Patient Power
Today’s patients are a force to be reckoned with.

By Nancy G. Brinker

When my sister, Susan G. Komen, was diagnosed with breast cancer in 1977, patients were not encouraged to be partners in their care. Like so many women, Suzy was not educated about the disease. She accepted the advice of her doctors without question and was neither referred to a specialist for a second opinion nor given the chance to participate in a clinical trial.

Only later in her treatment did Suzy become part of the team. Her doctors at M.D. Anderson Cancer Center in Houston empowered her with information and made her a partner in every decision. But it was too little too late. Her cancer had spread throughout her body.

Three years after her diagnosis, Suzy lost her battle with breast cancer at the age of 36.

Ever since its founding in 1982, the Susan G. Komen Breast Cancer Foundation has dedicated itself to empowering a new generation of patients to take charge of their care. Empowered patients have changed the culture. More women now understand the importance of early detection and optimal treatment. Instead of a badge of shame, breast cancer patients, survivors and their families wear pink ribbons as a badge of honor.

Breast cancer patients and survivors have changed the clinical landscape as well, raising hundreds of millions of dollars for research. We’re witnessing amazing scientific advances that we once could only imagine. Vaccines, monoclonal antibodies and gene therapies give hope of taking aim at specific biological targets.

Today’s patients know more, want more and expect more—more information, more choices, more control. As a breast cancer survivor myself, I know that I am alive today because I became a partner in my care and took charge of my treatment. Because of the activism and efforts of patients, a diagnosis of breast cancer is no longer a death sentence. Mortality rates are dropping, and patients who only a few years ago may have died are now survivors. The five-year survival rate for women with localized breast cancer is now more than 95 percent. Unfortunately, the incidence rate of breast cancer is still rising. This year, nearly 270,000 women will be diagnosed with in situ and invasive breast cancer and some 40,000 Americans will die from the disease.

As U.S. Ambassador to Hungary, I saw the power of patients to change how an entire country deals with breast cancer. While I was in Budapest, I marched with hundreds of patients and survivors across that city’s historic Chain Bridge to raise awareness in a society that still discussed breast cancer in whispers. Since then, a national public health campaign has increased the percentage of Hungarian women screened for breast cancer from about 40 percent to 60 percent in just three years—a remarkable achievement that has saved countless lives and sent a powerful message of hope to the world of what is possible when women are empowered.

After that first historic walk across the Chain Bridge, one woman said, “We were not sure such a huge event could be done in Hungary. Maybe we were not brave enough. So we thank you.” In the United States and around the world, we have to continue to be brave enough to beat this disease. Patients have to be brave enough to take full ownership of their health and demand the care they want. Providers have to be brave enough to fully embrace patients as true partners.

Like many, I believe that we can cure breast cancer in our lifetime. When that day comes, we will be able to thank millions of people for their contributions—especially the generation of patients that armed themselves with information, insisted on a greater voice in healthcare decisions, demanded new treatments and fought for the research that led to the cure.

Nancy G. Brinker is the founder of the Susan G. Komen Breast Cancer Foundation and served as U.S. Ambassador to Hungary from 2001 to 2003. In 2005, she received the prestigious Mary Woodard Lasker Award for Public Service for creating one of the world's leading organizations devoted to fighting breast cancer and increasing public awareness about this disease.