By Peggy Eastman
In addition to its devastating effects on those diagnosed with COVID-19 and their families, the pandemic is having a destructive spillover effect on cancer patients and survivors. A new survey of more than 1,200 cancer patients and survivors released by the American Cancer Society Cancer Action Network (ACS CAN) documents this toll. Not only is their care being impacted directly, but many of those surveyed reported financial hardships in paying for care as a result of the coronavirus.
Half (51%) of those responding to the survey in a national cohort of cancer patients and survivors, called Survivor Views, reported some impact on their care as a result of COVID-19. Nearly one in four reported a delay in care or treatment; among these, the most common delays were for in-person health care provider appointments (50%); delayed access to imaging services to determine if their cancer had grown or returned (20%); access to supportive services, including physical therapy or mental health care (20%); and access to surgery (8%).
Among those patients currently in active treatment, more than a quarter (27%) reported a delay in their care, and 13 percent said they don't know when their care will be rescheduled. Some 15 percent of survey respondents reported that they had had an in-person health care provider visit changed to a telephone or video consultation. One-third of all patients said they have worries about the impact COVID-19 will have on their ability to obtain care, a concern that is heightened by those in active treatment, 40 percent of whom said they have these worries.
One in three respondents (34%) agreed or strongly agreed with the statement "I am worried that the COVID-19 outbreak and the response to it will make it hard for me to get treatment for my cancer." The percentage was higher for those currently in active treatment: 40 percent.
"Cancer patients are dealing with understandable, but in many cases, unsustainable delays in their care," said ACS CAN President Lisa Lacasse. "This data shows the need for quick action in bolstering our health care system so we can both care for those diagnosed with the virus and for those facing a cancer diagnosis."
In a recent online presscast on COVID-19 and cancer care, American Society of Clinical Oncology (ASCO) President Howard A. "Skip" Burris, MD, FACP, FASCO, confirmed that the pandemic has caused delays in cancer care and delays in cancer screening, and will create backlogs in surgery and damaging effects on cancer clinical trials such as interruptions which deny some patients access to their best treatment option. Burris, who is Chief Medical Officer and Executive Director of the Sarah Cannon Research Institute, noted that the inability of oncologists to see patients in person due to social distancing is "a huge disadvantage" and the rapid shift to telehealth takes a psychological toll on patients. ASCO is on record as stating that "in many communities, cancer screenings and some surgeries have been postponed until the pandemic subsides—a situation that could have long-term negative consequences."
On April 16, 2020, more than 50 cancer groups including ACS CAN called on Congress and the federal government to take action to help cancer patients gain, maintain, and afford health coverage during the ongoing COVID-19 pandemic. The groups sent letters to Congressional leadership in the Senate and House and to U.S. Department of Health and Human Services Secretary Alex Azar containing measures each could take to alleviate the challenges cancer patients now face.
The letter to Congressional leaders states in part: "In addition to the real risks associated with COVID for all people, those impacted by cancer may be at heightened risk due to their compromised immune systems as well as the potential delays in treatment and care. Many of these patients rely on a strong safety net in the best of times to ensure access to affordable and comprehensive cancer care. The need to reinforce and even build upon that safety net has never been more urgent." The letter adds, "The COVID pandemic has highlighted the need for adequate, affordable, and accessible heath insurance overage for all people including cancer patients in the U.S."
The letter to Secretary Azar states in part: "Our organizations continue to hear from cancer patients, survivors, and caregivers daily that they are encountering difficulties in accessing treatment—in some cases because their provider or facility has temporarily closed, had to prioritize COVID-19 treatments, had to conserve personal protective equipment, or because their treatment was not determined to be essential."
Measures advocated by the cancer groups include the following:
- ensuring cancer patients have access to a 90-day supply of medications;
- requiring insurance plans to cover oral chemotherapy the same as intravenous treatments (parity);
- creating a special enrollment period so that uninsured or underinsured Americans can enroll in comprehensive health plans established under the Affordable Care Act (ACA);
- increased funding for state Medicaid programs;
- subsidies to help people who lose their employer-sponsored health care to afford their health insurance premiums for up to 6 months;
- promoting the use of telehealth; and
- not punishing cancer patients for seeking out-of-network care, in the event that their regular health care providers are closed or unavailable due to the pandemic.
The letter to Congressional leaders notes that 43 states and the District of Columbia have passed "oral parity" legislation to prohibit insurance benefit designs that require patients to pay considerably more for intravenous chemotherapy, and the letter urges passage of the Cancer Drug Parity Act.
Prior ACS surveys have shown that even before the coronavirus pandemic many American cancer patients reported difficulties in paying for their cancer care, in some cases leading to bankruptcy. Currently, in addition to worries about delays in care or access to care, the economic stress and financial challenges facing cancer patients and survivors as a result of the pandemic are considerable; nearly half of respondents (49%) receive health insurance coverage through their employer, and employers facing heavy losses have been laying off employees in droves. Some 32 percent of respondents are covered by Medicare.
On the ACS CAN survey, nearly four in 10 (38%) of respondents said COVID-19 is having an adverse effect on their ability to afford their cancer care, due mostly to reductions in work hours (14%). Among those who reported that they or a family member had had their work hours reduced, 58 percent had employer-sponsored health insurance. Reduced work hours and job losses are of special concerns to cancer patients because of the specter of losing employer-provided health insurance. Among respondents who said they or a family member living with them had lost a job, 43 percent had employer-sponsored insurance coverage.
In addition to reduced work hours, 11 percent of survey respondents reported reduced investment values, while 9 percent said they had difficulty affording food and supplies while staying at home to avoid contracting the virus. All respondents reported economic stress as a result of the pandemic, but it is especially prevalent among patients with lower incomes and middle-class incomes. Nearly half of those earning $30,000 or less per year said they are worried about affording their cancer care (46%); more than a third (34%) of those earning up to $60,000 are worried and even a quarter (25%) of those earning up to $110,000 per year are concerned about how to pay for their cancer care.
"Cancer patients and survivors are facing threats on multiple fronts right now, including the struggle to get and afford health care," said Lacasse. "Now is the time for our lawmakers to do all they can to address and help alleviate these challenges."
The ACS CAN survey was conducted using a Web-based instrument and taken by more than 1,200 cancer patients and survivors between March 25 and April 8, 2020. It has a margin of error +/-3 percent and 96 percent confidence level.
ACS is now inviting participants in its ongoing Cancer Prevention Study 3 (CPS-3), which includes more than 300,000 participants from 35 states and Puerto Rico, to use a new app which will help investigators track the COVID-19 pandemic and serve as a resource for future research projects. Participants download the app and each day track whether they are feeling any symptoms.
The app, the COVID Symptom Tracker, was created by physicians and scientists at the Harvard University T.H. Chan School of Public Health, Massachusetts General Hospital, King's College London, and Stanford University School of Medicine, working in partnership with the health science company ZOE. The goal of the app, which is available to anyone in the United States and the United Kingdom, is to better understand the symptoms of COVID-19; understand how fast the virus is spreading in different areas; identify high-risk areas in the country; identify who is most at risk by better understanding symptoms linked to health conditions; and identify the exposure of healthcare workers to COVID-19.
Researchers hope the app will help to address the immediate and long-term needs of cancer patients and survivors; characterize the progression of symptoms and trajectories related to the coronavirus; and, when data from its use are combined with CPS-3 data, aid the study of longer-term health effects related to infection, including infection in vulnerable populations such as cancer survivors.
Peggy Eastman is a contributing writer.