Patient Advocacy During the COVID-19 Crisis

Web Exclusives - AVBCC COVID-19 Webcast Series

In the Association for Value-Based Cancer Care webcast, titled Patient Advocacy: COVID-19 Impact on Cancer Care and Road to Recovery, Elizabeth Franklin, PhD, MSW, Executive Director, Cancer Policy Institute, and Co-Chair, Policy and Advocacy Committee, Academy of Oncology Nurse & Patient Navigators, moderated a panel of specialists in the healthcare provider and charity sectors.

Dr Franklin opened the session with an overview of the impact the coronavirus has had on patients with cancer. She said that the pandemic is difficult for “virtually everyone, but cancer patients in particular have many added stressors that could lead to even more of a psychic burden.”

“They’re worried about getting the virus, they are anxious or isolated, they are concerned about delays in their cancer care. And they are fearful that they won’t be able to access necessities of daily living,” she said, underscoring the ways in which patients with cancer are bearing additional psychological strain.

The first panelist to speak was Lillie Shockney, RN, BS, MAS, HON-ONN-CG, University Distinguished Service Professor of Breast Cancer, and Professor of Surgery, Johns Hopkins University School of Medicine. Ms Shockney said that one of the biggest challenges healthcare workers have faced in their visits with patients is alleviating patients’ fears about their cancer spreading rapidly while they are waiting to have treatments or surgeries that have been delayed because of the virus.

Ms Shockney discussed the large number of patients now dying in hospitals, who, in their last hours, are cut off from their loved ones, “They are dying in the presence of strangers,” she said. This is an area of intense stress for patients and their families and caregivers, as well as healthcare providers, said Ms Shockney.

Panelists Dan Klein, President and CEO, Patient Access Network Foundation, and Patricia Goldsmith, CEO, CancerCare, represent charities that provide financial assistance and other forms of support for patients with cancer. Both speakers stressed that one of the greatest effects of the crisis has been to create food insecurity among their clients. They noted that prior to the pandemic, patient grants typically were used to offset physician copayments or the costs of medicine but are now being used to pay for groceries.

“Our goal over the next weeks and months is to try to keep funding available,” said Mr Klein. “At this point it’s too early, really, to know what kinds of medical and healthcare expenses people are going to be facing,” he added.

Ms Goldsmith echoed Mr Klein’s remarks regarding the challenges that people are facing vis-à-vis the loss of their healthcare coverage caused by furloughs in employment. Transportation to physicians’ offices or treatment facilities has emerged as another area of difficulty for many patients, as mass transit is off limits, and patients who have lost their jobs or who face other financial peril may be without other options.

These are not the only difficulties, said Ms Goldsmith. Concerns about shelter, childcare, and other living expenses are also mounting for patients with cancer, she noted.

“Our helpline continues to be operational, and our volume in any given week is up between 40% and 70%—the volume is just absolutely staggering,” she said.

“This pandemic has exposed the fault lines and the inequities in our healthcare system,” said Dr Franklin. “It really has made people who maybe weren’t paying attention open their eyes and see what’s going on,” she added.

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Last modified: May 5, 2020