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Author Topic: Aids Resource Organizations  (Read 1758 times)

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Offline SANJUANDUDE

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Aids Resource Organizations
« on: September 03, 2013, 09:18:04 AM »
Does it really matter which ones have a waiting list or not...??  They don't do anything anyway, except sit there and wine about how they can't do this that or the other.  Maybe if they put some of that negative energy into getting something done, outputs would be better.

I believe that there shouldn't even be ASO's because they are useless.  Let the state manage the funds, as NY state does, and they are much more efficient than other states.  In NY, I received, ID care, primary, dermatology, caridiology (if needed), dental, and vision.  I am in Florida now, the land of huge disappointment in many aspects doesn't have an ASO here worth a crap. 
10/2011-CD-4-598-Undetectable
01/2012-CD-4-758-Undetectable
04/2012-CD$-780-70 Viral Load
08-2012-CD4-846--20 viral load
02/2013-CD$ 865----20 Undetectable Viral Load
08/2013- CD4-898----<20 undetectable viral load

Offline BT65

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Re: Aids Resource Organizations
« Reply #1 on: September 03, 2013, 04:26:31 PM »
I believe that there shouldn't even be ASO's because they are useless.  Let the state manage the funds, as NY state does, and they are much more efficient than other states.  In NY, I received, ID care, primary, dermatology, caridiology (if needed), dental, and vision.  I am in Florida now, the land of huge disappointment in many aspects doesn't have an ASO here worth a crap.

I'm sorry there are no good ASO's where you live, but not all ASO's are "useless."  I'm a case manager at an ASO and I can honestly say that we do a lot with very little and constant cutbacks.  We get people who have no insurance, on insurance and into medical care.  If there's going to be a waiting period for the insurance starting, we get prescription assistance.  We also have a substance abuse program and a housing program.  Oh, and we also do assistance with disconnects, rents, mortgages and medical bills. 

So, not all ASO's are useless.  Maybe not all are as efficient as New York, but most do try to do the best with very little.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline wolfter

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Re: Aids Resource Organizations
« Reply #2 on: September 03, 2013, 04:39:33 PM »
Using a wide brush to paint?  We have wonderful ASO's in our state.  They recently did a major overhaul to become ARCOHIO (AIDS Resource Center of Ohio)  to pretty much link the entire state instead of having several smaller organizations. 

I'm pretty fortunate that I don't currently need their services, but they provided for me when I needed them. 

Is there an underlying frustration?  Perhaps instead of  being angry at those who are trying, become an advocate for change and become part of the solution.
productivity breeds content

Offline leatherman

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Re: Aids Resource Organizations
« Reply #3 on: September 03, 2013, 10:13:50 PM »
I believe that there shouldn't even be ASO's because they are useless.
I lived in a different part of Ohio from Wolfie where there were barely 100 people in the whole county who were positive so there wasn't an ASO at all anywhere near me. In 20+ yrs of meds and treatment, I handled every bit of paperwork and any issues dealing with my health care for me and two other partners - who both went through the extra added mess of being hospitalized and dying.

I say all that to ask, why are you using ASO services at all? Sure you might need to go in every so often to have some sort of official paperwork signed (like ADAP or something); but short of that YOU should be able to manage you doctor, meds, and treatment all on your own.

Other diseases don't have case managers and those people get health care and meds somehow ;)

In NY, . . .  I am in Florida now,
yes, moving to SC from OH changed a lot for me too.

with there being less than 2 million hiv poz people in America (which is least that than 1% of the population) means that they really aren't that many people who are even eligible for ASO services, much less that there's enough of them in one area to have decent HIV services.

A lot of people have to move/relocation and make long extended trips to get proper treatment for cancer and other diseases. Perhaps if you aren't able to get resolution with your ASO, or manage your own health care maybe it's time to look at moving.

Just don't move to Tea Party-land South Carolina! ;) :D There are problems here too. Definitely move to a more-blue or more-Northern state or someplace where there are a lot of HIV poz people in a smaller geographic area.  ;)
leatherman (aka mIkIE)


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

Offline phildinftlaudy

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Re: Aids Resource Organizations
« Reply #4 on: September 03, 2013, 10:25:26 PM »
What part of Florida are you in? There are a couple of good ASOs in Broward County and one or two here in Miami....

Not sure whereabouts you are - but here in South Florida one can usually put together a pretty good combination of services....

