Florida ADAP/Ryan White

[gregftl]

Well.....I'm officially screwed! I've been living in Ft lauderdale, FL since the end of 2001 and had been getting my HIV meds thru adap for the first year I lived here. Then I started making a bit over the 300percent poverty level and they started enrolling me in Ryan White to get my Meds. That's what they had been doing here--- everyone 300percent and lower gets into ADAP for their meds and all others over Ryan White. Well, today I go in to pickup my meds from the county pharmacy and was handed a form saying eligibility for Ryan White would be changing on March 1st and that the income for Ryan White would also have to be 300percent or lower. First that doesnt make sense why have two different programs for medication dispension if now everyone has to be 300percent or lower? If you are 300 percent of lower u qualify for ADAP and dont need Ryan White. So pray tell me who the crap is gonna get their meds thru Ryan White? This state is so backwards and now, unless they change their rules again.......after my 3 month backup supply of HIV meds runs out it looks like I am done. But yet illegal aliens waltz up in there and only have to provide a letter of support and medicine is practically thrown into their laps! NO fair! Here I am a legal citizen playing by the rules......paying my taxes for this program and I am the one now it looks like is going to be left out. Not only to mention the fact for the past 7yrs I've had to jump thru hoops to get my elegibility cleared each and every year. Anyone else on here live in Broward experiencing this rule change and having it affect them??? Anyone out there got any advice for someone who is about to lose their meds and cannot afford to pay for them? I have been on the same meds (combivir and viramune) for almost 8yrs now and do not want to switch by having to do a drug study. I have no side effect and am extremely healthy but it seems the system wants that to change!

[Matty the Damned]

But yet illegal aliens waltz up in there and only have to provide a letter of support and medicine is practically thrown into their laps! NO fair! Here I am a legal citizen playing by the rules......paying my taxes for this program and I am the one now it looks like is going to be left out.

Illegal aliens notwithstanding, you might take some comfort from knowing Florida has advanced in the last couple of days.

MtD

[Jody]

Greg...I know the system can be frustrating dealing with all this red tape...Hopefully one of the folks down in Florida- Ray, Jim or someone else can help you manuever your way around...Do you have any case worker, an AIDS service organization to assist you?...Writing to a congressperson can also open some eyes.

Good luck and let us know how it goes, no sense wasting your energy on who is getting what, just in trying to get your situation straightened out.

Jody

[gregftl]

I've gone the case worker route.....contacted the heads of the AIDS organization but they all say it's up the the people at the health department and their rules. I really find it unfair I was re-authorized for Ryan White for my meds last August and it is good for a year. Yet they change their rules midstream.....6months from my expiration and expect me to redo it on such short notice. The least I think they could do is let me finish out my current Ryan White eligiblity with the rules that I agreed to and everone signed off on back in August! Seems like a contract that they are trying to change before it ends and it is extremely unfair. Yes I'm hoping someone else from Broward county reads this thread and can offer some appreciated advise.

[beaubrent]

When I ran up against this problem on the poverty level, a very clever lady at the ADAP office directed me to contacting the pharmaceutical company directly to enroll in their program. Some of these big companies, like Gillead, have their own "poverty" limit that goes up to 350% or more!

I recommend trying that. You can start at this part of the Access Project page to find your drug company and their contact info for the program.

http://www.atdn.org/access/pa.html

[J.R.E.]

Hello Greg,

I wish I could give you some advice. But never utilizing ADAP or Ryan White, I am not qualified to answer. I do believe it varies county to county. I am up here in Pinellas county.

It really angers me that you have to go through this. I am surprised, considering the fact the Broward County ( unless statistics have changed) has the fastest growing number of HIV infections in the Country.

I know this topic has been discussed before.  Joe Kilfoile, brought it up here March 9th ,07 :

http://forums.poz.com/index.php?topic=10074.0


I also ran across this article from 2006 . I know it doesn't do much good, perhaps you can get some names from those involved in this article, and try getting in touch with them.
Apparently Adap/Ryan white changes in March of each year ( or at least it did in March of 2007 also)


http://www.natap.org/2006/newsUpdates/092506_04.htm



The advice that Andy Velez, gave you in this thread still stands. I would try very hard to be contact with the state representatives :

http://forums.poz.com/index.php?topic=14570.msg181627#msg181627


Also, take Beaubrent's advice and try contacting the drug companies. See what results you can achieve through them.

