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Author Topic: Ryan white funding JERKED OUT FROM UNDER ME !  (Read 22699 times)

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Offline weasel

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Ryan white funding JERKED OUT FROM UNDER ME !
« on: March 11, 2010, 05:23:32 PM »


   Well Here in Southern Missouri Whistle Blowers get screwed !

   I got  OUTED by the HEATH Dept !

   They sent out a flyer  with HIV/ STD  on the  flyers outside ! IN RED LETTERS !!!!!!!!!!!!!!!!!

I LIVE IN A TOWN OF 57 PEOPLE !!!!!!!!!!!!!!!!

   I got Pissed and called ,they  said  it was a mistake !

 Then  three weeks later  they   JERKED  my   Ryan White  funding . Stating  I indangered

      The CASE WORKER on the phone AFTER  working HOURS    FORTY miles AWAY !

  I am trying to get reinstated !   The Veterans Association did not know why I was upset !

 She even said I was rich !    $ 15,000.  a year   RICH ???????????????????????

 Now I will have to hire a lawyer IF i can find one !

 My AIDS DOCTOR said it was Federal and Missouri could NOT just throw me out !

I am very Pissed !   

THEY OUTED ME !!!!!!!!!!!!!!!

THEY SENT A PLEASE FORGIVE US LETTER !

THEN  FUCKED ME BIG TIME !

NOW I WILL FIND IT HARD TO GO TO SAINT LOUIS  TWICE A MONTH !

IT IS A 250 MILE TRIP ! 

I really do NOT think one  little  Secretary should be able to throw out an AIDS VICTUM !

At the GROUP in Saint Louis some JERK said I was a consummer of AIDS !

GOD bless me I was ready to deck him !

I am not a CONSUMMER . I'M BEING CONSUMED BY AIDS !

                         STILL PISSED ,
                                                     CARL
" Live and let Live "

Offline Theyer

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Re: Ryan white funding JERKED OUT FROM UNDER ME !
« Reply #1 on: March 12, 2010, 10:12:08 AM »
Carl,

I am not surprised you are so angry, the events are awful, I wish you all the best for channelling that anger and getting even, take good care,
t
"If we can find the money to kill people, we can find the money to help people ."  Tony Benn

Offline denb45

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Re: Ryan white funding JERKED OUT FROM UNDER ME !
« Reply #2 on: March 12, 2010, 11:37:53 AM »
15,000 a yr. is POVERTY at least in the State of New Mexico it is, if you make that here, you won't get Medicaid, QMB, or Food Stamps, however you do get (Rental Assistance,HUD Sec eight), Ryan White, and ADAP   Carl.......FIGHT FOR THIS, if you still qualify for this, if you do not, ask them WHY you don't and also tell them to explain to you WHY you don't, this just doesn't sound correct to me, that you do not at least qualify for Ryan White or ADAP :(
« Last Edit: March 12, 2010, 11:46:28 AM by denb45 »
"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Offline madbrain

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Re: Ryan white funding JERKED OUT FROM UNDER ME !
« Reply #3 on: March 12, 2010, 01:45:36 PM »

   Well Here in Southern Missouri Whistle Blowers get screwed !

What whistle blowing are you referring to ?

Quote
   I got  OUTED by the HEATH Dept !

   They sent out a flyer  with HIV/ STD  on the  flyers outside ! IN RED LETTERS !!!!!!!!!!!!!!!!!

I LIVE IN A TOWN OF 57 PEOPLE !!!!!!!!!!!!!!!!

What did the letter say, and did they name you in it ?

Quote
Then  three weeks later  they   JERKED  my   Ryan White  funding . Stating  I indangered

      The CASE WORKER on the phone AFTER  working HOURS    FORTY miles AWAY !

Did they put that in writing ?

Quote
  I am trying to get reinstated !   The Veterans Association did not know why I was upset !

 She even said I was rich !    $ 15,000.  a year   RICH ???????????????????????

 Now I will have to hire a lawyer IF i can find one !

http://www.dhss.mo.gov/HIV_AIDS/HIVMedications.pdf
It says you are eligible for ADAP in Missouri if your income is below 300% of the federal poverty level, which is $10,830, ie. up to $32,490 . You are well within the income qualifications.

Quote
My AIDS DOCTOR said it was Federal and Missouri could NOT just throw me out !

It is a funded by both federal and state dollars, and it is administered by individual states.

Offline blackwingbear

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Re: Ryan white funding JERKED OUT FROM UNDER ME !
« Reply #4 on: March 12, 2010, 04:29:43 PM »
   Well Here in Southern Missouri Whistle Blowers get screwed !

It's reasons like this that I severely hesitate to ask any questions that could possibly be construed as being difficult or challenging at the clinic I attend. I begrudgingly take the medicine they give me me, do what they tell me, nod my head, be polite and save any questions or comments I have for this forum or other sites on the internet. Since "stretching" meds or going off of them can cause resistances, not to mention the assorted problems it would cause my system, I can't risk pissing someone off. Sadly, they have people in my situation right "under their thumb".
It's all a sham. Politics is a big game, same as the media - and same as religion. The point is to distract & control. If we're looking at what they tell us is the "big issue", we're not looking at what they are doing. In time, there will be different causes and different minorities to pick-on. All in the name of keeping the system going, and the people distracted.

