From: Herbert Stein [mailto:fabrik@bellsouth.net]
Sent: Friday, January 31, 2014 11:00 AM
To: Stephen J. Hemsley - CEO, United Healthcare; Chet Burrell, President & CEO CareFirst BlueCross BlueShield
Cc: 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: "Joyce, please wait. I'm expecting an important call and then we'll go shopping."
To Joyce’s fellow VNS Therapy patients et al,
Apparently and once again my efforts, advocacy as well as my emails are not going unread nor unheeded.
"Joyce, please wait. I'm expecting an important call and then we'll go shopping," was my response to Joyce as I shared quick emails (see below) with Mr. Jonathan Blum, Deputy Administrator and Director for the Center of Medicare at the Centers for Medicare and Medicaid Services.
In my “off-the-record” telephone conversation yesterday at about 3:00 PM with Jonathan he wanted to let me know my messages are all being read as well as some additional information he wanted to share.
Once again I can only share my understanding and interpretation of what was discussed without quoting directly.
I feel strongly based upon Jonathan’s word and what his agency have already effectively done for a number of the VNS Medicare/Medicaid patients that they are endeavoring to somehow continue by also assisting the private pay patients. I gathered from the conversation what I’ve come to know that these are very large government agencies guided by rules, regulations and protocols and that it may take a little time to reach our objective. As an analogy I would liken it to steering a huge oil tanker; they can’t turn on a dime and it takes considerable advanced planning and preparation to steer left or right. In my opinion, hopefully we shall get there but I’m unable to put a frame on the matter.
In the meantime I shall continue my advocacy and focus toward the two current CEO’s where I’ve been told by the patients that have communicated with me that their companies have declined private payer(s). I do so in the hope these executives will come to understand the seriousness and potentially deadly consequences of inaction and/or denial and the need for compassion, humanism and doing the right thing. As a former CEO of a considerably smaller business enterprise I had the authority and ability to make things happen quickly as I am sure so do Mr. Stephen Hemsley, CEO, United Healthcare and Mr. Chet Burrell, President & CEO CareFirst BlueCross BlueShield.
I ask these gentlemen to please make things favorably happen for your existing VNS patients who require replacement without having to wait for any formal government document and/or communication to effectuate this process and/or policy within your organizations. Inaction or denial may well prove fatal to some of these patients who otherwise were doing well.
Sincerely,
Herb
Joyce and Herbert Stein
1008 Trailmore Lane
Weston, FL 33326-2816
(954) 349-8733
http://www.vnstherapy-herb.blogspot.com
http://www.vnstherapy.wordpress.com
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CONFIDENTIALITY NOTICE: This e-mail message including attachments, if any, is intended only for the person or entity to which it is addressed and may contain confidential and/or privileged material. Any unauthorized review, use, disclosure or distribution is prohibited. If you are not the intended recipient, please contact the sender by reply e-mail, destroy all copies of the original message, and do not disseminate it further. If you are the intended recipient but do not wish to receive communications through this medium, please advise the sender immediately.
From: Blum, Jonathan D. (CMS/CM) [mailto:Jonathan.Blum@cms.hhs.gov]
Sent: Thursday, January 30, 2014 2:44 PM
To: Herbert Stein
Subject: RE: What is it that you and your agency doesn't understand?
I will call you in a few minutes.
From: Herbert Stein [mailto:fabrik@bellsouth.net]
Sent: Thursday, January 30, 2014 2:42 PM
To: Blum, Jonathan D. (CMS/CM)
Subject: RE: What is it that you and your agency doesn't understand?
Jonathan,
Any chance of calling right now? Home 954-349-8733
Herb
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NOTICE OF CONFIDENTIALITY / Disclaimer
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Disclaimer: This E-Mail is covered by the Electronic Communications Privacy Act, 18 U.S.C. §§ 2510-2521 and is legally privileged. The information contained in this E-Mail is intended only for use of the individual or entity named above. If the reader of this message is not the intended recipient, or the employee or agent responsible for delivering it to the intended recipient, you are hereby notified that any dissemination, distribution, or copying of this communication is strictly prohibited. If you receive this E-Mail in error, please notify the sender immediately at the email address and/or phone number above and delete the information from your computer. Please do not copy or use it for any purpose nor disclose its contents to any other person.
CONFIDENTIALITY NOTICE: This e-mail message including attachments, if any, is intended only for the person or entity to which it is addressed and may contain confidential and/or privileged material. Any unauthorized review, use, disclosure or distribution is prohibited. If you are not the intended recipient, please contact the sender by reply e-mail, destroy all copies of the original message, and do not disseminate it further. If you are the intended recipient but do not wish to receive communications through this medium, please advise the sender immediately.
From: Blum, Jonathan D. (CMS/CM) [mailto:Jonathan.Blum@cms.hhs.gov]
Sent: Thursday, January 30, 2014 2:39 PM
To: Herbert Stein
Subject: RE: What is it that you and your agency doesn't understand?
Mr. Stein: is there a good time to give you a call today? If so, let me know the right number.
