Historically, cancer care largely focused on the fight for survival. Now, thanks to advancements in screening and treatment, many patients are living decades beyond their diagnosis.
Today, there are more than 18 million people in the U.S. who have survived cancer, a population that is expected to reach 26 million by 2040.
“We are facing a survivor tsunami that we are not ready for,” Karen Knudsen, PhD, former CEO of the American Cancer Society, told The Wall Street Journal in November.
As the cancer survivor population grows, health systems and cancer centers are navigating how to best provide care for patients in active treatment alongside the influx of survivors.
By definition, a cancer survivor refers to anyone living with cancer, no matter where they are in the course of their disease. From a healthcare delivery standpoint, survivorship is generally considered the time period after a patient has completed intensive curative therapy.
“We have a swell of patients who have completed active cancer therapy and are now living in the time period after their diagnosis where they still have a lot of medical needs,” Sheetal Kircher, MD, medical director of the Lurie Cancer Center Cancer Survivorship Institute at Northwestern Medicine in Chicago, told Becker’s.
Industrywide, awareness is growing about the importance of survivorship care to mitigate the long-term effects of cancer and its treatment. Health systems and cancer centers are elevating focus in this area, but oncology leaders say scaling survivorship services is difficult given a lack of research and reimbursement, as well as resource strain.
Becker’s recently spoke with several oncology leaders to untangle the operational complexities of cancer survivorship care.
An emerging discipline
It wasn’t until 2015 that the American College of Surgeons Commission on Cancer incorporated survivorship care as a requirement for accreditation. Around that time, Marleen Meyers, MD, founded the cancer survivorship program at New York City-based NYU Langone’s Perlmutter Cancer Center.
“Twenty years ago, 30 years ago, we were just happy if our patients survived,” Dr. Meyers, who still oversees the program today, told Becker’s. “The goal was just to cure people without any sort of thoughts about anything else.”
Initially, survivorship mostly entailed providing patients with care plans that outlined the treatments they underwent and guidance for surveillance. These care plans are intended to help primary care teams understand what their patients may be at risk for, and the routine screenings they need.
“We quickly realized that survivorship care was so much more individual than just a piece of paper,” Dr. Meyers said. Over the past decade, survivorship care has evolved to encompass a broad range of medical, physical and psychosocial needs.
Oncologist Saro Armenian, DO, told Becker’s that long-term survivorship actually emerged from the childhood cancer community. As pediatric survival rates began improving so dramatically, being “cured” became an expected outcome.
Dr. Armenian directs Duarte, Calif.-based City of Hope’s Childhood, Adolescent and Young Adult Survivorship Program, as well as the Center for Survivorship and Outcomes at City of Hope’s Hematologic Malignancies Research Institute.
“There was the recognition that not only are [children with cancer surviving], they’re going to live for decades,” he said. “As outcomes in adult cancers are improving, the reality of survivorship is really hitting folks.”
Who owns survivorship care?
As that reality sets in, hospitals and health systems are navigating how to structure survivorship care models that balance clinical effectiveness, resource contraints and financial viability.
The Commission on Cancer Care updated its accreditation criteria in 2021, requiring institutions to offer survivorship programs for patients who have completed their first course of treatment.
According to the American Society of Clinical Oncology, survivorship care should begin at diagnosis.
Through a survivorship compendium, the organization established eight survivorship care models for clinical practice, each with its own set of advantages and disadvantages, to help systems decide where responsibilities will land.
Dr. Kircher said survivorship care, regardless of which model is followed, needs to clearly define who is responsible for different aspects of patient care.
In the oncology specialist care model, patients receive follow-up care through their oncologist. While this model provides the patient with continuous care in a trusted environment, oncologists are not able to provide psychological support or meet survivor’s primary care needs.
Other models offer clinic-based solutions, ranging from disease-specific clinics to integrative care clinics. Again, these options come with drawbacks and may not be plausible for hospitals that lack systemwide support.
The ASCO’s community generalist model sees the ownership of survivorship care falling to primary care physicians, which medical oncologist Louise Legresti, MD, told Becker’s is unrealistic.
“To expect a primary care provider to keep up with the oncology survivorship literature, as well as all the literature in their field, is impossible. We can give them guidance on how to do that.”
Dr. Legresti is chief of cancer survivorship at New Brunswick, N.J.-based Rutgers Cancer Institute and West Orange, N.J.-based RWJBarnabas Health’s Cooperman Barnabas Medical Center in Livingston, N.J.
She believes when survivorship clinics are established within a health system or network, they can act as middle ground between oncologists and primary care physicians, bridging the gap that often appears after cancer treatment has ended.
As a standalone cancer center, City of Hope has built survivorship into its care model. Dr. Armenian said he considers it a moral obligation for care to go beyond treatment and diagnosis.
“One of our physicians is often quoted as saying, ‘Once we hold on to your hand at the time of your diagnosis, we don’t let go,'” he said. “There’s always some kind of a relationship that is maintained and nurtured over time.”
