Alysia Santo, a 2011 alumna of Columbia University's Graduate School of Journalism, is currently working for the Albany (N.Y.) Times Union Investigations Team via a Hearst Corp. Office of General Counsel fellowship.
"I was working as a waitress and uninsured at the time (of diagnosis)," Santo said in an article she wrote for the Times Union. "A normal white cell count is around 4,500 to 11,000 per microliter. When I finally went to the emergency room to figure out what was wrong with me, which I had been avoiding because of the cost of seeing a doctor, I had a white blood cell count of close to 400,000."
For two years, Santo was treated with Gleevec, a tyrosine kinase inhibitor.
The research of Dr. Brian Druker of the Oregon Health & Science University and colleagues in the 1990s led to the development of a new generation of cancer drugs, tyrosine kinase inhibitors, most notably Gleevec for chronic myeloid leukemia, which, unlike chemotherapy, targets specific genetic defects causing cancer.
Santo said she currently is taking a new drug, Tasigna, which costs more than $100,000 a year -- about triple her income and a drug her health insurance does not cover in a way that is affordable.
Novartis, which also manufactures Tasigna, provides Santo and about 5,000 other insured and uninsured patients these tyrosine kinase inhibitors as part of its patient assistance program.
Despite the generosity of Novartis providing the drugs free to those who cannot afford them, Novartis' sales of Gleevec were $4.7 billion in 2012, while Tasigna made $1 billion in sales.
Friday, Santo said she will have the opportunity to shake the hand of Druker and others who helped develop the drugs that have kept her alive. Druker, Dr. Peter C. Nowell of the University of Pennsylvania and Dr. Janet D. Rowley of the University of Chicago are scheduled to be in Albany to receive the $500,000 Albany Medical Center Prize in Medicine and Biomedical Research for their groundbreaking research.
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