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great letter and thanks so much. Manuel

From: Fumi Arellano 
Sent: Sunday, November 15, 2015 3:41 PM
To: R Brown 
Subject: US Senator McCaskill

Rayilyn,

Please see below my digital submission to Senator McCaskill a moment ago regarding the sounds of silence from Novartis regarding my 10/31/2015 inquiry.

Manuel

**BEGIN**
It has been brought to my attention that a medical research team led by Dr. Brian Druker has developed a drug known as Nilotinib with the financial assistance of the Leukemia & Lymphoma Society.  That drug is manufactured by Novartis and has been known to dramatically reduce the symptoms of Parkinson’s disease.  From my review of the literature the annual cost of the medication is $120,000.  That cost is well beyond the reach of the 100,000 employees and families of the Los Angeles Unified School District, of which I am one.  I posed the question, "How may citizens of the United States of America and beyond suffering from the ill effects of Parkinson’s disease access Nilotinib in significant numbers to alleviate their suffering during the clinical trials stage?" to August Salvado, VP Early Development at Novartis on 10/31/2015 and have not received any type of response from him or his company.

Hence, while performing additional research using the Internet, I learned that you are a member of a special United States Senate Committee on Aging with an interest on the impact the mergers in Big Pharma are having on the cost of prescription medications.  I am hopeful that you and your United States Senate colleagues will be able to secure reasonable responses from individuals such as August Salvado at Novartis.

Thank you very much for your time and attention to my sharing with you my attempts to reach out to Novartis.

Manuel Arellano, [log in to unmask]
1319 North Marine Avenue
Wilmington, CA  90744-2519
**END**



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From: [log in to unmask]
To: [log in to unmask]
CC: [log in to unmask]; [log in to unmask]; [log in to unmask]; [log in to unmask]; [log in to unmask]
Subject: clinical trials for Nilotinib/new info
Date: Thu, 12 Nov 2015 20:17:26 -0700


I saw my  neuro and the Director of the Movement Disorder Program at the Cleo Roberts Center for Clinical Research today and  learned

“Dr. Moussa and colleagues are now planning a double-blind, placebo controlled phase 2  clinical trial testing nilotinib in patients with PD and other neurodegenerative diseases (including   Alzheimer’s disease).  The  study is likely to begin in 2016.”

“The phase 1 study received philanthropic funding and  was supported by the  Georgetown-Howard Universities  Center for Clinical and Transitional Science.  Dr.  Charbel Moussa is an inventor on a Georgetown University  patent application for use of nilotinib and other tyrosine kinase inhibitors for the treatment of neurodegenerative diseases.  Colleague Dr. Fernando Pagan has disclosed no relevant financial relationships.’


Director explained to  me that because of patent, others cannot do trials without Moussa/Georgetown approval.  He will see Moussa this  month and relay my appeal for more trials, hopefully at the Barrow in Phoenix or the Cleo in  Sun CIty.    

email  Dr. Charbel Moussa at this  site.  you  have  to fill out form giving your email, his is not shown.  I emailed him but am too tired to keep  looking for snail mail address now.  I think Tony Adler has it.

http://contact.georgetown.edu/mail/
phone 1-202-687-7328 if you can speak

Both  neuros  will keep  me Informed, so we should know  more  soon.

PS- I donated my brain to brain bank

Ray
Rayilyn Brown
Past Director AZNPF
Arizona Chapter National Parkinson Foundation

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