already makes people on the dole feel bad for it... that asking them to "do more" is paramount to having an emotional stranglehold on these people. 
Your tastebuds can't repel flavor of this magnitude!

Offline fondeveau

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Re: ADAP an entitlement? Should something be asked back for using it?
« Reply #36 on: January 31, 2007, 05:39:35 PM »
When I was first diagnosed, a state caseworker called me and wanted to set up all an appointment to offer me a variety of services.  I refused and pointed out that I was fortunate to have an income, insurance, and my own physician.  And, indeed, I am fortunate and must admit to recent attendance at a black-tie affair and auction for the benefit of the local ASO.  I had a nice dinner, met very nice people, and ended up donating more than $1k to the ASO.  If I learned that the ASO required "volunteer" service from the people it served, I would stop donating, even where the ASO thought that volunteers would provide good public relations for the cause.  I gave the money freely so that the ASO could freely give to those who it serves and I expect that it will be given freely without any recompense whatsoever.

Currently, I am disturbed at the Red Cross which is involved in surplus food distributions.  The Red Cross solicits sponsorship of $1000.00.  For that $1000.00, the Red Cross organizes a food distribution where $5000.00 "worth" of food is distributed.  Volunteers unload a semi-truck and pass the food out to any who arrive seeking help.  This all seemed wonderful until I looked at the food which was being distributed. 

Its not that quantity buying power or a secret source has aided in the purchase of this food.  Rather, it appears that grocery stores and food distributors have found a way to simultaneously get a tax write-off and save money on their garbage bill by sending $5000.00 "worth" of what would otherwise be dumped in the landfill for distribution to the needy.  I am not quite sure of this, but am under the impression that the Red Cross lends their name and reputation to the enterprise and keeps the $1000.00. It all reminds me of the Seinfeld episode where Elaine was selling muffin tops and donating the muffin stumps to the homeless shelter.  She expected thanks, but instead was treated to a diatribe that even the homeless like the muffin tops and what was she thinking, that somehow homeless people were desperate enough to eat the stumps that her customers disdained?

The point that I'm trying to make is that while a goal may seem desirable and laudable (increasing volunteerism, raising public awareness, etc.) - the ends do not justify the means.  For example, I might have a sincere desire to donate $50,000.00 to my local ASO.  But, I could not obtain the money by robbing my local bank.

Unless, perhaps, I was a member of ACT-UP - I think they did take the position that desperate times required desperate measures and therefore, found justification thereby.


« Last Edit: January 31, 2007, 05:43:56 PM by fondeveau »

Offline dixieman

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Re: ADAP an entitlement? Should something be asked back for using it?
« Reply #37 on: January 31, 2007, 05:50:30 PM »
hmmm ... I think everyone has brought up some interesting points... our government spends 72 billion on Americans a year for health-care while spending 4 trillion dollars overseas... I question this? I think we should provide healthcare to each and everyone in this country... take care of our own first and if we have funds available support and help out other countries who need assistance... also one point made on inmates... do you want to have hiv and be incarcerated? believe me the care is minimal...if not inadequate.

Offline David_CA

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Re: ADAP an entitlement? Should something be asked back for using it?
« Reply #38 on: January 31, 2007, 06:03:35 PM »
In a way, I think there is someting to be said for giving something back, whether it be for food stamps, welfare, or ADAP.  I'm certainly not saying that everybody (including my husband) should have to work a second 'job' to get meds.  It could be answering phones at an AIDS hotline a couple of hours a month, assisting in some sort of prevention education / awareness programs, assisting at an end-stage AIDS Hospice type of facility, something, anything. 

I realize some pay taxes and think that since they don't drive, they should pay less.  They do; they don't buy gasoline or diesel (at least in NC).  The more gas I use, the more road taxes I pay.  I don't have kids in school, but I don't pay less in taxes because of it; I'd rather some of my tax money go to fund schools so that at least some kids are getting some sort of education (or have the opportunity to) than reduce the available funding because I don't have kids. 

What's so wrong with requiring something, within reason, in return for any social services?  I am fortunate to work, so my income isn't free.  Insurance is part of my job's benefits, but I still work for those benefits.  I still pay co-pays and deductibles.

