From: Herbert Stein [mailto:fabrik@bellsouth.net]
Sent: Saturday, January 25, 2014 2:52 PM
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: "The death of common sense"
Dear Jonathan,
As a very, very long-time mental health advocate and activist I have been blessed and fortunate to maintain long-time correspondences and collaborations with many lay-people and medical professionals seeking the same goals. Some of these people are unfortunately challenged and disabled by serious depressive illnesses while others either care give and/or support those challenged and otherwise live rather normal lives as well as a considerable number of very compassionate and caring medical professionals who I include in my advocacy and email distributions.
I just today received an interesting response to one of my recent emails. A friend responded and simply hit the nail on the head. “The death of common sense” (please see the email dated “Saturday, January 25, 2014 10:59 AM” reply to me which I’ve copied, cut and pasted below). You issued an informal decision to rightfully cover the VNS Therapy depression volunteer study subjects and all those other patients implanted on or before your national decision to deny coverage. As you already know, my spouse Joyce and a number of other Medicare/Medicaid patients and one or two health insurance private pay patients I am aware of are truly appreciative of your (CMS) informal decision of September 26, 2013 as they were finally able to obtain replacement and medical coverage for their depleted pulse generators.
As it was explained to me by Ms. Amy Larrick, Senior Advisor to the Principal Deputy Administrator Centers for Medicare & Medicaid that your change in policy would not be covered by a formal document and that a procedure would be instituted by way of those depression patients running into obstacles from their insurance carriers would be able to call directly to Amy who would assist in obtaining medical coverage. Amy made a point of also explaining that she (CMS) had no control or authority over the private health insurance carriers. What Amy and/or CMS was remiss in explaining to me at the time was that she (CMS) would not call, write, explain and/or share information regarding the change in policy by CMS to the private health insurance carriers and what I shall now refer to as your (CMS) “Stealth Decision” of September 26, 2013 to try to overcome the egregious, immoral, and discriminatory oversight in your past decision by not grandfathering care for this unique patient group for medical coverage.
Your (CMS) “Stealth Decision” has only been partially successful. What about these other patients who are also not at fault being left with an implanted medical device that no one wants to care for? How in good conscience, once again, can you (CMS) not advise the private health insurance carriers of your recent change in policy? This is not experimental as some of the private health insurance carriers have determined based upon your May 4, 2007. This is in fact a demonstrated beneficial therapy (encompassing multiple years of successful use) to these patients who want to continue the therapy and are irrationally being denied coverage and are being forced back into the abyss of the devastating “Black Hole” of depression and suicidal ideations.
“The death of common sense” more than aptly describes and covers the lunacy I read, see and hear once again in denying these unique and seriously ill patients replacement coverage and the fact your agency will do no nothing to inform these private carriers. Am I truly hearing correctly?
Doesn’t anyone think these ramifications through to a clear and logical conclusion anymore?
The private health insurance carriers quickly denied coverage with your 2007 decision. How can they possibly reconsider altering and/or changing their policy if you fail to update and inform them of your recent policy change?
Jonathan, I know you care and are compassionate. You told me so. I believed you. You and your agency have already demonstrated your sincerity in wanting to help. Then do something to overcome this additional idiocy and obstacle!
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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From: (redacted) [mailto:(redacted)]
Sent: Saturday, January 25, 2014 10:59 AM
To: Herbert Stein
Subject: Re: *RECALL MESSAGE: VNS Therapy...the egregious, immoral, unconscionable and discriminatory acts by private health insurance companies.
One day last week, the death of common sense came home to me in the local section of the Miami Herald - mandatory life sentences for 14-year-olds, a controversy over a school grade that was clearly an administrative error which they refused to correct, where released sex offenders can live (as contrasted to where they may go), and others of the same ilk.
Your latest diatribe smacks of this royally.
(redacted)
On Jan 22, 2014, at 12:12 PM, Herbert Stein wrote:
From: Herbert Stein [mailto:fabrik@bellsouth.net]
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?
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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