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At 3 months, BMB was done and after a month I got the report that I am 67% Ph+ now. Doctor didn't say anything but I had a feeling that my response is slow. In the meantime Max Foundation replied to me sometime in Feb. 2002 that they have started their program in India but I am not eligible as I have not taken Interferon before and Glivec is not labeled for first line use. I informed my family about this but everybody said you continue until we cannot afford the medicine. I was regularly visiting www.newcmldrug.com and came to know Anjana. I bought the medicine for next 3 months with difficulty and with hope that some day Max Foundation will agree to consider my case. I told my doctor to discuss with them but Max Foundation said no to my doctor also. They said we cannot help a patient beyond the labeled indications and it will be a violation of WHO guidelines.
At 9 months, my BMB result showed that I am 100% PH+, this was the biggest blow to my confidence. I did not know what to do. I thought I may need a higher dose of Gleevec but I was running out of funds even for the standard dose. I appealed to Anjana and she contacted other patients and finally, Leeora Freifeldt agreed to help plead my case to Novartis HQ, Switzerland. She is a persistent advocate, I call her Kali Maa (A goddess worshipped in India). She presented my case to Novartis and shortly thereafter, my doctor informed me that Novartis will help me on compassionate grounds and on 3rd Dec 2002, I got my first box of Glivec from Novartis. Incidentally it was my birthday. Now Glivec is approved for first line in India and Max Foundation has informed me that they have included my name in GIPAP.(their assistance program)
I thank Novartis for including me in their compassionate use program so that I could continue Glivec and my dear brother for his help in financing the high cost of Glivec before I could obtain assistance. I am very grateful to patient advocates like Anjana and Leeora who helped me gain access to Glivec so that I could fight for my life. I have achieved CCR in my BMA done on 27th March 2003, after 16 months on Glivec (The fight has become easier and I am sure I will fight it out).
------Rakesh Nagpal,
New Delhi, India
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