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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