How Cancer Patients Should Respond to the COVID-19 Pandemic
by Brad Power
You cannot always predict crises, but you can control how you respond. The world has been turned upside down by the COVID-19 pandemic. A “silver lining” to the death and destruction this global enemy has unleashed includes important lessons for patients and caregivers, particularly for those of us living with cancer. We should recognize and accelerate the positive changes that were already underway. We should religiously follow guidelines for safe and healthy behaviors that strengthen our immune systems and make sure we have a plan, so we are well-prepared for our next unexpected crisis. Then, armed with this knowledge of our best treatments and behaviors, we need to be ready to advocate loudly for what is best for us.
How my cancer treatment has changed and how the change has affected me
Like all cancer patients, I am highly vulnerable to a virus like COVID-19 since my immune system is compromised. I was diagnosed with lymphoma in 2018, went through a four-month course of chemotherapy, and have been on maintenance therapy (infusions of antibody drug rituximab every two months). When I saw my oncologist for a regularly scheduled consultation in March, he stressed my vulnerability and advised that I should sequester at our home in rural Maine. I also learned that since my lymphoma (a cancer of the lymph system, a part of the immune system) and my medication suppresses my immune cells, my immune system might not be able to develop antibodies, even if a vaccine is developed for COVID-19. I will need to depend on herd immunity – an indirect shielding of at-risk populations by the vaccinated or naturally immune populations. Based on the estimates of experts, approximately 70% or higher of the general population needs to have COVID-19 immunity – and that could be 3 to 5 years. I have prepared myself for the possibility of being in self-quarantine for years.
In light of COVID-19, my oncologist and I also decided on a phone call later in March to delay my scheduled infusions for the foreseeable future. The risks of increasing the suppression of my immune system by continuing my maintenance therapy, possible exposure to the virus at the hospital, and the expense were greater than the marginal anti-cancer benefits of continuing my infusions. I am not alone in having a consultation by phone and delaying therapy. Cancer treatment, like all healthcare delivery, has flipped amazingly quickly to remote visits (“telehealth”) and self-delivery of care by patients in the home whenever possible. And treatments that can be delayed are being put off, especially when the benefits are small vs. the risks of being infected with SARS-CoV-2.*
[*Oncology Practice During the COVID-19 Pandemic, Deborah Schrag, Dawn L. Hershman, and Ethan Basch, JAMA Network, April 13, 2020]
Summary of actions to consider:
- Be safe: Keep a safe social distance, wash your hands, wear a mask, reconsider trips to the doctor’s office (call, video chat, delay, administer at home)
- Be healthy: Eat a healthy diet, get plenty of fresh air, exercise regularly, make time for sleeping, reduce stress and maintain a positive attitude
- Be prepared: Get tested, assemble your health data, get a “second opinion”, have your treatment options (“Plan B”) ready
- Fight: Join an online grassroots group focused on your disease, advocate for data access and control
Be Safe and Healthy
Besides being very disciplined about recommended behaviors to protect us from COVID-19 – like social distancing, hand washing, mask wearing, and reconsidering trips to the doctor’s office – cancer patients like me must be extra disciplined in practicing healthy behaviors to fight against both our cancer and COVID-19. For example, when my children have visited, we have kept quarantined from each other for two weeks. And since my immune system is compromised, I have doubled down on learning about and following healthy living guidelines, such as eating a healthy diet, getting fresh air by going on walks outside, getting exercise and enough sleep, managing stress, and having a positive attitude. For example, I have made it a habit to set aside two hours every day for yardwork.
COVID-19 has reminded us that it is human nature not to worry about or spend scarce resources to prepare for things that seem unlikely. In a similar way, cancer patients cannot predict the path of our cancer, yet we must prepare to be ready to respond quickly with our best treatment options if our disease takes a turn for the worse. Most of us do not invest enough in understanding our disease and our treatment options, especially new treatments, and clinical trials outside the standard of care.
The COVID-19 pandemic has taught us that a lack of diagnostic testing starves strategies and decisions of essential feedback on what to do. We need data to understand who is infected, how widespread the virus has become, how lethal COVID-19 is, what treatments are working (and are not), and the ability to model and predict where the virus is heading next (geographically, mutations, symptoms). Cancer patients without enough data about themselves are similarly unable to make personalized treatment decisions, especially what to do after we have gone through the initial shock and denial.
