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Author Topic: I give up! Jonathan and others, this is shocking!  (Read 7430 times)

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Offline Moffie65

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  • Posts: 1,755
  • Living POZ since 1983
I give up! Jonathan and others, this is shocking!
« on: July 06, 2006, 09:31:49 AM »
I found something in my mail box yesterday, that shocked the hell out of me.  Now HRSA is actually instituting a program that formalizes the innocuous nature of HIV disease.  It is blandly called "Self Management and the Chronic Care Model, or CCM".  It now appears that our pleas to keep the real definition of HIV as a "Terminal Disease" is being scrapped formally and it is now taking it's position right next to Diabetes, and Arthritis.  They give no less than 21 "Professional" opinion paper references in this posted publication, and my first thought was, "I wonder just how many of these very learned opinions are from anyone actually "Living" with HIV?"  I also wonder just how many of these people went to Nebraska, and asked one specific case manager that has refused to cover the medications for one of our own very special AM members, and asked that Case Manager what was going to happen to her job when her client died from lack of medications.  I was also jerked back into their reality, wondering just how many of them ever spoke to some of those that are currently struggling for life with HIV, and just how many questioned those on their death beds. 

I tell you all that are newly infected; when the political climate changes, and there is no money left for care, therapy, Case Management, transportation to get to your doctor, paid doctor visits, and all the things that the Ryan White CARE Act pay for to keep you on this planet; what are you going to do?  Are you going to just give up the ghost and die, or are you finally going to get pissed off at an administration and Congress that allowed a Baptist Minister to be appointed Chief, the President's HIV/AIDS efforts.  I see threads here that are discussing gym regimens, and working out, as issues of merit.  I have news for you;  "Can you say trivial pursuit?"  I am not condemning working out nor am I advocating that we should not be caring for our bodies' health and fitness; only trying to point out that there might just be something more important to discuss now that our complacency is "ALLOWING" the government that has committed itself to care for our needs, is formalizing a "lack of care model", in an effort to cut costs and feed the "WAR MACHINE" of a mad Texan.


Here are the linkshttp://hab.hrsa.gov/publications/march2006/

http://hab.hrsa.gov/special/ccm/ccm.htm

And you wonder why I am always campaining for some of you to get off your dead ass and get busy advocating for your own health?

I abject Sorrow.
The Bible contains 6 admonishments to homosexuals,
and 362 to heterosexuals.
This doesn't mean that God doesn't love heterosexuals,
It's just that they need more supervision.
Lynn Lavne

Offline allopathicholistic

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  • Posts: 3,258
Re: I give up! Jonathan and others, this is shocking!
« Reply #1 on: July 06, 2006, 09:57:43 AM »
when the political climate changes, and there is no money left for care, therapy, Case Management, transportation to get to your doctor, paid doctor visits, and all the things that the Ryan White CARE Act pay for to keep you on this planet; what are you going to do?  Are you going to just give up the ghost and die, or are you finally going to get pissed off at an administration and Congress that allowed a Baptist Minister to be appointed Chief, the President's HIV/AIDS efforts. 

I certainly don't want to give up. I still have fight left in me ---mainly because I haven't been fighting for decades. I will continue to regard these forums as a primary source of information. Thanks Moffie

Offline Moffie65

  • Member
  • Posts: 1,755
  • Living POZ since 1983
Re: I give up! Jonathan and others, this is shocking!
« Reply #2 on: July 06, 2006, 10:57:46 AM »
Thanks for your voice, I know you will use it for the best energy output.

I am sorry that I closed this post so dogmaticly, but I cannot hide the true feelings I have. 

I consumed a wonderful breakfast with two eggs, one bananna nut muffin, two maple bacon, and one half tomato, topped off with a cup of fresh ground coffee, with half and half; and came to a delightful finish with a bowl of Goddesses good old green hemp medication.  Now I am ready for one more day of this interesting quest for longevity, and for peacful co-existence.

In constant awe.
The Bible contains 6 admonishments to homosexuals,
and 362 to heterosexuals.
This doesn't mean that God doesn't love heterosexuals,
It's just that they need more supervision.
Lynn Lavne

Offline B99

  • Member
  • Posts: 33
Re: I give up! Jonathan and others, this is shocking!
« Reply #3 on: July 06, 2006, 11:33:33 AM »
I always feel like I have to watch myself when I respond to things here; because, being new to this disease and out of respect for those who have been living with this for decades and for those who have died, I don't have all of the life experience dealing with this condition and society in respects to it.  I can only go off of what my perception was just prior to my diagnosis and my perception just on the other side.
And I guess I have more of a question(and it honestly is an innocent one, not meant to challenge someones views, but to learn from it) what are the ramifications of classifying HIV infection as a chronic disease?  True people are still dying.  But people are still dying from diabetes and heart disease.  One of the perceptions of this condition before I was diagnosed was that HIV was equal to DEATH.  That (and the fact that I didn't have health insurance) was part of the reason why I did not get tested for 3 years though I suspected and I was suspicious of the person I contracted it from.
How you frame it, though, is important.  You just don't want people thinking that they can be irresponsible and just take a few pills and still live.  But you want people AND businesses to know that people living with HIV can do that: LIVE.  Maybe the life insurers will start allowing HIV positive people to get insurance in case something happens to them.  They've already started in Europe, we might move towards that in the US.  Maybe with this being classified this way-EVENTUALLY-drug prices might go down or level out over time to match prices for other drugs. AND, most of all, maybe those living with HIV won't be seen as lepers in society.  That might be far reaching hopes, due to the nature of how HIV is contracted.  But just as society is SLOWLY moving towards racial diversity and SLOWLY moving towards diversity on levels of sexual preference and disability, this might just be the Plessy v. Ferguson, Brown v. Board of Education, Roe v. Wade that the movement for those living with HIV need to become more intergrated in society. Granted, it probably won't fully happen until HIV becomes innocuous some how, whether through a vaccine or cure.
Obviously, it is a complicated issue.  And I am not advocating for people to be complacent with politicians on any level.  Left to their own accords politicians and health professionals will act in their own best interests. I have grown up black all of my life and know about the cold shoulder of politics and health care.  I am also 24; young, a position in life that no older group (politician or otherwise) thinks has anything to say.  But giving society a hope that there is life with HIV, that we are progressing through effective treatments towards a cure, can probably help the momentum.  We have proof that the money put in to this epidemic has not been in vain.  Those of us who would have been dead 10 years ago are still alive and are projected to live.  That can be used to get more funding, to spark a new interest and dedication to the movement.  In my view, this only kills the cause if we let it kill the cause.  
(BTW. I did ask a question at the beginning of this that I am interested in a response to, I just get long winded  ;D My opinion is not the only opinion and does represent, admittingly, a naive perspective.  But sometimes a simple, unencumbered perspective can be useful.)
Take Care Everyone.

Offline Moffie65

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  • Posts: 1,755
  • Living POZ since 1983
Re: I give up! Jonathan and others, this is shocking!
« Reply #4 on: July 06, 2006, 12:17:14 PM »
From the bottom up; your opinion, either stated or unstated, is of tremendous value to all of us, and thanks for the questions.
Quote
what are the ramifications of classifying HIV infection as a chronic disease?

I have been digesting these two documents, and what I see is a sort of "pie in the sky" approach to a very complex issue. 
What this program, (which by the way, is already in motion, as is wouldn't have been published on the HRSA site, if it was not already in the implementation phase) assumes:

1. the people running the RW CARE Act in the respective states, are proficient and not already making life and death decision for clients.
2. it is currently working,
3. that HAART will work forever
4. that the drug companies will continue to find profit in further drug development
5. and that the government will continue to fund research
6. that the virus will never replicate beyond therapy
7. that our organs will sustain us for a lifetime with toxic substances coursing through our veins
8. that we are not all guinea pigs, and at 15 years, they suddenly all stop working
9. and finally that the individual taxpayers will continue to stand behind the politicians that have to vote to sustain us every five years.

