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She turned a diagnosis to a cause

Breast cancer survivor began Mexico project

Julio Frenk, dean of the Harvard School of Public Health, and his wife, Felicia Knaul, will talk about early detection tonight. Julio Frenk, dean of the Harvard School of Public Health, and his wife, Felicia Knaul, will talk about early detection tonight. (George Rizer/ Globe Staff)
By James F. Smith
Globe Staff / April 14, 2009
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Felicia Marie Knaul, a Harvard-trained global health economist living in Mexico, was 41 when she received a diagnosis of breast cancer and underwent a mastectomy. She responded by launching a nationwide early-detection project for breast cancer and sharing her own story of hair loss, chemotherapy, reconstructive surgery, and emotional survival.

This evening, when Knaul appears at a forum at the Harvard School of Public Health to discuss her work in Mexico, she'll have a champion on stage with her. The host will be her husband, Julio Frenk, a leading global health policy specialist who became dean of Harvard's School of Public Health in January.

"I have an ally in many, many senses," Knaul said.

"All of the work to start the program, and most of the presentations, we did as a couple, with Julio speaking very openly about his experiences as a partner of a woman with breast cancer, and how to provide the dignity a woman needs, especially when she's going through something like this."

Frenk said he felt the forum would be an appropriate way for him and Knaul to introduce themselves to the Boston medical community because the personal issue they confronted as a couple is so closely aligned with his policy priorities as he takes the helm at the graduate school.

"All my life I have studied the health system. It's been very revealing for me to be on the other side, on the receiving side, and to feel what a patient has to go through in diagnosis and treatment. It's given me a whole different perspective of my patient - the health system," Frenk said in an interview.

As Mexico's national health minister from 2000 to 2006, Frenk engineered an ambitious overhaul of public health insurance, creating a program that provided systematic coverage for the first time to the poorest half of Mexico's population of 109 million. Long before his wife's diagnosis, Frenk also enacted policy changes that made mammograms widely available to women 40 and older.

He said health specialists had long assumed that the biggest cancer threat to women in Mexico was cervical cancer. But Knaul, chief economist for the Mexican Foundation for Health, co-authored a 2008 research study showing breast cancer to have overtaken cervical cancer as a killer of women in Mexico.

"It was Felicia, motivated by her own disease, who actually graphed the timeline, and showed that in 2005 those two lines had actually crossed," Frenk said. "It took Felicia to grab those two trends and reveal something that no one expected."

Frenk left government to become a senior fellow in the Bill and Melinda Gates Foundation, as well as executive president of the Carso Health Institute, the Mexican foundation created by billionaire Carlos Slim Helú. The Carso institute is supporting Knaul's breast-cancer nonprofit.

Knaul recalled the discomfort in the Carso boardroom as she made her pitch on the eve of her surgery in 2007 - and laid out the sobering statistics of the problem in developing countries like Mexico. A key concern is that only 10 percent of cases in Mexico are detected in the earliest stage, when treatment is most successful. Most cases are detected by the women themselves, a sign of the lack of availability of early detection in routine clinic checkups.

Knaul decided early on to speak openly about the details of her own case. Given her prominence in Mexico, she was able to generate considerable attention in the media.

She wrote a paper last year in the journal Reproductive Health Matters titled "I Am a Woman Who Lives With Breast Cancer," which chronicled her own experience from the day her cancer was diagnosed in the left breast. She had three operations within five weeks, the last one a mastectomy.

Knaul described how she coped: running two to 12 miles a day on her elliptical machine has been vital, she said, for "sweating out the venom of the chemotherapy." But the key has been the encouragement from her two daughters, now 4 and 12, and her husband.

"Since my diagnosis, I have been in awe of what has happened between my husband and me," she wrote. "Our struggle with breast cancer made it possible for us to rediscover the essence of our relationship. . . . It also put tenderness back into our embraces. Many times over the course of my treatment, I asked myself: 'How many women, after 12 years of marriage, can say their husband is once again their boyfriend?' "

She disliked wigs to cover her bald head, so she opted for scarves. And she poured herself back into her work, including the new foundation, Tómatelo a Pecho. That can translate loosely into "Take it to heart." But in Spanish it's more literally "Take it to the breast," which also suggests breast-feeding.

She hopes that Harvard will launch a task force, including specialists from the Dana-Farber Cancer Institute and Brigham and Women's Hospital, to strengthen early-detection programs and help women live with cancer in developing countries. It would also address the cultural stigma related to breast cancer - a reality that Frenk said he saw firsthand as his wife underwent treatment.

"One thing that was quite shocking was to see the number of women who tell you they won't do mammograms because if there's a problem their husbands will leave them," Frenk said. "There is a huge amount of cultural prejudice. As well as medical cancer, there are social cancers that accompany breast cancer, including machismo in Mexico."

Frenk, who was runner-up last year to be head of the World Health Organization, delayed taking up his position at Harvard for a semester while Knaul underwent treatment. She will move to Boston with her children this summer, while staying heavily involved with her Mexico work.

"Having Felicia and Julio come to Boston and to Harvard is really a gift," said Dr. Paula A. Johnson, executive director of the Connors Center for Women's Health at Brigham and Women's. "They both bring tremendous experience in the world of public health, and a very targeted way of looking at health systems from a global perspective."

James F. Smith can be reached at jsmith@globe.com.