publication date: Apr. 17, 2020
As treatments get cancelled because of COVID-19, patients worry about adequacy of care
By Alexandria Carolan
This story is part of The Cancer Letter’s ongoing coverage of COVID-19’s impact on oncology. A full list of our coverage, as well as the latest meeting cancellations, is available here.
To prevent the spread of COVID-19, oncologists are either limiting or canceling adjuvant care, in effect staging a population-level experiment.
“How people are treated in the adjuvant setting is supposedly based on high-level clinical trials, results of those trials, results of high-level evidence. That’s what we’re told,” Fran Visco, president of the National Breast Cancer Coalition, said to The Cancer Letter. “And so, people are willing to take the risks of treatment—the economic hit from treatment, all of that—because we’re told this is the best we can do for you right now.
“So, if we’re going to change that, those changes better be based on the same level of evidence, or—why would we trust any recommendation for treatment in the future if we can just change it?”
Patients are left with the gnawing thought that perhaps, as a result, they’re not getting the best treatment.
“Everyone, everywhere has a great deal of anxiety, given the pandemic, but it’s certainly particularly exacerbated in people with a life-threatening disease who are facing the possibility of changes in their treatment protocols and delays in their treatment,” Visco said.
In a survey conducted by NBCC, 19% of respondents indicated that they had experienced challenges accessing care, mostly related to cancellations, postponed follow-ups, blood tests, imaging, treatments, infusions, and surgeries. NBCC is conducting a follow-up survey with results that will be published in the upcoming weeks.
“Losing their medical insurance because they’ve lost their jobs—there are so many issues out there that, on top of the issues all of us have to face now day to day—that people undergoing cancer treatment have to face,” Visco said.
Among 564 respondents to the survey, 94.3% described themselves as breast cancer patients or survivors, and 5% of these individuals said they have metastatic breast cancer. Two percent of respondents listed themselves as caregivers, and 23% described themselves as “other,” which includes advocates, health care professionals and researchers.
“The implication is you’re told this is the best protocol for you, and now that’s changed,” Visco said. “And there isn’t a great deal of evidence—scientific evidence—behind those changes. That certainly adds to the stress that people in treatment are dealing with right now.”
Changing standards of care?
Guidelines from The American Society of Clinical Oncology recommend that practices postpone routine follow-up visits of patients not on active cancer treatment, which can exclude adjuvant care.
For patients receiving adjuvant care that has lapsed as a result of COVID-19, there may be heightened anxiety, said Shelley Fuld Nasso, chief executive officer of the National Coalition for Cancer Survivorship.
“We always hear the survivors talk about that fear of recurrence. And I worry about the heightened fear of recurrence, knowing that they did not have access to something that otherwise they would have,” Nasso said to The Cancer Letter. “I think that’s going to have an effect on a lot of people that end up not having it. But if the data shows that they do just as well, then maybe it will result in changes in standards of care.”
Recently, NCCS held a webinar on the impact of coronavirus on cancer. Adjuvant treatment may be postponed in the COVID-19 setting because it can put patients at risk, Otis Brawley, the Bloomberg Distinguished Professor of Oncology and Epidemiology at Johns Hopkins University, said during the webinar with Nasso. A full transcript of the webinar is posted here.
“Many hospitals are not doing adjuvant chemotherapy for breast, colon, and lung cancer right now—because we have done a weighing of what’s the odds that this chemotherapy is going to prevent the person from relapsing in the future, versus the odds that it’s going to increase their chances of getting coronavirus and having a bad outcome today,” Brawley said during the webinar. “If we lower their white count and they get coronavirus, that is a ticket to not doing well with the disease. So many hospitals are only giving or clinics are only giving chemotherapy to people who truly need chemotherapy right now.”
Cancer patients are at higher risk of complications from COVID-19, and have a high mortality rate, according to data from Istituto Superiore di Sanità, the Italian National Institute of Health. In Italy, cancer patients account for 16.5% of deaths stemming from the novel coronavirus (The Cancer Letter, April 3).
Adjuvant treatment can increase that risk.
In the NBCC study, 9% of respondents (51) reported fear of being immunocompromised and high risk, and 8% (47) reported feeling anxiety or emotional distress because of COVID-19. Four percent of respondents have reported being denied access to COVID-19 testing after reporting symptoms (The Cancer Letter, March 20).
“I am personally very concerned about people who got adjuvant chemotherapy for breast cancer or colon cancer a year or two ago and have finished that,” Brawley said. “We know that their immune systems are still damaged, if not totally recovered, from that adjuvant chemotherapy.”
In some patients, adjuvant chemotherapy is going to reduce risk of relapse by 10%, Brawley said.
“And maybe your risk of getting COVID-19 is high, and the risk of not doing well is high, and so a 10% reduction is not worth it. There are other people where adjuvant therapies is going to reduce their risk of relapse by 40 or 50%,” Brawley said. “There are certain patients who should get the adjuvant chemotherapy right now and we are giving them the adjuvant chemotherapy, but there’s a bunch of patients who can forego it.”
Could this change how cancer patients receive treatment in a post-pandemic setting?
“Pandemic has taken priority over cancer and cancer treatments. It’s the priority now. And so, people are having a hard time accessing the care they were told that they should have,” Visco said.
“Of course, we understand why that’s happening—but we’re concerned about—are the changes really thought through enough? Are they—the people who are making these recommendations—really looking at the evidence we have of what these changes mean for cancer patients?
“And then, equally importantly, we’re very concerned about, are we accumulating data in the right way, that will answer all of these questions, so that the next time we have a more evidence-based approach to how we deal with cancer patients in this type of a situation?”