I am sorry, B99, but those are just far too many maybes to turn this into an asthma type disease. If any one of the above 9 points fall out of focus, we are screwed, and I don't care how you define it, we are then living with a FATAL DISEASE.  Like I said above, there are those of us living right here on this site, that are just now, after 11 years of therapy; dealing with viruses that are mutating out of control, and show no mercy in the face of any drugs, even the new ones.  I just buried a friend who died of complications from the medications, and there will certainly be more who are going to expire, even in the full spectacle of our dear Pharmacy Industry, who have largely been responsible for this turn of events.

I cannot answer all your questions, as I don't have the answer.  I know I aspire to be independent, and working and alive and thriving; but I must tell you, we must still understand the unfortunate reality, that this bug is a mutant virus, we will never know the answers until there is a cure.

Thanks for asking.
 
In Love.
« Last Edit: July 06, 2006, 12:21:13 PM by Moffie65 »
The Bible contains 6 admonishments to homosexuals,
and 362 to heterosexuals.
This doesn't mean that God doesn't love heterosexuals,
It's just that they need more supervision.
Lynn Lavne

Offline dario

  • Member
  • Posts: 80
Re: I give up! Jonathan and others, this is shocking!
« Reply #5 on: July 06, 2006, 12:32:29 PM »
B99,

read this article to know what will have to 20% of us in our old age (even if we successfully keep the virus low by taking HAART) and I think you will change your mind.

http://www.hivmedicine.com/textbook/hive.htm

ciao
... when I was young, I never needed anyone, making love was just for fun, those days are gone ... Eric Carmen (Raspberries)

Offline Moffie65

  • Member
  • Posts: 1,755
  • Living POZ since 1983
Re: I give up! Jonathan and others, this is shocking!
« Reply #6 on: July 06, 2006, 12:46:38 PM »
Dario.

Interesting you should find this, and place it here.  My doctor, nurse, and my partner are all of the understanding that if this nature of imparement happens to me, then the pills need to be prescribed, and dispensed.  I will not place this kind of burden on the ones I love, only to stay here as a "veggie".

Thanks.

In Love.
The Bible contains 6 admonishments to homosexuals,
and 362 to heterosexuals.
This doesn't mean that God doesn't love heterosexuals,
It's just that they need more supervision.
Lynn Lavne

Offline jkinatl2

  • Member
  • Posts: 6,007
  • Doo. Dah. Dipp-ity.
Re: I give up! Jonathan and others, this is shocking!
« Reply #7 on: July 06, 2006, 02:00:40 PM »
More then ever, I feel that I have not been forceful enough with my ranting posts about activism, funding, and the growing apathy I witness within the HIV infected community.

One by one, over the years, I have seen people go from pie-eyed parrots of the health system,  to beaten and battered veterans of the reality that is HIV.

And in the end, I am called a downer for bringing up the salient points. Or worse, accused of flame bait.

Sometimes I sorta want to give in. Not say anything. Let the people find out for themselves. Gloat a little, when the same doctor who tells someone that perfect adherence = perfect treatment has to pile on prescriptions for PN, or has to explain why "perfectly" administered treatment sometimes fails.

Sometimes I get a mean streak, and wait for the day when the arrogant and dismissive attitudes towards those who have weathered this pandemic turns into that stunning, awful moment of clarity. When they see we were right.

When they see that liberties and support ssytems WILL vanish if we don't maintain them with the vigilance of true activists. Such activism is not always pretty. Sometimes we poke a stick into the nest. Sometimes we use the F word in polite company. Sometimes we make enemies. I am certainly not saying that everyone has to do all that. But there's a real sense of shooting the messenger here.

I was appalled and disgusted by many of the responses to my Zephyr thread in the Clinical Trials section. Notwithstanding the fact that I was totally accurate in my assessment of the situation, but rather than discuss the situation, several members took it upon themselves to attack me, with lies and half-truths. I lost a few online "friends" over that one. Or rather, I discovered that I had fewer friends than I thought, all along.

But here's the thing. While we pick apart one another, while we sit by and idly sip our coffee and watch Survivor, there are people who are HIV infected and affected who are making great sacrifices to find cures, to protect our status, to stave off the erosion of privacy and support that our government has perpetuated in the last six years.

I said it a LONG time ago, in one of my first blogs. And I reiterate it again because it has yet to prove invalid. Those who have not been directly and devastatingly impacted by HIV infection are far more likely to be submissive to the healthcare system, more likely to be dismissive of the long term survivors, and are far more offended at having their worldview challenged insofar as the nature of this pandemic.

The awful thing? These are the people with the PHYSICAL STRENGTH to stop these injustices, to FUND the worthy research initiatives, to ACT.

How many HIV activists type their messages, write their letters, share their perspective from the bed, or the toilet? Too fucking many.

We will end up losing Ryan White, that much I know. And the loss of medical help will be first felt in the poorest, the least educated, the sickest. Minorities, women, drug users, incarcerated people will go first.

Women with HIV will be next, regardless of race. Because HIV impacts females to a far greater degree than males, because we still live in a society that sees female as less than male. Because there will be no incentive for an employer to maintain the cost of HAART for a female, to the detriment of the entire company.

Gay guys, ironically, will survive longest, probably, since they have more disposable income and fewer stressors than people with children. But as HAART fails, and their jobs - with related benefits - become endangered, they too will start to wonder where the safety net went.

 Surely, they say, someone has been doing something.

And in the meantime? Names reporting for the infected (with true govenrment-level privacy). Databases and incarcerations and all the things that Rep. William Dannemeyer salivated so strongly for in the mid 80s.

And as HIV becomes declassified as a terminal illness, it becomes more and more difficult for the people living with it to qualify for and maintain the help they need.

But its already happening, isn't it? For every fraud that comes along pretending to have HIV, there are a dozen people who are really sick who don't have the strength to fight for benefits or support. For every incarceration of a "horrible bitch" who intentionally (maybe) infects someone, there will be three people destrpyed by vindictive ex-partners or spouses.*

And we are letting it happen. More than that, we push aside good people who are trying to help stop it.

The pot is steaming, my fellow froggies.

But don't listen to me. I'm being a downer.




* and that isn't just my opinion:

“One can easily foresee a spate of 'shakedown' or vengeance lawsuits brought by plaintiffs whose motivation is not so much to discover how they contracted HIV as to force lucrative settlements or embarrass a former sexual partner by exposing that persons sexual history in the guise of obtaining relevant discovery,” (Dissenting Supreme Court Judge Carlos) Moreno wrote.
"Many people, especially in the gay community, turn to oral sex as a safer alternative in the age of AIDS. And with HIV rates rising, people need to remember that oral sex is safer sex. It's a reasonable alternative."

-Kimberly Page-Shafer, PhD, MPH

Welcome Thread

Offline jack

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  • Posts: 1,578
  • fomerly the loser known as Jake
Re: I give up! Jonathan and others, this is shocking!
« Reply #8 on: July 06, 2006, 03:17:53 PM »
sure is comforting to know that hiv is manageable.

Offline Cliff

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  • Posts: 2,645
Re: I give up! Jonathan and others, this is shocking!
« Reply #9 on: July 06, 2006, 03:40:13 PM »
Quote
Self Management and the Chronic Care Model
I actually think that term might be appropriate and actually prefer it to calling HIV a terminal disease.  To me terminal disease is reserved for diseases where you are almost certain to die from the disease within a very short period of time, (e.g., an inoperable brain tumor that the doctors estimate will kill the patient in 6-9 months).