Not sure about some of the other areas of the state....
September 13, 2008 - diagnosed +
Labs:
Date    CD4    %   VL     Date  CD4  %   VL
10/08  636    35  510   9/09 473  38 2900  12/4/09 Atripla
12/09  540    30    60   
12/10  740    41  <48   
8/11    667    36  <20  
03/12  1,041  42  <20
05/12  1,241  47  <20
08/12   780    37  <20
11/12   549    35  <20
02/12  1,102  42  <20
11/12   549    35  <20

Offline Miss Philicia

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Re: Aids Resource Organizations
« Reply #5 on: September 03, 2013, 10:37:15 PM »
I lived in a different part of Ohio from Wolfie where there were barely 100 people in the whole county who were positive so there wasn't an ASO at all anywhere near me. In 20+ yrs of meds and treatment, I handled every bit of paperwork and any issues dealing with my health care for me and two other partners - who both went through the extra added mess of being hospitalized and dying.

It's not like that everywhere. In NYC, at least when I was there, I could get on something like ADAP on my own. Here in Philly you're required to go through the city health department's AIDS Activities Coordinating Office which assigns you to a case worker at either an ASO or if you're at an HIV clinic they have in-house case managers.

That's just but one example.
"Iíve slept with enough men to know that Iím not gay"

Offline leatherman

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Re: Aids Resource Organizations
« Reply #6 on: September 03, 2013, 11:06:02 PM »
I could get on something like ADAP on my own.
I could only get the adap application and reapproval form from the local non-profit family services office downtown. That's all they did for any sort of AIDS services  - they gave me the form. They were never any help and had zero answers about HIV, treatment, or services.

what our stories show is that the OP has other options if he doesn't like the way other people handle and manage his health care and access to services. ;)
leatherman (aka mIkIE)


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

Offline jkinatl2

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Re: Aids Resource Organizations
« Reply #7 on: September 03, 2013, 11:49:36 PM »
You think the state would do a better job? During a sequester?

That's adorable.

"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 leatherman

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Re: Aids Resource Organizations
« Reply #8 on: September 04, 2013, 01:22:12 AM »
During a sequester?

That's adorable.

and ROFLMAO  ;D
leatherman (aka mIkIE)


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

Offline SANJUANDUDE

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Re: Aids Resource Organizations
« Reply #9 on: September 04, 2013, 05:51:03 AM »
It has just been my experience that with most ASO's, such as Project Response in Melbourne, FL, they are pretty much worthless.  I also lived in southeastern New Mexico for a number of years and used, Alianza, and again not too great, but better than Project Response.  Oddly enough, my best experience with an ASO was in western Nebraska with the Nebraska Aids Project in Scottsbluff, NE; it was probably the only agency that I encountered where the case worker actually enjoyed her position.

At this time, I am not using an ASO and am out of medical care and access to medication in Florida.
10/2011-CD-4-598-Undetectable
01/2012-CD-4-758-Undetectable
04/2012-CD$-780-70 Viral Load
08-2012-CD4-846--20 viral load
02/2013-CD$ 865----20 Undetectable Viral Load
08/2013- CD4-898----<20 undetectable viral load

Offline wolfter

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Re: Aids Resource Organizations
« Reply #10 on: September 04, 2013, 07:14:50 AM »
You think the state would do a better job? During a sequester?

That's adorable.

Thanks, I needed a good morning chuckle.   ;)

To the OP, if the situation is as dire as you describe, perhaps it's time to become your own best advocate and actively search for solutions.  ASO's are great, but ultimately, you need and are responsible for yourself. 
productivity breeds content

Offline leatherman

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Re: Aids Resource Organizations
« Reply #11 on: September 04, 2013, 08:18:56 AM »
I believe that there shouldn't even be ASO's because they are useless.
by the way, there are ASOs in the first place because an epidemic was sweeping America and those affected by it stood up and demanded assistance while they began to help themselves. There aren't many special clinics for other diseases or special laws (Ryan White) designed just to fund (on a fed and state level) the needs of people affected by those diseases. ASOs, the funding and the services are there because PLWHA and their allies fought to create this kind of healthcare to stop the deaths, the pain and the suffering.