From: Herbert Stein [mailto:fabrik@bellsouth.net]
Sent: Thursday, January 30, 2014 12:12 PM
To: Sebelius, Kathleen (HHS/OS)
Cc: Blum, Jonathan D. (CMS/CM); Larrick, Amy (CMS/CM); Stephen J. Hemsley - CEO, United Healthcare; Chet Burrell, President & CEO CareFirst BlueCross BlueShield
Subject: What is it that you and your agency doesn't understand?
Dear Madam Secretary Sebelius,
Are you so beyond reproach that after numerous emails to you that you lack the common decency and courtesy of an acknowledgement or response from either you or one of your subordinates? Is such a response also beyond your humanism and the scope of your position, agency or mission?
I write to you not asking anything for myself but I do so on behalf of seriously ill patients. I do so because CMS, one of the agencies under your domain seriously screwed up. I do so because their screw up was egregious, unconscionable, immoral and obviously lacking much wisdom and foresight.
The FDA, approves a therapy. Then two years later another agency under your dominion, CMS, denies medical coverage for an FDA approved therapy and from my understanding the first time such an event took place. The health insurance industries follows CMS lead and denies coverage to their subscribers. We are then left with implanted medical devices in volunteer study subjects and patients who obtained the therapy as study subjects or by way of their insurance coverage during the two year gap between FDA approval and CMS denial. Absolutely brilliant thinking on the part of our convoluted government agencies and its voluminous staff of administrators and so called expert personnel (stated sarcastically).
It is almost 7 years from the date CMS first denied coverage. To correct this blatant oversight CMS has apparently understood the gravity and seriousness of this error and/or oversight and has partially corrected the situation by issuing a “Stealth Decision”. CMS has acted responsibly and is caring for these patients but the private health insurers have not followed suit.
I did learn from CMS that they have no authority over the private health insurance carriers. I can understand and accept the scope of their authority. What I can’t accept is the fact I requested CMS, Ms. Amy Larrick, to please call the private health insurance carriers or to write to them explaining their recent reversal decision to care for all the Medicare/Medicaid patients needing help for all those implanted on or prior to their previous denial date of May 4, 2007. It was further explained to me that a meeting was held within CMS and the decision was made that they would not call or write. What I also cannot accept or fathom, i.e. United Healthcare managed Medicare programs have paid for patient replacement and care and the same company has denied care to private payers? How is that possible and not a violation of the Mental Health Parity and Addiction Equity Act of 2008 (MHPAEA)? Does this not smack of discrimination?
Is there not anyone within your various agencies that can fully grasp the seriousness of what is transpiring?
What you also may be lacking in your knowledge and wisdom is the fact these patients responded and obtained efficacy from VNS Therapy for multiple years and now that their pulse generators (batteries) are depleting they are returning to the abyss of depression, despair and agony and suicidal ideations. How in good conscience can you or anyone reading my missives still sit by and do nothing when we know there is an effective treatment being denied these patients. Too boot, there is a substantial cost savings not only to the government but the insurance carriers as well in maintaining their long-term wellness. Add to the fact a number of these patients have been able to maintain employment, pay taxes and are now facing losing both their wellness and employment.
Therefore, my goal of having health insurers change their policy toward these patients has only partially been achieved and my reason for hounding you and your agency to act responsibly and now!
You “are working every day to give Americans the building blocks they need to live healthy, successful lives.” Oh really, you’ve fooled me. I couldn’t tell by your total lack of response, concern or effort for this small group of seriously ill patients.
I know little about the bureaucracy of your agency or for that matter the workings of any government agency other than to opine that I am truly amazed that anything worthwhile or effective ever seems to be accomplished. I also question whether you or any of your staff take the time to read what you publish on your webpages. If so then you would know and understand that I am not asking for anything outrageous or beyond the scope of your agencies capabilities.
I am again asking you to please notify the private health insurance carriers of CMS policy change in their “Stealth Decision” as it relates to this unique group of seriously ill patients. Do what is right only do it now!
Sincerely,
Herb
Joyce and Herbert Stein
1008 Trailmore Lane
Weston, FL 33326-2816
(954) 349-8733
http://www.vnstherapy-herb.blogspot.com
http://www.vnstherapy.wordpress.com
---------------------------------------------------------------
NOTICE OF CONFIDENTIALITY / Disclaimer
---------------------------------------------------------------
Disclaimer: This E-Mail is covered by the Electronic Communications Privacy Act, 18 U.S.C. §§ 2510-2521 and is legally privileged. The information contained in this E-Mail is intended only for use of the individual or entity named above. If the reader of this message is not the intended recipient, or the employee or agent responsible for delivering it to the intended recipient, you are hereby notified that any dissemination, distribution, or copying of this communication is strictly prohibited. If you receive this E-Mail in error, please notify the sender immediately at the email address and/or phone number above and delete the information from your computer. Please do not copy or use it for any purpose nor disclose its contents to any other person.
CONFIDENTIALITY NOTICE: This e-mail message including attachments, if any, is intended only for the person or entity to which it is addressed and may contain confidential and/or privileged material. Any unauthorized review, use, disclosure or distribution is prohibited. If you are not the intended recipient, please contact the sender by reply e-mail, destroy all copies of the original message, and do not disseminate it further. If you are the intended recipient but do not wish to receive communications through this medium, please advise the sender immediately.
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