Healthcare should be about empowering patients to be active in their treatment.  HIV treatment encompasses so many facets including case management, care coordination across multiple doctors/specialists, ensuring continued access to quality (and more importantly competent) healthcare and most importantly active patient participation in healthcare (read doctor visits every 3 months).  And these factors last for as long as the patient is alive.  To me that is the very definition a chronic illness.

Of course there are varying levels of diseases that may qualify as a chronic illness, but for me its not about comparing these diseases.  It's about ensuring everyone with HIV has access to life-long, uninterrupted quality healthcare.  If changing to model of treatment from one of acute to one that encourages proper case management, coordination of services/care and access to quality healthcare then so be it.  At the end of the day, it's not the term that I care about, it's the real live healthcare that I receive that is much more important.

Offline Oceanbeach

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  • Posts: 3,565
Re: I give up! Jonathan and others, this is shocking!
« Reply #10 on: July 06, 2006, 04:18:33 PM »
Dear Moffie,

When I wrote www.Commission-on-AIDS.org, I thought it may make a difference.  I expected support from the same county officials who reviewed each and every page and responded with "awesome", "great work", "powerhouse" and on and on.  When I post a flyer in a county building, it is removed within an hour by an employee.  When I put letters and flyers out in the ASO's, they disapear as fast.

When I send "letters to the editor" to "LA VOZ" "California's Premier Bilingual newspaper,"  they expect to be paid because the Department of Education (a non-profit) pays them $7,000.00 per month.  Several others simply don't run the articles because "HIV is not news."  HIV IS news on October 15th, Latino HIV Education Day, December 1, World AIDS Day and of course on the "25th anniversary" of AIDS, we all got calls from TV and print media, I am not that impressed but, I did get front page and was on the AIDS 25 Years TV special.  As an activist, I have to take every available opportunity to get out in the public eye, no matter how shallow the reasons of the media may be.

What really pisses me off is this.  My web site has been online since December 1, 2005 and during all of these months, the county employees, who are paid to provide care to us have only logged in to the site 9 times (total).  My Case Manager said he has not read the site yet.  The Clinical Case Manager from the Center for HIV Prevention and Care said, "What web site? publicly.

Last January, I was part of the "Re-Entry Task Force", a sub-committee of the Sonoma County Commission on AIDS which was developed by a small handful of people actually living with the disease to help others.  It has taken me 4 months to get the COA to make this organization a non-funded service category.  Now, there is a possible $648,000.00 grant to develop and run this committee (through the NIH and Sonoma State University), not the county, they (ASO's) are all trying to become involved
and make this program part of their services.

This brings another question...  How many client/patients has Face to Face taken to self-sufficiency in their history of providing services to people living with HIV?  That answer is NOT EVEN ONE.  HIV provides jobs and rarely are those job positions filled by persons actually living with the disease.  Face to Face just released their own site, 6 months behind schedule.  They rented a resort, provided 150 gift bags for guests and a catered dinner for 150 people.  Only 30 showed up, the site was paid for by a grant from the State Department of Health, Office of AIDS, they hired an out of county agency and spent every dime.  They had 10 viewers on the same week mine has 1733 viewers.  I had to sit through the presentation at the November and again in the June Commission on AIDS meetings.  When another Commissioner complemented them on their hard work, I had to say, they hired an over priced agency and ignored local talent who have the skills and AIDS.

Being part of this years Funding Allocation Working Group (FAWG) is rather interesting.  WE are not allowed to discuss reducing administrative costs.  That is hallowed ground, we can only reduce or cut services to people living with HIV/AIDS.

I don't give up, I don't give in, no matter how hard it rains or how cold it is getting, I just keep on singin.  Have the best day
Michael



Offline Moffie65

  • Member
  • Posts: 1,755
  • Living POZ since 1983
Re: I give up! Jonathan and others, this is shocking!
« Reply #11 on: July 06, 2006, 06:13:35 PM »
I actually think that term might be appropriate and actually prefer it to calling HIV a terminal disease.  To me terminal disease is reserved for diseases where you are almost certain to die from the disease within a very short period of time, (e.g., an inoperable brain tumor that the doctors estimate will kill the patient in 6-9 months).  Please remember Cliff, this disease is still " Terminal " when you subtract all the programs that are now under constant, daily attacks by the current administration.

Healthcare should be about empowering patients to be active in their treatment.  HIV treatment encompasses so many facets including case management, care coordination across multiple doctors/specialists, ensuring continued access to quality (and more importantly competent) healthcare and most importantly active patient participation in healthcare (read doctor visits every 3 months).  And these factors last for as long as the patient is alive.  To me that is the very definition a chronic illness.  Again, assuming everything remains constant as it was in 1992, when Ryan White was first nationally instituted.  Unfortunately this is not true even now.

  If changing to model of treatment from one of acute to one that encourages proper case management, coordination of services/care and access to quality healthcare then so be it.  At the end of the day, it's not the term that I care about, it's the real live healthcare that I receive that is much more important.



Actually Cliff, I agree wholeheartedly with your view, and your opinion.  Surprised?  You shouldn't be if you have followed my views in the past.  I really do think that in a perfect world, this view is not only valid, but should be aspired to.  Unfortunately, things are already falling into the toilet, and people are already dying, due to the inadequecies of the current system, which is childs' play comparred to the profeciency needed to adopt the CCM model.  Cliff, if all the things you state here, are things that you want and need to view HIV differently, I recommend that you never get to a place where you need "U.S. Public Assistance" and secondly, I would recommend that you stay overseas until all this nonsense shakes out.

The truth is, the system is crumbling, and without private insurance, PLWHA are already not being served to the full extent of the law at all.  Many are dying because of what Jonathan and Michael have stated, and that is "the system is paramount, and the Administrative costs are now 'sacred' and not to be tampered with".  I too am on the Allocations Committee, and when I threatened to advise and push for a cut in Administrative costs, I was almost arrested.  Funny thing, if you rant long enough, I was able to get it reduced by $20,000.00.  Not a fortune, but a start.

In Love and Thanks for intelligent people, like you guys!  ;)
The Bible contains 6 admonishments to homosexuals,
and 362 to heterosexuals.
This doesn't mean that God doesn't love heterosexuals,
It's just that they need more supervision.
Lynn Lavne

Offline Andy Velez

  • Global Moderator
  • Member
  • Posts: 23,856
Re: I give up! Jonathan and others, this is shocking!
« Reply #12 on: July 06, 2006, 07:18:01 PM »
Dear All,

This is addressed to all but I would really have preferred to write it to each individually because I have a sense of knowing you and this is such an important subject and I think of this as a personal exchange between us.

First all, I have to try and stay calm and not go raving when I hear the words "chronic and manageable disease" joined to the term "HIV/AIDS." I'm trying to think if I ever hear anyone who's HIV+ make that particular connection. I don't think so, and with good reason. It is a deadly disease and anyone who thinks otherwise has different information than I do. I wish with all my heart I could believe otherwise. All we have are the tools to keep more people healthier for longer periods of time. But we know that water is always creeping up and eroding away the dam in one way or another.

That reality combined with the fact that really and truly the overwhelming majority of this country has never given a rat's ass about people with HIV/AIDS and/or is so ignorant and terrified of the subject that a true committment has never been made to halt infections in a realistic way nor to insure that everyone who needs medical and other care has it. Sure we have more benefits and help than in 1987. But look at how much political talk either is just blarney about money for HIV/AIDS and/or still is limplicitly HIV phobic. What has always been needed is a committment to a domestic equivalent of the Marshall Plan we created to help Europe out after World War II.

