Delivering Meaningful Care for All: The Promise of Patient Navigation

March 2020 Vol 11, No 3

Categories:

Patient Navigation

“Where a woman lives should not determine whether she lives.”

Nancy Brinker vividly recalls her sister, Susan G. Komen, saying those words in the waiting room at MD Anderson Cancer Center in Houston sometime after she received a diagnosis of metastatic breast cancer.

“I’ll never forget that as long as I live,” said Ms Brinker in the keynote speech at the AONN+ 10th Annual Navigation & Survivorship Conference. “It just said everything that had to be said.”

Nancy Brinker, global cancer advocate, consultant, and founder of Susan G. Komen, the largest breast cancer organization in the United States, has been a leader in the global breast cancer movement for decades. Her journey began with a promise to her dying sister “Suzy” that she would do everything in her power to end the shame, pain, fear, and hopelessness caused by breast cancer. In 1982 she founded the organization in her sister’s name, and to date it has invested nearly $3.2 billion into breast cancer research, education, screening, and treatment.

She more recently cofounded the Promise Fund of Florida to improve outcomes and reduce deaths among patients with breast and cervical cancer. The goal is to implement a healthcare delivery system that connects patient navigators with individuals in need, with a goal of raising $5 million by 2021.

Ms Brinker acknowledges that she has been privileged to have access to quality healthcare in her lifetime but finds it “unacceptable” that the same access is not afforded to everyone in the United States who needs it.

“In many ways, I’ve been involved in this fight my entire life,” she said. “Providing care to those who need it, trying to cure cancer according to my sister’s mandates and wishes, and meeting people all over the world with the same desire.”

According to Ms Brinker, her mother is to thank for her altruistic spirit. When she and her sister Susan were young, their mother regularly took them to volunteer on summer days in exchange for afternoon trips to the swimming pool. One day, she and her sister were complaining in the back seat on the way to volunteer when her mother pulled over and told the girls to get out of the car.

“Freedom isn’t free,” she told them. “It’s up to us, people who have the resources, to do everything in our community that we can, to be good stewards of our country, and to help those in need. I want you both to commit to me that you’ll be good stewards.”

Although Nancy had no idea what a steward was at the time, Susan smacked her on the arm and whispered, “just say yes so we can go swimming!” And the rest, as they say, is history.

Susan was diagnosed with breast cancer at the age of 33. “None of us knew what to do,” Ms Brinker said. “She was so young and had been so healthy.” Susan fought bravely, but because of where they lived, in rural Illinois, her family did not have access to the best cancer care. But even if they had had access, the best care would not have helped her at the time, Ms Brinker said. She had metastatic disease, and in 3 years she was gone.

“It was the heartache of our lives,” Ms Brinker recalled. “But right before she left us, she grabbed my hand and asked me if I would do everything I could to cure breast cancer.” And she committed to her sister that she would.

She then had to decide how to fulfill her promise, and she got to work in 1981 on founding the Susan G. Komen Foundation. “Everybody said, ‘oh they’re just a bunch of ladies. They’ll get tired of this, because it’s going to be really hard,’” she said. “But even back then we understood the challenge of breast cancer couldn’t be solved by science alone; we needed a culture change.”

At the time, no one even said the word “breast” out loud, she recalls. It wasn’t just a diagnosis; it was a social stigma. It was “The Big C,” spoken about only in hushed tones.

“Fortunately, through decades of hard work, we managed to make a difference in the culture and the science surrounding breast cancer thanks to my sister’s heart, the stubbornness all of us had, and the money we were able to raise over the years: over $3 billion.” she said. About $1 billion of that sum has gone toward scientific research, while the rest has been allocated to community health.

But she learned along the way that paving the way for women’s access to cancer care was not easy. She was unsure at first of who or what to blame for these barriers—was it lack of education? Lack of social services? She finally learned that this general lack of access was due to a lack of trust in the healthcare system, a lack of consistency in the delivery of healthcare, and a lack of navigation. Disparities in social determinants of health (the economic and social conditions that influence health status) also hugely contribute to a lack of healthcare access, particularly when it comes to preventable cancers.

“That’s what bothers me most,” she said. “Having been involved in the cancer community now for over 4 decades, some of the most tragic scenes I’ve witnessed are women with preventable diseases dying because they didn’t get care soon enough.”

She witnessed this firsthand in Florida, where she lives. She told the story of a nurse colleague calling her about a woman with a necrotic breast. She decided then and there that a necrotic breast was simply unacceptable in the United States, and this, along with the myriad other health disparities she witnessed on a daily basis, drove her to help establish the Promise Fund of Florida, an organization built to educate and engage the members of South Florida communities in addressing the critical issue of preventive cancer diagnoses. Their independent network of community-based navigators works in these underserved communities to facilitate screening, diagnosis, and treatment of breast and cervical cancers and are partnering with other organizations such as Uber Health to address further barriers like transportation and job interruption.

She says Florida is only a microcosm of what is happening in the rest of the country, and that navigators play a crucial role in working to overcome these health disparities. “We see affluent neighborhoods right next to some of the most impoverished places you can imagine,” she said. “Over the past several years, 15,000 women in Florida have died of breast and cervical cancer, and who knows how many more have been improperly diagnosed. It doesn’t have to be that way.”

Although the Promise Fund may have started in Florida, she does not plan for it to end there, she said, calling on the help of navigators across the United States to get involved in these efforts and to join their team.

“You represent my favorite part of our healthcare system,” she told the audience. “And with your help and partnership, we will be able to make great inroads.”

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Last modified: March 10, 2020

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