Offline Miss Philicia

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Re: Ryan white funding JERKED OUT FROM UNDER ME !
« Reply #5 on: March 12, 2010, 04:42:29 PM »
Carl, I'm not really clear on exactly what happened to you from your first post, but I hope someone can help you get this sorted out.  The whistleblower part and sending out fliers and outing you didn't make any sense to me, but maybe either you or someone else here can help me understand it.

Clearly $15,000 income/yr would be under any states cut off, even the worst ones. (at least I think so).

Is there a legal entity in Saint Louis that works with an ASO there to offer you pro bono services?  We have that here. 

If you didn't have a month of meds saved up then I'm sure this will be stressing you to no end, and maybe if you can state what meds you are on some of us here can send you some extra supplies to help ease those worries.
"Iíve slept with enough men to know that Iím not gay"

Offline denb45

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Re: Ryan white funding JERKED OUT FROM UNDER ME !
« Reply #6 on: March 12, 2010, 04:46:57 PM »
It's reasons like this that I severely hesitate to ask any questions that could possibly be construed as being difficult or challenging at the clinic I attend. I begrudgingly take the medicine they give me me, do what they tell me, nod my head, be polite and save any questions or comments I have for this forum or other sites on the internet. Since "stretching" meds or going off of them can cause resistances, not to mention the assorted problems it would cause my system, I can't risk pissing someone off. Sadly, they have people in my situation right "under their thumb".

Well yes, most all ASO's operate that way, if you don't follow the rules (whatever they may be) they will cut-you-off, and not pay for ANY, of whatever it is you get from them, it's a 2-way-street, not a one-way FREE-FOR-ALL, here in New Mexico, you have to be available every month (when they call for a follow-up) also, you have to do a 4 month FACE TO FACE with your case worker, as well as an annual re-enrollment to keep your benefits going, without ANY gaps, if YOU fail to do any of the above, then you leave them NO CHOICE, and there are lots of others and more SICKER people than you are, as funding IS and can be VERY LIMITED  :D
« Last Edit: March 12, 2010, 04:56:38 PM by denb45 »
"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Offline blackwingbear

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Re: Ryan white funding JERKED OUT FROM UNDER ME !
« Reply #7 on: March 12, 2010, 04:51:11 PM »
here in New Mexico, you have to be available every month ( when they call for a follow-up) also, you have to do a 4 month FACE TO FACE with your case worker, as well as an annual re-enrollment to keep your benefits going, without ANY gaps

Yes, about the same here - and I don't mind that at all.
It's all a sham. Politics is a big game, same as the media - and same as religion. The point is to distract & control. If we're looking at what they tell us is the "big issue", we're not looking at what they are doing. In time, there will be different causes and different minorities to pick-on. All in the name of keeping the system going, and the people distracted.

Offline weasel

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Re: Ryan white funding JERKED OUT FROM UNDER ME !
« Reply #8 on: March 12, 2010, 04:56:32 PM »


 As  some of you know I live in a town of 57 people !

 The heath dept. sending HIV/STD  Meeting  invitations  ARE OUTTING  people !

  Unlike ALL the  Churches flyers , This one had my full name and address !

  Half the people in town work for the post office .

  It has happened before that  someones  car and home have been burned for having  HIV/AIDS !

  The clerk at the health dept KNEW of the situation and still  decided to SAVE MONEY on and envelope !

  I will wait  for monday and check back and see IF  I can find some answers !

   I got really pissed with the health dept . and they got even !

   Not fare ! 

  I feel better  just saying it !

 I will NOT  loose  meds , but i loose dental and  travel pay , and when you live  125  Miles from the doctor

 that adds up .

 Thanks for caring , just knowing you all care gives me strenth to figure it out .

                                               I'll post WHEN I get my Ryan White back   

                                                              Carl
" Live and let Live "

Offline denb45

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Re: Ryan white funding JERKED OUT FROM UNDER ME !
« Reply #9 on: March 12, 2010, 05:03:22 PM »

 As  some of you know I live in a town of 57 people !

 The heath dept. sending HIV/STD  Meeting  invitations  ARE OUTTING  people !

  Unlike ALL the  Churches flyers , This one had my full name and address !

  Half the people in town work for the post office .

  It has happened before that  someones  car and home have been burned for having  HIV/AIDS !

  The clerk at the health dept KNEW of the situation and still  decided to SAVE MONEY on and envelope !

  I will wait  for monday and check back and see IF  I can find some answers !

   I got really pissed with the health dept . and they got even !

   Not fare ! 

  I feel better  just saying it !

 I will NOT  loose  meds , but i loose dental and  travel pay , and when you live  125  Miles from the doctor

 that adds up .

 Thanks for caring , just knowing you all care gives me strenth to figure it out .

                                               I'll post WHEN I get my Ryan White back   

                                                              Carl

Ok well then, you need to get your Ryan White re-instated then, $15,000 a yr. is STILL POVERTY, unless the requirements for the Sate of MO. is a lot less then THIS, that might be why it was taken away form you  ;)
"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Offline Moffie65

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Re: Ryan white funding JERKED OUT FROM UNDER ME !
« Reply #10 on: March 12, 2010, 06:33:08 PM »
First, the cutoff level this year is right at $30,000 for a single person.  This is a federal rule, and the state has no say in the guidelines that are stated in the contract with HHS.  Also the poverty level for Ryan White is determined by the Federal standard, and not Missouri.  She/he can go to hell if they think otherwise.

