Patient Advocacy During the Pandemic

Patient advocacy organizations regularly field and fulfill requests for assistance from patients with a serious illness, such as cancer. In the face of COVID-19, such requests have increased exponentially. Ms Goldsmith and Mr Klein outlined their organizations’ efforts to meet patients’ needs.

“Many patients with cancer, chronic disease, or rare disease were already seriously challenged, and the COVID-19 pandemic has just added to that challenge,” said Mr Klein.

Ms Goldsmith agreed, saying that CancerCare has garnered recognition for its efforts after funding from Bristol-Myers Squibb and Merck allowed for the creation of a model disaster relief program in partnership with 18 organizations. Even with that foresight, however, CancerCare had not prepared for a pandemic, she said.

“To give you some sense of the magnitude of what the organization is experiencing, as of March 30, we received 6009 calls from individuals looking for guidance, practical assistance, and financial assistance,” Ms Goldsmith noted. “There is a lot of desperation out there,…I think even higher than the levels we experienced during 9/11.”

In response, CancerCare mobilized the 3 pillars of its organization: psychosocial support, education, and financial assistance. Along with creating a resource webpage on COVID-19 for patients and caregivers, CancerCare hosted a virtual workshop on the virus for people with cancer, she said. The organization also created a fund for patients with cancer undergoing treatment who have COVID-19. The fund provides $300 grants to offset living costs. The CancerCare Copayment Assistance Foundation has been inundated with requests.

At the end of March, CancerCare partnered with the LUNGevity Foundation to provide $500 grants to patients receiving active treatment for lung cancer. In addition, CancerCare launched a program to help patients cover pet expenses during treatment, so far disbursing more than $41,600.

The PAN Foundation has also been working hard to meet patients’ needs via the PAN COVID-19 Assistance Fund, which provides $300 grants to patients diagnosed with or who self-quarantine because of the novel coronavirus, Mr Klein said.

The goal of these programs is “to add additional support to patients who are already struggling with out-of-pocket costs and with access and affordability issues,” he said.

More than 85% of the PAN Foundation’s grant recipients are >300% below the federal poverty level and many are Medicare beneficiaries, so the organization is focused on copayment assistance, noting that House Speaker Nancy Pelosi has proposed “putting a moratorium on out-of-pocket costs during the pandemic.”

“Coupled now with the pandemic, the amount of financial burden that is hitting vulnerable patients is tremendous,” Mr Klein said.