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Author Topic: Re: Interesting article about long term survivors over 50:  (Read 2075 times)

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Offline jm1953

  • Member
  • Posts: 262
Re: Interesting article about long term survivors over 50:
« on: June 02, 2013, 10:18:15 PM »
This was sent to me from a friend recently published I believe in the NY Times.  This article really spoke to me about what I think many of us have been going through.  Thought I would share it as it is worth a read.  Hope I can paste it properly so you can access it.  Here it goes:

http://www.nytimes.com/2013/06/02/nyregion/spared-death-aging-people-with-hiv-struggle-to-live.html?pagewanted=4&_r=0

Hopefully it works.
Positive 25 years. 7/21/2012 Current CD 4: 780 Viral load: less than 50. 38 to 40%
Current drug regimen, Isentress, , Emtriva, Sustiva Wellbutrin, Klonipin, Allegra, Ambien, Testosterone, Nandrolone, Vicodin, Benedryl, Aspirin, lots of vitamin supplements.

Offline aztecan

  • Member
  • Posts: 5,399
  • 29 years positive, 57 years a pain in the butt
Re: Interesting article about long term survivors over 50:
« Reply #1 on: June 03, 2013, 12:24:03 AM »
Hey Ray,

I read this a few days ago. It is sobering, to say the least.

As the news story said, most of the services, etc., are geared toward younger, more recently infected people. This means there is a segment of the population, us, who need services that often don't exist for them.

This quote from the article is quite telling:
"Nearly three-quarters of H.I.V.-positive New Yorkers ages 50 and older live alone, according to the health department; in a 2006 survey of 914 H.I.V.-positive older New Yorkers by the AIDS Community Research Initiative of America, two-thirds of the respondents were moderately or severely depressed."

I don't think New Yorkers are alone in this The majority of those people I know who are living HIV and are 50+ live alone and I can safely say ,many don't have family to rely on should they need help.

HUGS,

Mark
« Last Edit: June 03, 2013, 12:47:51 AM by aztecan »
"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Offline wolfter

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  • Posts: 4,644
Re: Interesting article about long term survivors over 50:
« Reply #2 on: June 03, 2013, 01:29:15 AM »
There's another discussion going on about the report.

http://forums.poz.com/index.php?topic=48829.0

Wolfie
Complacency is the enemy.  ;)  Challenge yourself daily for maximum  return on investment.

Online Jeff G

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  • How am I doing Beren ?
Re: Re: Interesting article about long term survivors over 50:
« Reply #3 on: June 03, 2013, 09:50:20 AM »
This is an excellent read .... and its being discussed in this thread also .

http://forums.poz.com/index.php?topic=48829.0

Offline flashdance

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  • Posts: 6
Re: Interesting article about long term survivors over 50:
« Reply #4 on: June 03, 2013, 04:15:21 PM »
Another slant to this....

It is one thing to be able to live for 20+ years with HIV....but then those great service provider individuals that have always been there for me....are retiring.

I continue to live and wonder who will be my advocate in public health or at the doctor's office. It is disheartening to hear that your primary HIV doctor is retiring. It has been disheartening that two case managers that have provided the connection to services have stopped working.

I (and I assume most of us) advocate for ourselves...but who will take the place of those service providers that assisted us and loved us and respected us?

Offline aztecan

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  • Posts: 5,399
  • 29 years positive, 57 years a pain in the butt
Re: Interesting article about long term survivors over 50:
« Reply #5 on: June 04, 2013, 07:33:46 PM »
Another slant to this....

It is one thing to be able to live for 20+ years with HIV....but then those great service provider individuals that have always been there for me....are retiring.

I continue to live and wonder who will be my advocate in public health or at the doctor's office. It is disheartening to hear that your primary HIV doctor is retiring. It has been disheartening that two case managers that have provided the connection to services have stopped working.

I (and I assume most of us) advocate for ourselves...but who will take the place of those service providers that assisted us and loved us and respected us?

This is a nagging question that vexes many of us. We nearly lost the only HIV doc within a 200-mile radius recently. Gratefully, there was a reprieve, but that spectre is always lurking in the shadows here.

I fully understand what you said. I think this problem will be augmented when ACA kicks in and there is a systemwide adjustment for all of us.

We must remember to continue to advocate for ourselves, even when faced with so many fresh or unfamiliar faces.

HUGS,

Mark
"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Offline BT65

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Re: Interesting article about long term survivors over 50:
« Reply #6 on: June 05, 2013, 05:08:17 AM »
I fully understand what you said. I think this problem will be augmented when ACA kicks in and there is a systemwide adjustment for all of us.

We must remember to continue to advocate for ourselves, even when faced with so many fresh or unfamiliar faces.

HUGS,

Mark

When ACA does happen, it's going to be a nightmare for case managers, as you well know, Mark.  I've already had clients calling, asking what's going to happen to their insurance.  At the agency I work at, we have been able to get people on this insurance that's going to be going away (ICHIA).  We have nothing to tell these clients yet, since we have no idea what's going to happen.  That doesn't stop clients from freaking out.  I'm not looking forward to it, from a case management standpoint.