Now, for your case, it is obviously a "personal" situation with your case manager.

I will offer to interceed for you Carl, but you will have to give me a PM with all the particulars.  I will chat with the case manager, and find out what her/his story is, and if they are dangerously close to breaking the law, I will make her wish she didn't do that to you. 

For your assurance, I have already had four case managers, one supervisor, and one arrogant Doctor canned for breaking the law in this fashion.  I also know some of the people in HHS and will make it very painful for people in your little neck of the woods.

This I will do for you my buddy.
The Bible contains 6 admonishments to homosexuals,
and 362 to heterosexuals.
This doesn't mean that God doesn't love heterosexuals,
It's just that they need more supervision.
Lynn Lavne

Offline madbrain

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Re: Ryan white funding JERKED OUT FROM UNDER ME !
« Reply #11 on: March 12, 2010, 07:00:40 PM »
First, the cutoff level this year is right at $30,000 for a single person.  This is a federal rule, and the state has no say in the guidelines that are stated in the contract with HHS.  Also the poverty level for Ryan White is determined by the Federal standard, and not Missouri.  She/he can go to hell if they think otherwise.

It certainly looks to me like the ADAP income eligibility varies by state. For example in California anyone below 400% of the FPL is eligible for ADAP. A copay is required between 400% and $50,000 .
http://www.cdph.ca.gov/programs/aids/Documents/FSADAP.pdf

Offline denb45

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  • "1987 Classic Old School POZ+"
Re: Ryan white funding JERKED OUT FROM UNDER ME !
« Reply #12 on: March 12, 2010, 07:15:18 PM »
It certainly looks to me like the ADAP income eligibility varies by state. For example in California anyone below 400% of the FPL is eligible for ADAP. A copay is required between 400% and $50,000 .
http://www.cdph.ca.gov/programs/aids/Documents/FSADAP.pdf


Mad.......Carl didn't loose his ADAP, he lost his Ryan White, and Travel Voucher, that he needs to get to his doctor 125 miles away........
"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Offline madbrain

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Re: Ryan white funding JERKED OUT FROM UNDER ME !
« Reply #13 on: March 12, 2010, 08:19:15 PM »
Mad.......Carl didn't loose his ADAP, he lost his Ryan White, and Travel Voucher, that he needs to get to his doctor 125 miles away........

sorry, my bad.

Offline Peacock

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Re: Ryan white funding JERKED OUT FROM UNDER ME !
« Reply #14 on: March 13, 2010, 05:07:04 AM »
sending a flyer to someone about an hiv aids meeting-with the patients name and address on the flyer is unacceptable.
I work at a pathology lab and we send Hiv results to Doctors in confidential envelopes only, and we are not even allowed to fax the results to the doctors receptionist- or even to a Sr in the hospital ward- that is how much we value privacy and confidentiality. the point Im making is that with Hiv/Aids confidentiality is extreemly important and any organisation, private or government, should respect it.
My medical fund sends my medication to my local post office in a sealed brown box...I would be very pissed off if they placed any hiv/aids flyers on my parcel.
Peacock,Steve
Diagnosed 07/01/2002
Started Haart- 25/11/04 Cd4: 205 VL: 76'500
                      19/12/08 Cd4: 623 VL: UD
      26/03/12 Cd4: 497 Cd4%: 30.10 VL: UD
Combivir and Nevirapine(200mg) x1 of each-Am & pm
Not changed Meds since starting on HAART
Green Tea,Multivit,Selenium ACE,Folic acid,Vit C,Aciclovir 200mg 5x per day for 3 days-(ONLY when I have Shingles!)
100 percent adherence-with the help of a wristwatch!

Offline Ann

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Re: Ryan white funding JERKED OUT FROM UNDER ME !
« Reply #15 on: March 13, 2010, 01:52:23 PM »
Carl, as the flyer was sent to you by the Health Department, I'd be looking into whether or not this was a breach of HIPAA laws.

Good luck with this - it must be scary and frustrating.
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"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

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Offline weasel

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Re: Ryan white funding JERKED OUT FROM UNDER ME !
« Reply #16 on: March 15, 2010, 08:04:44 PM »


 Thank you all !

 I am trying to Muster enough  oomph  to call and see  WHEN  i will be reinstated !

 IF  it goes   BAD    I will take   Moffie up on his offer !

  The whole thing is so frustrating to me .   I am NOT a child !

 I have issues  , BUT they went over board on this !

               Again , thank you all !
                                                 Carl
" Live and let Live "

Offline denb45

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Re: Ryan white funding JERKED OUT FROM UNDER ME !
« Reply #17 on: March 15, 2010, 08:09:19 PM »

 Thank you all !

 I am trying to Muster enough  oomph  to call and see  WHEN  i will be reinstated !

 IF  it goes   BAD    I will take   Moffie up on his offer !

  The whole thing is so frustrating to me .   I am NOT a child !

 I have issues  , BUT they went over board on this !

               Again , thank you all !
                                                 Carl

Yes, well Carl..........you need that Ryan White, it pays for your dental, at least here in New Mexico it does , even tho it only has a $1,500 limit, but that's better than NOTHING at all , I'd be toothless
without it :)  Please keep us updated  ;D
« Last Edit: March 15, 2010, 08:13:22 PM by denb45 »
"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Offline Miss Philicia

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Re: Ryan white funding JERKED OUT FROM UNDER ME !
« Reply #18 on: March 15, 2010, 08:34:11 PM »
Well yes, most all ASO's operate that way, if you don't follow the rules (whatever they may be) they will cut-you-off, and not pay for ANY, of whatever it is you get from them, it's a 2-way-street, not a one-way FREE-FOR-ALL, here in New Mexico, you have to be available every month (when they call for a follow-up) also, you have to do a 4 month FACE TO FACE with your case worker, as well as an annual re-enrollment to keep your benefits going, without ANY gaps, if YOU fail to do any of the above, then you leave them NO CHOICE, and there are lots of others and more SICKER people than you are, as funding IS and can be VERY LIMITED  :D

I never see a case worker unless I was to.  Basically I get a form mailed to me around Thanksgiving that I fill out to prove that I still live at my address, xerox a utility bill, sign my name and that's all she wrote to stay on ADAP.
"Iíve slept with enough men to know that Iím not gay"

Offline Miss Philicia

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Re: Ryan white funding JERKED OUT FROM UNDER ME !
« Reply #19 on: March 15, 2010, 08:36:23 PM »
First, the cutoff level this year is right at $30,000 for a single person.  This is a federal rule, and the state has no say in the guidelines that are stated in the contract with HHS.  Also the poverty level for Ryan White is determined by the Federal standard, and not Missouri.  She/he can go to hell if they think otherwise.

Are you sure?  The cut offs in PA are different than in Maryland, New Jersey and New York.  Yes, they're based on a % of federal poverty level but it can be 300%, 350%, 400% etc.
"Iíve slept with enough men to know that Iím not gay"

Offline denb45

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Re: Ryan white funding JERKED OUT FROM UNDER ME !
« Reply #20 on: March 15, 2010, 08:37:28 PM »
I never see a case worker unless I was to.  Basically I get a form mailed to me around Thanksgiving that I fill out to prove that I still live at my address, xerox a utility bill, sign my name and that's all she wrote to stay on ADAP.

Not that easy here in New Mexico, just ask Mark, he knows  ;D My case worker, does a very good job of keeping track of things, he says, I'm very easy to get a hold of, unlike some of his other clients, he wished all of them were more like me, where as, I don't need that much assistance, and I'm not very problematic.. ;D every time he sees me he always says to me "is there anything I can do, are is there anything you need, I know you don't need much, but, I still have to ask you this"... ;)
« Last Edit: March 15, 2010, 08:46:35 PM by denb45 »
"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Offline weasel

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Re: Ryan white funding JERKED OUT FROM UNDER ME !
« Reply #21 on: March 15, 2010, 08:41:06 PM »


 Here in   Missouri   we get $1,000   for dental !

 BUT they pay travel !

 I hope I get it back

                                                  Carl
" Live and let Live "

Offline denb45

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Re: Ryan white funding JERKED OUT FROM UNDER ME !
« Reply #22 on: March 15, 2010, 08:47:51 PM »

 Here in   Missouri   we get $1,000   for dental !

 BUT they pay travel !

 I hope I get it back

                                                  Carl

Yes, and that is why YOU need this  ;D I cannot imagine what it would be like to travel 125 miles just to see a ID-Doctor  ;) I hope you DO get this back  ;D
« Last Edit: March 15, 2010, 08:53:13 PM by denb45 »
"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Offline denb45

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Re: Ryan white funding JERKED OUT FROM UNDER ME !
« Reply #23 on: March 15, 2010, 09:47:08 PM »
Are you sure?  The cut offs in PA are different than in Maryland, New Jersey and New York.  Yes, they're based on a % of federal poverty level but it can be 300%, 350%, 400% etc.

Well I guess I don't have to worry then, I'm 200% to 300% somewhere around that, so I was told, I'm not really sure what the cut-off is here in New Mexico, I'll have to ask Mark, I'm sure he would know this
Miss p..... aren't the requirements different in each State, what I mean is, in CALIF. I qualified for almost EVERYTHING, but, here in New Mexico, I don't :)
« Last Edit: March 15, 2010, 09:55:58 PM by denb45 »
"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Offline Miss Philicia

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Re: Ryan white funding JERKED OUT FROM UNDER ME !
« Reply #24 on: March 15, 2010, 10:04:49 PM »
If you ask me the cut-offs shouldn't be done state by state -- they should be done by an urban/rural formula.
"Iíve slept with enough men to know that Iím not gay"

Offline denb45

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Re: Ryan white funding JERKED OUT FROM UNDER ME !
« Reply #25 on: March 15, 2010, 10:08:32 PM »
If you ask me the cut-offs shouldn't be done state by state -- they should be done by an urban/rural formula.

Ahh, I think you may be right about that, if they just went by that alone, then nobody would qualify for anything  ;) I was never able to get any kind of Medicaid, as I made too much for that......that's why last yr. I lost that QMB part of that.....
« Last Edit: March 15, 2010, 10:14:39 PM by denb45 »
"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Offline blackwingbear

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Re: Ryan white funding JERKED OUT FROM UNDER ME !
« Reply #26 on: March 16, 2010, 12:46:25 AM »
If you ask me the cut-offs shouldn't be done state by state -- they should be done by an urban/rural formula.

