Suzan Mc Namara - Chronic Myeloid Leukemia - CML

             Suzan Mc Namara is the patient  who started a petition to Novartis which is a corporation that produced pills for clinical trials conducted by Dr. Druker for CML patients. This is because the pills were only produced for these trials and not for the overall population. Thus, she was unable to take this new medication that was superior to the one she was currently prescribed. 
           Later, she received a phone call from Dr. Druker at her birthday (November 2, 1999), saying that Novartis has planned to speed up production. Finally, Suzan Mc Namara started in the trial on January 1, 2000 and went in complete remission.
          
‘’Novartis decided to produce at least the few pounds of STI-571 needed for an initial trial, and Dr. Druker began recruiting patients in June 1998. By December 1999, in a Phase 1 trial intended merely to find a safe dose, he reported that 23 of 24 patients on a high dose had gone into complete remission within a month, as judged by the return of white blood cell count to normal levels.

Within a few months the news of STI-571 began to spread among C.M.L. support groups on the Internet. Patients clamored to be enrolled, and Dr. Druker pressed Novartis for more of the drug. But the company was in a bind. Most candidate drugs fail in the testing process, however promising the initial results. To scale up so early from manual methods of synthesis to an industrial scale process would be an enormous risk. 

At this point a novel factor entered the company's usual decision making: organized pressure from patients. ''What really convinced Novartis was pressure from patients who could see this was a wonder drug,'' said Dr. Lydon, who left the company 1997 to form his own company. 

One of those patients was Suzan McNamara of Montreal. The interferon she was on made her miserable, causing hair loss, depression and insomnia. Ms. McNamara called Dr. Druker, who said he had no drug to give her. Recalling a Web site that helped generate petitions for causes like favorite television programs, Ms. McNamara, with the help of a physician friend, drafted a petition to Novartis. 

''We were hoping to get 200 names, and in two months before you knew it we had 2,000,'' she said. ''So we found the big honcho's name in Switzerland. We all put in our two cents and typed up the letter, saying there were people dying because they weren't getting the drug in time.'' 

The chief executive of Novartis, Dr. Daniel Vasella, said he had been impressed with messages he received from the patients. ''There was a big debate internally because we didn't have product,'' Dr. Vasella said of the shortages of STI-571. ''That was when I had the first communication with patients, and that's when I very much pushed for our people to make it. We needed to go from kilograms to tons. At the end of the day you are talking about something that can make people live or die.'' 

Within a month of sending her petition, Ms. McNamara received a phone call from Dr. Druker. ''It was on my birthday,'' she said. ''He said: 'I heard your petition has done lots of good. I think it really pushed them.' '' The company itself sent her a letter saying it planned to speed up production. 

''I started in the trial on Jan. 1, 2000, and I'm in complete remission,'' she said. ''It's a fairy tale story.'' 

Dr. Vasella said that one of his reasons for advancing STI-571 into full-scale production, despite the very early stage of its progress and the small population of patients, was a feeling that its applications would grow. As project manager for the Sandoz drug Sandostatin, he had found that the drug turned out to have more uses than initially predicted. ''So you add knowledge and insights, and I think to block something too early is a mistake,'' he said. ‘’

Extract of New York Times
'' Dr. McNamara obtained her PhD in Experimental Medicine from McGill University. Her studies focused on mechanisms of resistance for the treatment of hematological malignancies. Following her doctorate, she joined Health Canada as an Assessment Officer where she was responsible for the licensing of health products. She then joined the Quebec-Clinical Research Organization in Cancer as Project Manager where she manages study clinical related activities that include site initiation, investigator and ethical review board information, patient recruitment, and clinical data. She plays an active role in the ongoing scientific development of the CML Society. Dr. McNamara was diagnosed with CML when she was 31 years old and was actively involved in helping other CML patients obtain access to the new Tyrosine Kinase Inhibitors to control CML. After finally achieving remission from CML she went back to her studies and completed her PhD.''
Extract of The CML Society of Canada (who we are)