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Hi Christy,

You recent article on who’s in charge of OPTN/UNOS is so true.
Nobody is watching and if they might glance at something wrong, they are all friends in the Network Community and will only support their friends at our ( the pt’s) expense.
As far as companies, I feel the Pharm. Co’s i.e., Genzyme is part of that network.
The Campath I was given during induction unknowingly, was only approved for B-CLL pt’s third line. It was only to be given to the pt’s with a grave condition when 2 other ca. drugs failed. It was in phase 1 in 2004.
Campath did not do as well as thought so, to settle the upset invested natives they decided to dump on who else, but MS pt’s and a small blurp of very little SOT pt’s.
MS pt’s made some big bucks and the unreported cases such as I fared well with 100% private ins. like myself.
About 5 mos. later FDA only put out an alert for the MS pt’s receiving Campath to stop due to deaths. Nothing to SOT because it really wasn’t known. FTC pushed the med through with hesitation that Docs would use and bypass research due to cost and bill Insurance Co’s to pocket the money. FTC made it clear that strict rules would be in place and if violated penalties and fines would be enforced. The rule was Campath use by Transplant Centers were to be reported to UNOS for reporting to keep track of it’s use. Probably more for the ever-changing hands on this drug to get their money. My UNOS papers I have asks if Campath used and NO is checked. I contacted FTC and filed a telephone complaint and given a case number. I called back 2-3 wks later to get the status and they said,”We’ve put your complaint in a folder and will watch if there is a pattern”. Nothing happened – no fines etc..
My records also reveal that I was highly sensitive at Tampa waiting list yet Shands Jax had me at 0% sensitized. UNOS clearly didn’t know I was the same person. Donna Luebke tried when on the board to tell them that their system of multiple listed pt’s was a risk. Donna told me we were only retrieved by name and not s.s.#
They didn’t know I was the same person!
They are gaming the system for charging a dbl. listing fee.
My time was transferred to Shands yet Tampa got the call first.
I found out the reason was when highly sensitive which Tampa showed me to be, would always get a perfect match first due to extra points given. Thought being a perfect matched helped more if highly sensitized. Shands would have never been given the first offer – the best kidney for me. Tampa denied this 0 mismatched kidney ( which is unheard of if kidney ok) claiming air was due to quality. Yet, Shands took it. Multiple listing is a fraud to make more money and they ( UNOS, Transplant Surgeons) have figured it out! It’s like the have rules between themselves! My UNOS data was inaccurate and I was shown to be at risk by saying I was not sensitive to antibodies from cadaver donor, when in fact, I was at high risk since donor received about 8 units of blood and sample for serologies and histo. testing was hemodiluted.
I feel this is why I got Campath plus all the other immuno. He completely shut down my immune system for 6 mos.. Campath info sheet stated not to use with 0 mismatch kidney. Why would they have to?
Shands charged $5,600. when I was told 2 doses were given from a three pack vial at the time in 2004.
Each vial per Genzyme was $600.00 ea. Genzyme said even ifvthey didn’t show 3rd. vial wasted ( not uncommon) the most the bill could have been was 1,800.00. Shands overcharged $4,200.00 and got away with it!
I’m sorry for my long msg. to you, but felt a need to let you know everybody is in bed together in this money making business and all in the name of the desperate and sick dialysis pt..

Christy, I feel, see and understand your anger and worry about you and your health. I got 4 yrs. on you fighting for answers to numerous violations and broken codes of ethics and never got answers and nobody was penalized. My only satisfaction was the reporter Jeremy Cox investigating the same time I was threatening Shands CEO to go public. They shut their doors supposedly due to numbers but Jeremy revealed the truth with high death rate and a vist from CMS in a month. All they had to do to escape scrutiny and caught in violations was to “Voluntarily” shut their doors. Such BS.

Be careful with your health. I spent every minute sometimes all day long to figure out how I was violated but nobody cared – NOBODY!

Dr. Bowman at HRSA is aware and had just taken the seat after Burkhart left and had to tread lightly with Mr. Durbin to make the change due to the chain of command. Rules and guidelines are getting stricter and the Transplant Dr’s are up in arms because they feel they should run the circus that Burkhart and friends at UNOS and OPTN did for yrs..

Be well. It can consume you. I didn’t give my 22 yr. old son the time he obviously needed from me from a very bad motorcycle accident and oxycodone for 4 yrs. Now, he is an IV drug user.
Don’t lose sight of your sanity and family….including your cute little greyhounds I saw.
We have a Border Collie -Frosty born on X-mas day and Annie a Carolina Dog ( American Dingo) Ungenetically altered wild dogs dating back over 3,000 yrs ago. She’s a very protective pack dog and Frosty unfortunately thinks ever car is a sheep. We’re working with a trainer to help them curb their instincts. So worth it when we are all in bed together with hubby! Lifes good then!

Take care. Christy and be well


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