With preferences to which?
It's all a sham. Politics is a big game, same as the media - and same as religion. The point is to distract & control. If we're looking at what they tell us is the "big issue", we're not looking at what they are doing. In time, there will be different causes and different minorities to pick-on. All in the name of keeping the system going, and the people distracted.

Offline Miss Philicia

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Re: Ryan white funding JERKED OUT FROM UNDER ME !
« Reply #27 on: March 16, 2010, 02:04:56 AM »
With preferences to which?

Cost of living is MUCH higher in urban areas... everyone knows this.  Why should the cut off in NYC be the same as in Ithaca?
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Offline blackwingbear

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Re: Ryan white funding JERKED OUT FROM UNDER ME !
« Reply #28 on: March 16, 2010, 04:33:16 AM »
Cost of living is MUCH higher in urban areas... everyone knows this.  Why should the cut off in NYC be the same as in Ithaca?

Considering in many areas, rural funding is practically non-existent as it is and that in many cases that is exactly where it is needed, this type of urban-centric thinking is counter-productive. While cost of living might be much higher, cost of meds ISN'T. I'm not indicating that the following statement is what you meant, but it is partially the "screw-the-hillbillies" mentality that allows HIV to grow rampant in rural areas.
It's all a sham. Politics is a big game, same as the media - and same as religion. The point is to distract & control. If we're looking at what they tell us is the "big issue", we're not looking at what they are doing. In time, there will be different causes and different minorities to pick-on. All in the name of keeping the system going, and the people distracted.

Offline weasel

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Re: Ryan white funding JERKED OUT FROM UNDER ME !
« Reply #29 on: March 16, 2010, 09:51:57 AM »
  @ Black WingBear ,
                            That IS a huge problem in Rural  Missouri and I am sure all Rural area's !

            Here there is virtually NO  education about HIV/AIDS !

         I think the case workers LIKE the fact  HIV/AIDS  is raising !

       It may be mean  , but I feel they enjoy  knowing THIER  jobs are secure !

        Missouri is the METH Capital of the Country !  Yet " THEY "  see no need  to  teach

        the basics of NOT getting  HIV/AIDS  !

        NOW  the " GOOD "  people are going after   POT  ::)

        It is all so backwards ...................................

                                                                      Carl
       
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Offline denb45

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Re: Ryan white funding JERKED OUT FROM UNDER ME !
« Reply #30 on: March 16, 2010, 10:56:35 AM »
The most assistance I could ever get form ANY ASO was ADAP & Ryan White Dental ,anything else just wasn't available to me due to income Level requirements, so, I'm really not in the know as far as what other help I could get  ::) is there any other benefits that anyone might know about, that I may be missing out on?
« Last Edit: March 16, 2010, 10:59:13 AM by denb45 »
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Offline Ann

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Re: Ryan white funding JERKED OUT FROM UNDER ME !
« Reply #31 on: March 16, 2010, 11:17:00 AM »
I wish I could gift the NHS to all of you in the States. It really breaks my heart how you all (even those with insurance) have to jump through hoops just to get basic health care. :-\
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"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline denb45

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Re: Ryan white funding JERKED OUT FROM UNDER ME !
« Reply #32 on: March 16, 2010, 11:35:03 AM »
I wish I could gift the NHS to all of you in the States. It really breaks my heart how you all (even those with insurance) have to jump through hoops just to get basic health care. :-\

It will only get worse Ann, I really don't see any light at the end of this tunnel anytime soon  :-[
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Offline Jeff G

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Re: Ryan white funding JERKED OUT FROM UNDER ME !
« Reply #33 on: March 16, 2010, 11:36:28 AM »
 My financial situation changed this last year but just one small part of it figured into the picture and cost me my medicaid benefits . It was a $68 a month pension my dad left me . It put me over the limit in my state by about $9 . I paid out over $600 last month in medical co pays and the bills keep coming . If health care reform becomes law I will see some relief soon .

Offline skeebo1969

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Re: Ryan white funding JERKED OUT FROM UNDER ME !
« Reply #34 on: March 16, 2010, 11:37:53 AM »
Considering in many areas, rural funding is practically non-existent as it is and that in many cases that is exactly where it is needed, this type of urban-centric thinking is counter-productive. While cost of living might be much higher, cost of meds ISN'T. I'm not indicating that the following statement is what you meant, but it is partially the "screw-the-hillbillies" mentality that allows HIV to grow rampant in rural areas.

  Great point!  I live in a county that is approximately a 2 1/2 hr drive from the city of Miami.  Here in Florida, when I used ADAP, you had to apply in the county you resided in.  I was originally going to an ASO in Miami and received many benefits from programs offered there.  In Miami I had access to: dental, food assistance, a nutritionist, a therapist, case managers, and gas cards were routinely given monthly.  Here in the county I live now, which is rural, there are absolutely no programs offered and unless you qualify for foodstamps no food for you.

