The battle for health care coverage continues…

From: Herbert Stein []
Sent: Wednesday, January 22, 2014 10:02 AM
To: Jonathan Blum, Deputy Administrator and Director for the Center of Medicare at the Centers for Medicare and Medicaid Services; Amy Larrick, Senior Advisor to the Principal Deputy Administrator Centers for Medicare & Medicaid
Subject: *RECALL MESSAGE: VNS Therapy…the egregious, immoral, unconscionable and discriminatory acts by private health insurance companies.

Dear Jonathan,

*(The email information previously sent to you on Wed 1/22/2014 1:54 AM was sent in error.  Please properly dispose of that document.)

I have within these past two weeks received telephone calls from four (4) patients and/or their support persons referred to me for information and/or guidance in trying to obtain health insurance coverage from their private carriers for the replacement and care of their VNS devices.  All four patients have been denied medical coverage by their respective private insurance carriers for the replacement of their prosthesis.

I am once again returning to you and at the same time asking you and all the physicians and parties in my blind copy distribution of this message to help and suggest to me how we can jointly overcome the very serious and egregious problem(s) your agency had initially created for these patients.  While you and Ms. Amy Larrick have certainly done well by the Medicare/Medicaid patients requesting replacement of their depleted prosthesis, for which I am sincerely appreciative, you are apparently failing miserably by those who are covered by private health insurers.

Your agency’s decision of May 4, 2007 ineptly, ill advised, intentionally, stupidly or whatever you prefer to call it, overlooked grandfathering in the care for the volunteer study subjects and all those implanted patients prior to your national determination to not cover the depression patients.  Therefore medical coverage was denied this unique patient population with implanted medical devices through absolutely no fault of their own.  In turn, the private health insurers followed your lead and they too have denied health insurance coverage to this unique and seriously ill small population of patients.  Yet this exact same therapy, as you well know, is an approved treatment for Epilepsy patients paid for by both Medicare/Medicaid and the private health insurance carriers who also followed your early national determination to approve the therapy for the treatment of Epilepsy.

I am strongly led to believe that my fervent and sincere advocacy to correct this unconscionable and unjust situation was finally understood by you and your agency people as per my telephone conversation with Amy Larrick on Thursday, September 26, 2013.  You and your agency compassionately and sincerely attempted to rectify and correct this egregious oversight.  What I am now learning is that you have only partially succeeded.  The job is not done. The private health care insurance carriers are not following your informal decision to cover the medical needs of some of these patients or do they seem to be aware of your newest decision.  In that same conversation, in September, Amy made it clear to me your agency has no authority over the private health insurance carriers.  What you do have is the ability to get the message out whether formally or informal of the newer decision your department has rendered.  I requested Amy to please call Mr. Stephen Hemsley, CEO of United Healthcare to inform him of your more recent decision on behalf of one of their patient subscribers.  Amy advised me that in her discussion with you a decision was made not to call Mr. Hemsley.  How can these private insurers possibly follow your lead if they have no knowledge of your changes and/or decisions made informally or otherwise? 

I’m a retired executive of a multi-million dollar sales enterprise which often faced various challenges.  A meeting amongst partners was held often to discuss various issues.  Decisions were made quickly based upon available current information and decisions were rendered and executed.  Our decisions did not require lengthy or protracted deliberations.  Most often the decisions were correct and profitable.  As explained to you previously I’m unfamiliar with the bureaucracy and internal workings of government (your agency) or those of large health care carriers but I do know it is unacceptable and immoral the way these study subjects and patients are not being treated and cared for as well as and in my opinion discriminatory acts contrary to and against the intent of the Mental Health Parity and Addiction Equity Act of 2008 (MHPAEA).

Again, I am not asking for a change of the May 4, 2007 national decision.  That onus and responsibility belongs to Cyberonics, the sponsor of the therapy.  I am requesting that which I originally set out to accomplish that all the VNS Therapy patients implanted for depression on or prior to the May 4, 2007 be rightfully covered for their medical needs no differently than the epilepsy patients.  I feel strongly it is incumbent and rightfully your agency’s responsibility to rectify this travesty and injustice and to not only inform the Medicare/Medicaid agencies within each state but the health insurance industry as a whole to bring them into similar compliance.

As I also explained to you previously from a unique statistical and financial standpoint; 100% of the VNS Therapy depression patients who have chosen to continue with their therapy are responders and obtaining efficacy long-term.  This is a statistic unheard of and truly amazing in the treatment of seriously ill depression patients.  It is also a statistic few if any number crunchers are aware of.  This equates to a benefit for both CMS and the private health insurance carrier who have been obviously too blinded in their bureaucratic fervor to understand the multiple yearly decrease and/or elimination of expenses for multiple hospitalizations, numerous doctor office visits, reduced or eliminated expensive psychotropic medications (as all demonstrated in Joyce’s case history) as well as expensive ECT therapy etc., etc. which in turn computes as a significant reduction and savings in patient costs while increasing profits on the part of the private insurer.

I have also attached to this email a letter of appeal to United Healthcare from a very compassionate and understanding physician on behalf of his patient which is more than self-explanatory.  It goes to the very heart of humanism contrary to the propensity of these various private health care organizations strict and sole focus on profits.

I am asking you to please reconsider and come up with some kind of plan or approach, whether formal or in formal, to make the private health insurance industry aware of your newer decision and determination in the hope that they too will amend their policy toward the existing VNS depression patients.  You cannot conscionably abandon these VNS Therapy depression patients simply because they are private insurance payers in their darkest of needs and not covered by Medicare/Medicaid.

Please let me know as soon as possible what you propose as there are currently four patients that I am aware of in desperate need of replacement surgery looking toward me and/or their attending physicians or support persons for further assistance?



Joyce and Herbert Stein

1008 Trailmore Lane

Weston, FL 33326-2816

(954) 349-8733









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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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