But that's a whole other story beside your complaints and the inattentive care that you are no longer receiving. However I would point out that the Ryan White laws allow and even demand to have input from consumers. If your former clinic receives RW funding, you may want to consider joining the RW Quality Management Committee in your area. There you could address the problems at your clinic, since others must be receiving substandard service also, and do a whole world of good, perhaps improving the quality of healthcare for all the PLWH living in your are.
leatherman (aka mIkIE)


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

Offline leatherman

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Re: Aids Resource Organizations
« Reply #12 on: September 04, 2013, 08:19:43 AM »
am out of medical care and access to medication in Florida.
that's not very good. I could point you to several threads lately about the necessity of taking meds and the consequences of not taking meds; but I hope you've (and every other member) has already read those.

One of the medications in the Atripla is causing the rash.
may I ask, why you do not have access to meds and what you plan to do about this situation? Have you gone off meds now?

I never had a whole lot of use for a "case manager." ..  I pretty much did most of my own ADAP sign up; however, in some areas such as that dirty, nasty Florida you will need the ASO, which is where the case manager is.
it seems that you have been having issues for a LONG time, and even used to do most of your own paperwork. Why did you stop? Exactly how is your ASO not helping you out?

:)  Hi, I am currently living in central Florida where the "care" and funds are not so great. .... Sorry to babble, but the agency here is beyond horrible.

I may be moving to Montgomery ,AL sometime in the near future.  I understand that the state of Alabama does have a waiting list of around 100 or so people right about now.  Does anyone here have any experience with living in Montgomery?  I have spent time, actually lived in Tuscaloosa for about a year or so.  It was ok, but it's still Alabama with that "southern mentality" and I am from New Mexico, where it is a live and let live mentality.  When my bud in Montgomery asks me if I am gong to do it, I tell him, "you now, maybe, but it's the south."  Would anyone else here agree with me that it is far from "gay friendly" and well ummm, the south.
don't get me wrong; but I noticed going through your posts that you have lived in an awful lot of places. It seems it would behoove you to take your own advice and do some checking on the situation before moving to your next location. If that area is not able to meet your needs as you wish to have them met, you should probably find somewhere else to live.


Looking at your posting history, I'm not quite certain what your real complaint is. It seems you move frequently and often to places that don't offer the best health care. Then when you get into these areas, you either handle your paperwork and medical care by yourself or you complain that others are not doing it at all. Have you been with the same ASO (the one you are complaining about now) for the last year? Was this the same one you were having issues with in May 2012?

I know I've asked a lot of questions; but your story leaves me very confused about just what you're even complaining about. If you want support (and I would guess so since you posted in a support forum LOL), it would help to understand the real problem and what actions you've been taking to resolve your issues.
leatherman (aka mIkIE)


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

Offline oksikoko

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Re: Aids Resource Organizations
« Reply #13 on: September 04, 2013, 08:57:01 AM »
I believe that there shouldn't even be ASO's because they are useless.  Let the state manage the funds, as NY state does, and they are much more efficient than other states.  In NY, I received, ID care, primary, dermatology, caridiology (if needed), dental, and vision.  I am in Florida now, the land of huge disappointment in many aspects doesn't have an ASO here worth a crap.

I dunno. An ASO saved my life and continues to offer support. That's kinda neat. But I live in NY.
Code: [Select]
2013-10-03:                ☣ VL (=) undetectable ☣ CD4 (+) 1105
2013-05-23:                ☣ VL (=) undetectable ☣ CD4 (-) 945
2013-02-25:                ☣ VL (-) undetectable ☣ CD4 (+) 1123
2012-12-16: Enter Stribild
2012-11-20: HIV+           ☣ VL (→) 132,683      ☣ CD4 (→) 920
2012-04-01: HIV-
Dates in this signature file conform to ISO 8601. ;-)

Offline SANJUANDUDE

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Re: Aids Resource Organizations
« Reply #14 on: September 05, 2013, 07:35:41 AM »


In NY state you an access your Ryan White/ADAP without the services of any ASO.




