As the COVID-19 pandemic continues into 2022, advocacy groups have worked tirelessly to provide vital services to patients with cancer while facing numerous challenges, including reductions in staff and decreased funding. At the 11th Annual Summit of the Association for Value-Based Cancer Care in 2021, a panel of experts discussed the essential role that these organizations play in supporting patients, caregivers, and oncology providers. The session was moderated by Elizabeth Franklin, MSW, PhD, Executive Director, Cancer Policy Institute at the Cancer Support Community, Washington, DC, and Member, Policy & Advocacy Committee, Academy of Oncology Nurse & Patient Navigators (AONN+).
COVID-19 wreaked havoc on patients with cancer as well as on their support systems, said Patricia Goldsmith, Chief Executive Officer, CancerCare. The level of despair is “unlike anything we’ve ever seen,” she explained. “It used to be that maybe once, twice a month, we would have clients with suicidal ideations. That is a daily occurrence now.”
“Some patients are so desperate due to the cost of drugs and the cost of their care, that they are considering suicide or just avoiding treatment,” said Rose Gerber, Director, Patient Advocacy and Education, Patient Advocacy Network, Community Oncology Alliance.
Increased Use of Technology: Pros and Cons
The pandemic had a profound impact on technology, making support services such as telehealth more available but at the same time creating barriers resulting from digital illiteracy, said Marianne Gandee, Senior Director, Advocacy and Professional Relations, Pfizer Oncology.
“We will never go back to the way we were before the pandemic,” said Ms Goldsmith. “Not everybody needs to be in a physical office anymore. We learned a lot about what we can accomplish…we have learned how to be more efficient.”
Maintaining and protecting the relationship between the patient and manufacturer support programs is paramount, said Richard Ford, MBA, Vice President, Market Access, TrialCard, whose organization contracts with drug manufacturers to administer copay assistance and other Hub services. Educating patients about issues that have an impact on their cost-sharing is an important role of a patient advocacy program. “We will make ‘direct-to-patient’ payments to maintain the confidentiality of that relationship between the patient and the support program,” he said. These direct payments are shielded from the patient’s health plan, reducing the risk that the payment will be applied to a deductible accumulator.
“These patient support programs were set up to help individuals access the care that they need, in some cases, to live. They also were designed to help providers keep the lights on so that they can be made whole and continue to operate,” said Ethan Davidoff, Founder and Chief Executive Officer, Atlas Health, Seattle, WA. “With some of the more aggressive tactics on the plan design, they are artificially cost shifting to the member so that they can eat the rebate and keep the profit for themselves.” He agreed that advocates must teach patients to defend themselves against these types of tactics.
“As a technology vendor with health systems, we are deeply integrated in the major electronic health record, so as these prescriptions, orders, and treatment plans are being created, we can see on the front end exactly what should happen, which will hopefully prevent some of these issues from occurring,” Mr Davidoff said.
Ms Gerber emphasized that educating patients about drug rebates, prior authorization, and pharmacy benefits managers can be difficult when they are focused on survival. “A lot of the terminology that we are using is not the way patients think,” said. “We have to remember that the way we talk as advocacy leaders—or as people that work in the industry—and the way patients talk and think is often very different.”
Although digital connectivity has augmented learning, a recent survey by the National Coalition for Cancer Survivorship found that patients prefer to be served in person, said Ms Gandee. “One of the key things is that we cannot put the onus on patients to activate as soon as they have a cancer diagnosis. We have got to build that in somehow with the multidisciplinary team, with support services, and connectivity in the community,” she said. “I want to underscore how important advocacy organizations are. Unfortunately, many patients end up never seeing these organizations.”
The Young Survival Coalition offers virtual hangouts that allow patients with breast cancer to connect with others who share their diagnoses or treatment types, said Ms Gerber. The hangouts also target specific groups, such as Asian Pacific Islanders and the LGBTQ+ community. “These are groups that might not normally have a seat at the table,” she said.
Such innovation “has forced us to look at very quickly meeting patients where they are,” said Ms Goldsmith. “We will talk to individuals about ways that they may be able to use technology to connect with their families. But there is nothing like that personal touch.”
“We are now in a position, finally, where the data silos are coming down and instead of waiting for patients to raise their hand and say, ‘I need help,’ we can connect the dots and can engage those patients and let them know about all of their options. That is one of the hopes I have moving forward and an important strategy for making care more accessible to patients,” said Mr Davidoff.