Is Community the Key to Better Cancer Care?
By: The Washington Post – March 28, 2019
How a renewed emphasis on partnership among diverse health care stakeholders is transforming how we treat cancer.
At first, Rose Gerber didn’t think the lump in her breast was a big deal. With two kids in elementary school, the 39-year-old mother had other things on her mind. But after six months, the lump was still present, so she offhandedly mentioned it to her doctor at a routine physical. She’ll always remember what came next.
“Hearing that you have cancer is not just another day. It’s a really devastating diagnosis,” Gerber said. “Getting cancer is still a very, very devastating diagnosis.”
The doctors determined that Gerber had a rare subtype of breast cancer. By the time they caught it, the disease had spread to her lymph nodes and the prognosis wasn’t good. But with a treatment regimen that included an innovative clinical trial, Gerber was able to navigate the disease. She also credits the strength of various relationships for helping her navigate recovery-not only with her doctors, but also the wider community of caregivers. It’s a perspective that has informed her trajectory ever since.
Sixteen years later, she’s not only a survivor, but also a leading campaigner for a new model of cancer care. The director of patient advocacy at the Community Oncology Alliance Patient Advocacy Network, a nonprofit working to ensure cancer patients receive quality, affordable care close to home, Gerber is part of a growing movement advocating for community-based cancer care. She was also one of several national advocacy leaders who shared her story at last year’s Washington Post’s Chasing Cancer Summit as part of a panel discussion sponsored by AstraZeneca, designed to spotlight the entire community working to eliminate cancer as a cause of death.
These days, more people are surviving cancer than ever before. The modern approach to treatment is defined by multiple healthcare practitioners and community members -from doctors and nurses, the receptionist scheduling appointments, researchers and the pharmaceutical companies like AstraZeneca that develop potentially life-saving drugs, to a neighbor or caregiver coordinating casseroles, policymakers and all of the unsung heroes in-between-to collectively support delivery of the best possible outcomes.
“Think of the patient as the hub and the cancer community as spokes of a wheel,” said Laurie Fenton Ambrose, the CEO and president of the Lung Cancer Alliance. “As important as medical advancements and treatments are to patients-equally important is the team of researchers, doctors, nurses, families, advocates, friends, and other supportive services.”
A Leap in Cancer Care
Cancer happens when cells grow abnormally, threatening to spread to other parts of the body and uncontrollably destroy tissues. Although the first mastectomy, the surgical removal of a cancer-affected breast, was performed in the late 1880s, surgeons didn’t begin to refine cancer surgery until the 1970s. Similarly, while radiation therapy, which kills cancer cells and shrinks tumors, and chemotherapy, which does the same using drugs, were developed in the early 1900s, they were blunt tools until recent decades. In fact, scientific knowledge about cancer advanced more in the past 20 years than it has in all of human history.
This leap forward relied on a one-size-fits-all approach. Depending on the type of cancer and its stage, a doctor would typically offer a single, prescribed treatment plan. Patients generally had the same type of surgery, dose of radiation and drug regimen, regardless of their age or medical history. In recent years, however, this tactic has been upended as care becomes increasingly individualized. One of these advances is known as precision medicine, a treatment that takes into account the unique genetic makeup of each patient’s tumor to determine the most effective course of treatment.
“It’s only becoming more complicated as we begin to understand that each patient’s cancer is unique and one-size-fits-all therapy may no longer be the most effective option,” said Jill O’Donnell-Tormey, CEO and director of scientific affairs at the Cancer Research Institute.
Fenton Ambrose agrees that cancer treatment has become more personalized, adding that it is now “individualized to a person’s diagnosis because of an increasing number of exciting breakthroughs related to new markers or mutations that are driving drug development strategies and resulting in improved outcomes.”
Cancer research and treatment continue to grow at a dizzying speed. Alongside precision medicine, nanotechnology is making it easier to determine the exact location of tumors to deliver drugs directly to them and robotic surgery is reducing the trauma and invasiveness of certain procedures. Meanwhile, the US Food and Drug Administration approved 18 new cancer therapies in 2018, up from just eight approved between November 2016 to October 2017. Clinical trials of adoptive cell immunotherapy, a groundbreaking technology that uses the patient’s own cells to attack their tumor, have proven effective against certain types of hard-to-treat cancers.
