As the U.S. grapples with a potentially deadly pandemic, it can learn a lot from people like me who are living with serious illness.
Before you throw tomatoes, hear me out. People who live every day with chronic, advanced, and complex illnesses can help shape public attitudes toward following guidelines to reduce the spread of Covid-19.
I say that because I believe that people coping with serious illness — advanced cancer, transplant recipients, heart failure, autoimmune conditions, and more — have a unique perspective to help the public respond to recommendations to decrease transmission of the novel coronavirus and maximize our commitment to each other during an uncertain time.
When the fear of illness is raised, in addition to the voices of government, public health, and medical professionals, Americans need the voices of those who are successfully navigating the illness experience.
Why? We’ve been there. And we can speak with wisdom.
People living with serious illness offer four dimensions to help the public accept strategies to flatten the curve. These include advocating for the community, using precautions responsibly, following evidence-based interventions, and embracing a virtual culture.
I was diagnosed with glioblastoma, an aggressive type of brain cancer, four years ago. I live each day acknowledging illness and mortality, and I have tallied several years of patient advocacy experience. My perspective, and that of others like me, may help calm the millions of Americans who are naive to illness and existential distress but who are facing them with the onslaught of Covid-19.
Many people who advocate for medical research funding understand that the dollars we call on to extend and enhance the lives of people affected by disease will likely never personally benefit from them. Calls to increase funding can take years of persistent effort. And even when budgets are increased, budgeting cycles may delay appropriations for a year or more. On the research side, treatments with promising preclinical data can take years to evolve into effective and marketable new therapies. Yet I have never heard fellow patient volunteers refuse to advocate because they may not personally reap the rewards of their work.
Although Covid-19 may not threaten you individually, the threat to the health care system is huge. When our systems are pressed, our communities suffer. Regardless of your individual risk of being infected with the novel coronavirus, social interdependence requires that all of us follow recommendations from trusted government, public health, and medical bodies.
Discern appropriate precautions
Members of rare disease communities become experts through experience. Many of us are immunocompromised. We experience physical impairments, cognitive decline, and more. We face the financial toxicity of health care costs and lost productivity. We must navigate a world designed with able bodies in mind.
Whether it’s a wheelchair at the airport, a handicapped parking placard, a face mask, or a disability check from Social Security, people with serious illnesses recognize that an allocation to one member of this loosely connected community could limit resources for another.
Of course, we wish that resources were not a zero-sum game. But until the system catches up with diagnostics and precautions to mitigate the spread of Covid-19, those living with serious illness can rightly speak to responsible allocation. (See “Acknowledge interdependence” above).
Follow evidence-based guidelines
On my blog about living with brain cancer, I’ve been sent messages about the benefits of acupuncture, a no-sugar diet, going vegan, doing a juice cleanse, and even a natural “eye drop” to cure my brain cancer. When I get together with people living with serious illness, we swap stories about the “all natural” remedies our families, friends, and even strangers can’t help but suggest.
Covid-19 has spawned, or at least recirculated, similar dubious preventive measures or remedies.
Clinicians and public health experts often make fun of patients for using “Dr. Google.” I think that’s wrong. A better response would be to thank and encourage people for taking an active role in their care. Medical professionals should share trusted sources of information, not disparage patients for their curiosity. Initiatives to partner with patients to develop avenues for research show the power of “everyone included” models, including Stanford University’s Medicine X, the many Count Me In projects led by the Broad Institute, the American Association for Cancer Research Scientist<->Survivor Program, and grants awarded by the Patient-Centered Outcomes Research Institute.
Patient advocates have developed strong partnerships with the clinical and research communities. When the stakes for accessing reliable information are high, those with serious illnesses are particularly invested in disseminating trusted information. This doesn’t mean we are immune to misinformation, but given our high risk for Covid-19 vulnerability, we recognize an added layer of diligence to follow our clinical partners in sharing trusted information. Grace Cordovano, an oncology patient advocate, displays the strength of partnership with patients and clinicians in this LinkedIn post, calling for resources. She writes, “I’m looking for credible references and information on advance care planning with respect to coronavirus.” She goes on to tag both patients and physicians.
Embrace a virtual culture
Savvy Cooperative, a patient-owned public benefit co-op, is a trailblazer in the patient advocacy space. As soon as large conferences began to cancel in light of Covid-19, Savvy organized virtual meetups and office hours to shift its conference presence to digital. Savvy Co-op is well suited to lead in the era of digital conferencing because its imprint in the medical conference space continues to grow in influence, especially after founder Jen Horonjeff wore a hospital gown on stage at the 2020 JP Morgan Healthcare Conference! Savvy has “broken through” the patient realm to hold sway in a larger health care conversation that includes patients, clinicians, and investors.
Disease-specific Twitter communities, virtual support groups, and the rise of telehealth are great examples of embracing a virtual culture. Imagine being isolated in a hospital bed with limited visitation hours, cut off from the world beyond your room. I faced that scenario for a month following brain surgery and inpatient rehabilitation after my diagnosis in 2016.
Fortunately, I discovered an online community rallied around the hashtag #BTSM (Brain Tumor Social Media). Suddenly I could tweet, text, and FaceTime with friends throughout the country. In fact, my social network grew, despite the physical isolation.
My friend Michael Fratkin, a palliative care physician, has long been a pioneer in telehealth, caring for remote and rural communities in Northern California and the Pacific Northwest. I’ve enjoyed Zoom-mediated conversations with Michael that rivaled the personal connection of in-person meetings with my oncologist and care team.
For all those working from home, or confined to it, enable your video, close your email, and embrace the opportunity to connect in new ways.
People with chronic and advanced illness face accessibility and financial obstacles to attending conferences or even meeting like-minded individuals, but rather than fold, online patient communities are driving large conferences to beef up their social media presences. We are skilled at maximizing value in online spaces. People with serious illness can help unlock the power of virtual resources.
Covid-19 threatens to fundamentally change daily life in America, and individuals with serious illness, often relegated to the margins, can step in to help others accept these changes with personal responsibility. As I often say, serious illness is a privilege. Those of us living with it are now privileged to lead.
Adam Hayden blogs about living with brain cancer on Glioblastology and co-facilitates a monthly virtual support conversation for people living with brain tumors and their loved ones, hosted by National Brain Tumor Society.