10/2011-CD-4-598-Undetectable
01/2012-CD-4-758-Undetectable
04/2012-CD$-780-70 Viral Load
08-2012-CD4-846--20 viral load
02/2013-CD$ 865----20 Undetectable Viral Load
08/2013- CD4-898----<20 undetectable viral load

Offline SANJUANDUDE

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Re: Aids Resource Organizations
« Reply #15 on: September 05, 2013, 07:39:55 AM »
And I am quite sure that all ASO's are not bad and "useless" as I put it, but there are several that do leave a lot to the imagination.  Yes, I am still on my meds.  Fortunately, I do have about 8-9 months build up of excess medications, and not because of Florida, but because my insurance card from the state of NY was still active when I moved back to Florida and I was getting meds from both ends.  I called NY and they told me that as long as the policy is active, "it was fine."
10/2011-CD-4-598-Undetectable
01/2012-CD-4-758-Undetectable
04/2012-CD$-780-70 Viral Load
08-2012-CD4-846--20 viral load
02/2013-CD$ 865----20 Undetectable Viral Load
08/2013- CD4-898----<20 undetectable viral load

Offline SANJUANDUDE

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Re: Aids Resource Organizations
« Reply #16 on: September 05, 2013, 07:44:27 AM »
there may be other underlying factors as to why I am so unhappy with many things.   I lost a partner of nearly 13 years, which has caused me not to really care about much; however, my health is still very good.  I never wanted to come back to Florida in my worse nightmare, never liked it here, never will; it was something that I was bullied into.  During the past 15 years partner and I had lived in many states, true; for example, Wyoming, New Mexico, California, Arizona, Texas, Alabama, Florida, New York, and Nebraska.  Probably, the best ASO that I encountered was in Nebraska, but the best care was in NY state, New Mexico was also good, but it was tough to find someplace to match NY state.  Florida, well it's Florida, is laughable.
10/2011-CD-4-598-Undetectable
01/2012-CD-4-758-Undetectable
04/2012-CD$-780-70 Viral Load
08-2012-CD4-846--20 viral load
02/2013-CD$ 865----20 Undetectable Viral Load
08/2013- CD4-898----<20 undetectable viral load

Offline SANJUANDUDE

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Re: Aids Resource Organizations
« Reply #17 on: September 05, 2013, 07:52:28 AM »
Quote
But that's a whole other story beside your complaints and the inattentive care that you are no longer receiving. However I would point out that the Ryan White laws allow and even demand to have input from consumers. If your former clinic receives RW funding, you may want to consider joining the RW Quality Management Committee in your area.

I don't have that kind of "give a crap" anymore to devote one second of my time to that.
10/2011-CD-4-598-Undetectable
01/2012-CD-4-758-Undetectable
04/2012-CD$-780-70 Viral Load
08-2012-CD4-846--20 viral load
02/2013-CD$ 865----20 Undetectable Viral Load
08/2013- CD4-898----<20 undetectable viral load

Offline SANJUANDUDE

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Re: Aids Resource Organizations
« Reply #18 on: September 05, 2013, 08:29:54 AM »
I have to admit that I did move around excessively for a while, but now that I am approaching 50 in a few years, it is time to settle down.  This place will not be Florida.  There was one state where I did encounter the most horrible care and access to care and that was Wyoming.  We were living in Cody, WY and health care for people such as myself was non-existent; however, I understand in Casper, where Dr. Mark Dowell is, the care is great.
10/2011-CD-4-598-Undetectable
01/2012-CD-4-758-Undetectable
04/2012-CD$-780-70 Viral Load
08-2012-CD4-846--20 viral load
02/2013-CD$ 865----20 Undetectable Viral Load
08/2013- CD4-898----<20 undetectable viral load

Offline leatherman

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Re: Aids Resource Organizations
« Reply #19 on: September 05, 2013, 07:06:48 PM »
I don't have that kind of "give a crap" anymore to devote one second of my time to that.
I understand. ;) I was just trying to present you with as many options as possible to make this situation better ;) Telling you to do nothing really wouldn't have been offering you much support.

Yes, I am still on my meds.  Fortunately, I do have about 8-9 months build up of excess medications, and not because of Florida, but because my insurance card from the state of NY was still active when I moved back to Florida and I was getting meds from both ends.  I called NY and they told me that as long as the policy is active, "it was fine."
It's great to hear that you are still on meds and still have meds.

when I moved from OH to SC, my medicaid/foodstamp case was an issue for 3 months. Thankfully I had a stockpile of meds. ;) Thankfully too, OH finally closed out my case so I could start my case in SC. Doh!

there may be other underlying factors as to why I am so unhappy with many things.   I lost a partner of nearly 13 years, which has caused me not to really care about much
Oh No! I am very sad and so sorry to hear this. By "lost" do you mean "broke up" or do you mean really "lost"? Having "lost" my two guys, I can sure understand your current unhappiness. :(
leatherman (aka mIkIE)


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

Offline oksikoko

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Re: Aids Resource Organizations
« Reply #20 on: September 05, 2013, 07:34:00 PM »

In NY state you an access your Ryan White/ADAP without the services of any ASO.

