From: Herbert Stein [mailto:firstname.lastname@example.org]
Sent: Thursday, August 21, 2014 6:37 PM
To: Madam Secretary Sylvia Matthews Burwell, United States Secretary of Health and Human Services
Subject: Harsh tone requires an apology.
Dear Madam Secretary Burwell,
This past evening after emailing with Murray, a very dear and life-long friend, he had suggested I keep up my campaign to influence you and others in your administration to do the morally right thing while he also suggested toning down my rhetoric to you.
I am truly fortunate that many caring people read my missives and offer their thoughts and suggestions to help achieve our goals while at the same time emotionally sighting me on the objective.
If I’ve come off somewhat harsh in some of my words I do sincerely apologize.
I understand that you do have a major governmental position and an enormous responsibility and that my issue and advocacy may seem minute in the scheme of things. While our issue of VNS Therapy for the existing volunteer study subjects and patients implanted prior to CMS decision of May 4, 2007 may seem insignificant as compared to many of your other issues and challenges the fact is this group of patients has been egregiously wronged and harmed by those responsible within CMS to not have grandfathered and considered the medical needs and health insurance coverage for their care in that decision. CMS cut off medical insurance coverage for medical devices already implanted into real-live-patients. That decision also let the private health insurers off the hook whereas CMS has since partially made a make-shift effort to help the Medicare/Medicaid patients.
Please take a moment to think if it were your Mom or Dad, spouse or child or sibling implanted with a medical device and then you learn that the medical insurance you pay religiously will not cover your loved ones. I’m sure you too would be agitated and fiercely advocating.
Only I’ve been at this advocacy for more than seven (7) years and prior to CMS denied coverage. Actually my advocacy goes back half century when advocating for parity in mental health. As my spouse Joyce was one of the earliest volunteer study subjects for VNS Therapy for depression I also recognized the potential loophole and conundrum in insurance coverage pending the denial from CMS. At that time I conversed several times with the former CEO of Cyberonics, Mr. Skip Cummins, to share my thoughts and alert him to the predicament the study subjects were potentially facing.
As I am doggedly hounding you and advocating for these patients so too did I similarly direct my attention and efforts toward Mr. Cummins. He assured me not to worry and then publicly issued the following corporate press release on January 18, 2006: “Lifetime Reimbursement Guarantee for All TRD IDE Study Patients”
As it more recently evolved the current CEO, Mr. Daniel Moore, reneged on this guarantee citing federal kickback statues.
So here I am still bucking my head against all these bureaucracies trying to get department heads/bosses/CEO to act humanely and to do what is morally right.
Joyce will need another replacement device in about 8 years. I do not want to have to go through this same struggle to get her health insurer to cover her replacement or that of the other patients. At the same time I want to pressure the private insurers to cover their already implanted patients and I can only do so with your help and assistance.
Again, I am asking for a moment of your time to issue a formal document (i.e. Compassionate Use) or some other instrument signed by you that will formalize and establish the rightful care for these patients, once and for all.
Joyce and Herbert Stein
1008 Trailmore Lane
Weston, FL 33326-2816
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