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Author Topic: getting meds thru ryan white  (Read 1531 times)

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Offline gregftl

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getting meds thru ryan white
« on: August 10, 2007, 05:34:40 PM »
i live down in broward county. i was wondering if anyone else out there gets their meds thru ryan white instead of ADAP? due to a idiotic mistake on the part of one of the eligibility workers down here in 2002.....the state of florida thinks i won the illinois state lottery back in 2001 so i'm blocked from the state from receiving any adap services. when i took in my income tax forms as proof of income (since i'm self employed) the worker was looking over my state of illinois income tax. my tax accountant put my income on a line titled "other income". that is the only place to put self employment income. underneath that line in very small print it also says "ALSO include any lottery winnings." so based on that....she thought i won the illinois lottery, then went on to tell everyone else there and the state of florida before actually contacting the state of illlinois to get any proof since  i claimed i hadnt. however i am able toget my meds thru ryan white....along with other meds. before this happened i never knew u could get meds thru ryan white so i was wondering if anyone else out there does too. they also told me they give people over the adap income cutoff meds thru ryan white. even though i've gotten letters from the illinois state lottery stating i never won it and forwarded it to the state of florida's adap dept they continue to refuse to remove the block from my name and social security number. but hey....i only have to go in once a year to do ryan white for my meds as opposed to every 6months for adap. i have a strong feeling though eventurally since the state has this block on me for 20yrs starting back in 2002 that this is going to come back to haunt me somehow. i've gotten advocates, case works, broward county aids program supervisors to all try and help me get this block removed,  but the state wont budge. this is a totally backwards state i hate it and i wish i could move from here. back in 2002 when they thought i wont the illinois lottery they refused me meds. until i got an advocate that helped me get my meds thru ryan white. i mean isnt this illegal? if they ever try to take my meds away from me again, even though i'm actually elegible for both the adap and ryan white prgrams isnt this against my constitutional right to life? if worse comes to worse does anyone know if this is an issue worthy of taking to court?

thanks
greg

Offline thunter34

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Re: getting meds thru ryan white
« Reply #1 on: August 10, 2007, 06:15:47 PM »
you've posted about this before, haven't you?  it seems familiar to me.  if so, sorry to hear that it is still going on.  i'll have to defer to the more legal eagle types here for their imput.  good luck.
AIDS isn't for sissies.

Offline Andy Velez

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Re: getting meds thru ryan white
« Reply #2 on: August 10, 2007, 06:47:15 PM »
Have you tried contacting your Congressional representative and Florida senators? Also whoever is the head of the Florida Dept. of Health? And any other top officials you can think of. The higher you go -- the better, because underlings either have no power or no brains. Not that it's guaranteed upper level will have brains, but you're more likely to get someone who can actually make a difference.

Also, have you contacted any ASO to get help with this?
 
If you write to any of the above officeholders, send the letters registered and return receipt requested. It costs $, but it's worth it because someone actually has to sign for them and you create a paper track. This is kind of idiotic bureaucratic stuff is friggin' enraging!

Lastly and actually I think you should start with this, how about contacting any local tv station and in particular whoever seems to do health-related reporting. Ditto any newspapers in your area. A good embarassing story on the Five O'Clock News or in a newspaper can work wonders. Especially when it's a classic screwup like this. 

In sympathy with you on this one. Please keep us posted on how this goes.

« Last Edit: August 10, 2007, 06:50:52 PM by Andy Velez »
Andy Velez

Offline gregftl

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Re: getting meds thru ryan white
« Reply #3 on: August 10, 2007, 08:06:22 PM »
thanks for your reply. what is an ASO?

yah i've contacted the head of the florida dept of public health couple of years ago. he got back to me a couple of days later. told me i was not blocked from adap. but then each year when i go in to re-apply......i'm told tallahassee has me blocked. it's like they are looking at two different computer systems. we'll see what happens when i go in for my eligibility next friday. i dont care which program i get into adap or ryan white as long as i get my meds. i was told the last time i had an advocate get my meds for me that they could never deny me meds no matter what. the frustrating part is.....everyone working in the elegibility office now is new so no one knows my entire store except for what is in my file. i've contacted workers that used to be there that were transferred into different divisions......well..the two that started and caused this fiasco and they refuse to call over there and explain things to the new people so they know what to expect. they said they didnt want to get involved. hello, you already involved yourselves by screwing me over in the first place by mistakenly telling everyone i won the lottery without even calling the state of illinois to get proof. these people down here are something else. so freaking lazy. so i'm doing all the calling and email writing myself now. i figure if u want things done right do it yourself. i've even contacted the state of illinois lottery dept to get another letter from them stating i never won the lottery. the person who used to work at the pharmacy told me she was unsure if the original letter from illinois was in my elegibility file. i'll take that as a no. this is very frustrating and the real bad part of this all is all these people over at the pharmacy think it's hilarious. the person i emailed today that used to work in elegibility said in her email and i quote ..."yes, the new people will get a kick out of your drama. it is quite a story". she should be ashamed of herself and embarrassed that she was one of the ones who created that "story". where the crap is the compassion here. these people are playing with people's lives. now i'm not trying to discriminate when i say this but these positions, in my mind, should be filled with people living with hiv. not straight,  black, and hispanic women. i was told by a woman in the aids program offices here in broward county several years ago that as a gay white male.....it is harder for me and the people treat u more suspiciously. at least down here. geez man if i won the lottery why the crap would i even deal with these people unless they think i'm some sort of miser or something. they need people in positions like this that can relate to the people they are dealing with.....not people that have no idea what it is like to live with hiv and all it's related bullcrap. the power these idiots hold over people's lives is way too much for any one person to have. the literally are dealing with situations of life and death here. bad part is they really dont comprehend that! i've had hiv for 7yrs. take away my meds.....i probably wouldnt last 2yrs. i've taken the same hiv meds now for 7yrs. i've never had to switch. luckily over the years i've accumulate about 3months of backup meds by calling in my refills a few days earlier than the previous month. so if i do have trouble that gives me time to fight. as a last resort i'd have to go do a study and change my meds. i do not want to have to do that. i'll take them to court and call the tv stations like u suggested before i make people that are incompetent try and change my life for the worse.

Offline Lisa

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Re: getting meds thru ryan white
« Reply #4 on: August 10, 2007, 08:16:52 PM »
...an ASO stands for Aids Service Organization, and it sounds like you have done quite a bit of legwork on this.
I'm with Andy on this one....go political, and public.
No Fear  No Shame  No Stigma
Happiness is not getting what you want, but wanting what you have.

Offline gregftl

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Re: getting meds thru ryan white
« Reply #5 on: August 10, 2007, 11:16:41 PM »
yah they are messing with the wrong person with me here. i dont lay down and let people walk all over me and take away my legal rights and the right to obtain services my tax dollars pay for. i'll do whatever it takes...no matter how drastic to get what i deserve.

i'm on the same meds since i tested poz 7yrs ago. combivir and viramune. last labs i had 1027 tcells and undetectable. both liver enzyme results were at 30. cholesterol at 105. tryglicerides at 120. i refuse to let them take away these meds that work so well for me!
« Last Edit: August 10, 2007, 11:24:21 PM by gregftl »

 


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