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Author Topic: World AIDS Day-forgotten and ignored by many  (Read 3504 times)

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Offline Mishma

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    • Marquis de Vauban
World AIDS Day-forgotten and ignored by many
« on: December 01, 2015, 08:28:05 am »
The NYTimes today had one article about WAD focusing on the epidemic in SE Asia, our local newspaper- not one word. The public has been lulled to sleep by the BS meme that  AIDs is a thing of the past, treatments are safe and well tolerated by all and that a toxic little blue pill will allow one to party like it is 1999 again. A disgusting as Charlie Sheen's non-disclosure life-style was, at least he brought heterosexual sexual transmission back into the conversation. We have been shunned and despised and now we find ourselves ignored. 
2016 CD4 25% UD (less than 20). 30+ years positive. Dolutegravir, Acyclovir, Clonazepam, Lisinopril, Quetiapine, Sumatriptan/Naproxen, Restasis, Latanoprost, Asprin, Levothyroxine, Restasis, Triamcinolone.

Offline leatherman

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Re: World AIDS Day-forgotten and ignored by many
« Reply #1 on: December 01, 2015, 10:54:22 am »
this is nothing new. It's been happening, well NOT happening, for over a decade. My biggest complaint every year is that there is no talk about HIV until the 7pm evening news on World AIDS Day - at which time, it is either too late to get to an event or the local event is over.

I am sorta pleased that a conversation has been brought up with Charlie Sheen's disclosure. There was also a commercial by Gilead playing during Thanksgiving week, which totally amazed me to see an HIV commercial on my TV after all these years. Well, at least one in primetime. There is a local prevention commercial, produced by the NC health dpt, that often plays a couple times late Sat and Sun nights (1-3am)

There are a few WAD events in the Charlotte area; but these are rarely advertised outside HIV agencies and the venues where the event are held. The only information in the local newspapers (CLT, NC and Rock Hill, SC) is a link in "Music & entertainment" about Alicia Keys new advocacy efforts.

Luckily, there is more information going around on the net though. Facebook shares do expose a lot of people who normally wouldn't see any HIV information.

party like it is 1999 again.
although I am a huge Prince fan and really appreciate the phrase, wouldn't that be "party like it's 1979"? ;)

In 1999, ART was just a few years old, the death rate was high but falling, and atripla was still half a decade away. (on a personal note, I was very aidsy back in those days and 1999 was the year between my 2 hospitalizations with PCP) But in 1979, the glorious 80s were about the happen and HIV/AIDS wasn't even on the radar.
leatherman (aka mIkIE)

Offline leatherman

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Re: World AIDS Day-forgotten and ignored by many
« Reply #2 on: December 01, 2015, 11:02:25 am »
of course, today is "Giving Tuesday" so most non-profits are all about posting their requests for donations this World AIDS Day. They have very little time to be talking about the HIV epidemic when requesting funding is "so much more important".  ::) ::)
leatherman (aka mIkIE)

Offline Jeff G

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Re: World AIDS Day-forgotten and ignored by many
« Reply #3 on: December 01, 2015, 11:07:37 am »
Its the same as it ever was. Its always been up to those of us living and dying of HIV to be heard and never let them forget.
HIV 101 - Basics
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Offline Wade

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Re: World AIDS Day-forgotten and ignored by many
« Reply #4 on: December 01, 2015, 11:53:10 am »
I don't think one day is enough to make the World Aware...
There should be AIDs awareness month   !!!
HIV 101 - Basics
 HIV 101
 You can read more about Transmission and Risks here:
 HIV Transmission and Risks
 You can read more about Testing here:
 HIV Testing
 You can read more about Treatment-as-Prevention (TasP) here:
 HIV TasP
 You can read more about HIV prevention here:
 HIV prevention
 You can read more about PEP and PrEP here
 PEP and PrEP

Offline Mishma

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    • Marquis de Vauban
Re: World AIDS Day-forgotten and ignored by many
« Reply #5 on: December 01, 2015, 12:27:41 pm »
Nice Wade. Love the reference to The Talking Heads, consciously or not.

"Same as it ever was, Same as it ever was."