We have learned that COVID-19 infects many people who may show no symptoms; to some extent, the same is true for cancer. We have learned that women need to get regular breast exams, and we need to get colonoscopies to check for colon cancer when we turn 50, even if we do not have any symptoms. Late diagnosis is why pancreatic and ovarian cancer are so insidious. Harvard geneticist George Church said that if we analyzed the genome for everyone, 98% would get a clean bill of health. But 2% would find diseases that we did not know we have, and at a stage that are preventable, which would more than pay for the cost of the testing. More data is better and regular testing for a panel of cancers should be established as our bodies change over time.
Be Ready to Fight
COVID-19 is a global enemy, which demands a global response. Since we are all in this together, our individual and collective behavior impacts others, and others’ behavior impacts us. Or, to put a positive spin on this, a viral pandemic or cancer impacts all of us in similar ways, and the solutions will help all of us. Our global response to healthcare problems depends on sharing open, honest global data on infection rates, recovery rates, and what is working and what is not.
While COVID-19 has driven some unprecedented global collaboration, it has also exposed challenges in information sharing driven by conflicting political motivations. COVID-19 approaches in different countries, regions, and cities, especially those that were infected early, like China, Italy, New York City, and Washington state, are natural experiments that have increased understanding of what is working and what is not. Unfortunately, political leaders sometimes suppress information in the hopes of stopping the spread before others find out – this has never worked, and the parties are always found out (if not punished). Data can be suspect since some fear that politicians are manipulating it or not moving as fast as they could to increase testing because they want to minimize concerns. In addition, data can be compromised due to the natural errors of testing, such as variations in sample processing. Hence, data should be viewed carefully and ideally in the context of multiple data and media sources.
Similarly, cancer patients can learn from “patients like me” and their experiences. But data sharing between institutions in the health ecosystem is limited by competition, data hoarding, and privacy concerns. For example, at a recent medical conference (in January, before we were aware of COVID-19), I heard a dozen health institutions describe their improvements in decision-making for complex cancer patient situations (“molecular tumor boards”). Yet, when I asked, I was told that they share none of their decisions or results across these institutions. As a patient, I want to know what is working and what is not globally for patients like me. We need to break down these barriers between health institutions. In the current system, the health institutions have more power than patients, and their objectives do not always line up perfectly with ours. The whole industry finds this acceptable, but we should refuse to accept it. As cancer patients, we need to fight to get access to our health data and relevant data from other patients.
Draw Your Important Lessons
How we respond to the adversity of the COVID-19 pandemic or our cancer can seem like a Rorschach test – we will each draw our own lessons and respond in unique and personal ways. While it is natural to yearn to get back to normal, the healthcare system will never be the same again, and we will not be the same.
COVID-19 has accelerated the drive to offer healthcare services in your home. Access to telemedicine or telehealth consultations have opened, including allowing access across state lines, and support has increased for at-home monitoring, all accelerated by reimbursement changes. And COVID-19 has changed the regulatory environment in ways that will make it easier for patients to drive their own treatments. We have seen a big push for more access to experimental treatments under various programs including “expanded access” or “compassionate use” and “right to try”.
COVID-19 should reinforce that each of us, especially cancer patients, needs to educate ourselves about our own risk factors and treatment options, change our behaviors to be safe and healthy, take advantage of online and personalized health services, and be prepared to make decisions and fight for what is best for us. By doing what is best for each of us, we can make the best therapies more easily available for others. For example, online grassroots groups can be an important source for useful, specific, and timely information about our disease and treatment options, like Colontown, which helps people with colorectal cancer, and for mobilizing collective action among patients. We can also subscribe to online services, like Cancer Commons, to get advice on our best treatment options. By being more engaged and active, even annoying, we can accelerate progress for everyone.
In 2018, Brad Power was diagnosed with lymphoma and went through a course of chemotherapy. Building on his experience with process reengineering and managing technology, he is focusing on helping people with a cancer diagnosis get information on the best options for their treatment. He seeks to accelerate two big themes: personalization (gathering lots of data about each individual and customizing unique treatments) and self-care (empowering individuals to partner with startups offering services directly to consumers to take an active role in their treatment). He is the founder of Reengineering Cancer Treatment, is a founding member of MyCancerDB, and is collaborating with Cancer Commons.