I'm not saying that everybody on any sort of govt. subsidy should automatically have to volunteer 20 hours per week in addition to raising kids and working a full-time minimum wage job while dealing with poor health.  I KNOW that there are some of us that could do something, even if it's helping with prevention, that also benefits us; it keeps HIV in the mainstream and hopefully a few people negative to there will be less dilution of current funds. 

From the posts I've read above, I think I'm one of the few who's said anything even somewhat supporting 'giving back'.  I know I take a lot for granted, and I'm definitely not the only one.  I guess what I'm saying is that it wouldn't hurt many of us to give something somehow. 

I think Lis said it best:
Quote
I dont qualify for ADAP... i wish i did... I would do anything!!!


David
Black Friday 03-03-2006
03-23-06 CD4 359 @27.4% VL 75,938
06-01-06 CD4 462 @24.3% VL > 100,000
08-15-06 CD4 388 @22.8% VL >  "
10-21-06 CD4 285 @21.9% VL >  "
  Atripla started 12-01-2006
01-08-07 CD4 429 @26.8% VL 1872!
05-08-07 CD4 478 @28.1% VL 740
08-03-07 CD4 509 @31.8% VL 370
11-06-07 CD4 570 @30.0% VL 140
02-21-08 CD4 648 @32.4% VL 600
05-19-08 CD4 695 @33.1% VL < 48 undetectable!
08-21-08 CD4 725 @34.5%
11-11-08 CD4 672 @39.5%
02-11-09 CD4 773 @36.8%
05-11-09 CD4 615 @36.2%
08-19-09 CD4 770 @38.5%
11-19-09 CD4 944 @33.7%
02-17-10 CD4 678 @39.9%  
06-03-10 CD4 768 @34.9%
09-21-10 CD4 685 @40.3%
01-10-11 CD4 908 @36.3%
05-23-11 CD4 846 @36.8% VL 80
02-13-12 CD4 911 @41.4% VL<20
You must be the change you want to see in the world.  Mahatma Gandhi

Offline fondeveau

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Re: ADAP an entitlement? Should something be asked back for using it?
« Reply #39 on: January 31, 2007, 06:18:45 PM »
The point of social safety net programs is to help those who cannot help themselves.  It sounds generous in many ways, but there is a selfish side to it as well.  The overall social cost of helping the needy in time of crisis is less than helping them in time of extreme unction.  A stitch in time does save nine.  Therefore, there is no need for repayment.  Imagine someone without access to medical care who then progresses to full-blown AIDS and is subsequently hospitalized in intensive care for a month.  They will quickly use up more resources during that month than resources used had HAART and other assistance been provided from diagnosis.

Offline aupointillimite

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Re: ADAP an entitlement? Should something be asked back for using it?
« Reply #40 on: January 31, 2007, 06:19:13 PM »
In a way, I think there is someting to be said for giving something back, whether it be for food stamps, welfare, or ADAP.  I'm certainly not saying that everybody (including my husband) should have to work a second 'job' to get meds.  It could be answering phones at an AIDS hotline a couple of hours a month, assisting in some sort of prevention education / awareness programs, assisting at an end-stage AIDS Hospice type of facility, something, anything. 

I realize some pay taxes and think that since they don't drive, they should pay less.  They do; they don't buy gasoline or diesel (at least in NC).  The more gas I use, the more road taxes I pay.  I don't have kids in school, but I don't pay less in taxes because of it; I'd rather some of my tax money go to fund schools so that at least some kids are getting some sort of education (or have the opportunity to) than reduce the available funding because I don't have kids. 

What's so wrong with requiring something, within reason, in return for any social services?  I am fortunate to work, so my income isn't free.  Insurance is part of my job's benefits, but I still work for those benefits.  I still pay co-pays and deductibles.

I'm not saying that everybody on any sort of govt. subsidy should automatically have to volunteer 20 hours per week in addition to raising kids and working a full-time minimum wage job while dealing with poor health.  I KNOW that there are some of us that could do something, even if it's helping with prevention, that also benefits us; it keeps HIV in the mainstream and hopefully a few people negative to there will be less dilution of current funds. 

From the posts I've read above, I think I'm one of the few who's said anything even somewhat supporting 'giving back'.  I know I take a lot for granted, and I'm definitely not the only one.  I guess what I'm saying is that it wouldn't hurt many of us to give something somehow. 