I was thinking more about the other services. They have a soup kitchen, therapists, client advocates, all that jazz. I accessed ADAP via some nice lady in Albany. :) They really are very nice when you call. It's the only state agency I don't mind talking to.

What you feel about ASOs, I feel about HASA, so I understand.
Code: [Select]
2013-10-03:                ☣ VL (=) undetectable ☣ CD4 (+) 1105
2013-05-23:                ☣ VL (=) undetectable ☣ CD4 (-) 945
2013-02-25:                ☣ VL (-) undetectable ☣ CD4 (+) 1123
2012-12-16: Enter Stribild
2012-11-20: HIV+           ☣ VL (→) 132,683      ☣ CD4 (→) 920
2012-04-01: HIV-
Dates in this signature file conform to ISO 8601. ;-)

Offline oksikoko

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    • the treatment cascade
Re: Aids Resource Organizations
« Reply #21 on: September 05, 2013, 07:36:39 PM »
Probably, the best ASO that I encountered was in Nebraska, but the best care was in NY state, New Mexico was also good, but it was tough to find someplace to match NY state.


They do make it easy being positive here. I wonder if I'd be as happy-go-lucky in any other state. So I can never leave. :D Oh. :(

Sorry you're having a rough time of it down there.
Code: [Select]
2013-10-03:                ☣ VL (=) undetectable ☣ CD4 (+) 1105
2013-05-23:                ☣ VL (=) undetectable ☣ CD4 (-) 945
2013-02-25:                ☣ VL (-) undetectable ☣ CD4 (+) 1123
2012-12-16: Enter Stribild
2012-11-20: HIV+           ☣ VL (→) 132,683      ☣ CD4 (→) 920
2012-04-01: HIV-
Dates in this signature file conform to ISO 8601. ;-)

Offline phildinftlaudy

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Re: Aids Resource Organizations
« Reply #22 on: September 05, 2013, 07:50:35 PM »
Just for the record -
All of Florida is not "jacked up."

Here in South Florida there are plenty of great services available...

There are some good ASOs - maybe not great, but if you are able to pick and choose services from multiple ones, you can come up with an overall very robust set of services.

When I was unemployed and newly diagnosed, I benefitted from primary health care and case management from South Broward Hospital District (Memorial Hospital), food (and we are talking some great food) from Poverello, lectures and social events from The Center for Positive Connections, and the ability to get on the list for HOPWA housing (although I never needed it - and now I don't qualify) through Broward House....

I just don't want all of Florida painted or should I say tainted with a singular brush - while there may be areas with poor services and/or less than great ASOs, here in South Florida there are some great services available. Of course, we may have more processes than some states or areas - but we also have a high number of HIV+ people living down this way.

When my brother was sick, it took me less than 2 hours at centralized intake to get him enrolled in all available services - My mother, who is not very acquainted w/ services, etc. was even impressed with everything my brother would have been able to access.

Sorry about the issues you are facing in central Florida - I have always said that Florida is like three different states in one.... North Florida, Central Florida, and South Florida - each has their own unique characteristics and each has their own pros and cons.
September 13, 2008 - diagnosed +
Labs:
Date    CD4    %   VL     Date  CD4  %   VL
10/08  636    35  510   9/09 473  38 2900  12/4/09 Atripla
12/09  540    30    60   
12/10  740    41  <48   
8/11    667    36  <20  
03/12  1,041  42  <20
05/12  1,241  47  <20
08/12   780    37  <20
11/12   549    35  <20
02/12  1,102  42  <20
11/12   549    35  <20

Offline leatherman

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Re: Aids Resource Organizations
« Reply #23 on: September 05, 2013, 09:14:12 PM »
but we also have a high number of HIV+ people living down this way.
^this more than anything is probably the major factor that PLWH must consider. It's just not feasible - at the amount of poz people to the amount of citizens - for incredible HIV services and health care to be universally available in America
leatherman (aka mIkIE)


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

 


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