Take it from this cancer survivor: We need to start focusing on Covid-19 survivorship now.
I’ll never forget the first time I realized that a cancer diagnosis — regardless of treatment outcomes — was a lifelong companion. I was early in my chemotherapy regimen, having been diagnosed with breast cancer only weeks before at the age of 28. I mentioned to a fellow patient that I was eager for this first part, the hardest part, to be over. She turned to me and said, firmly but compassionately, “I have to be honest with you: It’s never really over.”
She was right.
A cancer diagnosis introduces you to a new normal, one in which side-effect management becomes a permanent fixture and sometimes even the slightest ache or pain can send you spiraling. With more and more people reporting symptoms of long Covid, it is clear that many who survive this virus will find themselves in a similar position: facing long-term physical and mental challenges they could have never anticipated.
Fortunately, there’s a model for survivorship management that comes from the cancer world. As mortality rates from cancer continue to decline — even in the midst of rising diagnoses — more and more attention is being put on helping people live full lives with cancer and afterward.
Here are a few approaches that have proven successful. The U.S. needs to begin investing in and scaling similar programs for Covid-19 survivors now, before it’s too late.
An integrated approach to care
The impacts of a life-threatening illness are many and varied, and aren’t restricted to the disease site. A breast cancer survivor, for example, can live with side effects that reach far beyond the breast, such as joint pain or osteoporosis, early menopause, and heart disease. That’s not counting the immense and measurable impacts on mental health: cancer survivors are far more likely to live with anxiety and depression than their disease-free peers.
A similar phenomenon is beginning to emerge among Covid-19 survivors. Long-term symptoms extend beyond obvious targets like lung function to areas such as ocular and dental health. And up to 1 in 5 Covid-19 survivors are diagnosed with a psychiatric disorder within 90 days.
That is why an integrated approach to survivorship management is so critical.
In recent years, cancer survivorship clinics that pursue a holistic approach to long-term wellness have popped up across the country. Patients of survivorship clinics work not only with oncologists and nurse practitioners but also with specialists in nutrition, psychiatry, sexual health, integrative medicine, neurocognitive assessment, and more.
As a survivor, I’ve found this type of integrated support to be essential, because many of the greatest challenges I face fall far outside the purview of my oncologist. On a day-to-day basis, my concerns related to mental health, diet, and even dentistry (I have had 13 cavities filled so far as a result of chemotherapy damage) are the ones that have defined my post-cancer-treatment life.
A number of care centers have started thinking along these lines in the pandemic, opening centers for post-Covid care that can serve as a resource for patients living with ongoing symptoms and side effects. Expanding these efforts — and ensuring they are accessible and affordable — will be essential to ensuring that survivors are given the support they need in the years to come.
Targeted guidelines and care plans
Because the long-term effects of cancer and Covid-19 are so varied, patients can be left navigating a complex web of providers and follow-up visits.
A central set of guidelines can both equip survivors with the tools they need to oversee their care and ensure that providers are aligned on the best practices for treatment. One example is “Survivorship Care for Cancer-Related Late and Long Term-Effects,” produced by the National Comprehensive Cancer Network as part of its “Guidelines for Patients” series. The document, co-authored by a number of providers, contains easy-to-understand advice on topics ranging from cardiovascular disease to sexual dysfunction to distress and mental health.
While a set of guidelines lays out a general approach to survivorship care, more tailored direction can come in the form of survivorship care plans. These plans, such as ones produced by the American Society of Clinical Oncologists, compile information about an individual’s medical history, as well as any follow-up care that might be required in the future. Care plans have become a popular topic in my online community of breast cancer survivors, with more and more women finding value in keeping one handy. “Having a survivorship care plan helps you to forecast and participate in your care,” explained my friend-from-the-internet and fellow survivor Trish Gauthier, who was diagnosed with breast cancer at 37.
Documents like these, tailored for Covid-19, will be an important resource for survivors and providers alike, keeping both up to date about potential long-term impacts of the virus and the protocol for care moving forward.
Support groups and community-generated data
Support groups and patient-led communities have long played an essential role in the cancer survivorship experience. Whether hosted at a health care center or in the feeds of social media — I, for one, found solace in the vibrant community of young breast cancer survivors on Instagram — people turn to their peers for the kind of support and advice that cannot be found anywhere else. Cancer support groups can lead to decreased pain, depression, and anxiety, as well as serve as a critical resource for advice and knowledge-sharing.
Multiple Covid-19 support communities have surfaced since the start of the pandemic, including the popular Survivor Corps and Body Politic. As the number of survivors continues to rise, these essential communities will need to find the funding necessary to scale and perform their essential role in the arc of the care.
“These have been such extraordinarily lonely, frightening times, and we were able to create a virtual community of 150,000 strangers,” explained Diana Berrent, founder of Survivor Corps. “There have been beautiful friendships made. It is the most encouraging, hopeful corner of the internet.”
Berrent and her team at Survivor Corps are not only providing the space for survivors to come together but are also mobilizing them to support scientific progress by taking actions like donating plasma and participating in research. Natalie J. Lambert, Survivor Corp’s director of research, is an expert in using computational analytics to capture insights from public support groups, a skill she first honed in the world of breast cancer. “If you want to know the information that people really need, the problems they’re facing that aren’t being addressed,” she explained, “you go to these online communities. We need to be learning from them.”
The path forward
Survivorship is a complicated beast, and the physical and mental well-being of those living with the aftereffects of Covid-19 will rely on a thoughtful strategy for long-term care. There are, of course, no perfect answers — a lesson learned from the cancer world. But investing in high-impact tools and resources that give survivors agency over their care will make a world of difference. Health care systems and policymakers need to start focusing on this now or there will be a secondary crisis down the line.
Cancer and Covid-19 may be distinctly different maladies, but there are fundamental similarities in the lived experiences of their survivors. The more the two communities can learn from and support one another, the better.
I know I speak on behalf of many cancer survivors when I say to Covid-19 survivors: We see you, we’ve been there, and we want to help.
Hil Moss is an MBA/MPH candidate at Yale University, a breast cancer survivor and advocate, and a consultant to companies on patient-centered innovation.
