Dear Ms. Valenze:
Thank you so much for your response to my query regarding how Novartis justifies $120,000 a year cost of Nilotinib.
My interest and that of the Parkinson community was piqued when we learned this cancer drug showed promise for treatment of Parkinson’s disease. However, our elation was dampened when we were stunned to learn that “those who can’t afford them” is about everyone but Bill Gates!!
Because Georgetown and Drs. Moussa and Pagan hold the patent, other research centers cannot test this drug for PD without their
consent.
Dr. Brian Druker told me the Leukemia and Lymphoma Society funded his development of this drug. I also learned that the NIH provides research grants for drug development.
As an ovarian cancer survivor of almost 40 years, I did not appreciate the chemo that gave me seizures and huge hematomas, but the fact that my tumor was encapsulated.
We have waited decades for help. If it comes wouldn’t Novartis rather have a great profit at reasonable drug cost than giving it free to the millions of us who can’t afford it?
From: Valenze, Virginia
Sent: Monday, November 30, 2015 8:19 AM
To: Rayilyn Brown
Subject: RE: Your Query Regarding Nilotinib Study
Dear Ms. Brown,
Thank you for sharing your additional thoughts, and my apologies for the delay in response. We understand patients’ concerns about being able to afford medications and do have programs to help.
Let me share a little more background that may be of interest to you. When setting the price of our medicines, we consider several factors including the benefits they bring to patients, their positive impact on other healthcare costs and the investments needed for continued innovation in the fight against cancer. Investment in new medicines is a significant area of focus for us. In fact, we spent over $9 billion dollars in Research & Development across all Novartis companies in 2014.
We also offer significant patient assistance programs for approved indications. The program provides our medicines for free or at a reduced cost to those who can’t afford them. Information about this can be found at Patient Assistance Now Oncology site www.oncologyaccessnow.com or by calling 1-800-282-7630.
Thank you again for taking the time to share your thoughts. We do take this feedback seriously and are committed to working across the healthcare system to ensure that patients have access to medicines and that future innovative medicines are affordable.
Best,
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 [mailto:[log in to unmask]]
Sent: Tuesday, October 27, 2015 3:04 AM
To: Valenze, Virginia
Cc: Ericksen, Veronica; SANDERSON, Ayo; Frable, Anna; JaffeNagler, Alissa
Subject: Re: Your Query Regarding Nilotinib Study
Dear Ms. Valenze:
Thank you for you 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.
Rayilyn Brown
Past Director AZNPF
Arizona Chapter National Parkinson Foundation
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
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