Time is running out for these patients…

From: Joyce and Herbert Stein [mailto:fabrik@bellsouth.net]
Sent: Tuesday, September 10, 2013 12:26 AM To: Jonathan Blum, Deputy Administrator Director – CMS; Madam Secretary Kathleen Sebelius – HHS Subject: A continuing please for a favorable “Compassionate use” decision for the already implanted VNS depression patients…

Dear Mr. Blum,

I had some computer problems and was just able to retrieve my emails from yesterday. 

I have copied and pasted below another email that I just read.  I several minutes ago got off the telephone with the young woman who sent the email giving me verbal permission to share her correspondence publicly.

Need I say more to you or Madam Secretary Sebelius.  Joyce, this young woman Amy and the other patients are running out time.  They do not want to return to a living hell.

We are all pleading for a favorable “Compassionate use” decision from you or the Madam Secretary, now!



Joyce and Herbert Stein

1008 Trailmore Lane

Weston, FL 33326-2816

(954) 349-8733




From: Amy [mailto:keyanote@gmail.com] Sent: Monday, September 09, 2013 3:00 AM To: Joyce and Herbert Stein Subject: Re: A continuing please for a favorable “Compassionate use” decision for the already implanted VNS depression patients…


 I really hope you receive an answer soon. Things are getting worse here…I started a new drug called Latuda and increased the Lamictal but I am feeling so bad tonight.  I’m am crying uncontrollably and feeling hopeless.  Life is getting back to what my “normal” used to be back before I had the VNS.   If they want a real live experiment of what happens when the battery dies…here I am.  Thank you for all your work and letters. 

~ Amy

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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