Of course you are all correct. The lack of coverage, care, concern and $$ has been ongoing-but I wish it wasn't so.
2016 CD4 25% UD (less than 20). 30+ years positive. Dolutegravir, Acyclovir, Clonazepam, Lisinopril, Quetiapine, Sumatriptan/Naproxen, Restasis, Latanoprost, Asprin, Levothyroxine, Restasis, Triamcinolone.

Offline Wade

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Re: World AIDS Day-forgotten and ignored by many
« Reply #6 on: December 01, 2015, 01:38:28 pm »
I lived in the tiny Island city of Key West for many years,
To stand surrounded by the names of so many I shared my life with
was both powerful and heart breaking.
So much so I visited it only twice.
Some were  Dear friends ,  some were acquaintances ,  some ,
well lets just say ... much more......


http://keywestaids.org/names/
HIV 101 - Basics
 HIV 101
 You can read more about Transmission and Risks here:
 HIV Transmission and Risks
 You can read more about Testing here:
 HIV Testing
 You can read more about Treatment-as-Prevention (TasP) here:
 HIV TasP
 You can read more about HIV prevention here:
 HIV prevention
 You can read more about PEP and PrEP here
 PEP and PrEP

Offline Joe K

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Re: World AIDS Day-forgotten and ignored by many
« Reply #7 on: December 01, 2015, 02:05:26 pm »
While I would like to see more emphasis on World's AIDS Day, complaining about it on this forum does absolutely nothing to change the world.  Maybe, rather than complaining about others who don't do enough, we should concentrate on what we can do, personally, to change the dynamic.

Sometimes, we either need to lead, follow or get out of the way.  Complaining, without attempting change, are just hollow words.

Joe

Offline leatherman

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Re: World AIDS Day-forgotten and ignored by many
« Reply #8 on: December 01, 2015, 02:40:59 pm »
Its always been up to those of us living and dying of HIV to be heard and never let them forget.
it's definitely OUR problem to keep the pressure on. Quite frankly, with only maybe 1.5 million people in America infected, HIV really isn't that big of a problem in the States - especially to the 300 million who probably aren't even "affected" by HIV. If we don't talk about it, there are a lot of other health advocates who will gladly step up to talk about "their" illness (or disparity - don't forget all the other social issues that want the stage.)

I think some of the silence is the failure of consumer/PLWH advocacy groups. How many of those groups bought tv time? how many contacted reporters to get an article done (last week leading up to WAD)? How many wrote an op-ed or letter to the ed? How few actually sponsored WAD events or collaborated with others (HIV agencies, or local governments) to push some community awareness? How many joined with advocates of another health care issue or disparity who might have a similar agenda?

just to be clear, i'm not ripping on any group or any area specifically for these failures. Well actually I am; but that's for my own state of South Carolina's PLWH advocacy groups which rarely advocate. As long as they can get bodies in a seat to justify the funding, as long as everyone gets a free sandwich (and you better be giving out those gas cards too!), and as long as they call the event "advocacy" or "training", then it's all good for them. (you know, it's easy to avoid stigma when you don't even put yourself out there. LOL) A core group of advocates here from around the state have come to realize that we must strike out on our own if we're ever going to get passed the complacency of a large group of PLWH who live in the capital. (I have to give a lot of credit to our Ryan White Part C planning committee for helping some consumers from around the state to connect and in encouraging (and empowering) us to do the work that needs to be done while others sit around.

As CDC prevention interventions get more targeted to specific risk groups, the HIV prevention/education message is totally lost to the larger population who will most likely never be in a high risk group (not to mention those other risk groups which aren't even targeted). I often voice my worries about that at the state level. While I can understand that funding issues and collected data can push our interventions to focus on a specific group (right now, most often black MSM ages 18-26), I wonder what is happening in the white MSM group ages 18-26 who are getting NO educational/prevention interventions. In five years from now, we will quit targeting black MSM for prevention and focus on the exploding "white hiv epidemic"?

sorry for all the wandering thoughts above. LOL I'm off to my WAD event, where I'll be the guest speaker at the local university about PrEP before our candlelight service. I'll check in later with y'all! ;)
leatherman (aka mIkIE)

Offline Mishma

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  • HIV drugs are our Allies but hardly our Friends
    • Marquis de Vauban
Re: World AIDS Day-forgotten and ignored by many
« Reply #9 on: December 01, 2015, 02:53:15 pm »
Well stated Leatherman. Keep up the good work.

