From: Joyce and Herbert Stein
[mailto:fabrik@bellsouth.net]
Sent: Friday, September 13, 2013 1:48 AM
To: Jonathan Blum, Deputy Administrator Director - CMS; Madam Secretary Kathleen Sebelius - HHS
Subject: Oh Herb do I dare have hope?
Sent: Friday, September 13, 2013 1:48 AM
To: Jonathan Blum, Deputy Administrator Director - CMS; Madam Secretary Kathleen Sebelius - HHS
Subject: Oh Herb do I dare have hope?
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10:49 PM (September 12, 2013)
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Oh Herb do I dare have hope? I
listened to your conversation with Jonathan and all I heard was the same old
nonsense. I'll get back to you. I received my denial letter from my insurance
company Humana Advantage stating the CMS policy on coverage of patients
implanted after May 2007 which doesn't apply to me, I was implanted Jan. 12,
2006. And they also said I was denied because it was being used to diagnose
which again does not apply to me because I am already implanted with 100%
success for the last 7 years. When I called and questioned them they had
no answer for me except that my doctor would have to call in and make a verbal
appeal for medical necessity. I explained that they should be talking to
me because my doctor was dead and the doctor making the request did not treat
my illness for the past 15 years. Fell on deaf ears. The
psychiatrist who is the partner of my doctor that passed away is Dr. Mathew
Berger and quit frankly knows nothing about me. Just to fill you in Joyce's
history is severe and no one should suffer with this black cloud my suicide
attempts totaled 12 and a few times my oldest son who was about 12 at the time
was the person calling 911. Do you know that to this day even though I
would not attempt suicide again because after being well for so long I realize
the pain that it caused my family and my children, I still instinctively keep a
full bottle of klonapin just in case I don't get the battery. I swore I
would never go back into the black hole of depression I would rather be dead.
I mentioned my decline to Dr. Berger at my appointment on Sept. 12th and
also about my conversation with you and your working with other doctor to
convince CMS to pass the compassionate care issue. He did not seem to
know anything about it. I feel more alone than ever. I mentioned to
you in our conversation that I was going to consult my lawyer about the very
issues you brought up in your telephone conversation with Blum and he told me
it was pointless to file a suit against CMS it's like banging your head against
a brick wall. As I was listening to you tell Joyce's story it was all so
familiar to me, the endless medications
the ECT treatments that did more harm
than good, but medicare will pay for them. It is because of too much
shock therapy that I am on disability and costing the system money although
a lot less since the VNS was put in. ECT wiped out most of my long
term memory and damaged my short term memory. So much gone my whole
lifetime. My talent and what earned me a living. I was somewhat of
a child prodigy on the guitar classical. By the age of 12 my teachers
told my parents they couldn't teach me any more that I had learned everything
they knew and more. So I began teaching. I planned on music being
my life's work. After the treatments I could not remember how to read a
note. It was gone all gone. All I could remember were a few basic
chords. I have never picked it up since that day. Hospital
bills eventually ran us into bankruptcy. And when I finally got the
implant in 2006 my improvement was just as quick as Joyce's and very similar. I
did get a little manic for a while but not bad it was a kind over happy manic
and my very much missed Dr deSoto put it " Your way too happy girl, we
have to turn you down a notch". Loved that man. So I'm going
to be waiting to hear from you on Monday after you speak to Blum and I will be
praying for a positive answer for Joyce, myself and all of us fighting this
battle. Thank you for being our knight in shining armor.
Julie Ottaviani
11 Alexandria Drive
Blakely, Pa 18447
570-604-3043
You have my permission to use any or all of this email in anyway you think will be useful in our fight.
Julie Ottaviani
Julie Ottaviani
11 Alexandria Drive
Blakely, Pa 18447
570-604-3043
You have my permission to use any or all of this email in anyway you think will be useful in our fight.
Julie Ottaviani
Dear Jonathan,
What does it take to get through to all you folks that
your department’s negligence and further delays are seriously harming the very
folks that you should be caring for and that the multi-year wellness they’ve
derived from VNS Therapy are also reducing health care costs.
After speaking with Dr. Daniel Schultz earlier in the
day I’ve come to the conclusion it may well be both your “medical team” and his
former so called “experts” appear to be out of touch with reality.
Today I was also reminded of my immediate thoughts and
response after reading the contents of the May 4, 2007 national coverage denial
document. I
certainly was not happy to read the final determination. But what truly
appalled me was some of the contents of which I read. Whoever composed
the document, in my opinion, denigrated the physicians who practice psychiatry
and the Art and Science of Psychiatry. If I were a Psychiatrist, I
certainly would be appalled. There is no doubt in my mind that the
authors of that document have no understanding of the difficult challenges
these physicians face day in and day tending to this unique and seriously ill
population of patients with whom conventional therapies are ineffective and
very costly. How can these people who penned that document really have an
understanding when amongst other statements they issue the below listed
statement?
D02 RCT
The well-designed, randomized
controlled trial (D02) of 10 weeks (standard trial length for efficacy
determination of an antidepressant medication)
failed to demonstrate statistically
significantly superior outcomes greater than sham treatment (15% versus 10%, p
= 0.31 (Fisher’s exact)).
“The well-designed, randomized controlled trial (D02)
of 10 weeks…” sums up what little they knew and understood and what appears to
continue to this very moment. Dr. Schultz in my conversation with him
today cited that a study of such a short duration was a mistake from the start
and doomed to failure. Amongst this and other points he, unlike his underlings,
saw beyond their computer screens and as a practicing physicians he understood
the need for the therapy. The study needed more time but why discuss this
matter now as any reasonable minded individual knows it was a mistake.
These patients for whom I advocate have not only responded but obtained
long-term efficacy as you’ve read. Yet your department issued the absurd
statement amongst other abominating statements.
The point being that it seems to me y’all still can’t
comprehend what is being exhibited before your very eyes. Once again,
100% of these implanted patients wanting to continue this therapy are
responders obtaining long-term efficacy. What can’t your “medical team”
or any of you folks not comprehend or compute?
Your department issued the non-coverage statement on
May 4, 2007. Now do the morally right and just thing and issue a
favorable “Compassionate use” decision for all those patients implanted on or
before May 4, 2007. At the same time it should put a smile on Dan Moore’s
face as it will relieve Cyberonics of any responsibility or legal worry of
violating “kickback statues” (joke).
Sincerely,
Herb
Joyce and Herbert Stein
1008 Trailmore Lane
Weston, FL 33326-2816
(954) 349-8733
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