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HIV/AIDS Blog Central

The Death of an HIV/AIDS Organization

By Terri Wilder, M.S.W.

September 25, 2008

Time: 11:15 a.m.
Place: Georgia

My heart is breaking. It is not breaking over a guy rejecting me or not paying attention to me, but from the end of something amazing.

I just found out that the HIV/AIDS organization I used to work for is closing. Although I have not worked at this organization in over seven years, some of the happiest days of my life were spent at that place and I'm feeling a little sad about its demise. I had such joy working for that agency. Working with and for people with HIV was a privilege and I felt grateful to have had that opportunity.

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I started out working in the agency's outreach program, was later transferred to special events, and then ended up managing a two-day education and empowerment program for people newly diagnosed with HIV. I was proud to be part of this incredible program -- it saved people's lives and it was inspiring to watch it happen right before my eyes. The program was founded by a person living with HIV, and it maintained its reputation as a quality peer-based program through the hard work and dedication of hundreds of volunteers living with and affected by HIV.

I am grieving over this news for lots of reasons. I am grieving over the end of something incredible, the impact that it will have on people living with HIV and the loss it represents in the form of unrealized dreams. I am pissed off because I think this downward spiral could have been prevented. I am convinced that the agency is closing because of neglect and not for reasons reported in the local press.

One of my good friend, who worked for the agency, provided an interesting analogy to the agency closing. He told me that it felt like the agency had been infected with a virus a couple of years ago and that much like HIV, this virus had beaten up the agency's immune system. The virus had been invited into the agency. Once it entered the agency it began to slowly destroy it. In a two-year period, this virus ostracized other helper cells, neglected the functioning of healthy cells and did not pursue healthy remedies to keep the host functioning.

My friend explained that a virus had come to the agency in the form of a new employee. This new employee was supposed to provide new direction and leadership. I don't know the particulars of what took place once the employee arrived, but my understanding is that the agency's board was padded with friends and that voices of reason were ignored. The employee did not take seriously their responsibility to the agency, and to the HIV-positive people the agency was meant to serve. As the agency deteriorated and failed, that failure was blamed on a host of unrelated factors, such as a lack of funding.

This agency helped people for over 20 years. It's a disgrace to see it disappear when it is still so needed by people living with HIV/AIDS. This agency had a structure that insured a passionate and committed response to the diverse and changing needs of people living with HIV/AIDS; but that structure was manipulated, lost and destroyed. The agency's closure is in direct opposition to its mission statement of empowerment and meeting the diverse and changing needs of people living with HIV/AIDS ... and it is a shame that it must end in decline and failure.

To contact Terri, please e-mail twilder@thebody.com.

Stay tuned for monthly additions to this blog!

See Also
Working in the Frontlines of the HIV Pandemic Since 1989

Reader Comments:

Comment by: Ellen (Houston, TX) Mon., Aug. 8, 2011 at 2:30 am EDT
.....you can blame M.S. for this one.
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Comment by: swamy (india) Wed., May. 19, 2010 at 9:17 pm EDT
hiv/aids will increase now that that organisation close!!!
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Comment by: x Tue., Apr. 14, 2009 at 9:48 am EDT
MS is a very very sick person. The cherry on the cake? She now works for CDC.
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Comment by: Robert (South Carolina) Wed., Mar. 25, 2009 at 3:48 pm EDT
I feel that my A.S.O. has changed, too. No, I *KNOW* that it has! It's now a "community" center, and they're plowing in patients as fast as they can, in a large new building, to make as much money as fast as they can.

Result? They have (yet again) a new doctor. And they have transferred me (yet again) to the new doctor, who knew nothing about me, despite my having been with them for several years.

The results? He got seriously pissed off (those are the words for it) when I reminded him, through his nurse, that he'd forgotten a prescription refill, and his response was to BELLOW and SCREAM at me.

I yelled back, literally, just the same as he did.

That is what it has reduced to: a new doctor from outside the USA coming in, bellowing at patients, and enraging them until they bellow back.
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Comment by: straight WF (Denver) Thu., Feb. 26, 2009 at 12:35 am EST
As the token straight, white, college educated, non-addict in a support group with all men last night this topic came up: what happened to the activism of the early 1990's? When I found out my status in 1992 I was three weeks away from finishing college.

I soon went to work at an ASO in Orlando and case managed hundreds of clients. We had fundraising events and a lot of support back then. The founder and director passed away from the virus and was succeeded by another positive man. He also wilted away in front of us and died from this insidious killer.

These were the ones who fought for all we have now and died doing it; they took the 1000mg AZT and participated in clinical trials, often dying because of letting themselves be guinea pigs.