Make no mistake about it. The general public is afraid of this disease and of the people who are living with it. Those with HIV are somewhere on the stigma scale above child molesters but not above many others. Denial is a huge factor in dealing with this epidemic. HIV/AIDS in prisons is not a problem. People don't have sex there and they don't use drugs, right? And all we have to do is to tell hormone-crazed teenagers to ride bicycles and sing psalms and just say no and they will stop having sex, unprotected or otherwise, right? And therefore anyone who goes ahead and gets infected is like G W Bush, Sr. opined about those with HIV during his reign, words to this effect, "Well, of course when a friend has an accident because they didn't wear seat belt we still feel sorry for them." So in other words it's the fault of the person who got HIV.

Look at what gets the attention of Americans: "Reality tv." Paris Hilton. Laws against gay marriage. An amendment against flag burning. Michael Jackson's child abuse case or the latest variation on celebrity scandal. Steroids in baseball. Gas prices. 

Depending on who is counting, more millions have already died in the epidemic than in all of World War II. And another 25 million are infected and No, NO, NO! this is not a chronically manageable disease.  The only ones who will say that are fools, those who are profiting from the epidemic financially in one way or another and those who simply don't know enough to realize how stupid and inhumane that position is.

Generally I would say I am an optimistic person. And I do find that throughout history the general untidiness inherent in the human personality has enabled people to endure through many terrible times. That gives me hope sometimes. But it also sure is discouraging to live in this epidemic. What has encouraged me is the magnificence and the courage I have witnessed and continue to see evidence of, including in these pages. Often in the face of terrible, terrible challenges.

Jonathan, when you refer to the diminished level of activism I can only say that there were never a huge number of us. In the late 1980s and early 1990s, some of the ugliest responses to we activists came from within the gay community, people who screamed at us that we were a disgrace to our community (no kidding -- that happened in Gracie Mansion here in NYC when a group of us demanded of Saint Giuliani about when he was going to speak about HIV/AIDS in our ciity, the epicenter of the US epidemic). We were always a minority. For a while we were the flavor of the months or so in the media because we were bold and unapologetic with our methods. How to turn that around now? A lotta work. A LOTTA HARD WORK.


I'm glad B99 spoke up here and offered a more optimistic consideraton, even though I disagree with it completely and I see it as terribly naive. But I do get a sense of caring from his remarks and that's the beginning of something.

But nothing will get better with regard to HIV/AIDS unless people fight for it. That was true of the Civil Rights movement, the Women's Movement and it will always be true when those who are without are demanding a shift from those who have power. Power is virtually never transferred voluntarily, including in private life in couples.

OK, so I have ranted here a bit. But goddamnit, to the very bottom of my soul I know that we have to non-violently fight to correct the injustices we are faced with in this epidemic and elsewhere. And we cannot depend on others to do it. We each have a role to play in making things better. I pray for us all to find the strength and the willingness to do our part. 

In solidarity with and deep affection for all here,
« Last Edit: July 06, 2006, 09:10:57 PM by Andy Velez »
Andy Velez

Offline zephyr

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Re: I give up! Jonathan and others, this is shocking!
« Reply #13 on: July 06, 2006, 08:39:48 PM »
Hello, Gentlemen....

This is one of the most poignant threads I've read in my 10 month tenure here on AM.

I accept the challange to do my part in being a VOICE, for all who cannot deliver their own.

I AM STRONG, I AM WILLING, I AM HERE.

Thanks to each and everyone one of you.

In Love,
Zephyr :-*
"It is character that communicates most eloquently."

Offline gerry

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Re: I give up! Jonathan and others, this is shocking!
« Reply #14 on: July 06, 2006, 10:12:06 PM »
A chronic care model for HIV is not necessarily a bad thing.  It is not an attempt trivialize HIV/AIDS as an illness; it is an attempt to standardize HIV care in various settings.  This is actually in place now in many urban centers with specialized HIV clinics and the hope is to expand this to other settings as well.  This is from the website:

The six elements of the CCM represent broad concepts that may be summarized as follows:

   1. Community—resources and policies refers to the need to mobilize community resources to meet patient needs. This principle also reflects the importance of encouraging patients to participate in effective community programs, the need for health care organizations to form partnerships with community-based organizations, and the role of advocacy in improving patient care.

   2. Health system—organization of health care prioritizes creation of organizations and systems that promote safe, high-quality care. Providers should work toward comprehensive system change, provide incentives to improve quality of care, and develop systems for coordinating care across organizations. Support from all organizational levels is required.

   3. Self-management support encompasses activities that empower and prepare patients to manage their health care. This component reflects the patient's central role in care and treatment and stresses use of self-management support strategies, including assessment, goal setting, action planning, problem solving, and follow-up.

   4. Delivery system design should ensure delivery of effective and efficient clinical care and self-management support. The system should promote definition of roles among the clinical care team, a structure for communication and service delivery between the team members and clients, and regular follow-up.

   5. Decision support increases the capacity of the clinical team and promotes care that is consistent with scientific evidence and patient preferences. Clinical practice should reflect treatment guidelines, which in turn should be shared and discussed with patients. Decision support should use proven methods of provider education and integrate specialist expertise and primary care.

   6. Clinical information systems should use data to facilitate effective care. Data systems monitor the performance of the care system and provide reminders for both providers and patients. They also facilitate case planning and provide information necessary for coordinating care among patients and their providers.


The model also recognizes several characteristics of HIV that are unique to this illness and must be taken into consideration.  Again from the website:

Several features make management of HIV/AIDS different from other chronic illnesses.

    * Adherence to antiretroviral regimens is complex and often poor due to extraordinarily rigid adherence requirements, dietary guidelines, and side effects.

    * Daily self-monitoring of HIV/AIDS is difficult due to the nature of the disease itself. Unlike diabetes, no self-administered HIV laboratory tests exist that can give patients immediate feedback on the effectiveness of self-care.

    * HIV/AIDS stigma persists, and the discrimination and social ostracism that many infected people experience is particularly severe. In 1999, almost 50 percent of people polled felt that PLWHA were responsible for contracting the disease. Disclosure of HIV status has exposed people to violence, loss of jobs and housing, and even death.

    * In addition, chronic illnesses bear some stigma. The degree of stigma largely pivots on factors such as whether the person is perceived as being responsible for acquiring the disease and whether the disease is communicable.

These factors must be considered when building models of care for PLWHA.


The challenge is how to make these standards uniformly achievable across the board to all persons living with HIV/AIDS in the US.  And that's where the dilemma lies when there is an obvious funding shortfall to be able to deliver such standard of care, particularly for those who have no access to either government or company-sponsored health care.  In short, setting up standards is not the issue; making it a reality for the majority of people affected is.



Offline jkinatl2

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Re: I give up! Jonathan and others, this is shocking!
« Reply #15 on: July 06, 2006, 10:21:27 PM »
<<In short, setting up standards is not the issue; making it a reality for the majority of people affected is.>>

Which is why it remains in the realm of fantasy.

It assumes that resources, many of whom have for years been underfunded and merged with other models, will remain in place. It assumes that community support and grassroots activism will continue unabated. It assumes that funding will not be flattened (which equates to diminished) at the rate that current trends indicate. It assumes that the long-term impact of HAART will remain stable (to date, it has not). And it assumes that the infection rate will flatten as safer sex education and HIv testing combine to minimize the influx of new patients who will require these services. As you know, none of this has happened. None of this is even CLOSE to happening. And none of this is going to happen with the current paradigm insofar as HIV prevention, education, or patient support is concerned.

Gerry, I agree that in some utopian world, HIV would be a manageable condition. I could not disagree with you more regarding the world in which we love today, and the one likely to be in place when I wake up tomorrow, or a year from now.

