From: Herbert Stein [mailto:fabrik@bellsouth.net]
Sent: Tuesday, July 08, 2014 10:59 PM
Subject: Important Information...
To the VNS patients and their attending physicians,
1:00 PM today I participated in a teleconference with CMS. The discussion I was told is “off-the-record” although I could share one particular very important piece of information and then I’ll share my thoughts and opinions of the teleconference.
As you already know Kathleen Sebelius and Jonathan Blum had resigned their positions with their respective agencies. Ms. Amy Larrick has been moved to a higher position within CMS and will no longer be the contact person at CMS for the VNS patients so please delete any information pertaining to Amy Larrick. The first step to obtaining replacement is described in my posting link entitled:
Expediting the VNS replacement surgery for the depression patient.
Kindly substitute Courtney Turner’s name anywhere you read “Amy Larrick”. Should one encounter any obstacles then read the below listed information.
The new contact at CMS, so please mark your records accordingly, for any VNS patients for Depression initially implanted prior to May 4, 2007 is:
Ms. Courtney Turner
Telephone: 410-786-4593
Any implanted depression patient needing assistance must be prepared to supply the following information when contacting Ms. Courtney Turner:
One’s Full Name
Telephone number
State of residence
Be prepared to share any other pertinent information relating to one’s case, if requested.
I have been advised that Ms. Turner will make every effort to expedite each case on a case by case basis although some patience on the part of the applicant will also be required as Ms. Turner is apparently the sole staffer assigned to this undertaking.
I more or less firmly expressed my frustration and exasperation during the conference as to why after all this time a written or “Compassionate Use” document could not be issued, once and for all.
What I came away with is my continued belief and impression that the government is inundated with bureaucracy, upon bureaucracy, department upon department, committee upon committee and the wonderment in my mind that anything can ever be accomplished. If the government were a private enterprise in my opinion; they’d be bankrupt by now through their inefficiencies, convoluted organizational management and questionable qualification of their so called medical experts.
I also indicated during the conference call that I shall not let up in my advocacy and campaign to formally right this egregious wrong as I direct my emails to Madam Secretary Burwell in the hope she gets completely fed up with me and whether she personally signs or directs one of her subordinates to sign a formal directive to cover the health insurance for these patients.
In any event and under the circumstances I was left with the impression despite all the negatives in my mind they are making their best efforts, under the circumstances, to accommodate the medical insurance needs of the VNS Depression patients.
Sincerely,
Herb
Joyce and Herbert Stein
1008 Trailmore Lane
Weston, FL 33326-2816
(954) 349-8733
vnsdepression@gmail.com
http://www.vnstherapy-herb.blogspot.com
http://www.vnstherapy.wordpress.com
Joyce, my spouse was one of the earliest study subjects for VNS Therapy for Depression (December 13, 1999). I am her long time support person and health care advocate/activist of 5 decades. The intent of the blog is not to promote any therapy, product or treatment but to continue sharing our experiences and knowledge as it relates to VNS. I endorse patient education in collaboration with a caring, knowledgeable and licensed health care professional while also encouraging hope and persistence.
No comments:
Post a Comment