Once patients become long-term survivors, meaning they are two years out from their diagnosis and in remission, they return to City of Hope annually for risk-based assessments and monitoring at the survivorship clinic, which is not intended to replace routine care from a primary care physician.
“There is no age out, no transition time where you are completely out of the City of Hope system,” Dr. Armenian said. “You’ll always be physically connected to City of Hope. We have survivors who were treated back in the 1960s in our program.”
The ASCO survivorship compendium has provided an assessment flowchart to help hospitals and health systems decide which survivorship care model would best meet their community’s needs.
“We really need to think about it disease by disease and population by population, because we’re kind of answering to two different masters,” Dr. Kircher said. “How do we provide the highest-quality survivorship care in light of the fact that our clinicians are overwhelmed with patients? And how do we do this efficiently and in a way that’s financially sustainable?”
Dr. Kircher said the Northwestern team utilizes its advanced practice providers and nurses to alleviate the burden of care for physicians as survivorship continues to grow, since the number of patients the clinic can accommodate has not changed. APPs and nurses at Northwestern see the large volume of survivors who have lower-acuity medical needs, such as early-stage breast cancer patients.
“On the other end of that, some of our patients, like our transplant or post-stem cell transplant patients, … they see both our survivorship nurses, as well as their primary oncology team,” she said.
But deciding which care model to commit is not the biggest challenge hospitals and health systems will face when establishing a survivorship program.
“The issue is not really about infrastructure so much as it is about who owns the gathering of information and sharing of information,” Dr. Armenian said. “That is the big mystery.”
Dr. Ligresti said survivorship care is a huge undertaking for any health system. Clear communication and coordination of care among oncologists, specialists and primary care physicians, preferably within the EHR, are extremely important to establishing and managing survivorship care, she said.
“Suvivorship is a network effort. It’s not just at the Cancer Institute, it’s all the [Robert Wood Johnson] institutions,” she said. “You can be buried under survivors, which is a good but difficult place to be.”
According to the American Cancer Society, 69% of cancer survivors in 2022 had lived for more than five years, 47% had lived for more than 10 years and 18% had lived for more than 20 years.
“Among the 18 [million] to 20 million survivors, half of them have lived more than 10 years after their cancer diagnosis,” Dr. Armenian said. “That’s telling us 9 [million] to 10 million people out there are dealing with cancer-related consequences in the decade after their treatment.”
For many institutions, reimbursement remains a barrier to scaling survivorship care, leaders say. While there are a number of CMS billing codes for navigation and care coordination services, utilization among oncology clinics and health systems remains low due to burdensome implementation requirements.
In 2024, CMS finalized rules under the physician fee schedule that created billing codes for navigation services that cover activities like connecting patients to community-based social services and health education. To qualify for reimbursement under two of the new codes, providers must provide 60 minutes of care per calendar month to an individual.
“At a practical level for a health system … that’s a really high bar to obtain a bill,” Dr. Kircher said.
Leaders described these codes as a step in the right direction, but said more robust reimbursement mechanisms are needed to improve access to survivorship care on a national scale. Absent adequate reimbursement, standalone cancer centers often fund survivorship services through philanthropic efforts.
“We have dedicated philanthropic support we tap into to help in the navigation and transition of our patients,” Dr. Armenian said. “I think, increasingly, a lot of places end up doing that.”
The path forward
Federal support and additional research are two key elements that could ultimately improve care coordination and support for the nation’s growing population of cancer survivors, according to oncology leaders.
In 2023, Congressional lawmakers introduced the Comprehensive Cancer Survivorship Act, a multi-pronged federal approach that would incentivize institutions to enhance survivorship services. The legislation would create a Medicare service and payment model for care-planning and coordination services, require Medicaid coverage of fertility preservation and direct federal agencies to conduct a study on the progress of survivorship care.
On the research front, experts say more studies are needed to better understand cancer survivors’ unique needs, and to determine under which circumstances certain care models work best.
“There’s not that much survivorship data and it’s hard to get good data,” Dr. Legresti said, adding that Rutgers has established the Cancer Survivorship Outcomes Center to conduct research on patient reported outcomes.
Dr. Meyers said research is particularly lacking on the needs of patients living with advanced disease.
“In the stage 4 community, people can live with metastatic disease for many, many years,” she said. “We need to start looking at their issues because they are somewhat different.”
Over the years, research has helped care teams develop tailored monitoring plans for childhood cancer survivors, based on disease type and treatments they received.
“The reason why we’re able to make those [precision survivorship care] recommendations, is because we’ve done a tremendous amount of research understanding what are the late effects of childhood cancer therapy,” Dr. Armenian said. “Unfortunately in the adult cancer world, the same investment hasn’t been made.”
As the cancer survivorship landscape evolves and more healthcare organizations begin to implement different care models, experts agree on one thing: cancer survivors need to know who they can rely on for care.
“Patients are left absolutely unaware of who’s supposed to help them when, inevitably, it’s January, they get a cold,” Dr. Kircher said. “Do they call their oncologist? Do they call their primary care doctor? They still have numbness in their hands and feet from chemotherapy, but they’re not really getting chemo anymore. Who do they call?”
