My introduction to Madam Secretary Sylvia Matthews Burwell, United States Secretary of Health and Human Services

From: Herbert Stein [mailto:fabrik@bellsouth.net]
Sent: Monday, July 07, 2014 1:56 PM
To: Madam Secretary Sylvia Matthews Burwell, United States Secretary of Health and Human Services
Cc: ‘Amy Larrick, Senior Advisor to the Principal Deputy Administrator Centers for Medicare & Medicaid’; ‘Chet Burrell, President & CEO CareFirst BlueCross BlueShield’; ‘Courtney Turner’; ‘Daniel Moore, CEO – Cyberonics’; ‘Daniel Schreiner, Acting Deputy Director – Office of Public Engagement’; ‘Dr. Jeffrey A. Kelman (CMS/CM)’; ‘Dr. Mark Bunker’; ‘Lynda M. Gyles, Executive Assistant to the Secretary – HHS’; ‘Marilyn Tavenner, Administrator – CMS’; ‘Stephen J. Hemsley – CEO, United Healthcare’; ‘Teresa Niño, Director – Office of Public Engagement’; Bryan Olin, Ph.d
Subject: VNS Therapy for Depression…

Dear Madam Secretary Burwell,

I would first like to congratulate on your recent appointment and for your very prompt response to my test document to check the accuracy of your new email address which I’ve copied and pasted below.

“Thank you very much for your e-mail.  Our ability to deliver impact depends on your input.  I very much appreciate that you’ve taken the time to write, and will be sure to share your message with the most appropriate member of my team for review. 

This Department belongs to the American people, and what you have to say matters to all of us.   As we advance our mission of providing Americans with the building blocks of healthy and productive lives, we never lose site of the fact that ultimately, you are “the boss” – and everything we do is on behalf of everyday Americans who work hard, take responsibility and rely upon the outcomes and services this Department provides.

To deliver impact and move our mission forward, we are guided by three central tenets: delivering results for the American people on a wide range of important issues; strengthening the relationships that drive progress; and building strong teams with the talent and focus that our challenges call for, and our fellow Americans deserve.

Working together, we can strengthen the foundation of a stronger middle class, a more prosperous economy, and healthier communities.

Thank you again for your message.

Sylvia Burwell

Secretary”

With the departure of former Madam Secretary Kathleen Sebelius and Jonathan Blum, Deputy Administrator and Director for the Center of Medicare at the Centers for Medicare and Medicaid Services I find myself once again in the unenviable position of starting over and having to deal with the same bureaucracy once again to reestablish a personal relationship on a more humanitarian level.  I do so in order to advocate for a unique population of volunteer medical study subjects and patients who have been egregiously, immorally, ethically and medically wronged by way of our convoluted and bureaucratic health care system and agencies lacking any wisdom or forethought as to the repercussions upon a seriously ill population of patients implanted with a medical device and then left without health insurance coverage for care and/or replacement when CMS blatantly ignored and/or overlooked grandfathering care for these patients in their May 4, 2007 decision for an FDA approved medical device.

Welcome to my reality in the trenches having to battle for your attention and that of your numerous subordinates to help insure some medical coverage for these aggrieved study subjects and patients.

Jonathan Blum before his departure set up an informal procedure to assist this unique patient group with the aid of Ms. Amy Larrick, Senior Advisor to the Principal Deputy Administrator Centers for Medicare & Medicaid.  My last telephone conversation with Mr. Blum was to see if something could be put into formal writing so that when the patients in years to come require pulse generator replacement and care for their implanted prosthesis they would not have to battle the bureaucracy once again to accomplish that goal especially now in view of the fact that Mr. Blum has left his position and my last call and message to Ms. Larrick has gone unanswered.  It now appears I am back to square one having previously spent four months straight, 24/7 getting the attention of your predecessor and subsequent action from Mr. Blum.

I am once again requesting a formal “Compassionate Use” determination in writing for all the study subjects and patients implanted for VNS Therapy for Depression on or prior to May 4, 2007.

I am now calling you out on your statement “Our ability to deliver impact depends on your input.”  You have my input as does many within your organization.

You want to “deliver impact” well then after my starting on this campaign back on June 3, 2013 the time has come to put into writing the “Compassionate Use” of this device for the patients wanting to continue with their therapy.  Make an impact now so that we have an official document on file to eliminate the need for the patients having to battle with each State’s Medicare/Medicaid agency.  And while you’re at it please consider some form of directive to the private insurance companies that their patients should rightfully also be covered.

Should you have nothing better to do and would seek to be better informed as to what has transpired you might also consider perusing my blog site with special attention paid to the entries made in August and September 2013 encompassing my correspondence with Jonathan Blum as well as a recorded telephone conversation on-the-record.

It is time we finally get this matter resolved.

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

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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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