You mention these as challenges? Sir, going from earth to orbit is a challenge. The caveats that would have to be in place to reclassify HIV  are nothing short of a global shift in paradigm, starting with the ultra-conservative USA.

But shhh. Lets let the newly diagnosed bask in the glow of the media proclamations. Let them find out what happens when those halcyon days of naive trust in a terminally corrupt system catch up with them.

I've seen too much to believe that this pandemic is close to over. And if the writing on the wall is not clear to others, well, maybe it will be clear enough to those of us who have the strength to fight. Assuming we aren't embarrassing the rest of the community too much in the process.

"Many people, especially in the gay community, turn to oral sex as a safer alternative in the age of AIDS. And with HIV rates rising, people need to remember that oral sex is safer sex. It's a reasonable alternative."

-Kimberly Page-Shafer, PhD, MPH

Welcome Thread

Offline AlanBama

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Re: I give up! Jonathan and others, this is shocking!
« Reply #16 on: July 06, 2006, 10:31:01 PM »
Jonathan, this is why I love you so much !

We share the same view (some might name it cynical), but as someone who is dependent on 'the system' , I'm on the same side of the railroad tracks that you are, and the view is not too pretty from here most of the time. 

I think you are simply stating the reality of life with AIDS for so many of us. (and I do love the way you state it!)

Zephie, my dear, Thank God for people like you who are willing (and able) to pick up the torch and run with it.
« Last Edit: July 06, 2006, 10:32:45 PM by AlanBama »
"Remember my sentimental friend that a heart is not judged by how much you love, but by how much you are loved by others." - The Wizard of Oz

Offline Life

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Re: I give up! Jonathan and others, this is shocking!
« Reply #17 on: July 06, 2006, 10:37:14 PM »
Am I mistaken, but have I just read a thread of utter hopelessness?  My ADD does not allow me to concentrate that long... :'(

Offline jkinatl2

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Re: I give up! Jonathan and others, this is shocking!
« Reply #18 on: July 06, 2006, 10:51:55 PM »
eric, please reread.
"Many people, especially in the gay community, turn to oral sex as a safer alternative in the age of AIDS. And with HIV rates rising, people need to remember that oral sex is safer sex. It's a reasonable alternative."

-Kimberly Page-Shafer, PhD, MPH

Welcome Thread

Offline allopathicholistic

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Re: I give up! Jonathan and others, this is shocking!
« Reply #19 on: July 06, 2006, 11:04:57 PM »
No Eric, not hopelessness. The message is more like "This is a war." Activists have known this for years and thankfully they're opening my newbie eyes and many other eyes   

Last month I would have said "I'll be healthy as a horse and back to normal, and soon, thanks to HAART. The hospital people are so nice. Everything is 100% covered by Medicaid. I'm kicking HIV's ass. Medical science is kicking HIV's ass. What's the problem?"
 
I could continue with this sunny mindset but what I'm learning is that eventually I'll have a rude awakening, blindsided by ugly reality



Offline Life

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Re: I give up! Jonathan and others, this is shocking!
« Reply #20 on: July 06, 2006, 11:45:43 PM »
Ill try again with a Paxil/Zanex Redbull mixer..  I am just in the dumps right now... ???

Offline Life

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Re: I give up! Jonathan and others, this is shocking!
« Reply #21 on: July 07, 2006, 12:30:32 AM »
Two floors above me are Colon Powel, Mr & Mrs. Clinton and I just wana go up there and shake them and ask what the "fuck is going on!" Whats going on in America?  Why!!!!!!!!! Why!!!!!!  Why!!!!!!  I am just tired of this and I am only beginning and I know its all down hill from here...   Nice and refreshing thoughts for me to live by... :'(

"One day the age of AIDS will be over.  In the history books we will be defined and described on what we did, or how we did not respond to it.." - Bono



I just need to be quiet now for awhile..
« Last Edit: July 07, 2006, 12:51:15 AM by Eric »

Offline gerry

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Re: I give up! Jonathan and others, this is shocking!
« Reply #22 on: July 07, 2006, 01:03:08 AM »
Believe it or not, JK, we are probably both arguing for the same thing here: better access to health care for all (at least that aspect of this multifaceted discussion).  I am not under the illusion that health care in the US is ideal.  Far from it, in fact.  I am a believer in universal health care.  If I had believed in the former, there would not be any need for me to work for a safety net clinic.  So my world is not as utopian as you put it; far from it in fact as I myself have seen a lot of unnecessary suffering happen in the richest nation on earth.  It's one thing to set standards of care for a particular illness.  It's entirely different to deliver that standard to people who do not have the means to pay for it.  In my less than utopian world where more often than not I cannot rely on government programs to bail people out, I have to make do with whatever resources I can get my hands on, including sometimes getting into an unholy alliance with drug companies to ask for free drugs or convincing the med reps for more drug samples.  Hey, a lifeline is a lifeline no matter how you put it.  In the long run, it does not matter what chronic illness one has.  Poverty especially in the setting of disability marginalizes people, and inability to access proper care can be potentially fatal irrespective of what chronic disease it might be.  And I understand this probably more than what you might think. 
« Last Edit: July 07, 2006, 02:01:02 AM by gerry »

Online GSOgymrat

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Re: I give up! Jonathan and others, this is shocking!
« Reply #23 on: July 07, 2006, 01:12:48 AM »
From what I am reading the objections to HIV being categorized as a managable illness are more political than clinical. I see HIV infection and diabetes as being generally in the same category. Both are incurable, both are potentially fatal even with medication, both are not manageble if you don't have access to medication, both can lead to serious complications such as blindness. One exception is that HIV can be prevented and diabetes often cannot be.

Offline sweetasmeli

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Re: I give up! Jonathan and others, this is shocking!
« Reply #24 on: July 07, 2006, 04:44:45 AM »
I have to admit I'm confused.
When I was first diagnosed (Dec 1999) my consultant at the time (one of the best in the UK apparently with an excellent reputation, Ann knows him...) told me, and I quote:

"Hiv is no longer thought of as a terminal disease. It is now classed as a chronic condition."

It was actually the one sentence that has stayed with me all this time and kept my hope alive.

Was he lying or misinformed or did I fall asleep and dream that he said that?

I am currently looking into travel insurance and have no idea how to answer the 3 million euro question:
Have you been diagnosed with a terminal illness?

A somewhat befuddled Melia ???
/\___/\       /\__/\
(=' . '=)    (=' . '=)
(,,,_ ,,,)/   (,,,_ ,,,)/ Cats rule!

The difference between cats and dogs is that dogs come when called, whereas cats take a message and get back to you.

Yeia kai hara (health and happiness) to everyone!

Offline Cliff

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Re: I give up! Jonathan and others, this is shocking!
« Reply #25 on: July 07, 2006, 05:01:24 AM »
Quote
Actually Cliff, I agree wholeheartedly with your view, and your opinion.  Surprised?  You shouldn't be if you have followed my views in the past.  I really do think that in a perfect world, this view is not only valid, but should be aspired to.  Unfortunately, things are already falling into the toilet, and people are already dying, due to the inadequecies of the current system, which is childs' play comparred to the profeciency needed to adopt the CCM model.  Cliff, if all the things you state here, are things that you want and need to view HIV differently, I recommend that you never get to a place where you need "U.S. Public Assistance" and secondly, I would recommend that you stay overseas until all this nonsense shakes out.

Tim,

I think I see the issue here.  In terms of funding of HIV care and services, I view that as a completely separate issue from whether or not HIV should be classified as terminal or chronic.  You do not.  For you, the two are intertwined.  And I can understand that point of view.

