Monday, June 20, 2005
Suzan McNamara spends hours holed up in a research lab, just like other science students studying for a doctorate.
In her case, though, the work is not only close to her heart but her health.
McNamara does leukemia research at the Jewish General Hospital's Lady Davis Institute for Medical Research.
Fit from bicycling to work every day, and with a wavy mop of hair stretching down her back, her appearance contrasts sharply with how she looked five years ago.
Then, seriously ill from chronic myelogenous leukemia or CML, McNamara said: "I was basically on my last limb." In January 2000, she took part in a clinical trial in Oregon for a new ground-breaking drug that ultimately restored her to good health.
Most patients who go through this kind of health ordeal want to get away from it once things settle down, said Pierre Laneuville, a hematologist at the Royal Victoria Hospital, who has treated McNamara.
But for McNamara, the new lease on life meant a new career path, where leukemia has become a focal point. In the lab, she is researching resistance to the standard treatment of acute promyelocytic leukemia.
When she worked as an office manager prior to her illness, McNamara wanted to go into science "because I wanted to find meaning to a 9-5 job."
"Then after this happened, it was like, without a doubt, this is what I have to do."
McNamara learned she had CML in 1998, when she was 31. "From the day I was diagnosed, I didn't have any hope - no hope. But it didn't mean that I gave up," said McNamara, a McGill University student.
The Swiss pharmaceutical company Novartis AG is familiar with her tenacious streak. In 1999, with her health slipping, McNamara learned of a new drug that was showing extremely promising results in preliminary tests. She launched a petition on the Internet, calling on the company to boost production of the drug, which was later named Gleevec, and expand its clinical trials.
She hoped to get 500 signatures; within three weeks, 4,000 people had signed the petition. Publications like the New York Times credited patient activism - and McNamara's petition - with playing a key role in getting Novartis to increase production.
McNamara got into a clinical trial in Oregon. Before she left her friends threw her a party. Everybody had a stricken look on their face, McNamara said, like when somebody is dying "and they're going to Mexico to take some crazy medication."
McNamara started responding to Gleevec, which blocks an abnormal enzyme. By then she was convinced she would live.
"I was coming back to an empty slate ... starting my life over again. And it is just the most amazing feeling in the world."
She switched into molecular biology at Concordia University for her bachelor of science degree. Then she got into an experimental medicine program at McGill that allowed her to fast track straight to a PhD with five years of research.
Cancer research - leukemia if possible - was her goal. "It's hard work and it's low pay and you have to have your heart into it," she said.
McNamara has put herself through school with "a lot of loans and credit cards." Her boyfriend also helped her. This year, she received a scholarship from the Fonds de recherche en sante du Quebec. "I feel like I should be here now, I got a scholarship," McNamara said, smiling.
Her doctor, Jaroslav Prchal, the director of the oncology department at St. Mary's Hospital, says he believes it is wise for patients to maintain a bit of distance from their disease and not try to be their own doctor.
Yet he suggested McNamara has managed to do both. "She is closer than most people (to her disease) but at the same time she has enough insight into the whole thing that she does not make her own decisions," Prchal said.
Novartis has sent McNamara to various events. They flew her to Ireland last Wednesday for a CML patient support group meeting. They also flew her to New York recently to do a television commercial and magazine ad for the company. (In return, Novartis made a donation to a charity of her choice.)
McNamara conceded that being in the spotlight has been difficult. This is, after all, a woman who has scolded friends for baking her a birthday cake because she didn't want to be the centre of attention. Because it is such a big drug, McNamara said she wants people to know about it. "But then when I get the attention, I'm like, 'OK, that's enough.'"
Now 38, McNamara feels healthy and undergoes testing every six months to make sure the leukemia remains in check. (She still has residual leukemia that is only detected on sensitive tests.) Laneuville said they don't think Gleevec can eliminate the disease completely.
"We think you can reduce it to a level where it doesn't cause problems ... so it becomes a chronic disease that people can live well with."
McNamara expects to obtain her PhD in December 2007. "At first you're like, 'Oh my God, I'm probably not going to cure cancer,' " McNamara said, wryly. You learn quickly, she said, that you will only contribute "the tiniest piece of the puzzle."
"That's how they got to a picture of my disease," she added. "I might publish one paper that has one key for the next person to go a further step. That's important."
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