I use to be a member of Utah's HIV/STD prevention committee but funding for prevention from the State of Utah has all but dried up. We are a low incidence state-somewhere around a thousand positives in 3 million inhabitants last time I checked.

I submitted an editorial to our local rag but they choose not to run it. I'll pare it down and re-submit it as a letter to the editor.

I agree in part with Joe K: Complaining without action is frivolous 
2016 CD4 25% UD (less than 20). 30+ years positive. Dolutegravir, Acyclovir, Clonazepam, Lisinopril, Quetiapine, Sumatriptan/Naproxen, Restasis, Latanoprost, Asprin, Levothyroxine, Restasis, Triamcinolone.

Offline RobbyR

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Re: World AIDS Day-forgotten and ignored by many
« Reply #10 on: December 01, 2015, 05:29:54 pm »
I'd like to just say that I am personally grateful and very fortunate to live in the time where lifesaving treatments are so readily available at least in much of the developed world. Of course it's very sad that many in the developing world do not have this fortune & that must change HIV/AIDS knows absolutely no borders, or sexual orientation, or race, or gender.

But for all the issues that remain, for me, as someone who has been living with hiv for the last 10 years of my life, I am extremely grateful that I have good medical care and the medication which literally keeps me healthy. And also, more good news, there are so many different regimens now to choose from so people have more options. Everyone's body is different and so people with HIV/AIDS require different regimens according to their particular tolerences and body chemistry. We have come so far from the toxic, cookie-cutter regimens of the early days.

So while there are many major problems still regarding stigma and uninformed attitudes towards hiv/aids, I'd like to just say thanks to those who have fought for all the benefits that me as a 33 year old man enjoys, along with every one else. We shouldn't ever take those for granted.

I watched a documentary the other day about the early days about hiv/aids and it made me extremely sad for those who suffered in the first years of the epidemic when there was just no understanding and no hope at all. Now, with treatment, there is hope and indeed can live full lives just as anyone who is negative.

Sometimes we take it for granted, just taking one pill a day, and with hardly any side effects, just how fortunate we are to be living now. Sometimes it hits me, wow, I have to take a pill every day to keep me healthy, but usually I just am glad to be here. I sometimes wonder and worry what would happen in the event of some major worldwide catastrophe, if we suddenly had no access to medication refills, what would happen to us all, but I don't want to think about that, I am just grateful to have treatment and hoping that medicine will continue evolving and bring us even better options and hopefully get rid of this disease once and for all!
"I survived because I was tougher than anybody else".--Bette Davis

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Stribild
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Genvoya
2016-

Offline mitch777

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Re: World AIDS Day-forgotten and ignored by many
« Reply #11 on: December 01, 2015, 07:29:40 pm »
While I would like to see more emphasis on World's AIDS Day, complaining about it on this forum does absolutely nothing to change the world.  Maybe, rather than complaining about others who don't do enough, we should concentrate on what we can do, personally, to change the dynamic.

Sometimes, we either need to lead, follow or get out of the way.  Complaining, without attempting change, are just hollow words.

Joe

I only wish I could do more but complaining about people who complain here seems for me at least to be a bit of an odd take since this is after all a support forum.

Everyone that posted before you is a LTS and our abilities differ greatly. Why not let people vent without that sort of criticism? I know your history and am grateful for all that you have done and continue to do.

Venting on this forum is part of what it is all about. Hollow words? Maybe someone reading the comments expressed here will be motivated to into action. Who knows? For my part I try to post on FB to remind others that this is still a fight. Funding, stigma, medical advances or obstacles...

To each there own abilities. My superman activist status has never been great for a multitude of reasons but now I find that keeping up with prescriptions, doctor appointments, fighting for my disability and just trying to live the happiest life I can takes all of the energy I have left in me.

-----

On another note, WAD is a reminder to the HIV- folks, energy filled positive folks and leaders of nations. I also wish even more attention were paid to the fact that this virus is still out of control. It IS an important day. Individually we may not see how it changes the hearts and minds of others to whatever extent but it does. Inch by inch.
33 years hiv+ with a curtsy.

 


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