Nancy Brinker’s Speech At The Abu Dhabi Ideas Festival

March 2, 2018
Remarks prepared for delivery.

Thank you for inviting me. This is an incredible conference, and I am honored to have a part in it as we discuss the possibility of creating a world without the threat of death from cancer.

I am here today because of a promise. My sister Suzy was a young mother with two children when she was diagnosed with breast cancer. Three years later she was gone. Before she died, Suzy asked me to promise her that I would do everything in my power to rid the world of breast cancer. I did. And that promise became the foundation of the organization that bears her name, Susan G. Komen.

I’ve spent more than four decades of my life involved in this issue, so I appreciate the “moonshot” analogy.  Indeed, fighting cancer might be the most difficult undertaking in human history.  One could even say, given the number of cancers we are seeking to cure, we are really shooting for the stars. And to do so, we must have a firm foundation on the ground.

This is not an objective that will be met by a single discovery, a single scientist or a single country. It will require a global effort unlike any ever seen. And so it is imperative that we continue to collaborate and identify ways to work together. Our panel today has been helpful in understanding the technical and logistical challenges we face in cancer research and treatment.

But today, I want to talk about an aspect of the cancer battle that I think sometimes gets forgotten – access to care. Because while I am the last speaker on today’s panel, this is a topic that must remain in the front of our minds and in the forefront of our efforts.

I grew up – and maybe some of you did too – during the era of polio. During the 1940’s and into the 1950’s, polio was considered the primary threat to children across the world. I can remember the fear that gripped our small town when a child was diagnosed with it, and not being allowed to swim at the pool during summer because my parents feared we would catch the disease.

So in 1955, when a polio vaccine was announced to the world, church bells rang out and people celebrated in the streets. And because of that, we tend to believe that the battle against polio was won in 1955. But it wasn’t. In fact, the battle against polio STARTED in 1955.

After the vaccine was created, it still took the collective efforts of governments, doctors, private companies and individuals to get that vaccine into the hands of people. And even with that broad and unified effort, it still took decades to eradicate the disease from the Western Hemisphere. Even today, the disease is still present in several countries — not because we don’t know how to beat it, but because we haven’t yet figured out a way to get the vaccine in the hands of all who need it. And this is a challenge we need to begin addressing with cancer.

At Susan G. Komen, we have set a bold goal of reducing the current number of breast cancer deaths by 50 percent in the United States by the year 2026. To meet this goal, we know we have to focus on the gaps in health care in our home country, the United States.

The United States has experienced a 38 percent decline in mortality from breast cancer from 1989 to 2014.  But I think of the words from one of my heroes Marie Curie, the late cancer researcher. She was the first woman to win a Nobel Prize, and is the only woman to win it twice. She said, “I never see what has been done, I only see what remains to be done.”

So while breast cancer mortality in my country may be declining, that decline is not equal across all racial, ethnic or socio-economic communities. For example, breast cancer mortality is nearly 42 percent higher for women of color. There are a variety of reasons for this, but what it really comes down to is access to appropriate care.

One-third to one-half of the 40,000 lives lost each year could be saved if the patients had access to high-quality care in a timely fashion. That is a startling figure.

To begin saving lives, we can’t just think big. We have to think small. We must start on the ground. If we’re going to save the world from the threat of cancer, we have to begin by saving our own neighborhoods.

That means a relentless focus on community-based program.  We don’t wait for people to come to us; we study our own communities and actively seek out those in need.

Every five to six years, we conduct an assessment known as a Community Profile in each of our Affiliate service areas. These profiles include breast cancer incidence, late-state diagnosis, death rates, and demographic and socioeconomic data. We are not content to simply know what is happening, we want to know why it is happening.

Using these profiles in partnership with our affiliates, we develop a Five Year Action Plan with identifying and prioritizing individual needs for each community.  Last year, Komen headquarters and U.S. affiliates funded 839 grants to community organizations in the U.S. and globally. These grants help communities address their unique challenges in education, screening, diagnosis and treatment. They also go to help with patient navigation programs, which is one of our most important focuses.

Our comprehensive Patient Navigation Programs ensure individual care that focuses on the movement of patients along the continuum of care, guaranteeing patients receive proper services, timely follow-up and can overcome the challenges they face – such as medical costs, child care or language barriers.

