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Author Topic: 31 years and not much changed for survivors  (Read 550 times)

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Offline hoyle63

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  • Posts: 3
31 years and not much changed for survivors
« on: September 12, 2017, 11:09:52 AM »
I'm your typical LTS, 31 years, lost all my friends and partners and I can't see much different from those dark days before the 'new meds' came out. Big RX is still using us to get rich, still no generics available for us, the crazy 'donut hole' of Medicare Part D, the Stigma. Glad we have PreP now but I have concerns about complaceny among the new generation. We need a new push like we did once before. People like Larry Kramer and those who fought so hard for us against a government that let 25 million of us die before they would even SAY the word AIDS. I've done my part, took my share of abuse, paid dearly and fought dragons just to get my meds, watched my loved ones take their final breaths from this damned disease. It's time we step up and speak out again. I don't have many years left in this world and I want to go out fighting. I don't need someone telling me that the problem is with me when most of us know what I'm talking about. I'd like to  see Congress squirm again when they get confronted by people with Aids and their loved ones. We have no excuse not to act and every reason to be angry with our "leaders" for allowing the multiple problems of access and treatment that they largely created by lack of action. Let's get back to what we started and finish it.
surviving since 1981!

Hoyle

Offline leatherman

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  • Google and HIV meds are Your Friends
Re: 31 years and not much changed for survivors
« Reply #1 on: September 12, 2017, 02:11:46 PM »
welcome back.  :D you haven't posted in a loooong time.

Let's get back to what we started and finish it.
Many people never stopped advocating for improved healthcare. AIDSUnited hosts a yearly Congressional advocacy event (AIDSWatch https://www.aidsunited.org/). There are plenty of other national groups like NMAC, PWN, TAG that advocate for better quality healthcare for PLWH. Most states have statewide HIV advocacy groups. PLWH/Consumers are welcome to join HIV Planning Councils, Client Advisory Boards, and Ryan White Quality Committees. Most ASOs do advocacy work.

Not to mention all the groups, national and state level, that have been advocating for access to quality healthcare via Medicaid Expansion and the ACA.

and then there a growing group, "Letís Kick ASS", that specifically advocates for long term survivors, and HIV and aging. https://forums.poz.com/index.php?topic=67356.0

here are some Southern advocacy groups
https://southernaidscoalition.org/
https://southernaidsstrategy.org/

We have no excuse not to act and every reason to be angry with our "leaders" for allowing the multiple problems of access and treatment that they largely created by lack of action.
lack of action? I would suggest you look into some state or national groups doing advocacy work (as they have been doing for about 4 decades) to get meds, improve treatment, increase access, and push prevention interventions. I'm sure there is a Ryan White or advocacy agency near you that would love to have you join in their work.
leatherman (aka mIkIE)

All the stars are flashing high above the sea
and the party is on fire around you and me
We're gonna burn this disco down before the morning comes
- Pet Shop Boys

chart from 1992-2015
Isentress/Prezcobix

Offline InRecovery

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  • Posts: 22
Re: 31 years and not much changed for survivors
« Reply #2 on: September 13, 2017, 01:17:43 AM »
I definitely worry about the younger generation getting complacent. I've been HIV positive about 25 years. People still die from this disease. I also worry about what life would be like if I didn't have a good insurance plan.

Offline leatherman

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  • Google and HIV meds are Your Friends
Re: 31 years and not much changed for survivors
« Reply #3 on: September 13, 2017, 06:32:33 AM »
I definitely worry about the younger generation getting complacent.
from my experiences in North and South Carolina, where few to none younger (or older) PLWH do any advocacy, quality improvement or volunteer work, I think they are already complacent. Too often I, a 55-yr old white gay guy who has been poz nearly 32 yrs, am the only consumer/PLWH in the room. Even though the vast number of PLWH in our two states are 20-something black men (MSM), for much of the quality improvement and advocacy work, sadly I end up doing the best I can to represent 20k+ PLWH in SC and 35k+ people in NC by helping the state health dept. or talking to our State Legislators.

these days every meeting or advocacy event  I attend, I make sure to comment on the visible lack of young people, black MSM, black women, transgendered, and LTS who should all be present to represent us and our needs/issues.
leatherman (aka mIkIE)

All the stars are flashing high above the sea
and the party is on fire around you and me
We're gonna burn this disco down before the morning comes
- Pet Shop Boys

chart from 1992-2015
Isentress/Prezcobix

Offline em

  • Member
  • Posts: 257
Re: 31 years and not much changed for survivors
« Reply #4 on: September 21, 2017, 11:28:26 PM »
some things do not change

they have a support group locally for the teen ager to young adult setting the limit at 25 years old

I am way passed that age limit

 sent an email about a support group for other than the one they offered for older HIV ers called gay men's support group. they referred my email to the mental health coordinator for the AIDS support organization.

they said they do not get much call for coed AIDS support groups for older people  ? I just thought the one I had gone to 25 years ago when I was still young had a woman and about four guys who came and went. after about three meetings  that no one showed up fore  I stopped going myself.  if you have read my posts maybe that was the goal. getting me to stop going?  and talking so much about myself?

 only thing in the world worse than mental healthcare was AIDS. from a long time ago anyway ( do not want to depress or scare the newbies too much )  . maybe has or  has not changed , will the suffering never end that does not seem to change. mental health care and the opportunity to help by doing things I wish I could do to my worst enemies. 

not much change. still feeling the eminent end around the corner and being an out sider looking in at life. but still barely living,  just surviving  alone and isolated from the world that goes on without me. ( at least my selfish opinion ) 


sorry I will stop on that note and be grateful for the ability to still be able to take another breath.


 
 
« Last Edit: September 21, 2017, 11:30:31 PM by em »

 


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