i am 40 years old and have had hiv for 12 years...

My name is Megan Noel. I am 40 years old, and have had HIV for 12
years. I had a Dr. by the name of Kenneth J. Blair for the 1st 7
years of my care. My husband, who is negative, has been fighting
with the community to get care for me ever since. Dr. Blair ended
up having a problem with drugs. He was so messed up during the
months of July 1994-September 1994, when I missed one
appointment, he fired me! I have not been able to get HIV care in
this community since. Aside from one physician, an Infectious
Disease Specialist, Dr. Bagwell. He took me on, and during our
1st meeting, gossiped to me about Dr. Blair, and how he was a
"quack", never sending his patients to see specialists. He told
me that Ken Blair took on all the problems of an HIV patient
until death! I was aghast to hear this coming from a respected
physician's mouth. I did not say a word. He promised to care for
me, and set an appointment for 3 months. This left me feeling
quite naked, as Dr. Blair was seeing me 1 time a week. I had good
insurance then. But I felt relatively OK, now that I had a new
doctor. Unfortunately, this was not to be the case for long. Upon
my 3rd visit, he told me I did not fit the profile for an HIV+
female. I had no opportunistic infections, My T-Cells were good,
and he didn't think he could effectivley treat me. He then handed
me a typed up letter that was back-dated a week earlier, stating
that for the sake of his practice and his staff, I was terminated
as a patient. He refused to elaborate on it, and still does. Back
in 1988, I went to NYC. I went on a fact-finding mission to
discover a new array of modalites. One was called Community
Research Initiative. I spent two days with those people, and they
gave me all the details on how to start a Community Research
Program in Texas. Upon my return, I met a fellow PWA named Jeff
Decker. He was new in town, and from Houston. He had KS, and was
angry at the lack of response in the communities towards PWA's.
After the support group was over, I cornered him and told him all
I had discovered in NY. We exchanged phone numbers, and within 2
days were writing letters to the 4 or so leading docs in our
community, asking if they would like to participate in such a
program. As members of the PWA Coalition in Austin, I managed to
get a $5000.00 donation for a computer and other start up funds
necessary to begin an effective campaign for Community Research.
The leading service organization in Austin is/was Aids Services
of Austin. We managed to set up shop in a small closet type room,
with a phone and a computer. In time, this relationship proved
untenable, as it seemed we were competing for the same funds. In
order to stop the in-fighting, it was agreed that we would put
our efforts together and write a grant to the Robert-Wood-Johnson
Foundation for seed money. Each member of our small coalition
wrote a particular portion of the grant, decided upon at a
meeting between ASA & the PWA group. The Central Texas Medical
Foundation got wind of our project, and a Dr. Earl Matthews
emerged as a figure wanting in. He was in charge of all the
resident doctors that came through Brackenridge Hospital, our
"then City Hospital". He wanted to be "in charge of all
protocols", and said that basically, we had to use him because
The CTMF had an IRB, and SAC, (Scientific Advisory Commitee)
already in place, and that was a critera for receivorship of any
grant attempting to put together a Community Based Clinical
Trials Group (CBCT). We were rejected by Robert-Wood-Johnson, and
realized our only hope lied with Dr. Matthews and his gang. We
applied to AmFAR in the spring of 1989, and were "one" of the
"onehundred" new recepients for seed money to begin CBCT's. With
this came an all expenses paid trip to NYC Colombia University 3
day intensive, where I met Dr. Anthony Faucci (sp?), and
basically took notes for 3 days. With me were Dr. Earl Matthew's
the new Principle Investigator of the newly christened "HIV Study
Group", and the newly hired Study Nurse, Ms. Carrol Pithey, RN.
from Dallas or Houston. In my opinion, she was Nurse Ratchet from
Hell! As the grant required that an HIV+ person be employed by
the new CBCT's, Dr. Matthew's gave me the opportunity to work. I
did not receive the benefits package as did the other 2 new
employees from the grant, but instead, was paid as a Contract
worker, at $10.00/hour. My college degree is in Human Services,
with a focus on Administration. I also have a degree in Computer
Operations from a technical school and am very familiar with many
aspects of the PC. My job was to be the Administrative Assistant
to the Principle Investigator. But this all changed when Ms.
Pithey came aboard. As a very sensitive woman to begin with, I
immediately sensed that she loathed me. That to her, I was just
an HIV+ less than human person in her way. She knew
nothing...nada...about computers, and demanded that I produce
fancy reports on the 2nd day of her hire, stating that "when I
was in Houston, I could just push a button on the computer and
get whatever data I needed"! Whew! I thought to myself, this is
not going to work. I told her very politely that first the data
had to be inputted, and since we just got the grant, and were now
going to begin the data collection, it would be sometime before
we could produce results like that. Of course she complained to
Earl Matthews, and I to him, but we were forced to work side by
side. About two weeks into the job, I was told that I was to
train Ms, Pithey on all aspects of the computer. This was not in
my job description, and it took time away from my programming. I
was setting up a progam in Dbase3+ that once compiled, would
serve as a patient entry dbase, drug dbase, and protocol dbase.
When the program opened, it had a menu, and whoever would be
doing the data-entry could choose an item and enter whatever data
was necessary. I still have copies of my program. I attempted to
teach Ms. Pithey, but she was not an easy student. Finally, after
9 months of working, and 4 friends dying, I could take no more
and resigned. You could see the delight in Ms. Pithey's face. So
here I sit, 1996, and now a Dr. Wright is head of this HIV Study
Group. And I remember when I used to take minutes for all these
docs at the start up phase of the Study Group...(he was one of
the residents). Dr. Wright claims I threw pudding on him while he
was making rounds for Dr. Blair. I have no recollection of ever
seeing him, or throwing pudding at him, but his is his
professional reason for not taking me as a patient. And what is
worse, he has told all the doctors under him not to take me as a
patient! Why ? Well, so far, I have written my Congressman, and
Senator seeking an end to this nonsense. I may sound cavalier
about all this, but it has put me in the hospital (psychiatric),
made me fear for my life, and that of my husbands, as he is about
to have surgery on the 6th of December and will go under
anesthesia. I have become a shut-in, and literally do not know
what to do next. I have done so much to help this community, and
I cannot understand this response. This is my story...it is not
over, and will not be even after I am gone. I often wonder how
many other people are or have been refused treatment by a
qualified HIV doctor ? I hope to soon find out. Please feel free
to write me... God Bless & be With You All..... Sincerely, Megan

Post Extras: Remind Me!