No matter who you are, cancer is frightening, complicated, and overwhelming, according to Jill Biden, EdD, lifelong educator, former Second Lady of the United States, and cofounder of the Biden Cancer Initiative.
“When I think about people who are really changing lives, I don’t think about luminaries, heads of state, royalty, or Nobel Peace Prize winners,” she said at the AONN+ 9th Annual Navigation & Survivorship Conference. “I think of people like you; nurses and navigators, and those who show up every single day around the clock for people who need you most. You all save lives, that’s true. But you also make life bearable.”
Dr Biden speaks from personal experience. Several years ago, her sister developed a large growth on her lower back. At first, she kept it to herself. “She didn’t want to face the reality of the situation,” she said. Eventually it was diagnosed as lymphoma, and because she had waited months to see a doctor, it had dangerously progressed. She was given a low chance of survival, with only one real hope: stem cell replacement therapy.
“Most of you probably know how difficult that is for a patient: weeks of quarantine and extreme isolation. The procedures can be confusing and complicated, and they seem never-ending,” she said. “But thankfully for my sister and my family, she had an advocate every step of the way.”
According to Dr Biden, her sister’s nurse navigator didn’t just help her schedule appointments. She talked the entire family through all of the confusing medical jargon, and she told the family when they should be there and when her sister needed rest. “She cared for her when she was weak,” she said. “She made her laugh and gave her the hope she needed to keep fighting.” Now, 3 years later, her sister is in remission, and Dr Biden credits her nurse navigator with making the triumphs more joyful and the tragedies more bearable.
For over a year, Dr Biden also watched her “brave, funny, bright” son fight brain cancer. As her family tried to hold onto hope, she said his nurses made all the difference. She remembers one nurse who would bend down and sing softly in his ear while she prepped him for procedures. “I couldn’t make out what she was singing, but you could see his body relax at the sound,” she recalled.
“They treated Beau, and all of our family, with so much kindness and dignity,” she said. “You can’t always know what’s behind someone’s smile, or how much they need—we need—your grace and your strength. You may not see the difference you’re making in someone’s life. But I can tell you it’s enormous.”
Identifying the Gaps
From her advocacy work in Delaware, to the White House Cancer Moonshot, to the Biden Cancer Initiative, Dr Biden has been working in a cancer space for 25 years. In that time, she says, a lot has changed.
In that time there has been enormous effort to raise awareness and improve healthcare; according to the American Cancer Society, the death rate from cancer has fallen 26% since 1991. Yet, progress is uneven. Rural, black, Latino, and Native American communities see far fewer positive cancer outcomes. “Poverty draws a line between surviving and succumbing to the disease,” she said.
While earlier diagnosis, precision medicine, and immunotherapy have revolutionized the treatment of certain diseases, many cancers remain as deadly as ever. Individuals still struggle to cope with and understand the complicated medical environment, and patients and their families too often feel overwhelmed by medical jargon and treatment options. “They feel alone and confused by the complexity of the very healthcare system that is there to support their journey, and not for lack of trying,” she said.
According to Dr Biden, the gaps that exist in the world of cancer—between patients, researchers, physicians, advocates, nurses, navigators, etc—are untenable. “Despite decades of research, billions in funding, and the best medical minds in science working on this issue, there is still no word that’s as scary as ‘malignant,’” she said. “From research to treatment to support, all of the improvements we’re capable of making only matter if they’re actually improving lives.”
Bridging the Gaps
In 2017, then President Obama asked her husband, Vice President Joe Biden, to take the lead on the Cancer Moonshot. When the Obama administration ended, Dr Biden and her husband launched the Biden Cancer Initiative, borne from their moral imperative to eliminate the roadblocks that keep patients from connecting with cancer organizations doing lifesaving work.
“We’ve been hard at work on improving data standards and helping patients share that data, reducing disparities in cancer outcomes, calling for greater access to patient-centered clinical trials, and changing our culture so that we can make the best use of our investments,” she said. “But one of the most important guiding principles has been to find better ways for patients to navigate their cancer journey.” So, last year, with collaboration from AONN+, they launched a working group in patient navigation.
The working group comprises leaders in the field of oncology nursing and navigation from health systems, hospitals, professional societies, and cancer advocacy organizations. Together they are working toward identifying and implementing more effective patient navigation programs across the country, finding and spreading best practices, creating uniform accreditation, and designing metrics that demonstrate exactly what is working and what can be improved.
“Over the past decade, the field of patient navigation has grown across the country, and we’re seeing the result in better health outcomes,” said Dr Biden. “With the help of organizations like AONN+, we’re bridging the gaps in the cancer network. We’re working to provide resources, improve outcomes, and just as importantly, or maybe more importantly, provide hope.”
They convened community dialogues all across the country with patients, family members, and providers who have shared their perspective on the cancer journey. “With that knowledge, we have a much better picture of the cancer experience as a whole,” she said. “And it’s helped us to develop solutions to these problems.”
Translating Knowledge to Practice
“Right now, if we stop research entirely, if we never spend another dime on finding new cures, we could still save thousands more lives by doing just 1 thing: breaking down the barriers between the various branches of this movement and sharing the knowledge that already exists,” said Dr Biden. But beating this disease will require innovation and creative solutions.
“Together we are stronger, we are fiercer, and we are more powerful than this disease,” she said. “Keep fighting for your patients. Keep sharing your knowledge and talents, and most of all, know that we’re with you on this journey, working to make sure that you have the support you need, so you can focus on what you do best. We can save lives: if we act now, if we start today.”