I honestly think we are all on the same page here.  Sure we all have varying differences of experiences with this disease and of course that has impacted our views.  But at the end of the day, we all want the same things, and that is a better quality of life, (in terms of both health care and living conditions), for those living with this disease.

I think what tends to turn people off from this discussion is the need to differentiate ourselves, (newly positive vs long term positive, those living on public assistance and those who do not, those on disability and those who are not, etc..).  We should focus on what draws us closer than on what separates us.

Thanks for bringing this to our attention.  This is an important discussion, that sadly, I suspect we will continue to have in the future.

Cliff

Offline Cliff

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Re: I give up! Jonathan and others, this is shocking!
« Reply #26 on: July 07, 2006, 05:04:02 AM »
I am currently looking into travel insurance and have no idea how to answer the 3 million euro question:
Have you been diagnosed with a terminal illness?

A somewhat befuddled Melia ???
In terms of completing your insurance form, I would answer no.  If your doctor has specifically told you HIV is not terminal, then you should use that in determing how to complete that form.  Although, I don't recall being asked that question when I signed up for travel insurance (I have Endsleigh).  You may also want to consider other options.

Offline bobik

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Re: I give up! Jonathan and others, this is shocking!
« Reply #27 on: July 07, 2006, 06:41:38 AM »
Hello everyone,

The point is that by changing the status of HIV there is a reason the change the funding for healthcare in the USA. The problem is not the status of the disease. The problem is how the uSA organises its financial care for people who need it in order to survive. That is worth a fight.

But please, for God's sake, allow the people for who HIV is a chronic disease to believe in their chances to live for a long time. We need the optimism to survive.

When you have HIV and you are in bad health fight for your life.
When you have HIV and you feel it is a chronic disease and money might be a reason for letting it become a fatal disease again, fight for your life.
When these things are not an issue for you, fight for the life of others.

But let's not get involved in a discussion about wether HIV is fatal or not. For some of us it will be, for others maybe it won't. If we are going to fight each other on wether HIV is a fatal disease or not we start thinking in the same silly and dangerous systems.

Coen
Coen Honig at Facebook

Online GSOgymrat

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Re: I give up! Jonathan and others, this is shocking!
« Reply #28 on: July 07, 2006, 07:16:18 AM »
I'm not familiar with the way government funding works and I don't understand how classifying HIV as a managable condition would reduce funding. It seems to me it would emphasize how important it is for people with HIV to have access to medications and medical treatment. With it people will live and without it people will die. I would think it could be argued that if HIV is fatal with medications than why bother paying for them.
« Last Edit: July 07, 2006, 07:18:06 AM by GSOgymrat »

Offline J.R.E.

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Re: I give up! Jonathan and others, this is shocking!
« Reply #29 on: July 07, 2006, 07:25:15 AM »
Hello Tim,

 I was going to respond to this yesterday , but I was not having one of those " manageable days"  The last couple days have been pretty miserable. PN, doing a number on me this week.

Ray
Current Meds ; Viramune, Epzicom, 40mg of simvastatin, 12.5mg 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


 In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started my first  HAART regimen  on October 24th,03.

 As of DEC 9th, 2013,  t-cells are at 437 Viral load  <40 .

 Current % is at 16% (L)

  
 62 years young.

Offline alisenjafi

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Re: I give up! Jonathan and others, this is shocking!
« Reply #30 on: July 07, 2006, 07:28:41 AM »
This is not shocking- this is America! What did you think was behind Ronald Reagan' thinking when he emptied out  all the psych hospitals and put them all on the street. America has a notion of better living through chemistry.

Now that you can better manage your life with  Sustiva how can you expect to be labled disabled! By the way can I sue the AIDS drugs ads, I am on Sustiva and Truvada and I don't have a six pack, body or looks like those dudes ( Tim Horn what is your secret!). Once again America is buying the hype. Then again I am in a country that thinks tomatoes are vegtables.
Cheers
Johnny
« Last Edit: July 07, 2006, 07:43:48 AM by alisenjafi »
"You shut your mouth
how can you say
I go about things the wrong way
I am human and I need to be loved
just like everybody else does"
The Smiths

Offline Moffie65

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Re: I give up! Jonathan and others, this is shocking!
« Reply #31 on: July 07, 2006, 01:58:45 PM »
Thanks for entering this discussion, all of you.  I want to keep this going and see what shakes out.  Maybe some of you newly infected could chime in here and let us know what you think of this news, or whether or not you understand what we are say here.

I think it is important for the very future of HIV care, for all of us to be of the same understanding, even though the "Manageable Disease" discussion will continue until all of us old timers are dead and gone.  We cannot escape the dearth of the horror that lives in our memories and brains, and that is one of the motivating factors in our continuing struggle to keep this disease in focus, and keep it in the forefront of everything medical and scientific.  If we let the pressure off, we are doomed.

Thanks for all your contributions, this is a very enlightening thread.

In Love, and Thanks.
The Bible contains 6 admonishments to homosexuals,
and 362 to heterosexuals.
This doesn't mean that God doesn't love heterosexuals,
It's just that they need more supervision.
Lynn Lavne

Offline The Canuck

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Re: I give up! Jonathan and others, this is shocking!
« Reply #32 on: July 07, 2006, 02:08:20 PM »
Quote
and I don't understand how classifying HIV as a managable condition would reduce funding.

Now that people with HIV are living '' longer '' when compared to the early years. It must be very practical for them to put it into the '' chronic & manageable '' illness category. They want to reduce funding and must find a justification somewhere, so chronic & manageable shall do the tricks in their minds.  :'(

Regards,

The Canuck

Offline Terry

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Re: I give up! Jonathan and others, this is shocking!
« Reply #33 on: July 07, 2006, 02:41:21 PM »
"Manageable Disease"???

Yes until your body can no longer tolerate the poisons that make it manageable. Or until your body is so deformed by years of taking these drugs that have only thus far shown adverse effects. There’s a reason my picture is not in that avatar. Years of managing AIDS is why!

Manageable until you lose your health coverage or like what happened to me two years ago, that the premiums go up so high you can no longer afford the monthly premium increases. my payments tripled in one month to over my total monthly income so I had to choose a cheaper coverage then came along section D. (Those of you that are working and doing well right now, beware, for the clock is ticking. I to was where you are at now.)

By the government declaring HIV/AIDS to be a “manageable disease” it’s a red flag for the beginning of the end of ADAP, Ryan White and any kind of research for a cure. I feel this will come in the very near future. It is also giving cart blanche to the big pharmaceutical companies to back off on looking for or discovering a cure for HIV/AIDS. and it’s a go ahead for them to make Billions of dollars in profits off of the ills of a small segment of society. A segment that they have absolutely no use for other than political reasons. I’m talking about us.

Great subject Tim. I need to go manage what this subject just did to my bowels. (crap)

Terry


PS. I just wanted to add, that for years I did very well on the medications that were available at the time. Some people I knew back then took the same meds and died. Some took them and were always sick or bed ridden. I never lost empathy for those that did not do well on their meds. But lately I’ve noticed some people (In the forum) on other threads making fun of those that are ill and quite frankly they are dying (Dennis) are you listening to me? It’s not wise to laugh at or make Lite of someone else's misery. What goes around comes around!


« Last Edit: July 07, 2006, 02:57:14 PM by Terry »

Offline jack

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Re: I give up! Jonathan and others, this is shocking!
« Reply #34 on: July 07, 2006, 02:50:09 PM »
terry, I dont think its intentional or by design that HIV is now being called manageable. I think "manageable" is an easy place to put us. It does enable people to forget about us. There is also no need to waste compassion on a disease that is now manageable. Its not a conscious move,its done on everything.
I am managing my hiv today. It sure would be a lot more manageable with about 5 million in the bank.

