Closing the Cancer Care Gap
Health economist and breast cancer survivor Felicia Knaul’s mission, which first started as a grassroots effort to increase breast cancer screening in Mexico, has expanded to address cancer care inequities around the world.
By Alexandra Goho
In 2010, Felicia Marie Knaul was asked to give a talk on early detection of breast cancer at the Hospital de la Mujer of Yautepec, just south of Mexico City. About 200 patients and health care workers filled the hospital’s auditorium to hear her speak. When the talk was over, Knaul recalls, a woman from the audience stood up and said in Spanish, “Why would I want to know if I had breast cancer? A woman without breasts is ugly.” Knaul, a breast cancer survivor who had a mastectomy in 2007, looked at the woman and asked calmly, “Do you think I am ugly?”
Knaul, now 48, is a petite and soft-spoken woman. But her warm and gentle demeanor masks a fiery determination. The health economist has spent nearly 25 years working to reduce health care inequalities in Latin America, and she often uses the story of the woman in the audience to illustrate the cultural barriers that prevent many Mexican women from undergoing regular clinical breast exams. “I believe there’s this sort of self-stigmatization. And fear of abandonment [by their male partners] is very common,” she says. What’s more, the majority of breast cancers in Mexico, especially among poor women, are detected late because of a lack of information and inadequate training of health care providers. Breast cancer is now the leading cause of cancer death among Mexican women, and the second most common cause of death overall among Mexican women between 30 and 54.
It was Knaul’s own breast cancer diagnosis at the age of 41 that marked a turning point in her career, focusing her attention on the huge disparities in access to cancer screening and treatment in Mexico. That realization spurred her to start Tómatelo a Pecho, a Mexican nonprofit aimed at improving early detection of breast cancer and combating the stigma associated with the disease. With that experience, she has helped launch a global movement to improve cancer care in other developing countries.
Knaul was born and raised in Toronto. Her father was a Holocaust survivor who died from stomach cancer when she was 18. In her book Beauty Without the Breast, a personal account of her experience with breast cancer (first published in 2009 in Spanish and in 2012 in English), she describes “the mute cry of the Holocaust that was tattooed on my father’s forearm.” Haunted by the fear and trauma he experienced in the concentration camps, her father transmitted that fear to the rest of the family.
“There are two ways to manage the pain of being the child of a Holocaust survivor,” says Knaul. “One is to say, ‘we must protect ourselves because it could happen again.’ The other is to say, ‘we have to make sure it doesn’t happen ever again.’ I chose the second path.” While pursuing her doctorate in economics at Harvard in the early 1990s, she did her thesis work on street children and child labor in Latin America and spent several years living in Bogotá, Colombia. “I had this very strong feeling that I wanted to do something for severe forms of injustice,” she says.
In 1993, while working on her doctoral thesis, she was hired by the Colombian government to focus on the country’s health system reform. Around that time, she met her husband, Julio Frenk, a physician from Mexico who had been brought in as an adviser for the reform. The two married in 1995 and settled in Mexico.
In 2000, her husband was named Mexico’s minister of health. Over the next six years, he oversaw the country’s health system reform called Seguro Popular—an effort to expand health coverage to more than 50 million Mexicans who lacked health insurance. During that time, Knaul was a senior economist at the Mexican Health Foundation, a nonprofit focused on health care policy and research, and became deeply involved in many health care initiatives, including the establishment of the first hospital-based schools in Mexico for children with long-term illnesses. She also worked closely with her husband on efforts to expand health coverage.
The Privilege of Access
In October 2007, when she had her first mammogram, doctors found a tumor in Knaul’s left breast. She was diagnosed with stage II breast cancer. After two unsuccessful surgeries to remove all the cancer, Knaul eventually underwent a full mastectomy of her left breast followed by 15 months of drug therapy, including chemotherapy and Herceptin, a targeted drug used to treat HER2-positive breast tumors. She then took tamoxifen, a drug used to treat hormone-sensitive tumors, for five years to help prevent the disease from returning. Almost all of her surgeries and treatments were performed in Mexico.
Knaul remembers feeling overwhelmed and terrified at the time of her diagnosis. Her youngest daughter, Mariana, was only 3 at the time; her eldest, Hannah, was 11. Shortly after her first surgery, she went for a long walk near her home in Cuernavaca, south of Mexico City. “I was feeling very sorry for myself,” Knaul recalls. “And then for some reason, as I was walking, I thought about what it would be like to have the same diagnosis and be poor or not have a stable family.” Knaul knew she was fortunate. She had unlimited access to the best doctors and hospitals in Mexico. But for the vast majority of Mexicans, this was not the case. As Knaul walked on, the idea for Tómatelo a Pecho formed in her mind.
Five months after her diagnosis and while still undergoing chemotherapy, Knaul launched Tómatelo a Pecho. The name refers to a colloquial expression, which literally means “take it to breast,” a riff on the phrase “take it to heart” or “take it seriously.” Through the program, she and her colleagues have trained thousands of Mexican health care workers to perform clinical breast examinations, identify patients at risk based on family history, and teach women to look for important changes in their breasts.