As cancer treatment innovations continue to progress, health systems across the U.S. have been tasked with preparing for an influx of cancer survivors — a group expected to exceed 22 million in the next decade.

The American Society of Clinical Oncology has established eight care models to help health systems decide how to provide survivorship care. Beyond the physical effects of treatment, survivors also grapple with the significant life-stage interruptions associated with a cancer diagnosis.

Marleen Meyers, MD, is director of the survivorship program at New York City-based NYU Langone’s Perlmutter Cancer Center. The program aims to provide comprehensive, individualized care through nutrition counseling, rehabilitation services, cardio-oncology support, integrative health resources, psycho-oncology support, online meditation classes, cognitive function evaluations, exercise classes and more.

Dr. Meyers spoke to Becker’s about rewriting the cancer survivorship narrative and shared why the industry may need to embrace nontraditional, nonreimbursable providers to improve cancer patients’ quality of life.

Editor’s note: Responses have been lightly edited for clarity and length.

Question: We often talk about survivorship as the “final chapter” in cancer care. Is that framework still serving patients, especially younger ones? Should the healthcare industry adopt a newer framework to better reflect the complexity of life after cancer treatment?

Dr. Marleen Meyers: Things are changing, there definitely needs to be a mindset shift. We used to not think about survivorship care very much because years ago, the focus was purely on getting the treatment done and having people survive. Now, many people live much longer, we’re seeing cancer in younger people and we also have a lot of long-term survivors of stage 4 cancer.

We need to rethink the narrative, because when you look at survivorship as a final chapter, it implies that cancer is linear. You go through diagnosis, treatment, survivorship and then it’s over and you’re back to normal. That’s the most harmful narrative that we have in this country, because it undermines quality care, misguides policy, neglects emotional recovery and leaves patients behind. Survivorship needs to be thought of from the minute of diagnosis. In fact, that’s the way survivorship is actually defined. A person is considered a survivor from the time of diagnosis.

I would like to see the narrative be replaced with one of hope. We are making enormous strides and there’s every reason to be optimistic. Cancer is an increasingly chronic, life-altering condition. Many patients never go back to their pre-cancer life, but they can build an important life going forward that is as beautiful.

Q: What blind spots still exist in how health systems address the intersecting goals of survivorship and adulthood?

MM: Unfortunately, there are a lot of blind spots that come into this. When we think of cancer care, we focus on the medical or clinical aspects. When you think about survivorship care, particularly in younger adults, patients are navigating their education, their careers. They’re trying to build a family, they’re trying to have financial independence. They’re forming their identities at the same time as their diagnosis. Many cancer survivorship programs don’t take that into account at all.

A woman who’s diagnosed with breast cancer at age 30, who perhaps is starting her career and thinking about children versus someone diagnosed at 50 when she is very ensconced in her career and completed her child-bearing years, the difference in what they need for survivorship is very different.

We tend to overlook this and think about survivorship in terms of the next scan or recurrence, while we need to start thinking about things like debt management, relationships, fertility, insurance.

Another big blind spot is the mental health issues that can come up. It’s often an afterthought, disconnected from the oncology team. Mental health professionals can help cancer survivors with anxiety, depression and fear of recurrence.

Q: From your perspective, what infrastructure or reimbursement innovations would enable survivorship programs to better serve patients?

MM: If I could blink and get my wishes, like a genie in a bottle, there are a couple of things that are most important. One of them is having integrated services. Survivorship is a very fragmented picture currently, and even in the best programs, a person will see their oncologist and be referred to fertility, which is a couple of blocks away, and then they may get another referral to cardio-oncology. So while the services exist, they tend to be very fragmented. Having a hub to manage all these services would be very helpful, and that hub would not only include the physical aspects — the cardiology, fertility, all things like that — but also psychosocial, financial and legal support.

Another really important thing we need to expand are CPT codes to cover all of the things that are required for survivorship care. Currently you can bill for doctor services and consults, but if a nurse practitioner or a physician’s assistant is taking time to fill out a survivorship care plan and talk about that to the patient, there is no CPT code for that. You can’t bill for mental health screenings, even when it’s in context with the visit. It’s also very difficult to get insurance companies to pay for integrative health services.

I can’t tell you the best way to expand these CPT codes economically, but something is going to have to change.

Q: What do you wish more healthcare systems understood about what it means to “survive” cancer in the U.S.?

MM: What most healthcare providers and systems don’t realize is that survivorship is a mandate, there are certain criteria that need to be fulfilled in order for a center to be accredited by the American College of Surgeons. And part of that is a mandate for survivorship. And what’s so interesting is that it’s something that you have to do, yet it’s woefully unfunded.

Survivorship isn’t sexy. It’s not like doing a big operation, holding someone’s heart in your hand. It is a very nitty-gritty, get-down-and-dirty infrastructure that includes not only important healthcare issues, but also potentially nontraditional providers. When we look to see what improves quality of life, it can involve things like nutritionists, trainers, sexual therapists and acupuncturists. All of these people are not reimbursable and therefore they’re out of reach of many people. That needs to be really thought of a lot more than we’re thinking about it.

Additionally, we know that a lot of cancer is preventable. If everyone had a great diet, exercised and didn’t drink, we would see a lot less cancer, yet most people don’t have access to that lifestyle. We need to address both short-term and long-term care for our cancer patients while decreasing the risk of cancer for many people.

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