The results from these breakthroughs have been impressive. By 2016, there were an estimated 15.5 million cancer survivors in the United States. That number is expected to climb to 20.3 million by 2026.
In recent years, however, the approach to treatment has started to extend beyond just pharmaceuticals and technology, recognizing that cancer patients aren’t just a host for uncontrolled cell growth-above all else, they’re human beings.
A New Treatment Paradigm
For all the advances in modern cancer care, centering a patient in a community of support is one of the most important.
For decades, a patient’s treatment was determined almost exclusively by their physician. Today, that decision looks very different. Oncologists are increasingly communicating with a patient’s other doctors to determine how other health concerns might affect a course of treatment. Efforts are made to brief family members-notjust patients-on prognosis and treatment options, recognizing that these complicated decisions are almost invariably collective.
“What used to be a one-way conversation between a doctor and a patient has become a collaborative community effort involving many stakeholders, each with a critical role to play,” adds O’Donnell-Tormey.
Doctors are also implementing the lessons of precision medicine beyond genetics, considering how an individual’s unique circumstances-from medical history to available support network-should inform treatment. For one patient, heart complications from a cutting-edge clinical trial may be well worth potentially adding years of life; for another, it may not be.
Notably, this new paradigm hasn’t meant a de-emphasis in traditional treatments; development of effective cancer drugs is as important to survival rates as ever. Rather, pharmaceutical companies are taking a similarly collaborative approach. Many firms are involving patients from the beginning of clinical trials and drug development. Others are working directly with research institutions.
For Gerber, and many patients like her, these institutional collaborations are important, but not the whole picture. The new paradigm is about the fundamental relationship at the heart of cancer care-a personal connection between doctors, nurses, patient and caregivers.
“Nobody wants to just be the 2:15 appointment,” she said. “You always want to be seen as a unique individual. In my case, someone with two little kids, who loves travel, or whatever it is-to me, that’s what community care means.”
Spotlighting the Difference Makers
Programs like YOUR Cancer, created by AstraZeneca and launched in the fall with Gerber, Ambrose, and O’Donnell-Tormey at the Washington Post’s Chasing Cancer Summit are spotlighting the countless individuals and organizations who support those facing cancer.
The YOUR Cancer program emphasizes that cancer doesn’t have to be one person’s diagnosis to bear, and instead, is about making YOUR Cancer, OUR Cancer. It celebrates the many advancements that personalize and improve treatment, access to care and patient support across the United States toward the common goal of eliminating cancer as a cause of death.
“Advancing cancer care requires more than great science. It’s a collective effort driven by passionate individuals and organizations dedicated to making a difference for those living with and affected by cancer,” said Olivier Nataf, VP of US Oncology at AstraZeneca. “And for cancer patients and their families, the entire cancer community working hand-in-hand to offer relief in extraordinarily difficult times is cause for celebration. That’s why we launched YOUR Cancer-to spotlight those working to create a brighter future for people living with and affected by cancer, and ultimately, transform cancer care from one person’s journey into a true community effort.”
YOUR Cancer features a digital hub which is meant to be a place to convene the oncology community – including patients, caregivers, healthcare providers, researchers, advocates, policymakers, organizations, and everyone making a difference in the community. Many leading patient advocacy and professional groups have signed on in support of the shared goal with the hope of continuing to expand participation. Further, the program will bring together influential voices through state and federal roundtables to impact policy change and through thought leadership discussions around current issues in cancer care, with a goal of bringing us closer to eliminating cancer as a cause of death.
In further support of the broader oncology community, AstraZeneca partnered with Scientific American to launch the Cancer Community (C2) Awards, recognizing contributions made toward extending quality care to underserved communities, improving the patient experience, advancing precision medicine or just doing something incredible or inspiring to improve oncology care. Four winners will each receive $50,000 to “pay forward” to a non-profit serving the cancer community. They will also be honored at a ceremony in New York City occurring in May of this year.
To join the movement and spotlight the work being done across the cancer community and share what YOUR cancer means to you, visit www.YOURCancer.org.
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