  Two weeks after I moved here the ASO in Miami basically told me I could not go there anymore for treatment, because I had to use one up here in Highlands County.   There is one case manager here and from my dealings with him I learned that you better have all your records straight, because once you leave his office it was like your case  no longer existed.  In my city alone, there were 33 people who needed these services.  With a Cd4 count of 103 it took them 4 months to get me my first bottle of Atripla and that's with the knowledge that I had already been on it for 1 month.  My case manager did not seem to care one bit that I was out of meds, luckily someone assisted me by mailing me 3 bottles to get me through.

   In short, I was really amazed at the differences in services in two cities just 120 miles apart.

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Offline Ann

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Re: Ryan white funding JERKED OUT FROM UNDER ME !
« Reply #35 on: March 16, 2010, 11:43:15 AM »

It will only get worse Ann, I really don't see any light at the end of this tunnel anytime soon  :-[


I know. I don't see any light either. I actually get sick to my stomach sometimes when reading threads like this one. I think I suffer from a form of survivor's guilt. I feel guilty that I managed to find myself living in a country with socialised health care and don't have to worry about where my care is coming from.

I know all too well what that's like. When I was a young adult and still living in the States, I didn't have health insurance and lived in fear of something happening to me that needed medical attention. And that was when I was young, healthy and hiv-free. To be ageing and have hiv and no health insurance ... I can hardly even contemplate it. I really feel for you guys.
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"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline denb45

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Re: Ryan white funding JERKED OUT FROM UNDER ME !
« Reply #36 on: March 16, 2010, 11:45:03 AM »
Yeah Skee.......you really have to choose wisely just where to live now-a-days, moving to the wrong place
could mean the difference between life or death, feast or fem mine.....it's CRAZY the way they figure this formula in certain area of the country, somebodies doing something SLICK, and it aint right  :-[
« Last Edit: March 16, 2010, 11:48:21 AM by denb45 »
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Offline leatherman

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Re: Ryan white funding JERKED OUT FROM UNDER ME !
« Reply #37 on: March 16, 2010, 02:09:07 PM »
you really have to choose wisely just where to live now-a-days, moving to the wrong place
could mean the difference between life or death, feast or fammine
and it's not just ADAP or hiv funding, this sort of issue goes through a lot of social services. Speaking of "famine" while in Ohio, I received $174 in food stamps each month, which for some reason was $2 short of what the calculator on the fed website told me, but that was easy to live with. However in SC, they use a different forumla than the fed does (unearned income is not added to earned income, but is used later in the equation) and I only receive $90 a month in food stamps down here.

So now I'm living in a state where they only give half what the federal gov't allows in food stamps, where the state medicaid offers no dental or eye care, and where they are currently trying to cut ALL ADAP and HIV/AIDS funding (including all prevention programs). Thank goodness I moved in with my mom, or me and the dogz would have already had to have hitched a ride back up to OH just to have enough food to live.
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Offline blackwingbear

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Re: Ryan white funding JERKED OUT FROM UNDER ME !
« Reply #38 on: March 16, 2010, 02:22:45 PM »
Yeah Skee.......you really have to choose wisely just where to live now-a-days, moving to the wrong place
could mean the difference between life or death, feast or fem mine.....it's CRAZY the way they figure this formula in certain area of the country, somebodies doing something SLICK, and it aint right  :-[

Most of the money goes to urban areas, and rural areas get royally screwed - you basically have it "taught" to you that you are less than a human-being because you don't live in the Super-Megalopolis, and it just makes it all the worse that you have these city queens that would almost love to see all funding for rural areas cut. I don't know if they think this would increase the funding to their area (which it wouldn't)  or if they are simply that mean-spirited and hateful. Unfortunately the "screw-the-hillbillies" mentality is alive and well all across the country and many urbanites and suburbanites only perpetuate it.
It's all a sham. Politics is a big game, same as the media - and same as religion. The point is to distract & control. If we're looking at what they tell us is the "big issue", we're not looking at what they are doing. In time, there will be different causes and different minorities to pick-on. All in the name of keeping the system going, and the people distracted.

Online Joe K

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Re: Ryan white funding JERKED OUT FROM UNDER ME !
« Reply #39 on: March 16, 2010, 02:43:56 PM »
Most of the money goes to urban areas, and rural areas get royally screwed - you basically have it "taught" to you that you are less than a human-being because you don't live in the Super-Megalopolis, and it just makes it all the worse that you have these city queens that would almost love to see all funding for rural areas cut. I don't know if they think this would increase the funding to their area (which it wouldn't)  or if they are simply that mean-spirited and hateful. Unfortunately the "screw-the-hillbillies" mentality is alive and well all across the country and many urbanites and suburbanites only perpetuate it.

As much as I support an even distribution of services, rants like the above, do nothing to add anything constructive to the discussion. Why exactly do you insist that somehow "city queens" want to eliminate funding for rural areas? I have worked with both the state and federal government, concerning HIV services and the vast majority of the decision makers, happen to be straight, but what does that have to do with anything?

I might suggest, that if you really want to bring change, you seriously reconsider the tone of your dialogue. I once lived in the suburbs of Detroit, but I spent my time, working in the city, because they had little, while the suburbs had all forms of services. I could make the claim that all those "straight bigots" were to blame for the lopsided funding, but what purpose would that serve? Personally, I tire of reading your responses, where you insist that someone is always out, to stick it to the other person and for me, that's one sad way to look at life.