The young people now have never seen an "AIDS victim" with Kaposi's Sarcoma or MAC and don't even know what these or other opportunistic infections/conditions are; they just know that there are medications keeping people alive for a long, long time.

So, the culmination of all of the above has resulted in several things: lack of funding, because it's "under control"; a reduction in safe practices, resulting in transmission of resistant strains of virus; increased unwanted pregnancy and other STD's; a low reserve of volunteers; and, more disabled long-term survivors like me, who are draining the Medicare/ Medicaid systems.

I know I am preaching to the choir and that some of you have thoughtfully written similar stories (above), but I just wanted to honor those who came before us, who subjected themselves to poison to save us, who marched in parades and created innovative ways to raise funds and who we ultimately buried. Lives ended too soon for too many. I needed to write this and to remember to be grateful. Be well, all.
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Comment by: David (San Antonio,Tx.) Mon., Feb. 9, 2009 at 8:56 am EST
Sadly, in my 22 years as a +, straight, white survivor, I have seen many agencies change and decline due to both incompetence and/or corruption, and when "providers" in agencies come in, often they seek to provide for themselves and grow their agencies' ability to seek funding while losing sight of their named purpose...helping those living with HIV who need help. The only thing I find nearly as selfish is seeing people living+ who recklessly spread HIV by continuing unsafe sex with unknown and unknowing partners.
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Comment by: Ellen (San Antonio, TX) Mon., Dec. 1, 2008 at 12:51 am EST
High rate education can not put a smiley face on the front line.
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Comment by: "TroubleMaker" (somewhere in the south) Thu., Nov. 20, 2008 at 8:58 pm EST
Terri, I read this and felt instantly validated. I understood completely what you are feeling. This is a sad time for all. Funding setbacks have caused the most dedicated people to become focused on obtaining the most money for their agencies. I have seen a shift of attention away from maintaining the highest levels of care for people, to one of getting "what we can get" so that we can "do as much as possible with as little as we have received." Psychosocial support is increasingly waning. Caring agency employees are overworked, and disinterested employees are being hired. I have been in the field at the same agency for under ten years,and I took pride in the fact that our agency cared. BUT over the past two years I have witnessed the shifts of attention toward monetary decisions. I have always advocated for respectful and supportive quality care for clients, and have been quite outspoken this past year about serious service delivery problems. I have been labeled a "troublemaker" and have seen people turn away from me. This started when I challenged the pharmacy that provides me co-pay assistance for my HIV medicine. I was denied my medicine -- the explanation given by phone was that I was not "eligible." I had recently updated eligibility, with proof of such in my file. Due to the disorganization of my file as well as communication mishaps I was told repeatedly that I was not eligible. If it were not for my agency's director's phone calls to this pharmacy I would not have received my meds. I am on salvage therapy and have been HIV positive for eighteen years. This happened to my clients as well! I struggled to bring this problem to light, against many people who wanted it hushed. I filed grievances, and others went to the press. Now, I will be leaving the field of HIV. The agency I work for is being taken over by the local health dept. Psychosocial support is iffy. "Professionals" are hurting people and are increasing HIV stigma. I choose to be positive. Peace, The TM!
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Comment by: don (detroit) Thu., Oct. 16, 2008 at 7:51 am EDT
Sad to see. But all things come to an end. Somewhere the people who once were, are no more. In Detroit, our AIDS walks, were borderline jokes. Did not raise that much money, nor people. If I did not know it was an AIDS walk. I would not have known what this was for. We had a good agency here close due to greed and corruption. Money does strange things to people. I often wonder how to change this. Other than try to change it, from within. Get involved, observe, learn and even teach. Have to, for this effects over a million now, with not much of a voice left. I think, though that this closing is just a start. Some more to follow, the movement had died out. Unless there is a major push, or a united front, its going to remain weak. Just not enough are getting "involved". It's a shame now, for all that was fought for not long ago, to start to disappear, at a time when it is needed the most. Over a million, and we are living longer too. The future remains to be seen.
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Working in the Frontlines of the HIV Pandemic Since 1989


Terri Wilder is a social worker who has worked in HIV for nearly two decades. She has written numerous articles about HIV, and has presented at HIV conferences around the United States. She is currently pursuing a doctoral degree in sociology at Georgia State University.


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Articles by Terri:

Are We Thinking About HIV and Older Adults?

Twenty-Seven Years of Women Living With HIV: Past, Present and Future (January 1, 2008)
To read PDF, click here

The Hidden Epidemic: White Women and HIV (September 2001)
From AIDS Survival Project

For the rest of Terri's articles, click here.


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