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How COVID-19 Is Affecting Patient Advocacy Groups: Financial Need Increasing

August 2020 Vol 13, Special Issue - AVBCC COVID-19 Highlights

Since March 2020, Cancer Support Community has broken records for the number of calls coming into its national network, said Elizabeth Franklin, LGSW, ACSW, Executive Director of the Cancer Policy Institute and Co-Chair of the Policy and Advocacy Committee of the Academy of Oncology Nurse & Patient Navigators (AONN+), in a webinar of the Association for Value-Based Cancer Care (AVBCC) on COVID-19.

Ms Franklin moderated the session on patient advocacy in the COVID-19 era; all the participants reported an overwhelming demand for assistance.

At the outset of the pandemic, the Patient Access Network (PAN) Foundation, which provides financial assistance to many patients with cancer, established a COVID-19 financial support program that provides a $300 debit card to people with COVID-19 or who had to quarantine because of the disease. To date, the program has provided debit cards to more than 3300 individuals.

“It can be used for treatment costs, but also transportation, food, and everyday expenses,” said Amy Niles, MBA, PAN’s Executive Vice President, about the debit card. “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.”

Ms Niles added that unexpectedly, individual donations to the PAN Foundation have increased during the past several months.

CancerCare has also had a massive increase in requests for help, according to its CEO, Patricia J. Goldsmith. “In April alone, we fielded over 9000 calls, which represented a 44% increase in volume. But it wasn’t just the volume that increased, it was the level of intensity and desperation. And, unfortunately, that continues 4 months later, as we still have no clear path forward.”

CancerCare has also developed a partnership with Community Oncology Alliance (COA), and has contracted with 2 national companies to provide medically safe transportation for people with cancer to COA 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 cancer patients 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.

The pandemic continues to disrupt important aspects of cancer care, such as routine screenings and clinical trials enrollment, said Lillie D. Shockney, RN, BSN, MAS, HON-ONN-CG, Founder of the Academy of Oncology Nurse & Patient Navigators and Professor of Surgery, Johns Hopkins University School of Medicine.

“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. So, we’ve had to call patients and push their appointments further out to the beginning of 2021,” Ms Shockney said.

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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Last modified: August 18, 2020
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