Offline Miss Philicia

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Re: Ryan white funding JERKED OUT FROM UNDER ME !
« Reply #40 on: March 16, 2010, 05:30:30 PM »
Considering in many areas, rural funding is practically non-existent as it is and that in many cases that is exactly where it is needed, this type of urban-centric thinking is counter-productive. While cost of living might be much higher, cost of meds ISN'T. I'm not indicating that the following statement is what you meant, but it is partially the "screw-the-hillbillies" mentality that allows HIV to grow rampant in rural areas.

How many HIV+ people are in your rural county?  How many are in the greater Philadelphia metropolitan area?  Seriously, I'm just curious.

The bottom line is that if you choose to live in a rural area you know you're going to have less services ( like no ASO for a dozen people in one town) and will have to drive a couple hours to find one.  That's just reality.

btw, I was priced out of NYC where I was diagnosed after 15 years of living there -- I purposely did the research to locate an affordable urban area with lots of medical resources, as well as ASO's, etc.  I doubt my rent is much higher than yours, yet I'm only 2 subway stops from my HIV specialist and ASO.  That was my choice.
« Last Edit: March 16, 2010, 05:34:10 PM by Miss Philicia »
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Offline denb45

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Re: Ryan white funding JERKED OUT FROM UNDER ME !
« Reply #41 on: March 16, 2010, 05:57:20 PM »
How many HIV+ people are in your rural county?  How many are in the greater Philadelphia metropolitan area?  Seriously, I'm just curious.

The bottom line is that if you choose to live in a rural area you know you're going to have less services ( like no ASO for a dozen people in one town) and will have to drive a couple hours to find one.  That's just reality.

btw, I was priced out of NYC where I was diagnosed after 15 years of living there -- I purposely did the research to locate an affordable urban area with lots of medical resources, as well as ASO's, etc.  I doubt my rent is much higher than yours, yet I'm only 2 subway stops from my HIV specialist and ASO.  That was my choice.
Miss P.... I did the exact same thing when I was priced-out-of-Calif. so I did the same thing you did, and found a urban area large enough to have a lot of services, so, I choose Albuquerque, NM, and I'm still here after 8 yrs. however Phoenix AZ. was my 2nd choice, and El Paso TX, was my 3rd choice.....I really didn't want to stray too far away from the southwest  ;D
« Last Edit: March 16, 2010, 06:06:08 PM by denb45 »
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Offline Miss Philicia

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Re: Ryan white funding JERKED OUT FROM UNDER ME !
« Reply #42 on: March 16, 2010, 06:07:15 PM »
I wish I could gift the NHS to all of you in the States. It really breaks my heart how you all (even those with insurance) have to jump through hoops just to get basic health care. :-\

The UK does do well, but not that well if you look at the number of yearly new infections.  Having only half the infection rate as the US, while good, isn't all that great in the large scheme of things.
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Offline Miss Philicia

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Re: Ryan white funding JERKED OUT FROM UNDER ME !
« Reply #43 on: March 16, 2010, 06:10:46 PM »
city queens

Weren't you just mocking people for calling other rural redneck hillbillies (though, of course, nobody said that) -- so there you go being a rank hypocrite.  Quelle surprise!
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Offline denb45

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Re: Ryan white funding JERKED OUT FROM UNDER ME !
« Reply #44 on: March 16, 2010, 06:54:02 PM »
Mikie.........I cannot even imagine what it would be like to be without food or the basic needs, as for myself, I never qualified for Food Stamps, HOPWA-Rental Assistance, the ASO food pantry, travel vouchers are anything else, other than ADAP & Ryan White, however I did volunteer at one before, and gave out what little Food they had to give, it was very disheartening to close the doors of the food pantry, when they run-out, and people were still waiting in line , that wasn't a very good feeling for me :'(
« Last Edit: March 16, 2010, 06:58:23 PM by denb45 »
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Offline leatherman

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Re: Ryan white funding JERKED OUT FROM UNDER ME !
« Reply #45 on: March 16, 2010, 08:36:48 PM »
the food pantry, when they run-out, and people were still waiting in line , that wasn't a very good feeling for me
oh my! That would be depressing.

Currently, I've been working 2X a month in my ASO's pantry; but it's not food, just the "taxable items". Thankfully, I haven't been back to a church food pantry since 1993 when the AZT was kicking my ass and Randy was very ill and nearing death, so neither of us were working. We were getting food from two Catholic churches up there in Ohio; but I'd be terrified if (without my Mom's help here) I would have to be visiting one of Baptist churches here in SC to get a food handout. After being in a Baptist school and church all those years, I just think I'd either be in for a heap of preaching and talking about changing my sinful ways or there'd be some sort of strings to getting them to help "my type". ::)

The bottom line is that if you choose to live in a rural area you know you're going to have less services ( like no ASO for a dozen people in one town) and will have to drive a couple hours to find one.  That's just reality.
Philly and Den, though I agree with that reality (less population = fewer services), do realize that it's not always a choice per se. Sometimes you have to live where you can.

After our pet store failed, Randy and I were too poor to move to Cleveland to have better access to HIV services. After Jim died and the aftermath, I did not even have the money to continue living in that smaller city of Canton. So now I'm living way out in sticks of a SC county, having to cope with the benefit differences between the two states because I have no other choice. I've just been too poor over the last 15 years to be able to "pick" where I can live to have better access to services.