As for advocacy, Mark, I don't know if you face this, but I have so many clients who won't even come into the agency for fear of someone finding out their status.  I have very few clients who take care of their own benefits, will fight to keep what they have, etc.  And the co-workers at the office I'm at seem to keep a good number of clients dependent on case management to do it all.  I tend to go from a standpoint of having clients be more self reliant, coming from a view of "what will happen to them if we close?"  I'm the case manager who has the least amount of voicemails after a weekend or holiday, and tell my co-workers it's because I make people more reliant on their own skills.  We are supposed to move clients toward self sufficiency, after all. 
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline Habersham

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  • Posts: 317
Re: Interesting article about long term survivors over 50:
« Reply #7 on: June 05, 2013, 09:19:40 AM »


I think from a case manager's standpoint you are doing the right thing. When I had a case manager at an ASO I used to tease her that she was my Administrative Assistant. I had a computer at home but since money was tight it was often less expensive for me to take the bus to the ASO to have things photocopied etc. We communicated mainly by email. She would send me a hard copy of something if it needed to be fulfilled in that way or email me a link or a telephone # when appropriate. Although I wasn't able to work I could certainly make phone calls and fill out forms. I realized her time was more valuable than mine.

But what of the client that doesn't have a home computer? It's easy to say you can go to the library but computers aren't always available there and it might be two bus routes away. Many clients are intimidated by dealing with government and other agencies.  From working at nonprofits myself I came to realize that many people actually can't read or understand forms.

Client Advocacy has become so important because of this. I'm sure you attempt to make everyone as self reliant as they can be.

I was never embarrassed to appear at the ASO. But on the other hand I was usually mistaken for a case worker or volunteer.

« Last Edit: June 05, 2013, 09:23:45 AM by Habersham »
Because I Can

Offline wolfter

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Re: Interesting article about long term survivors over 50:
« Reply #8 on: June 06, 2013, 12:20:16 AM »
Not sure why they wouldn't include those in their mid 40's with this virus.  Those of us lucky enough to survive are facing consequences earlier than actipcated.

Those of who were the youngsters of this plague never got the ability to mature after being given.....the results.

But I guess we'll continue on with the geriatric generation to age with this.  My goal is to be the oldest living person with HIV and be interviewed by Matt Lauer's son.
Complacency is the enemy.  ;)  Challenge yourself daily for maximum  return on investment.

Offline BT65

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Re: Interesting article about long term survivors over 50:
« Reply #9 on: June 06, 2013, 06:29:38 AM »
But what of the client that doesn't have a home computer? It's easy to say you can go to the library but computers aren't always available there and it might be two bus routes away. Many clients are intimidated by dealing with government and other agencies.  From working at nonprofits myself I came to realize that many people actually can't read or understand forms.

Well, there is a computer at our agency that clients can use.  And trust me, I understand clients' situations when they can't understand forms, benefit procedures etc.   I do help those people with anything they need.  One of my clients has dementia, though not progressed enough yet to be in an extended care facility, and I help him a lot with forms etc.    Plus I have a large amount of African clients who have no clue about the American system, which I help as much as I can.  Like for the first time, the insurance we help people get on, required all recipients to file taxes, even if they're on disability, even if they have no other income. Well, one of the clients who did this is African, whose mainstay is baby-sitting.  She found out she owes the feds over $1000, state over $200.  So we went to the IRS to set up payments. And there was no way I would let her go to the IRS by herself.  No way.  I felt bad for her and did not want her first experience with the US's government process to be a horrible one; even though it already is with the money she owes. 

The people who won't come to the agency are mostly Africans who want to keep their status hidden, even from other African friends, even from their pastors.  I don't make a big deal out of it, I just meet them where they're at.  I totally get people not wanting their status exposed, even when I don't care about mine (getting exposed).  It's still very stigmatized in the African culture unfortunately. 
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline aztecan

  • Member
  • Posts: 5,399
  • 29 years positive, 57 years a pain in the butt
Re: Interesting article about long term survivors over 50:
« Reply #10 on: June 12, 2013, 10:06:57 PM »
Betty, I agree with you we should help those capable of handling their own affairs be as responsible for them as possible.

But, like you, I have some who cannot do it for themselves. One guy is a PML survivor whose mental abilities have been affected. Others are schizophrenic, which is always a challenge for the person trying to help. I have some who don't speak English, or very little English. While my Spanish is improving, I cannot wrap my head around Navajo, so there are challenges there as well.

Bottom line is I try to make people as self sufficient as possible, but, as I know you know, sometimes it just isn't possible.

I also agree with you. For case managers, ACA is going to be a complete and utter nightmare. I had one guy from Santa Fe tell me he thinks about three-quarters of those living with HIV in the state would be eligible for expanded Medicaid.
That sounds like it could be OK, but then he added those already on Medicaid will be on a different system, and others will have to apply using new and still undisclosed forms.
The insurance exchange is going to be a complete nightmare for those of my clients, which is about 85 percent, who are on the state Medical Insurance Pool for high risk individuals. Right now, we help them with their premiums, but I have no clue if that program will continue under ACA.
That could mean that some people may be looking at paying premiums for the first time in their lives. I already know people won't be happy.
I think the ACA is a good thing, and long overdue. But I also know it is certainly no panacea and there will be many hurdles to jump before we get the system up and running, or at least half running.

HUGS,

Mark
"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Online Jeff G

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  • How am I doing Beren ?
Re: Re: Interesting article about long term survivors over 50:
« Reply #11 on: June 12, 2013, 10:43:13 PM »
I think it might be a good idea to remind or check in on family and friends who are not able to navigate the health care system by them selves anymore . I got a letter the other day from Medicare that was vague in every way except to say you must mail order diabetic supplies beginning next month . I thought to myself I bet my Aunt got one of these and is in full panic mode about now , I called her and she was .

That's when I realized lots of people who rely on Medicare and Medicaid for health services are not going to be able to navigate through some of these changes that are coming  ... so Im giving all of us that can figure these things out a gentle reminder that our family , friends and neighbors may need assistance , HIV or not .   

 


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