Where We Belong: Centering the Needs of Patients
PATIENT PERSPECTIVE

Antonia Gimón works to keep the needs of breast cancer patients high on the public agenda in Spain, as well as empower patients with metastatic disease to live well.

 

When Antonia Gimón learned she had breast cancer (BC), nearly 20 years ago, she quickly discovered the lack of comprehensive support for women with the disease. She also knew that it was important for her to continue to live her life normally, as before the diagnosis, to maintain her engagement with family, work, friends.

"I remember it perfectly," she says of the day she received her diagnosis. "I left the hospital and walked to work. I did not want a ‘parenthesis’ in my life. I wanted to feel life’s normalcy, the ordinariness of work. The emotional breakdown was inside me but all around me, life continued to flourish, the sun continued to shine, and I knew where I belonged."

She soon realized that she wanted to help other women affected by BC, leading her to found the Cantabria Association to Support Women with Breast Cancer (AMUCCAN), now part of the Spanish Breast Cancer Federation (FECMA), where Gimón served seven years as president and is now vice-president. The federation serves as both resource and advocate for women living with the disease to access the most effective, appropriate treatment as well as the support needed to live a productive and satisfying life.

The federation has evolved to become one of Spain’s main cornerstones of support for women with breast cancer. Today, it connects 41 local and regional women’s associations from across the country, and represents over 40,000 women affected by the disease.

The past 20 years have brought advancements for breast cancer patients, especially those with early disease, but FECMA is aware that many needs remain unmet. "We have broken many glass ceilings already," says Gimón, but she stresses that it remains critical to assure equity in access to diagnosis and treatment, improve treatment options, enhance patient care by building multidisciplinary treatment teams, and make available better therapies for women with metastatic breast cancer (MBC) – who have been largely left behind as effective therapies for early disease have surged ahead.

To pursue its goals, FECMA works with government and health authorities to raise issues affecting women with breast cancer and collaborate in finding solutions. The organization develops health and information programs for BC patients, including how to live well, especially with advanced disease. Too often, these patients are neglected, their needs and abilities erased.

Gimón knows the importance of addressing the social, workplace, and economic problems caused by BC, problems that society and health systems need to recognize and combat. "It is crucial to maintain our personal autonomy," she explains, "and our desire to stay active socially and professionally – our desire to be acknowledged and to contribute. Breast cancer is a disease that should not be experienced in solitude and silence."