Also, try this site And see if any information can be helpful to you :

http://www.needymeds.com/

Wish I could be more helpful, Stay in touch and let us know what's going on.


Take care----Ray

[gregftl]

Trust me the first thing I did was contact the drug companies. Combivir and Viramune are what I take and it's 35,000 dollars cut for both of them. Not do-able for me. I've also written my senators and congressman several times in the past b/c this has been an ongoing issue with me for many years but not once have I received a reply. Guess that's what u get when you live in a red state lol. According to a case worker at the pharmacy and the person that's the head of patient something or other she told me they are supposed to go by adjusted gross income when figuring your income. But everyone has a different way of doing it when u go in and some are knit picky and some arent. It's like everyone seems to have been educated by a different person. If it's adjusted gross income they go by then i'm ok when I got in March 17th to try and get into ADAP. Oh...i'm self employed btw. If they nit pick my deductions then perhaps I might not get in. The whole reason I started getting my meds thru Ryan White instead of ADAP in the first place was b/c of an misinterrpretation of my income taxes by this worker back in 2002. I had just moved here from Chicago (where things were much easier) and I happened to not only take them my federal taxes but also my state income taxes. On my state income taxes there is only one place where self employed people can put their income. It's a line titled "other income". This line also has below it "also include any lottery winnings". Keyword also. Well the worker took that as I had won the Illinois State lottery blew the whole thing out of proportion and took it to her supervisor then they informed the state. The idiotic part of this was I also had a 1099 with me that had the same amount on it. You dont get 1099's for lottery winnings i'm assuming. They just couldnt comprehend it. I was blocked for 20yrs  b/c the idiots thought I had actually won it and was being paid out for 20yrs! I got an advocate that worked for the county to help me she contacted the Illinois state lottery even got a letter from them saying I had no lottery winnings and she submitted it to the eligibility workers. That was in 2003. Yet they continued  to put me in Ryan White b/c they kept telling me the state wouldnt unblock me. I contacted Tallahassee both in 2006 and last august and they told me the block was removed. The person at the local office last wednesday told me that it wasnt ....and of course my letter from the lottery people was no longer in my file. The eligibility workers just didnt want to deal with is and said "oh honey it's just easier to get into Ryan White that way u only have to do it once a year instead of every 6months with ADAP". Well....I kept telling them we better get this resolved or I felt this was gonna come back to bite me in the ass one of these days. That day has come. I got another letter from the Illinois lottery saying I never won the lottery and have to take it in AGAIN when I apply for Adap on March 17th. I already gave the office a copy of it and asked them to resolve it before i go in do do ADAP but I doubt that will happen.  I'd laugh at this situation b/c it is so stupid but this is my life here we are dealing with. But this is Florida! One person says one thing.....and another person tells me another. I'm tired of it. We need socialized medicine in this country but that is another subject!

[Dachshund]

Good luck to you because unfortunately Ryan White/ADAP are not contractual. What might have applied on Monday may change on Tuesday depending on the lawmakers making the laws and supplying the budgets. I make ten dollars over what is allowed for qualifying and I'm shit out of luck. If I can't afford my meds making 25,000, how in the hell do I afford them making 25,010? that's why I stay as current and knowledgeable as I possibly can. The way the wind is blowing I predict more cutbacks in the future and I want to know what I need to do before that happens.

[gregftl]

Well...luckily they have given us all a 6month extension while they decide what to do with this proposed change. There has been alot of public outcry which is helping. So at least I know I have at least 6 more months of meds that i have been on for 8yrs. If things dont change and they arent lenient when looking at my tax returns and allow business deductions from my self employment income like they say they will..........then it looks like alot of us will be enrolling in drug studies down here. It's really a shame too b/c I have been on the same meds since 2000 and have never switched. What a great country we live in where we have to beg for our lives!