What is it that you and your agency doesn’t understand?

From: Herbert Stein [mailto:fabrik@bellsouth.net]
Sent: Thursday, January 30, 2014 12:12 PM
To: Madam Secretary Kathleen Sebelius, United States Secretary of Health and Human Services
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; 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!

“HHS Operating Divisions are responsible for implementing programs that touch the lives of all Americans. Whether it’s providing millions of children, families, and seniors with access to high-quality health care, helping people find jobs and parents find quality child care, keeping the food on Americans’ shelves safe and infectious diseases at bay, or exploring new frontiers of biomedical research, we are working every day to give Americans the building blocks they need to live healthy, successful lives.”

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!



Joyce and Herbert Stein

1008 Trailmore Lane

Weston, FL 33326-2816

(954) 349-8733







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.


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.
This entry was posted in VNS Therapy and tagged , , , , , , , . Bookmark the permalink.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )


Connecting to %s