Clinical trials have always represented hope for people with cancer. Whether someone is newly diagnosed or has exhausted most treatment options, trials can provide a crucial, alternate treatment. Covid-19 has upended that lifeline, along with almost every other aspect of cancer care.
Many are turning to people like us who work one-on-one with patients. We manage two departments at The Leukemia & Lymphoma Society: a team of nurses who find and overcome barriers to clinical trials for people with blood cancers, and a team of social workers who help them navigate their treatment, along with financial and social challenges.
In mid-March, one of our nurse navigators received the news that proved to be a harbinger of how dramatically our jobs were about to change. When she called a patient to follow up about a clinical trial he was pursuing, she learned he had died of Covid-19. He deteriorated quickly after contracting the virus, the patient’s family said.
Our social workers and nurse navigators are accustomed to dealing with tragedy daily — that’s the nature of being in the cancer business. Before Covid-19 came along, about 1 in 10 patients we work with would die while we were in the process of connecting them with a trial. Today, more than half of the nurses on our staff have lost patients they were working with to Covid-19.
Cancer patients and survivors are suddenly living in a world where not one but two deadly diseases pose an ever-present threat, just as the health care system they rely on has been disrupted.
Before the emergence of Covid-19, 1,600 clinical trials for blood cancers were underway in the U.S. A survey earlier this year found that 60% of U.S. institutions that host cancer trials were enrolling new patients at a lower rate than they were before the pandemic emerged. In some cases, it simply wasn’t safe for patients to participate. In others, nurses and doctors working on trials were reassigned elsewhere in their strained hospitals. In both cases, it became much more difficult to connect patients to trials.
With hundreds of trials on hold, many patients suddenly lost access to treatments that might have held promise, setting off a scramble on our part to connect patients with other, sometimes suboptimal, treatments. Meanwhile, with the infection risk posed by air travel, many patients have gone from saying they’d go anywhere for a trial to saying they’d travel only within driving distance. Those living in rural areas face limited options.
We keep hearing from patients, “I can’t believe it — this was the worst possible time for me to relapse.”
The inundation of phone calls our staffs receive provide an illuminating — and sometimes heartbreaking — vantage into the way cancer patients’ lives have changed over the last few months.
Many cancer patients and survivors are trying to understand just how vulnerable they are to Covid-19. For those in cancer recovery, the situation has provided an unwelcome reminder that although they’ve conquered cancer, they’re still affected by that diagnosis, which may leave them with increased vulnerability to the most serious effects of Covid-19, including death. They’re having flashbacks to their sicker days, when they felt defined by their identity as patients. “With Covid-19,” one survivor told us, “everyone is extremely worried about me all over again.”
That plays out in many ways. Caregivers tell us they’re overcome with the fear that they’ll inadvertently bring Covid-19 into their home and infect their cancer-stricken child or spouse. It’s a cruel irony for them that, in many cases, the very job that allows them to pay for their family member’s health insurance and cancer care may also put their family at risk.
As the pandemic took hold in the U.S., we initially helped cancer caregivers who are essential workers figure out how to have conversations with their employers about ways they can help minimize their risk. Now those conversations are happening with nonessential workers, too, as businesses reopen.
We’ve learned through our conversations with patients and survivors that their support networks are eroding. Social workers, therapists, and financial counselors who work at treatment centers are harder to reach due to the increased demands of the pandemic. Even cancer support groups have been scaled back or eliminated. Nobody wants to linger in any health care setting these days. The priority is to get in, get out, and minimize potential exposure to the virus.
Patients and doctors are working together to chart the best course. Some patients’ treatment regimens have been changed to limit in-person visits. Appointments often occur via telemedicine. When patients do come in for infusions, which can last hours, many facilities won’t allow them to be accompanied by a family member. Patients typically understand these decisions, but that doesn’t make the isolation any easier.
For patients who don’t have family members nearby, social distancing is a serious obstacle. An elderly lymphoma patient called us, distraught, telling us she was nearly out of food but didn’t feel safe going to the grocery store and couldn’t get food delivered. She had neither family nor friends nearby who could drop off food at her home. We worked with a food bank to make a delivery and then made arrangements for future grocery drop-offs.
And then there’s what happens when Covid-19 turns deadly. We know that some of our patients with Covid-19 died alone, their family members forbidden from being with them due to concerns about the spread of the virus.
These experiences are tragic for our patients and their caregivers. They are also gut wrenching for our staff.
Our social workers and nurses got into this line of work to alleviate suffering. They know that heartache is part of the job. But Covid-19 has somehow managed to amplify the level of misery that surrounds cancer. Even for professionals, this is taking a toll.
As Covid-19 calls mounted this spring, we realized our staff needed time to debrief. We now spend more time at staff meetings speaking candidly about the grief we feel for our patients. And even as we continue to serve our patients, we’re terrified of what’s happening in our own community. The Leukemia & Lymphoma Society is headquartered in Rye Brook, N.Y., just a few miles from New Rochelle, the country’s first Covid-19 containment zone.
Some of us wrestled with whether to return to nursing roles in hospitals to care for patients. But we ultimately didn’t, because we know that when patients call, they need answers. For people like the elderly woman with lymphoma who had no food, we’re the only place they can turn to. Even though we’re not working in emergency rooms, we’re on the front lines of Covid-19. And now it’s our job to help patients navigate a world in which having cancer has somehow become even worse.
If there’s any good news, it’s that patients are now empowered with the knowledge they need to better navigate their cancer in the face of the Covid-19 threat. They’re learning what questions to ask their doctors and steps they can take to reduce their risks of contracting Covid-19. And the clinical trials that were on hold are now restarting.
But we remain on guard, knowing that the situation is ever-changing, and someone needs to answer the phone when cancer patients call to ask, “What should I do next?”
Alissa Gentile is a registered nurse and director of the Clinical Trial Support Center at The Leukemia & Lymphoma Society. Meredith Barnhart licensed social worker and director of the Information Resource Center at The Leukemia & Lymphoma Society.