(I tell you what. More than any health problem I've had from HIV, the poverty it has caused has been the much bigger burden. Well except that time when the PCP was killing me.  ::) :D )

They sent out a flyer  with HIV/ STD  on the  flyers outside ! IN RED LETTERS
by the way, I meant to ask this earlier. Exactly what kind of flyer was this?

Two weeks ago, I was volunteering time to sticker-n-stamp a newsletter that my ASO sends out. It was not an "internal" newsletter to clients; but an informative newsletter about the ASO and it's activities, mainly sent out to sponsors but also to people that signed up to receive it. It's a 6 page printed letter, folded in half, clearly showing the ASO's name, slogan, etc, and easily opened to read the content. Going out to Dr and Mrs. So-n-So, Dean Smith from the local college, Ki Sigma Delta House, a few local bank branches and even the dog grooming parlor just up the street from me.

Was yours the kind of newsletter sent to a client, and is that why you feel "outed"? Or are you more worried about the stigma you might/will receive within your area from just receiving any material about HIV or the ASO?

I was just curious about your situation after having sent out nearly 2000 newsletters easily identified with HIV information and my local ASO. I don't know whether it's a subject to bring up with my ASO about concealing the nature of the mailer or whether it would just continue to promote stigmatism by concealing the mailer. ???
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Offline skeebo1969

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Re: Ryan white funding JERKED OUT FROM UNDER ME !
« Reply #46 on: March 17, 2010, 03:21:35 AM »
Most of the money goes to urban areas, and rural areas get royally screwed - you basically have it "taught" to you that you are less than a human-being because you don't live in the Super-Megalopolis, and it just makes it all the worse that you have these city queens that would almost love to see all funding for rural areas cut. I don't know if they think this would increase the funding to their area (which it wouldn't)  or if they are simply that mean-spirited and hateful. Unfortunately the "screw-the-hillbillies" mentality is alive and well all across the country and many urbanites and suburbanites only perpetuate it.

LOL Wow, and I think the 2nd shooter was in the Lincoln's glove compartment.

The bottom line is that if you choose to live in a rural area you know you're going to have less services ( like no ASO for a dozen people in one town) and will have to drive a couple hours to find one.  That's just reality.

I wish they woud allow that in Florida.  When I moved up here my original intentions were to drive the 2 1/2 hours to see Dr.  Elena down in Miami.  They shot that idea down the moment they found out my address had changed.  The only thing here is the Highlands County health department.  It really disappointed me when I found out I had no options, damn ASO in Miami might as well been a pot of gold at the end of a rainbow.lol

« Last Edit: March 17, 2010, 03:58:28 AM by skeebo1969 »
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Offline blackwingbear

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Re: Ryan white funding JERKED OUT FROM UNDER ME !
« Reply #47 on: March 17, 2010, 06:40:20 AM »
Philly and Den, though I agree with that reality (less population = fewer services), do realize that it's not always a choice per se. Sometimes you have to live where you can. I've just been too poor over the last 15 years to be able to "pick" where I can live to have better access to services.

Something the wealthy will never understand.
It's all a sham. Politics is a big game, same as the media - and same as religion. The point is to distract & control. If we're looking at what they tell us is the "big issue", we're not looking at what they are doing. In time, there will be different causes and different minorities to pick-on. All in the name of keeping the system going, and the people distracted.

Offline Miss Philicia

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Re: Ryan white funding JERKED OUT FROM UNDER ME !
« Reply #48 on: March 17, 2010, 06:49:18 AM »
Something the wealthy will never understand.

Honey, I'm on disability -- I hope that wasn't aimed at me.  Rural folks have a gross misperception that only the wealthy live in cities, but then of course they also always mock the welfare queens that live there so there's a bit of cognitive dissonance.

If you don't like big cities (meaning you can't cope with it) then just spit it out instead of gussing it up in a bunch of bs.

I live in what I call an "OK" neighborhood of greying Italians and hipsters wearing skinny jeans.  My rent can't be much more than what you pay in a small town for a one bedroom.  I don't own a car, nor have I owned one in 20 years, and use public transportation.  I doubt you can say the same, so the combination of your rent and your car payment means you probably pay more in monthly expenses than I do.

Meanwhile I have access to much better HIV doctors and services.  See how that works?
"Iíve slept with enough men to know that Iím not gay"

Offline Dachshund

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Re: Ryan white funding JERKED OUT FROM UNDER ME !
« Reply #49 on: March 17, 2010, 08:18:56 AM »
Don't you just hate how all of those big city queers have stolen all of the AIDS resource money from their country cousins? Stocking our food pantries with champagne and caviar. I helped start and organize the first food pantry for people with AIDS in Memphis back in 85. This was done without federal, state or city dollars. We begged, borrowed or stole every dented can on the shelf. As money became available we were able to provide more and better quality of food and dry goods. At one point we provided groceries twice a week. Now because of economic necessity we can only provide one bag every two weeks. Yep, the AIDS impoverished are living the high life in the big city. Our food bank is named after my lover who died under the most horrific conditions in late 1985.

I know several people who have moved to the country because their disabilty dollars stretch a little further. Housing is usually much cheaper in the sticks. Unfortunately when you're poor, it's damned if you do, damned if you don't. It beats being homeless. Been there, done that.


 


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