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i was iagnose with AIDS 2 1/2 years ago...
      #476 - 03/30/00 05:32 PM

I was diagnosed with AIDS 2 1/2 years ago. It was a shock,
although it shouldn't have been, since I was fairly promiscuous
in the late '70s/early '80s. I guess I thought "it won't happen
to me." My greatest struggle has not been with medications --
except for the sulfas, I tolerate most drugs really well -- or
with getting a good doctor -- I think I have the BEST doc in the
world, he really cares, he's totally up-to-date on the latest
treatment options and risk factors, and he takes the time to let
me know he sees me as a PERSON, not just as a collection of
organs or a list of symptoms. What a pity more doctors aren't
like him. And I haven't had to struggle much with needing a
support group; my lover (he's HIV neg) has been wonderful,
standing by me through good times and bad times, and my friends
are supportive. No -- my REAL struggle, the struggle that
consumes hours of each day, every day, the struggle that causes
me more anger, frustration, stress and tears than anything -- is
the struggle to get good care through my $(*#&$&*#&*!!! Medicaid
HMO!!! I don't even know where to begin! The poorly-trained
service representatives who can barely speak English, and either
don't know the answer or give the wrong answer most of the time
-- after I've explained to them how to adjust their telephone
headset so the mike is in front of their mouth and I can at least
HEAR their incorrect replies!!! The supervisors who tell my
doctor something I KNOW is untrue, and then the supervisors'
anger when I go over their head to the HMO's administration and
get the correct information supplied to my doctor. How *dare*
these people be angry with ME when THEY made the mistake?!?!?!?
The HMO administrators who openly admit that the switch from
fee-for-service to HMO was made too quickly and as a result a lot
of mistakes are being made! The very WORST, though, is the
assumption by just about everyone at the HMO that because I'm
poor, I must be stupid, too!!! Gee, I guess it never occurs to
them that I might be a guy with a good college degree and,
formerly, a lucrative career, who was forced to use all my own
funds before Medicaid would start picking up the tab -- which is
exactly the case. They're condescending, patronizing, treating me
like a brainless idiot. Well, I could tell you where the idiots
are -- at the HMO! I've practically been forced to become a
full-time health-care administrator -- of my OWN health care!
Every referral request is challenged, no matter how routine, such
as for quarterly CD4 and viral load blood testing. Despite a
Federal mandate *ordering* the HMO to let AIDS patients keep
their current doc -- even a specialist -- as their primary-care
provider, I was forced to wage a three-month battle with the HMO
to force them to let me keep my doc: a battle that required
endless hours of reading ream after ream of contradictory
legalese; sending the HMO one letter after another spelling out
their responsibilities under the law, and finally having to
appeal to my Congressman! And even then, the HMO STILL tried to
"end-run" me by telling my doctor he'd have to go on capitation
and become a primary-care network provider -- in other words,
telling him he'd have to join their HMO!! Once again, hours and
hours of trying to get the correct information and getting eight
different answers from eight different people; indifference from
the state Department of Public Welfare, indifference from my
state senator -- until I finally tracked down the wording in the
statute that prevents the HMO from forcing my doc to join just to
be my primary-care doc. Then it was a breeze -- only a mere
matter of a WEEK of trying to find out which administrator at the
HMO to send the information to -- they weren't about to tell me
and make it easy!! The whole HMO experience has been one long
grueling nightmare. I can not believe that doctors and patients
don't rise up in a huge outcry over the incompetence and abuses
of these Medicaid HMOs. To add insult to injury, they're taking
taxpayer dollars intended *solely* for health-care for the poor,
and doing all they can to keep as much as possible as profit!
This is a crime, but I suppose no one takes any action because
it's just "poor folks" who're being abused and underserved. For

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