I think Lis said it best:

David


I understand what you're saying, David.  I really do.

But then what's to stop the government from requiring us to "give back" something for freedom of speech?  I'm not trying to make your point absurd, but I am always inherently uncomfortable when the government forces citizens to "sacrifice" something.  It's not "service" when it's done under compulsion... it's more akin to slavery. 
Your tastebuds can't repel flavor of this magnitude!

Offline fondeveau

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Re: ADAP an entitlement? Should something be asked back for using it?
« Reply #41 on: January 31, 2007, 06:27:24 PM »
You could also look at it this way:  We the People provide ADAP to you.  You in return remain healthy and productive.  Ah, hah! Aupointillimite has hit the nail on the head! The presumption is that people who qualify for ADAP are not productive and therefore, should be encouraged, coerced, or compelled to be productive through "volunteer" service.

This might be short-sighted.  I like to think that with proper care, they will be better and return to a "productive" lifestyle.  Its not quite like the stories of welfare queens with a dozen children to get more welfare benefits.  Surely, no one is HIV+ because they want ADAP/ASO assistance.

Offline bocker3

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Re: ADAP an entitlement? Should something be asked back for using it?
« Reply #42 on: January 31, 2007, 06:38:51 PM »
But then what's to stop the government from requiring us to "give back" something for freedom of speech?  . 

The difference is that the government "gives" us services -- it is not a right.  Freedom of Speech is given fromt he Constitution -- it is a right.  (of course, some in our government do find the Constitution to be suggestive versus complusory -- but he'll be leaving office soon)

Now -- I'm not disagreeing with any other points -- I just had to comment on this analogy -- because it is not the same.  One could argue that Health Care should be a right, but it currently is NOT.

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

Offline aupointillimite

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Re: ADAP an entitlement? Should something be asked back for using it?
« Reply #43 on: January 31, 2007, 06:40:31 PM »
The difference is that the government "gives" us services -- it is not a right.  Freedom of Speech is given fromt he Constitution -- it is a right.  (of course, some in our government do find the Constitution to be suggestive versus complusory -- but he'll be leaving office soon)

Now -- I'm not disagreeing with any other points -- I just had to comment on this analogy -- because it is not the same.  One could argue that Health Care should be a right, but it currently is NOT.

Mike

Just because a right isn't enumerated in the Constitution doesn't mean it doesn't exist.  It says so.

And I think health care IS a right.
Your tastebuds can't repel flavor of this magnitude!

Offline Lisa

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Re: ADAP an entitlement? Should something be asked back for using it?
« Reply #44 on: January 31, 2007, 06:44:13 PM »
Good points by both of you....sorry for the hijack Win........You fellas may want to peek into the Activism Forum.

::bows out quietly::
No Fear  No Shame  No Stigma
Happiness is not getting what you want, but wanting what you have.

Offline fondeveau

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Re: ADAP an entitlement? Should something be asked back for using it?
« Reply #45 on: January 31, 2007, 06:44:39 PM »
A strict constructionist would say that a right which is not enumerated does not exist.  Others, argue that the document is a living thing and that, yet more rights emanate from its penumbras...

Offline AustinWesley

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Re: ADAP an entitlement? Should something be asked back for using it?
« Reply #46 on: January 31, 2007, 06:45:53 PM »
hmmm ... I think everyone has brought up some interesting points... our government spends 72 billion on Americans a year for health-care while spending 4 trillion dollars overseas... I question this? I think we should provide healthcare to each and everyone in this country... take care of our own first and if we have funds available support and help out other countries who need assistance... also one point made on inmates... do you want to have hiv and be incarcerated? believe me the care is minimal...if not inadequate.

Obviously, I was using my scenerio to bring attention to the lack of assistance to people with HIV & AIDS.   And, no I don't plan to hold up a 7 Eleven, but if I did I am certain I wouldn't be forced to fill out countless forms and deal with all the beuracracy and red tape to get HIV meds.  

Just for the record I'm not on any public assistance program and I am lucky for now to have insurance.  

Others aren't so lucky.    Now, after all the mental anguish they've been through, some even prisoners of their own bodies or minds and we want to humiliate them further by suggesting they are less than worthy by not giving back.

