From: Rayilyn Brown Sent: Monday, October 26, 2015 11:12 PM To: Virginia Valenze Subject: Fw: Your Query Regarding Nilotinib Study From: Rayilyn Brown Sent: Monday, October 26, 2015 1:15 PM To: Valenze, Virginia ; parkinsn ; Shirley S Knox ; [log in to unmask] ; Ming-Jai Liu Cc: Ericksen, Veronica ; SANDERSON, Ayo ; Frable, Anna ; JaffeNagler, Alissa ; Ordell Nelson ; Don Reed ; sherry wilsey ; Gary Brown ; Christie Woodward ; Manuel Arellano Subject: Re: Your Query Regarding Nilotinib Study Ms. Valenze: Thank you for your speedy response to my email. My inquiry, however, was mainly about the cost of this cancer drug and I understood that Novartis had a “compassionate”policy for a leukemia patient who couldn’t afford the drug. Dr. Brian Druker, who developed the drug informed me that the Leukemia and Lymphoma Society paid for his research. Since Novartis didn’t develop this drug, I was wondering how such an outrageous price of S120,000 a year could be justified. I understand Georgetown University Medical Center is planning on conducting further trials using Nilotinib for other neurodegenerative diseases such as Alzheimer’s, ALS, and Huntington’s. If Tasigna or Nilotinib does prove beneficial or even curative to Parkinson’s and/or other diseases, there is a billion dollar market for Novartis at S1 per pill. Why not be truly compassionate and lower the cost of this drug? How heartbreaking it would be if unaffordable cures were available and millions had to beg for them. Thanks again for your kind consideration of my plea. From: Valenze, Virginia Sent: Monday, October 26, 2015 12:21 PM To: [log in to unmask] Cc: Ericksen, Veronica ; SANDERSON, Ayo ; Frable, Anna ; JaffeNagler, Alissa Subject: Your Query Regarding Nilotinib Study Dear Ms. Brown, Thanks so much for your inquiry regarding the study on Parkinson’s Disease. We understand that the cost of medicines can be challenging for some patients. Novartis offers a significant patient assistance program that provides our medicines for free or at a reduced cost to those who can’t afford them. This study was conducted independently from Novartis. We believe independent research helps advance medical and scientific knowledge about medical conditions and medicines and we are committed to patients, especially in areas where a significant unmet need exists. At this time, Novartis does not have a clinical trial program evaluating nilotinib in neurodegenerative diseases planned or underway. Questions specific to the trial should be directed to the clinical trial investigators as the study was conducted independently of Novartis. We wish you the best. Sincerely, Ginny Valenze Virginia A. Valenze Director, Advocacy & Alliance Development Novartis Pharmaceuticals Corporation One Health Plaza Building 200, Room 440 East Hanover, NJ 07936-1080 USA Phone: +1 862 778-6176 Fax: +1 973 781-8265 Cell: +1 862 926-7502 Email: [log in to unmask] From: Rayilyn Brown <[log in to unmask]> Date: October 20, 2015 at 7:01:12 PM EDT To: <[log in to unmask]> Cc: Ming-Jai Liu <[log in to unmask]>, parkinsn <[log in to unmask]>, Shirley S Knox <[log in to unmask]> Subject: $120 ,000/year cost of nilotinib I just learned of the dramatic and promising results of your cancer drug for Parkinson’s patients. I also learned it costs $10,000 a month. The drug’s developer, Dr. Brian Druker, received a taxpayer funded NIH grant to develop it. Why does Novartis charge $120,000 a year for this drug? Would’t Novartis make a big profit if millions of people could actually afford it? Parkinson’s is not a rare disease. There is also a big market in Alzheimer’s and I understand there are going to be trials with 2 cancer drugs with other neurodegeneral diseases besides PD. A response would be greatly appreciated. Thank you. Rayilyn Brown Past Director AZNPF Arizona Chapter National Parkinson Foundation ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn