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You launched the foundation in 1981 in honor of your sister, Susan, who died from breast cancer. What was it like trying to raise awareness at the time?
In the early 1980s women didn’t have the place to talk about their diagnosis or share their feelings. It was almost taboo, even among their loved ones. It was a real challenge to share their insights on treatment and even their hope for survival. I had lost my only sister, Suzy, to the disease in 1980, and I promised her that I would help cure breast cancer.

It’s now been more than 40 years of my life, from when Suzy was first diagnosed in 1978. I realized then that we had to do something, and it was going to require a movement. It wasn’t just going to be a one-time fundraiser—it had to be an inclusive movement where we could reduce the stigma associated with the disease. And of course, this pre-dated computers and cellphones and fax machines. We really only had telephones and each other to work with. So, we got to work.

We named the organization “Susan G. Komen” in Suzy’s honor and set about working for many years. We’ve managed to raise awareness and we’ve created a worldwide community focused on research, early detection, and bringing about an end to breast cancer.

Nearly 40 years on, what is the most significant way awareness and support for a cure has shifted?
The early 1980s obviously pre-dated computers, at least public access to computers and smartphones and fax machines and everything else. We couldn’t fire up Facebook or Twitter or Instagram. Relatability barriers existed that stood in the way of spreading awareness about the disease. We knew we had to foment a sense of community.

Organizations today, such as Susan G. Komen and my most recent initiative, The Promise Fund of Florida, really have grown by leaps and bounds bringing care and best practices to people on a more personal level. Let’s face it, everybody knows someone impacted by breast cancer. For many of us, we know multitudes of people who have been impacted. Through experience and knowledge, and personal storytelling, we extinguish the unknown and fear of the unknown.

To address the fact that African-American women are 40% more likely to die from breast cancer than Caucasian women, the foundation recently launched the African-American Health Equity Initiative, which aims to reduce cancer disparities by 25% by 2024. When was the pivotal moment that the organization recognized there was an opportunity to help address these health inequities?
Overall, breast cancer diagnosis in younger women is more difficult than in elderly women. However, African-American women are often diagnosed at a young age, when the disease tends to have the worse diagnosis. Additionally, if you are of Ashkenazi Jewish descent, you have a higher risk of a BRCA gene mutation.

The racial disparities gap in breast cancer diagnosis, mortality, and survival has continued to widen in the U.S. between white and African-American women, despite a continued decrease in mortality rates. For instance, between 2008 and 2012, the median age for women diagnosed with breast cancer in the U.S. was 61 years. The median age was actually lower for African-American women (58 years) than for white women (62 years).

I firmly believe that where a person lives should not determine whether they live. All women should have equal access to quality breast health. That’s why I joined Julie Fisher Cummings and Laurie Silvers in founding The Promise Fund of Florida. Our organization has the goal of raising $5 million dollars by the end of 2021. This money will be used to expand our network of community-based breast and cervical health “navigators” among underserved communities to facilitate both diagnosis and treatment at qualified, local health facilities.

Community health navigators, who will be selected and trained by professionals adhering to these standards, will live within the communities they serve and collaborate with local healthcare organizations and resources to guide patients to available services. The Promise Fund of Florida hopes to create a database to serve as a clearinghouse of community-based resources and services, and funds will be distributed through a peer-review grant mechanism to support the training of patient navigators.

At the Concordia Annual Summit you’ve spoken about how cross-sector platforms like Concordia can help amplify critical issues such as breast cancer awareness. How is Concordia uniquely positioned to do this?
Global health leaders and innovators need convening events that are similar in nature to Concordia’s Annual Summit so that we can communicate what we’re doing. Matt Swift and the team at Concordia deserve tremendous credit for putting on a first-rate event with the headliners and decision makers who stand at the leading edge of international thought leadership. Through engaging broader audiences, and striving for more effective communication and collaboration, we can share best practices, maximize resources, and effect the kind of change that is required to achieve community impact on a global scale.

After all these years, what frustrates you most about not having found a breast cancer cure and what do you believe are the critical steps to ensure a cure is found?
I’m not frustrated. In fact, I’ve never been more hopeful that a cure is within reach. Seeing the invisible is never easy, but it’s necessary. Losing my sister to the disease was gut wrenching. Surviving cancer just a few years later myself, going through chemo, seeing the impact of the disease not only on myself, but my loved ones—my son who was just a little boy, in particular—that was a heart breaking. Yet I know that my story is one that can be told many many thousands of times the world over. I know this year that 268,000 new cases of invasive breast cancer will be diagnosed in the United States. I know that more than 40,000 women will die from breast cancer. I know through communication, awareness, and action, we can save lives so more kids will grow up with their mothers. I know we will find a cure, and until that time, I will never ever give up in this fight.

The foundation’s advocacy has helped reduce breast cancer deaths by 40% since 1989. What keeps you hopeful?
I have witnessed what started with $200 and a shoebox full of potential donor names grow into the world’s largest nonprofit source of funding for the fight against breast cancer. To date, Susan G. Komen has invested more than $3.2 billion in research, community health outreach, advocacy, and programs in more than 60 countries. You’re correct that these efforts have helped reduce deaths from breast cancer by 40%, but I won’t stop until the promise I made to Suzy is fulfilled.

That’s why today I continue my work with The Promise Fund of Florida. I’m also consulting overseas on projects that help to increase access to healthcare, including getting women the screening technology they need to diagnosis and treat cancer early. I’m also co-authoring an updated version of my best-selling book with friend and journalist Eric Rosenthal. All of this, along with the thousands of stories I hear from those who are impacted by cancer, the families of the fighters and loved ones who know survivors—they inspire me each and every day; they bring me hope and the knowledge that despite the fact that this journey is long, its destination remains within reach.

 

The Promise Fund provides ongoing resources to help women and their families face breast and cervical cancer. Learn more at https://promisefundofflorida.org/