Are there people who could do more?  Sure.  

Are there people abusing the system?  Definitely!

But, as you said all this money going overseas.   Clearly, if that money was redirected back into programs in the US a lot more could be done here at home!



« Last Edit: January 31, 2007, 06:50:32 PM by AustinWesley »
Diag. 3/06  Infected aprx. 2 mo. Prior
Date        CD4   %      VL
4/6/06     627    32    36,500     NO MEDS YET!
6/7/06     409    27    36,100
8/23/06   408    25     22,300
1/2/07     354    23     28,700
2/9/07     139    30     23,000  Hep A Vaccine same day???
2/21/07   274    26     18,500 
3/3/07    RX of Truvada/Sustiva Started.
4/5/07    321     27      Undectable 1st mo.  
5/16/07  383     28    Undectable 2nd mo.
8/10/07  422     32   UD <48 on new scale!

Offline aupointillimite

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Re: ADAP an entitlement? Should something be asked back for using it?
« Reply #47 on: January 31, 2007, 06:47:03 PM »
A strict constructionist would say that a right which is not enumerated does not exist.  Others, argue that the document is a living thing and that, yet more rights emanate from its penumbras...

I will quote the Ninth Amendment to the Bill of Rights, then I'm gonna stop hijacking Win's thread.  Sorry, Win!

"The enumeration in the Constitution, of certain rights, shall not be construed to deny or disparage others retained by the people."

Can't get more stricly constructed than that.

Suck it, conservatives.   ;)
Your tastebuds can't repel flavor of this magnitude!

Offline fondeveau

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Re: ADAP an entitlement? Should something be asked back for using it?
« Reply #48 on: January 31, 2007, 06:50:53 PM »
The powers not delegated to the United States by the Constitution, nor prohibited by it to the states, are reserved to the states respectively, or to the people....unfortunately, the strict constructionists then argue that this clause indicates that its all federal or state, and nothing is retained by the people.

Alas, another hijack...

Offline J.R.E.

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Re: ADAP an entitlement? Should something be asked back for using it?
« Reply #49 on: January 31, 2007, 06:53:17 PM »
Hello Wyn,

"If someone agrees to accepting drug assistance, should that person be asked, be required to give back in some way, through community service, hiv/aids connected or not?"


I have never received any assistance, through any agency federal or local agency, at this point in my HIV/Aids infection. I have been fortunate enough,healthy enough, to still be able to work, and have insurance which makes things affordable right now. Of course anything medically catastrophic, could change that overnight. And I completely understand that I will not always be able to continue working. There will be a point, when I will have to utilize the programs that may be available to me. I have managed through the years to remain somewhat financially responsible, even though there were tough times in the past. But, as long as I can continue to be able to afford medication , and pay the bills, and the other expenses, I, at this point refuse assistance, even if it was available to me. There are others that are more needy.

I don't believe a person should be asked to repay, or volunteer their time back to the community in some form if they are receiving assistance.

HOWEVER....  MY own personal thoughts are, that I would. As long as I was physically and mentally capable, I wouldn't hesitate to give back, if I was receiving assistance in some form. To me, it is just the way I was raised. I don't know how to think differently.

I simply don't believe in taking something, without giving something, I would always try to find some way to pay back. Once again, this is the way I was raised. It kind of sticks with you through all the years.





Just my thoughts-----Ray
« Last Edit: January 31, 2007, 06:54:55 PM by J.R.E. »
Current Meds ; Viramune, Epzicom, 40mg of simvastatin, 25 mg of Hydrochlorothiazide.
Metoprolol tartrate 25mg



http://forums.poz.com/index.php?topic=40802.0

http://forums.poz.com/index.php?topic=45159.0

http://forums.poz.com/index.php?topic=39722.msg495621;topicseen#msg495621

http://forums.poz.com/index.php?topic=46806.0

http://forums.poz.com/index.php?topic=39414.msg491701#msg491701


Diagnosed positive in 1985,.. In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started on  HAART on October 24th, 2003.

 As of 12/10/14,  t-cells are at 350,  Previous 8/25/14--- 402/ Viral load remains <40

 Current % is at 13% / Previous 8/25/14 11%

  
 63 years young.

 


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