As a health economist, Felicia Marie Knaul had studied the wide disparities in healthcare. She had witnessed how illness impoverished families and why cancer had increasingly become a disease of the poor. But it wasn’t until she was diagnosed with breast cancer that these inequities turned eerily real.
“It nauseated me more than the chemo that I could get the kind of care I was getting but others couldn’t,’’ said Knaul, wife of new University of Miami president Julio Frenk and who has a doctorate in economics from Harvard University. “Why could I get a drug and someone else couldn’t? I knew this happened of course, but living a health system is different than studying it."
Knaul was diagnosed with stage II breast cancer in 2007, when she was 41 and working as senior economist at the Mexican Health Foundation. As a mother to two daughters, then 11 and 3, she was stunned and terrified. Two unsuccessful surgeries, a mastectomy of her left breast, then several forms of drug therapy followed.
Living a health system is different than studying it.
Felicia Marie Knaul
Now, eight years later she doesn’t refer to herself as a survivor but as "someone who is surviving the disease." Yet it was this ordeal — and the realization of her good fortune to have an understanding husband and a strong support system — that became a decisive moment for Knaul. She refocused her attention to what she saw as a flagrant injustice: the imbalance in access to breast cancer screening and treatment for women in Mexico and the rest of Latin America. Her husband helped create the comprehensive national health insurance of Mexico, called Seguro Popular.
Soon after her first surgery and while in chemotherapy, Knaul came upon the idea of a nonprofit that would break down the obstacles poor Mexican women face. She launched Cancer de Mama: Tomatelo a Pecho, a group devoted to promoting awareness and early detection of the disease. (The phrase Tomatelo a Pecho, Frenk’s idea, literally translates into “take it to breast” but is used in conversation to mean “take it to heart.”)
Her organization has trained thousands of Mexican healthcare workers how to perform breast examinations and how to identify at-risk patients. The nonprofit also emphasizes breast self-examination, a key component of early detection. Knaul would also eventually go on to write a powerful book about her personal struggle with breast cancer, published in Spanish in 2009 and in English in 2012.
"Just thinking of the potential of such a program made me feel better," Knaul wrote in Beauty Without the Breast (Harvard University Press). "I was infused with enthusiasm for a mission and a cause that I could take on and defend. For the first time since the mammogram, I was able to perceive some benefits from the burden of my disease and my personal suffering."
Though the group is based in Mexico, its impact has been far reaching. The magazine Cancer Today said Knaul’s brainchild “has helped launch a global movement to improve cancer care in other developing countries.’’ Lessons learned by the organization’s leadership are certainly applicable in the U.S., where many healthcare disparities continue to exist. For example, while white women in the United States are slightly more likely to develop breast cancer than African-American women, black women are more likely to die of it, for various reasons beyond genetics.
It’s not just breast cancer that reflects the disparities in the health system. Knaul points out that poor women with easy-to-diagnose cervical cancer die at a much higher rate, as do children with retinoblastoma (a type of eye cancer) who live in poorer countries.
In Mexico, Knaul discovered that money or lack of health insurance wasn’t the only barrier to proper screening and treatment for breast cancer. Though women were covered under the country’s Seguro Popular, “discrimination, machismo, lack of awareness and fear prevented them from seeking help.’’
Knaul talks movingly about meeting women who had allowed their tumors to grow unchecked, women who didn’t know what a mastectomy was, women who had no one to care for their young children if they got treatment. Once, in a meeting at the Hospital de la Mujer in Yautepec, a city in central Mexico, a woman told Knaul she had no interest in knowing if she had breast cancer because “a woman without breasts is ugly.’’
"Do you think I’m ugly?" Knaul replied. Later, Knaul writes in her book, she begged the woman “to look at herself in the mirror and see that she was beautiful with or without breasts. If she did not believe she was lovely, who would?’’
Knaul elaborates: “In many places, the idea is, ‘I’m going to die anyway so why bother.’ But we have to make sure the message gets out, if you get treatment early, you can survive.’’
Latin American women, she added, fear their husband and boyfriends will abandon them if they lose a breast. “The real cancer is the cancer of discrimination.’’
Alongside breast cancer there is the very real social cancer of machismo.
Frenk, a physician who led Harvard’s school of public health before coming to Miami, couldn’t agree more with his wife. "Machismo pervades the entire social spectrum," he said. "Alongside breast cancer there is the very real social cancer of machismo."
Experiencing the healthcare system through his wife’s illness was an eye opener for Frenk, who served as Mexico’s minister of health. "For me it was a revelation," he said. "When I was on the other side of the table, I learned more about the health system than I had in all the years of studying it."
Knaul’s journey to Miami has been a circuitous one. Born and raised in Toronto, Knaul grew up with "a healthcare system that was my right because of citizenship." Her father was Holocaust survivor who died from stomach cancer when Knaul was still a teen. His life inspired her to advocate for the helpless and the forgotten. As a doctoral student at Harvard, she worked with street children in Latin America as part of her thesis and spent several years in Colombia, helping the government reform its health system. That’s where she met Frenk, who had been brought in from Mexico as an adviser.
The two married in 1995 and made their home in Mexico. As Frenk oversaw the establishment of Seguro Popular, Knaul helped her husband while also working to establish the first hospital-based schools in Mexico for kids with long-term illnesses.
I feel quite comfortable here. I’m hearing a lot of conversation about people who are from somewhere else, people who talk about the pain of migration, of leaving so much behind. I think that has a huge potential for work on issues of social justice.
Felicia Marie Knaul
In 2009 she and Frenk moved to Boston when Frenk was appointed dean of the Harvard School of Public Health. There, she became director of the Harvard Global Equity Initiative, a research center focused on reducing global healthcare disparities, and an associate professor at Harvard Medical School.
Here, at the University of Miami, Knaul is a tenured professor at the Miller School of Medicine’s Department of Public Health Science. She also serves as director of the Miami Institute for the Americas, where she hopes to develop more interdisciplinary academic programs.
Soft spoken but intense, quick to smile and obviously passionate about the topics close to her heart, she says she is growing into her role as UM’s first lady.
"I’m really enjoying meeting the students," she said. "They’re a much more varied group than I’ve seen in the past."
And it’s that variety that inspires her. "I feel quite comfortable here. I’m hearing a lot of conversation about people who are from somewhere else, people who talk about the pain of migration, of leaving so much behind. I think that has a huge potential for work on issues of social justice."
If you go
What: Susan G. Komen Race for the Cure.
When: Saturday: registration, 6 a.m.; survivor procession, 7:30 a.m.; 5K timed run, 8:45 a.m.; 5K non-timed walk/run, 9 a.m.
Where: Bayfront Park, 301 Biscayne Blvd., Miami.
Cost: 5K timed run, $40; 5K non-timed walk/run, $35; one-mile Fun Run, $35; children 8 and older, $20; Tot Run, ages 2-7, $10. Costs increase by $5 on race day, except for children and tots.