Patient Advocacy Efforts During the COVID-19 Pandemic

TON - August 2020, Vol 13, No 4

The COVID-19 pandemic is stretching into its fifth month in the United States, and patient advocacy groups continue to focus on providing the necessary support and services to patients with cancer. This topic was explored by a panel of experts during a recent Association for Value-Based Cancer Care webcast. The session was moderated by Elizabeth Franklin, LGSW, ACSW, Executive Director, Cancer Policy Institute, and Co-Chair, Policy & Advocacy Committee, Academy of Oncology Nurse & Patient Navigators (AONN+). The consensus among the panel members was that there has been an overwhelming demand for assistance.

Amy Niles, MBA, Executive Vice President of the Patient Access Network (PAN) Foundation, discussed some of the actions that her organization has taken to help patients during the crisis. At the outset of the pandemic, the PAN Foundation, which provides assistance in approximately 70 disease areas mobilized to establish a COVID-19 financial support program, provided a $300 debit card for people who were either diagnosed with the virus or who were directed to quarantine. To date, the program has provided cards to more than 3300 individuals.

“It can be used for treatment costs, but also transportation, food, and everyday expenses,” she said. “A $300 debit card may not sound like a whole lot of money to some, but to the people we serve, it is. Half of them are at or below the federal poverty level. Many of them are experiencing food insecurity; 8 of 10 people who received the card used it to buy food.”

After opening in early April 2020, the foundation’s COVID-19 financial support program had to close again within weeks when funds ran out; it reopened a few weeks later and then was depleted again. “We are actively fundraising now and hoping to help more individuals with these debit cards,” Ms Niles said. She noted that, unexpectedly, individual donations have increased during the past several months.

CancerCare, which provides free counseling, support, and financial assistance to hundreds of thousands of people with cancer every year, has experienced a massive increase in requests for help over the past several months, said Patricia Goldsmith, the organization’s CEO.

“In April alone, we fielded over 9000 calls, which represented a 44% increase in volume. But it was not just the volume that increased, it was the level of intensity and desperation. Unfortunately, that continues 4 months later, as we still have no clear path forward,” she noted.

CancerCare has added 3 full-time and 2 part-time social workers who were not part of the year’s original budget but were desperately needed. Those new positions have been supported in part by a record level of fundraising.

CancerCare has also developed a partnership with the Community Oncology Alliance (COA), contracting with 2 national companies to provide medically safe transportation for people with cancer to its practices for their appointments. “Drivers are masked and gloved, and cars are sanitized,” explained Ms Goldsmith. “Over 110 COA practices are registered to use this program, and to date we have transported over 7000 patients with cancer to and from treatment.” The program was originally launched with a $1-million grant from Bristol Myers Squibb, but most of those funds have now been expended and CancerCare is fundraising to keep the program going.

The pandemic continues to disrupt important aspects of cancer care, such as routine screenings and clinical trials, said Lillie Shockney, RN, BSN, MAS, HON-ONN-CG, Professor of Surgery at Johns Hopkins University School of Medicine and Founder of AONN+. “In April we had hoped to bring patients back in for routine annual or biannual screenings in the early fall, but that’s not going to happen. We’ve had to push their appointments further out to the beginning of 2021.”

Many patients were in active discussions about clinical trials when COVID-19 hit, only to be told that they could not yet be enrolled. “We had to keep pushing things off further and further, and in most cases, they’ve now missed their window to participate,” Ms Shockney said. “The psychosocial impact of all of this uncertainty on our patients is enormous.”

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