Katie Palay, who is in her 30s, has been in remission from Hodgkin lymphoma since 2010, but her cancer journey is far from over.

A self-described “anxious patient,” Palay kept track of every cancer treatment she received, and when she started researching them, she learned that they came with a number of long-term risks. Because she had proton therapy, for example, Palay was at greater risk of developing breast cancer. Other therapies made her more susceptible to leukemias or cardiovascular diseases.

Even now, Palay still gets care related to her lymphoma: an annual breast MRI, yearly visits with a cardiologist, dermatology follow-ups because of atypical moles caused by radiation from treatments. No one warned Palay that she would need this. Instead, she said, she learned about survivorship care “through my own research and talking to different doctors and taking a really proactive role.”

The medical system treats remission as the end of most patients’ experience with cancer, and like Palay, many survivors aren’t given follow-up care. This lack of follow-up leaves them vulnerable to long-term side effects like immune dysfunction, cardiovascular issues, secondary cancers, and infertility, along with mental health issues caused by surviving cancer.

The Comprehensive Cancer Survivorship Act (CCSA), a proposed piece of bipartisan legislation that was introduced in 2022 and then reintroduced in 2023, aims to fill the gaps in survivorship care and improve the quality of life of survivors like Palay. However, while the CCSA is nonpartisan and hasn’t faced direct opposition, its breadth and high-cost implications, along with recent cuts to programs like Medicaid and the National Cancer Institute (NCI), have made it a lower priority, and it needs to be reintroduced in the new Congress before it can be passed.

Even so, the CCSA remains relevant to a population of survivors that’s increasing rapidly. As of 2022, there were nearly four times as many cancer survivors in the US compared with the mid-1970s, and survivors like Palay now make up more than 5% of the US population.

“This is resulting in a considerable area of unmet need,” said Meghan Gutierrez, CEO of the Lymphoma Research Foundation.

A few of the act’s most noteworthy provisions include establishing a national standard of cancer survivorship care, which currently doesn’t exist, along with implementing programs to fund this care and advancing the state of knowledge about survivors’ needs.

For example, the CCSA would require the establishment of a Medicare service for cancer care planning and coordination. While not all cancer survivors are covered under Medicare, most private insurers base their codes off of Medicare’s, meaning that this billing code would set a precedent for these insurers to follow, making it easier for physicians to be reimbursed for survivorship care.

“[Survivorship] has not been really prioritized in terms of reimbursement,” said Amar Rewari, MD, Chief of Radiation Oncology for Luminis Health. Without a clear billing code, he said, it can be hard to determine how follow-up visits should be billed, making it harder for physicians to provide survivorship services.

Establishing this Medicare service would also create an official blueprint for physicians to follow when treating cancer survivors. In particular, this would set a standard for creating survivorship care plans (SCPs), or individualized plans that summarize patients’ cancer treatments and offer tailored guidelines for their follow-up care. While research showed that SCPs lead to better coordinated follow-up care and higher patient satisfaction, most survivors never receive one. For example, a 2020 survey found that only 17% of cancer survivors were given an SCP.

Many survivors aren’t aware that they have ongoing needs related to their cancer. Andrew M. Evens, DO, oncologist and deputy director of clinical services at Rutgers Cancer Institute, New Brunswick, New Jersey, estimated that about 80%-90% of his patients aren’t even sure what the term survivorship means when he brings it up with them.

“I think it’s our job as clinicians to encourage people to do the best they can with follow-up, to stress its importance,” said Carlin Callaway, DNP, oncology nurse practitioner and assistant professor, Department of Medicine-Medical Oncology at University of Colorado Anschutz, Aurora, Colorado.

Still, patients themselves can only do so much in a medical system that lacks clear guidelines for survivorship care.

“We try to do the best we can with whatever existing guidelines exist,” Evens said. Unfortunately, this can mean applying the guidelines intended for the general population to cancer survivors whose needs are different. For example, research shows that modifiable cardiovascular risk factors (CVRFs), which are higher than average in cancer survivors, also tend to be underdiagnosed and undertreated in this population. This may be because cancer survivors often develop these CVRFs at a younger age than the average but aren’t typically screened earlier than the age recommended for everyone.

These SCPs would also address survivors’ psychosocial health, which can come with serious challenges. As Erica Campbell, who has been in remission since 2013, explained, “I wasn’t in an okay space even after my treatments…I wasn’t the Erica Campbell that I was 6 months prior.”

Like many survivors, Campbell felt traumatized by her experience and struggled with ongoing health anxiety.

“Every time I would step into the cancer center where I would see my oncologist, I would feel sick in the stomach,” Campbell said.

While Campbell eventually worked through her anxieties with a therapist, many survivors are unable to access mental health support that meets their unique needs.

“It’s hard to find someone who can help treat you post-cancer,” Palay said. “Because it’s not just PTSD [posttraumatic stress disorder], but it’s related to health.”

The CCSA would also require the US Health and Human Services (HHS) to put together a report outlining a potential alternative payment model for survivorship services under both Medicare and Medicaid, along with a plan for testing the model. This model would be more comprehensive than the Medicare service, including strategies for promoting shared decision-making between patients and physicians, as well as for coordinating care between multiple types of providers.

However, these provisions can only go so far when understanding of survivors’ needs remains limited, which is why the CCSA also requires a number of research initiatives. The most significant of these is an HHS analysis of the feasibility and costs of conducting an adult version of the Childhood Cancer Survey Study, a longitudinal study that tracked the long-term effects of childhood cancer.

“We still live in a bit of a data-free zone when it comes to adult cancer survivors,” Evens said.

For example, his pediatric oncology colleagues use Passport of Care, a free online tool that provides tailored recommendations for follow-up care based on a childhood cancer survivor’s history. No equivalent tool exists for adult survivors, Evens said.

The HHS analysis would provide a starting point for research on adult cancer survivors by identifying gaps in existing adult cancer survivorship data, along with potential data sources for the longitudinal study and strategies for making findings available for survivors and physicians.

Still, as optimistic as Evens and other physicians are about the CCSA’s impact on survivorship care, they also see limits to how much CCSA could change on its own. For example, Rewari noted that because survivorship care is split between multiple types of providers, clinicians may feel uncertain about who can use the new Medicare billing code.

Rewari said he also wonders who will cover the cost of infrastructure that may be needed to put the CCSA’s requirements in place. For example, the proposed Medicare service would ask physicians to record patients’ SCPs in written or electronic form, but there’s nothing in the act about how electronic medical record communication between different providers treating the same patient would be facilitated.

“I love the intent,” Rewari said. “I just worry about, operationally, how’s this actually going to happen?”

Many of the CCSA’s provisions focus on determining what needs to change, meaning more would need to happen to actually implement these changes later on.

“This isn’t a one-time fix,” Evens said. “This will need to be a multi-year, if not multi-decade effort.”

Above all, though, the CCSA would provide a starting point for survivorship care in a system that currently puts a lot of the burden on survivors themselves. Campbell believed reintroducing and passing the CCSA would give patients like her a clear path forward after surviving cancer.

“Having this legislation put in place would be a great deal for so many survivors, to give us hope,” she said.

Healthcare practitioners who want to support the CCSA can share information about the unmet needs of their patients who are cancer survivors with advocacy groups, including Cancer Nation and the Lymphoma Research Foundation, so that they can educate policymakers about these needs. They can also contact their representatives to express support for the CCSA and pressure any associations in which they are members to support the draft bill.

“Regardless of what political party somebody’s affiliated with, cancer touches the lives of millions in this country,” Callaway said. “I think it’s an important time for this legislation to go forward.”