They also help with another critical aspect – transportation. The most at-risk patients generally live far away from medical facilities, and transportation is a real barrier in accessing the care that could save their lives. So we work with volunteers, ride-shares and transportation companies to make sure patients can get from Point A to Point B. For some patients, it can even mean a hand to hold walking down the hall in the hospital. Sometimes the simplest thing can make the biggest difference.

In New York City, Komen has worked to reach patient navigation goals through our collaborative efforts with partners across the region. And as we have done this work, we have also advocated for the collection of clean data that we hope will be widely shared so that we can all learn and improve our methods.

1. What we have learned is that navigators often don’t have access the data and the resources that would enable them to provide a better range of services. We can fix this!
2. We have learned there is a lack of standardized training for navigators. We can fix this!
3. And we have learned there are challenges in retaining navigators because of a lack of sustainable funding.  All of these are achievable goals.

Based on this knowledge, Komen convened a conference bringing together 120 public health practitioners to find ways to address these challenges through new pilot programs in communities across America.

This “think small” philosophy is being employed by our Komen affiliate in South Florida. There, our Community Profile told us that 1,500 people in the region are diagnosed with breast cancer every year, and nearly 300 will die. So to cut the number of deaths in half, this remarkable affiliate is focused on saving 150 lives per year.

Confirming the national data, the Community Profile in South Florida reported that, “Breast cancer is the most common cancer among African American women. African American and Hispanic women have higher rates of distant stage breast cancer than white women, and a mortality rate that is 40 percent higher. In the United States they are less likely than white women to survive five years.”

So if we’re going to save lives, we have to start by trying to change outcomes for those lives most at risk.  Our South Florida affiliate is working towards this goal with a pilot program to improve patient navigation in these communities.

One challenge they have already identified is that patient navigators are usually located at hospitals in the area, and those in the greatest need aren’t making use of these services. So, we need to go directly to the women who need our support. We will find an existing and active members of the community to serve as the navigators.  These community-based, embedded navigators will each guide 50 breast cancer patients through the continuum of care.  Komen research has shown an improvement in 5-year survival rates of women with breast cancer who were supported by patient navigation. Now we are taking the steps to get more of these navigators in the communities where they can make the biggest difference.

Why start in Florida?  Well, Florida is my home and we must start in our own neighborhoods. Also, Florida is the third largest state in America, but ranks last in women’s health care as reported by the Women’s Funding Alliance. Recently, the situation has gone from bad to worse. Natural disasters like Hurricanes Irma and Maria are straining a health care system that was already struggling. Since October, more than 239,000 Puerto Ricans have arrived in Florida – and another 1,000 are moving to the state every day.

This influx of people needing help is leaving women at greater risk of going undiagnosed with breast cancer and unable to access free or reduced-rate services. American citizens from Florida and Puerto Rico are at risk of interrupted care from relocating during the storm. So our South Florida affiliate is again stepping in to help fill the void.

In addition, to appeal to the high net worth donor, we have created the Promise Fund to specifically respond to Florida’s growing women’s health crisis. Our goal is to raise $5 million dollars this year to address the challenges left in our community by these terrible storms and the already weak women’s health care system.

I believe Susan G. Komen and our Promise Fund are showing how to lead – not just in response to the challenges of the future, but in response to the challenges of today.

As you know, Susan G. Komen is a great supporter of research and discovery. Since our creation, we have raised and invested more than $956 million dollars into breast cancer research – second only to our federal government. But we have also invested more than $2.1 billion in funding to screening, education and treatment programs that impact the communities where we work and live.

In summary, we must move beyond the idea that lives are exclusively saved by work in laboratories, and recognize that many lives can be saved by work in living rooms. We must be active, present and helpful in the communities where people are most likely to ignore their own symptoms and not seek out medical care–because where a person lives should never determine whether they live.  We the people must make sure each woman receives the care she needs.  And to do so, in the words of my mentor, Mary Lasker, “Science must meet society.”

This is a tremendous undertaking. But I have yet to meet a person whose life hasn’t been impacted by cancer. And I have yet to meet a person whose life wouldn’t be improved by us finally getting cancer under control.

We must view this challenge as Marie Curie did and keep our minds and hearts on what remains to be done.  If we keep working, keep fighting and keep innovating – in research AND in communities — I am confident we will see this disease defeated in our lifetimes.

Thank you for your interest in this fight, and thank you for having me.