Another email pleading for “Compassionate use”.

From: Joyce and Herbert Stein [mailto:fabrik@bellsouth.net] Sent: Friday, September 06, 2013 12:20 PM To: Jonathan Blum, Deputy Administrator Director – CMS; Madam Secretary Kathleen Sebelius

Subject: How long does it take for bureaucrats to act responsibly and effectively?

Dear Mr. Blum,

I shall not go away.

I shall continue to kneel before you.  I am rightfully begging to have you people correct the moral injustice and negligence you continue to perpetrate against these implanted VNS Therapy patients by not covering their health care needs.  I am again asking for either of your signatures to a document for “Compassionate use” for these patients.

Additional Cyberonics sits by of absolutely no help to me or these patients caught up in this Catch-22.  The CEO, Mr. Dan Moore has not responded to my last email (August 16, 2013) to him refuting his contention that paying for the study subjects replacement prosthesis stated in his company’s document “Lifetime Reimbursement Guarantee” violates the “kickback statue”.  Nor has he to the best of my knowledge attempted in any way to contact the VNS depression patients to inform them of our advocacy for “Compassionate use”.

Despite all the obstacles in my path, slowly but surely, my message and advocacy apparently is being heard.  I just received and once again copied and pasted below another response from another depression patient giving me permission to share her pleas and life experiences.  I strongly believe that none of these life experiences that I have shared with you compute or are figured anywhere in the data you “medical team” might be reviewing and yet these are facts.  These are facts affecting the very lives of the people that the FDA and CMS are supposedly mandated to protect, care for and serve.  This life experiences has proven to be effective and cost savings to our health care system for this group of patients formerly unresponsive to conventional therapies.  The former costs to maintain these people through ineffective conventional therapies are astronomical.  100% of the patients opting to continue with the therapy have obtained favorable responses and efficacy. 

Are you and your “medical team” comprehending the significance of that data?

How can you continue to stand by ineffectively given me bureaucratic speak while delaying and watching and literally forcing these people one by one return to the agony, pain and hell they’ve suffered for decades when there is this treatment that has effectively and safely given them a reasonable quality of life?

Have you no real compassion and understanding of the hardships you’ve created and continue to perpetrate?

Joyce and Herbert Stein

1008 Trailmore Lane

Weston, FL 33326-2816

(954) 349-8733

vnsdepression@gmail.com

http://www.vnstherapy-herb.blogspot.com

https://vnstherapy.wordpress.com/

Julie Ottaviani

11:52 AM (18 minutes ago)

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to me

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My name is Julie Ottaviani and I am a VNS Implant !00% success story.  Seven and a half years ago I stood in front of panel upon panel of judges and appeal members telling my story of why this treatment needs to be covered.  I now need a new generator and I can feel the black hole of depression descending upon me.  I am the mother of 4 children.  Two boys and two girls.  The youngest two, my daughters were robbed of having a real mother by this horrible disease. Always in the hospital, suicide attempts, or I would just be sleeping in my room and they would ask why is Mommy so sad?  Why is Mommy crying all the time? Did we do something wrong?  On Jan 12,2006 I was implanted with the VNS Implant for TRD depression.  It was a desperate attempt by my doctor to save my life which I had tried to end many times.  My youngest daughter Ashley was 3 years old and Sara her sister was 5.  After the implant was turned on and adjustments were made the improvement was almost instantaneous. I will never forget the day I woke up after the last adjustment and for the first time since I could remember I thought something is different.  Then I knew, I felt happy, I felt alive, I felt like laughing.  My girls came running into the bedroom because they heard me and we all jumped on the bed wrestling.  Ashley who was 3 said Mommy’s back, Mommy’s back.  And Sara went running to get her brothers yelling Mommy’s all better, look she’s all better.  The tears of joy were running down my face and it felt good.  Now it is time for a new generator and I feel the sadness descending. Ashley is 18 and a senior in high school.  She is terrified of losing me again.  I’m trying hard to keep a smile on my face but she knows what’s coming.  Sara says I can see it happening Mom.  I come home and your sleeping just like when I was little.  They are angry that the doctors just won’t give me what I need, they are right.  It’s not fair to give children their Mother back for 7 years and then tell them that’s all you get it’s over, we’re taking her away again.  Please, for myself, Corey, Adam, Sara, Ashley my beautiful granddaughter Trinity, give me a chance to see them grow.  Pass Compassionate Use

Sincerely,
Julie Ottaviani
11 Alexandria Drive
Blakely, Pa  18447
570-604-3043

Julie Ottaviani julieottaviani@aim.com

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About vnstherapy

I'm a very, very long-time support person and health care and mental health advocate/activist for my spouse Joyce as well as to others. I'm also a retired business executive and former Board Member, President and facilitator of a local chapter of DBSA as well as a Florida State appointment as a Guardian Advocate. I do not endorse, promote or advertise for any therapy, product or company. I do share our personal experiences, my research and knowledge in the hope it might benefit someone or do I give advice as to what one should or shouldn't do. I extend my best wishes for wellness to one and all and all the good you’d wish for yourselves.
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