LTS Statistics...

[flashdance]

I have read one article stating how many LTS individuals live in the USA today....but the numbers slipped from my memory.

I am only "labeled" HIV+ with 26 years of this virus in my body.

Is there a need or a drive for an LTS person to be classified:
HIV+
AIDS
OTHER

What type of percentages would these various classifications reflect of our LTS community?

I would also love to know how many of us are partnered, widowed, men versus woman, divorced, how many divorces (lol silently), alone, working,....etc....

Does anybody really care?

After my migration into the ObamaCare system...my health is still good...but now I am questioning if I can even afford healthcare even though I have survived for so many years.

What other kind of statistics would be fruitful for us in knowing?

LTS per state....I would love a comparison of of LTS stats with other countries around the world.

At times I have "wished" that I have been diagnosed with AIDS, which defeats the real fight for an individual to stay healthy.

Have any of you determined how much your meds and medical tests have cost or what the value of the drugs that flowed through our system?

I would love to expand on this topic.

How does confidentiality affect us NOW?

 

[leatherman]

I have read one article stating how many LTS individuals live in the USA today....but the numbers slipped from my memory.

There was a report (posted in Poz a couple yrs ago called "older and wiser" page 28
http://www.poz.com/articles/older_and_wiser_2791_24349.shtml) where they estimate that there's only about 50k hiv+ people left from the "old days". That's not too many of us when you consider that number is spread across all the states.

seeing as how they believe they have overestimated how many people are infected in the USA (800k-850k instead of 1.2 million), maybe this estimate is less also . . . as it is only an estimate.

Is there a need or a drive for an LTS person to be classified:
HIV+
AIDS
OTHER

of course we're HIV+ but only those who have had AIDS have that label. Although a lot of people hate the label, that label ensures doctors look more closely at issues due to the patient having such an impaired immune system and often allows for more benefits and services. Even though I lived with an AIDS condition for 15 years, I simply say that I'm HIV+. and for god's sake, don't say "I am HIV". HIV is a disease; while we are just people living with that disease. (sorry. that was part of a leftover facebook rant LOL)

What type of percentages would these various classifications reflect of our LTS community?

I would also love to know how many of us are partnered, widowed, men versus woman, divorced, how many divorces (lol silently), alone, working,....etc....

Does anybody really care?

I wonder these same things

now there are those "Let's Kick ass (AIDS Survivor Syndrome)" people over in San Fran (and a couple of other places I think) (http://letskickass.org/hiv/) but, of course, as one of the first focal points of the epidemic, it's only natural for areas like that to have more LTSes and the advocacy for their issues.

maybe Tez and the HIVLSTAD (HIV Long Term Survivors Awareness Day) crowd will collect that kind of data. It certainly sounds like a project that would fit in with their advocacy message.

LTS per state....I would love a comparison of of LTS stats with other countries around the world.

when I left my area in Ohio 7 years ago, I was the only person I knew who had survived. (that was a lonely time) But when I moved to SC, I was amazed to find several dozen LTSs. Of course, most of us had lived elsewhere during the worst parts of our time living with HIV. I point that out because SC has always had a horrible state government and health care system. Although DHEC and SC Ryan White are now very active and progressive towards HIV prevention and treatment, I assume that all the LTSes are from out-of-state because the ones who could have been here from SC died back in the day.

Knowing where we all are would certainly be interesting. But someone having all that data could be a huge privacy breach. However, as we are the most-tracked patients in the world, isn't this information probably already out there? It's just not collated and published.

At times I have "wished" that I have been diagnosed with AIDS, which defeats the real fight for an individual to stay healthy.

can I be honest? You don't know how many times I wish a lot of people had been diagnosed with AIDS... and maybe even hospitalized. Not because I want anyone to ever be that sick of course, but because having that experience of owning up to your own mortality certainly puts everything in it's place.

People are always telling me in these forums and in RL, that I'm such a positive upbeat person; yet I don't feel that way at all. Right now, in May, I'm "celebrating" the 9th anniversary of my 2nd long term partner and the 22nd death of my first long term partner (that's today matter of fact), so no, I'm not a positive upbeat person at all. However what I do know from being in the hospital on my 36th and 38th birthdays, with doctors telling me I was about to die, is that any day I'm not in the hospital, well that's a GREAT f-ing day!!! This year turning 54, I wasn't all doom-and-gloom about getting older. I was freaking happy as hell because I haven't been in the hospital for 19 years (minus that horrible pineapple allergic reaction last oct; but that was only in the ER not the actual hospital-hospital LOL)

So when I read about the peeps worried about the meds and stuff (I missed a dose, am i going to die? I took it 2 hrs late, did I become resistant? the health department spoke to me to do contact-tracing. Somebody might think terrible things about me, if they know I was poz.etc), all I can think is that they just don't know how bad it could be and how lucky they are. Overwhelmed by a diagnosis, lack of knowledge, and second-hand stigma, it's just hard for them to understand they're worried about "first world problems" LOL

Have any of you determined how much your meds and medical tests have cost or what the value of the drugs that flowed through our system?

a lot!
23 yrs of med is 276 months at an average of $3200 a month is $883,200 + 9 days of hospitalization means maybe $1 million and a half dollars to get me through 25 years from 29 to 54.

hmm. in the grand scheme of things, a mill-and-a-half isn't too bad a deal I do hate to think about the price tag though if I live to be 99 like my grandmother. LOL

[flashdance]

Wow, Leatherman!! (I tend to wake up between 2-6AM and my brain tends to work better then...and new questions and statements emerge)

I like your "copy and paste" method of response. My responses or follow up reads more like a mish mash.

Definitely the kind of response that I wanted to see.

Just reading your response once...I was not surprised but saw how "sensitive" we become when "labeled" or "classified" and the terms we use to describe our experiences.

Just think what information the drug companies could provide.

One thing I noticed you did not respond to was how other countries compare. Maybe I am more concern about other countries because this freaking election scares the beejeesus out of me...and if the Netherlands, Canada, or Denmark would take me....then maybe it is time to go. LOL

Personally, I have lived in Illinois and was an state "consumer" advocate up until 2010. Illinois was a good place to live being poz...now....egads, I wonder if there was a ranking of "Best state to live a poz life" Illinois would have been #1, or #2 or #3...and now slipped to #16 or so.

And I do not ever want to make any one feel more "down" about things...but I feel so weak and vulnerable mainly because I want more information that states what we have experienced in numbers...and stats....because you kind find more data with cancer survivors. Yeah, I am healthy....popping pills at the rate we experience...it sure would be nice to get the amount of hugs from others in comparison to a friend that just recently experienced a successful battle against Non-hodgkins Lymphoma.(sp).

Then I also watch a sister of mine experience severe issues for care and services when she was diagnosed with transverse myelitis.

Just think of the crazy conversational avenue I just opened up with my few words.

The last couple of years...KICKASS from San Fran/Cali and a bit from NYC...tried to expand their outreach into other communities. I started to have a bit of shining hope but then instead of being brought into a new clan....a few things developed and I wondered if my energy would be sucked from me to better their own devices instead of tapped to assist me in continuing my poz life. 

Today I am visiting my FIFTH HIV specialist. I have only changed doctors because of their retirement....moving from one locale to another....and this last change due to what insurance pays for which specialist.

Another concern I have is losing this daily battle because now I worry if I can even afford my health care.

Today is the first day of an 11 day vacation from work...and after doc business today....I will be seeking some fun with friends in Chicago.

I am still going to try and collect as much data...because when you live a life with questions...seeking answers is a drive to continue.