Offline Dachshund

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Re: I give up! Jonathan and others, this is shocking!
« Reply #35 on: July 07, 2006, 02:53:36 PM »
Tim thank you for being a living historian in the age of AIDS. I appreciate and value your insight, and can relate on so many levels. As a fiftyfour year old gay man I have been on this horrific train ride from the beginning. Sometimes you get so weary you just want to get off.

I think we might be short changing the newly infected in thinking they don't get it. They are like many of us, we didn't want to "get" it until illness forced our hand. We did not want to acknowledge our own mortality even as we watched our "family" sicken and die. I am too young, too vital to die. I am managing this disease with denial, drugs or alcohol...as long as I was not sick it was manageable, until the bottom fell out. We are lucky we have managed to hang on. That's all management is...not dieing, until the moment we find a cure.

Continue the drumbeat my friend...you must. I truly believe you are only one person away from the person who is going to say "I'm mad as hell and I am not going to take it anymore"...and we will all thank you for that.

Sincerely,
Hal

Offline Life

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Re: I give up! Jonathan and others, this is shocking!
« Reply #36 on: July 07, 2006, 08:09:24 PM »
Newly diagnosed...  10 months...  Feel like I have weeks before everything falls apart....  I am depressed about this topic and frankly if it gets to much for me, I will stop it, and me, in my own tracks....  I have no problems with this and I am sure as hell you all do not either....

This is how I see "it" and being around and being IN "IT", ACTIVE IN "IT". There are absolutely no guarantees. You won't find them in searching for them. They do not exist in your HIV Doc they do not exist in these forums THEY DO NOT EXIST! There are no guarantees on your life expectancy. There is no guarantee on your quality of life. All "they" can tell you is that you have a "chance" (dismall at best!)... THERE ARE NO GUARANTEES IN LIFE, WHY ARE YOU WANTING ONE ? WHY DO WE GO ROUND AND ROUND ON THE FACT THAT THIS IS GOING TO KILL US????  SO WHAT!!!!!!!!!!!!!!!!!

TO ME NOW - "HIV/AIDS IS A CHRONIC, TERMINAL, DEADLY DISEASE THAT WILL EVENTUALLY KILL ME"


Signed Pissed off and Tired of contradiction and broken promises...   "FUCK IT, FUCK IT ALL"
« Last Edit: July 08, 2006, 01:27:53 AM by Eric »

Offline Biggums

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Re: I give up! Jonathan and others, this is shocking!
« Reply #37 on: July 08, 2006, 10:32:32 AM »
Moffie my buddy, Jonathan and Sonoma,

Thanks for the post.  It has really caused me to think hard about this whole thing.  One conclusion that I have had to come to is that in some areas I am just selfish and lazy.  I have jumped through all the hoops to get Ryan White funding for my honey and his case management and docs and dentist are all in place.  So I have thought I can just sit back and rest now and if there is some threat to the system, others will take care of saving it for us.  Damn, what a selfish thing to think.  And I am ashamed of myself.

So my question is............what do I do guys?  How do I fight?
44 year old gay man .......just broke up with the only man I've ever really loved.

You can love completely without complete understanding.

Offline BodyBoarder32129

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Re: I give up! Jonathan and others, this is shocking!
« Reply #38 on: July 08, 2006, 10:59:33 AM »
I think HIV is NOT a terminal illness!  Yes, people may die from it and people that have HIV may die from a heart attack. Just because you have HIV does not necessarly mean that you are going to die from it.  It definetly is a managable disease now a days and we should all feel lucky that it is.  The medications just keep getting better so who knows what the future holds...maybe not a cure...but maybe a medication that will extend your life 40 or 50 years...to the point where you die from old age and NOT HIV.

I also disagree with the person who stated that nobody cares about people with HIV and people are scared of people with HIV.  I TOTALLY DISAGREE....everybody that knows about my situation from family to friends, to  aquaintences has not turned one eye due to our situation.  I know a handful of neg people who are will to date poz people and I think that is totally awesome!

Offline HIVworker

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Re: I give up! Jonathan and others, this is shocking!
« Reply #39 on: July 08, 2006, 02:52:43 PM »
I have read this thread with great interest. From what I can gather it comes down to a personal definition of manageable. Some might feel that they can manage their HIV because they don't have bad side effects from the many drugs of HAART. They might be lucky and live somewhere that isn't populated with the narrow minded. They might have family that are educated about HIV and are not scared.

But in reading this thread, I began to wonder what we are looking for here? A one-size-fits all response to the notion that HIV is a chronic infection? I don't think the point by Moffie and others is that everyone is going to get AIDS and there is never any hope because if you read their posts they don't think that way. Just that the classification of HIV as a manageable disease is misleading at best.

Does the view that HIV is a difficult disease really have to force people to totally agree with the polar opposite notion that "HIV is a manageable disease"? I think that the outcome has improved, but the 'manageable' still comes at too much of a price it seems. An easy life? Are these people trying to reclassify HIV just looking at the statistics of people on HAART and not looking at the full picture? That of expensive medication, a scared general public, social avoidance?

Although the struggles of having HIV might have improved slightly since the 80s, the disease is far from easy to have and the same feelings from the general public exist today and are only a little less widespread.

I get the feeling, and please tell me I am wrong, that there is a concern that an attempt is being made to sweep HIV under the carpet. To produce one of those newsbites that allow the scared to relax a bit. "I read you can live with HIV you know Kathy, what's for dinner". That concerns me too. I just wonder who is making these decisions and how educated about HIV are they really?

Forgive the ramblings of a HIV negative member on your forum, I'm not making a point here but trying to see what you feel of my outlook on this topic. So that I can better understand.

R
« Last Edit: July 08, 2006, 03:09:32 PM by HIVworker »
NB. Any advice about HIV is given in addition to your own medical advice and not intended to replace it. You should never make clinical decisions based on what anyone says on the internet but rather check with your ID doctor first. Discussions from the internet are just that - Discussions. They may give you food for thought, but they should not direct you to do anything but fuel discussion.

Offline B99

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Re: I give up! Jonathan and others, this is shocking!
« Reply #40 on: July 08, 2006, 03:11:13 PM »
"I read you can live with HIV you know Kathy, what's for dinner". R

I would never advocate for any disease, condition to be swept under the rug.  There are many people, dealing with many diseases as deadly, if not more so, than HIV.  But allowing the general public to believe that one can live with HIV AND not necessarily progress to AIDS (which honestly is what most people are scared of AIDS and related OIs) is a good thing.  Living with HIV is not having AIDS, but for most people the terms are interchangeable.
Maybe if the word gets out that you can live with HIV and that is seperate, yet related, to developing AIDS, more people will feel like they can get tested. (And even if you develop AIDS there are still people LIVING with that condition)
A lot of people would rather not know because they are scared HIV will kill them.  HIV will kill them, if they don't get tested and get treatment.  What is stopping them from getting tested?  The FEAR that HIV is ABSOLUTELY TERMINAL.  Most people don't know that medical science has found ways/and are still finding ways to suppress the virus. 
The general public needs to know that HIV DOES NOT EQUAL DEATH. Late stage testing and not being treated for HIV is death.  If you know your status, you have a chance to live.  If you don't. YOU WILL DIE. Scare the public with that message, and people will start getting tested.

Offline HIVworker

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Re: I give up! Jonathan and others, this is shocking!
« Reply #41 on: July 08, 2006, 03:14:00 PM »
An interesting point. An alternate view is that the spreading apathy will make people not care about HIV despite the current struggle. Not give to charities, not raise money and awareness. Allow HIV to spread because, "I can get a shot to clear that up." Governments would continue to fund a disease that is manageable? I await other views.

