Precision medicine is the ability to use genomic information to optimize diagnosis and treatment and provide better outcomes for patients. We Know Precision Medicine is a series of blog posts and articles about the people of PierianDx and how we know precision medicine through our expertise and personal experiences. In this blog post, a PierianDx employee shares what it’s like to live with cancer in the time of COVID-19.
Just a few days into the start of a new year, doctors diagnosed me with stage 4 cancer. After the initial shock of a cancer diagnosis wears off, the focus that comes with preparing for surgery and treatment provides hope. Taking action against this cancer feels good. That is, after all, why I work at PierianDx— to aid in the battle against cancer and other genetic diseases.
When some brand of Kubler-Ross acceptance sets in, people spring into action. HR departments work out part-time working arrangements, co-workers and friends arrange for meal-trains, parents and spouses make arrangements to provide extra support. It’s clear that a lot of people don’t know what to say, but receiving gifts of prayer, funny memes, and meals lifts my spirits.
By February, the treatment itself begins to take a toll on my body and mind. Surgery and six months of chemo, which for me, manifests as flu-like symptoms, fever, fatigue, nausea, poor appetite, and low blood counts. How can I find the strength to get through the next few months?
Cancer is challenging enough. But let me be perfectly clear: doing all of this in the midst of the Coronavirus pandemic is a challenge I didn’t see coming.
My mom has been my companion throughout all of this, but since her age puts her at risk, and I’m going to the hospital regularly— the worst place to be right now— I cannot risk her health to be in her company.
The Coronavirus pandemic is already affecting access to care for cancer patients. Some have lost their jobs, and along with their income, their employer-provided group health insurance. One chemotherapy treatment, without having insurance, for me would be $2,600, and imaging tests can be over $10,000.
Patients enrolled in clinical trials are affected too. Many clinical trials, especially those in phase 1, are operated out of just a few centers in the world, leading many patients to travel out-of-state for treatment. While one fellow patient was able to transition to having her local doctor follow her care so she could remain on the investigational drug, others have had to suspend their participation because they cannot make it to the distant treatment center.
Thankfully, regulatory bodies, national cancer organizations, clinical trial funding sponsors, and oncologists are contributing ways to introduce flexibility into typically strict protocols to allow care for critically-ill patients to come first. Yet, some companies are opting to delay the start of any new clinical trials, over fear that their trial will fail due to COVID-related complications rather than a complication of the investigational drug. In a recent article from Precision Oncology, oncologists from clinical trial centers contribute their thoughts. Nam Bui, Clinical Assistant Professor of Medicine in Oncology at the Stanford Cancer Institute, remarks, "Technically, we still can enroll, but unless we think there's good safety data to justify it — especially for early-phase trials — I would be more apprehensive." Howard "Skip" Burris, president of the American Society of Clinical Oncology (ASCO) and Chief Medical Officer and President of Clinical Operations at the Sarah Cannon Research Institute in Nashville, noted that “trials comparing similar, already-approved drugs are more likely to be delayed, since the clinical benefit of continuing is more difficult to predict.”
My care is currently managed locally, but I used to feel comfort knowing that I had a back-up plan for treatment--an out of state clinical trial--if this one fails. Now, I wonder if the trial will be able to continue, and whether I would be able to get this personalized medicine I hope for. Will that state have social distancing guidance to protect me? Alternatively, will that state have social distancing policies that block me? Will they mandate a 14-day quarantine on travelers from out of state? MD Anderson Cancer Center, for example, is requiring all new out-of-state patients to self-quarantine for 14 days prior to all appointments. Or, if most of the world has returned to normal, will I, as an immunosuppressed individual still more susceptible to COVID-19, feel comfortable staying overnight in a high-occupancy hotel?
I spend tremendous effort strategizing strict new measures to keep me safe. I had already been good about washing my hands for an entire twenty seconds, but now I focus on the specific method of hand washing recommended by the WHO. I don’t go anywhere except the hospital. And while there, I wear a mask and nitrile gloves. Thankfully, my touchscreen phone works with my gloves on, or I would be pretty bored during my treatments. I’m perhaps most saddened that these rules extend to my husband: when we get mail or groceries delivered, he removes the packaging and cleans up before I touch anything. The bigger impact is on his work-life balance. He is in a line of work deemed essential, and he truly enjoys going into work and interacting with his co-workers, but he has chosen to work exclusively from home in order to keep me safe. I’m grateful for this act of selfless love!
I feel reassured by the measures the cancer center is taking to prevent spread. Upon arrival, I am asked why I’m there and my temperature is measured. I answer questions about travel and COVID symptoms, twice. Am I short of breath? Well, mildly, but, thankfully, it comes and goes with activity, so I am certain it’s from the chemo. The outpatient hospital center is a ghost-town, until you reach the cancer care clinic. Visitors are not allowed anymore. It seems like the only people here are staff and cancer patients.
I’m grateful for the CDC, state, and local guidance of social distancing, but not everyone is taking it seriously. For some, perhaps it’s a lack of understanding that distance is far more effective than a surgical mask. Yet others spend Spring Break on the beach in Florida, showing utter disrespect for the guidelines, then return home carrying germs to numerous places throughout the US.
So now I find myself waiving a figurative flag outside my residence, not because I have Coronavirus, but because I’m hoping that outsiders recognize that I, like many others living with cancer and complex disease, need support in the form of distance.
A fellow cancer patient and journalist, Bill McClellan, wrote a shrewd analogy that I would like to borrow: society as an antelope herd. As cancer patients, Bill and I would be at the back of the herd, relying on the alertness and discipline of the healthy antelope in the heart of the pack to keep us safe. I didn’t ask to be at the back of the herd, but yet here I find myself, along with the 18 million other people who are living with cancer worldwide. Intentional considerate behavior protects the entire herd, but flippancy and negligence put our lives at risk. On the best of days, cancer is challenging. In the time of the Coronavirus, it’s terrifying because my safety doesn’t just depend on just my habits or the skill of my chosen doctors. It depends on each and every American, and the rest of the world, to do its part to flatten the curve and prevent our healthcare system from collapsing. Please step up to protect those of us in the back of the herd.
For more guidance on COVID-19 for cancer patients, oncologists, and clinical trial centers, refer to https://www.cancer.gov/contact/emergency-preparedness/coronavirus.