R
NB. Any advice about HIV is given in addition to your own medical advice and not intended to replace it. You should never make clinical decisions based on what anyone says on the internet but rather check with your ID doctor first. Discussions from the internet are just that - Discussions. They may give you food for thought, but they should not direct you to do anything but fuel discussion.

Offline jkinatl2

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Re: I give up! Jonathan and others, this is shocking!
« Reply #42 on: July 08, 2006, 03:25:21 PM »
Sadly, when the general public and newly diagnosed are taught that HIV is not a terminal illness, the resources in place which make it passably manageable will dry up. It's already happening.

the phasing out of Ryan White, the nightmare of disability, ASOs shuttering their doors, abstinence-only sex ed, failure to provide condoms in schools and prisons. Fewer incentives for research.

All these things are connected to the notion that HIV has miraculously changed from a terminal illness to a manageable one. It is ONLY manageable thanks to these programs and services. It is only manageable for those who have insurance, or for those who are desperately poor and qualify for governmental assistance (the quality therof varying widely from area to area).

I disagree that the notion that HIV is a terminal illness causes fear, which stops peopel from testing. As a matter of fact, I feel the opposite. I think that apathy has set in, and the pharma companies have shown enough delightful photos of mountain climbing buff bois to give the impression that HIV is no big deal. That apathy extends to contributions and volunteerism, it extends to the simple act of voting.

I think that there seems to be a pretty clearly defined line here.  And the frustrating part from my perspective is that I've had this dicussion over and over again for the last ten years.  And one by one, people come back around, when the illness impacts THEM directly, or when they lose someone dear, or when they find themselves unemployable, or without a safety net. And they wish they had done something to prevent that from happening, when they had the physical strength to do so.

"Many people, especially in the gay community, turn to oral sex as a safer alternative in the age of AIDS. And with HIV rates rising, people need to remember that oral sex is safer sex. It's a reasonable alternative."

-Kimberly Page-Shafer, PhD, MPH

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Offline Dachshund

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Re: I give up! Jonathan and others, this is shocking!
« Reply #43 on: July 08, 2006, 04:13:15 PM »
There is a big difference between hope and reality. My day at the doctor's Friday offered a bit of both. My doctor wanted me to switch drugs...I was hoping it would become a reality, but the decision was out of my hands and even the doctor's hands...all that stood between my hope was ADAP making it a reality. The kid (early twenties) who came in with his mother was hoping to receive services that day, the reality, he didn't, and they both left crying. Looking around the room at patients misshapen with lipodystrophy I am hoping that fatigue and diarrhea continue to be my major side effects...the reality my new meds warn that lipodystrophy is a possible side effect. I was hoping the state mandated insurance (TennCare) would see me through...the reality, the entire program was cancelled and three hundred thousand people lost coverage. I am hoping the dime sized blip the MRI picked up on my scapula is a cyst...the reality, Ryan White will not cover surgery or a bone scan.

I hope everyday for all the things everyone else does...the reality, if things don't change in the United States... I hope I will be able to swallow hope to keep me alive.

Offline J.R.E.

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Re: I give up! Jonathan and others, this is shocking!
« Reply #44 on: July 08, 2006, 04:45:56 PM »
It is ONLY manageable thanks to these programs and services. It is only manageable for those who have insurance, or for those who are desperately poor and qualify for governmental assistance (the quality therof varying widely from area to area).




In the other forums, Cliff had started a thread a while back, regarding our biggest fears or concerns of living with HIV.

I completely agree with Jonathans comments (Above)

 I have been very fortunate these past three years, in knowing that I have insurance which is curently covering me.

My biggest fears, is losing that coverage, or not being able to maintain it, because of the possibility of losing my job. That is constantly on my mind ... I often wonder, when I am no longer able to work, what kind of spiral effect this will have on me. I have always considered myself somewhat stable, but losing my benefits and job, could certanly make me very unstable.


I have been at the bedsides of those that have fallen through the cracks...That couldn't get the medical attention, or the much needed support. I have watched them take their last breaths.

The cracks are getting much larger and wider, and unfortunately easier to fall into. We can not allow that to happen !


Ray
Current Meds ; Viramune, Epzicom, 40mg of simvastatin, 12.5mg 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


 In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started my first  HAART regimen  on October 24th,03.

 As of DEC 9th, 2013,  t-cells are at 437 Viral load  <40 .

 Current % is at 16% (L)

  
 62 years young.

Offline emeraldize

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Re: I give up! Jonathan and others, this is shocking!
« Reply #45 on: July 08, 2006, 06:08:27 PM »
Moffie asked to hear from some of those who are newly infected and what we think. This thread is important to me for a variety of reasons. I have noticed it is not uncommon for the new, myself included, to this site to include a cautionary phrase or two which are of the equivalent of "don't take this the wrong way OR please don't hurt me OR please, try to understand, I'm doing the best I can to phrase my thoughts, in a sincere attempt to learn, and even teach, without a shread of desire to inflame, incense, confuse, derail anyone else's efforts, topics, hopes or desires." Although I've opted many times not to contribute when I truly wanted to, perhaps this is the time and topic that is most important for me, to date. So, for a moment, envision a blue-eyed woman with short hair, a great sense of humor and a gentle voice is saying these things to you with an intensity that convinces you that Possibility is an ever-present word in my thinking and speaking. While I care about maintaining physical and mental health, spirituality, etc. just knowing there are those on this site; not on this site; in this country; not in this country; who are not getting their needs met, or, are, and the resources are under immediate threat---that alone is significantly more important to me than anything I can address on my own behalf without outsiders' help. While self-care is important, that I do it, enables me to move outward. I'll clarify.  Recent (Moffie) for me is nearing three years. August 20 is the anniversary date. And, those three years, while an incredible adjustment, have been three unmedicated years with numbers such that it appears I'm likely a long-term non-progressor. Yes, I'm participating in research studies that some of you are already aware of and some you're not--studies of the brain, drug studies requiring treatment naive folks, etc. I participate on my clinic's consumer advisory board. But frankly, in the ways that would count the most, (as I know there are no guarantees for me, this is just the point on the continuum where I sit right now), I'm not sure where to put any energy, how best to do it and with whom. I don't claim to know how best to help the home team and I am just as motivated to help the away teams! No matter when the virus came to light or no matter when this website came into existence, people will be walking, jumping, diving head first, stumbling, and hopefully not choking in this stream of HIV information, and sadly, at least for the foreseeable future, that will be so for some time to come. If those who know the inner workings of the systems best, the faillings of those or similar systems, the political issues, etc. would spend time e-formulating and strategizing, it would aid greatly in giving the willing and the deployable, such as me, our roles. I realize full well I may ultimately need the best case outcomes I would be fighting for. So, if for now, it is on behalf of others---I'm a follower of karmic effect. Even if it were never to come to pass that I require meds, it doesn't make anyone's status of need or tragedy, on this site or in the world at large, any less important to me. Because I am positive, I care, and I care deeply. I understand the fear, alienation, and on and on. I am admittedly, and happy to concede so, a student of this new setting and I am committed to making a difference. And, if I can get the guidance, which I think exists within the individual and surely, the collective minds connected to this site, then I suspect I can actually help make a difference. While I'm not out, not yet that is, I made a commitment to a friend last year during a Landmark Education seminar. That commitment was to "change the world regarding HIV." Now, I'm enlisting you. Help me, please. What are some of the best ways I can contribute? And, I mean best. Not fundraising walks, I've done them and will continue to, not art fundraisers, have given my art and will continue to. What one or two efforts are so sorely lacking in support that they are worth pooling all of the available energy I and others have to give? I will look for your replies. Love, Em

 


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