Many vital patient support groups are struggling to survive in a post–COVID-19 world. Some advocacy organizations have endured or are facing massive layoffs and decreases in funding. As resources are depleted and demand grows, a team of panelists discussed the future of patient advocacy groups and the vital role that they have in supporting patients and caregivers. The discussion was moderated by Elizabeth Franklin, PhD, MSW, president, Cancer Support Community.
While COVID ravaged cancer patients, it did the same to support systems, with layoffs and consolidated programs, said Patricia Goldsmith, CEO, CancerCare. The level of despair is “unlike anything we’ve ever seen,” she said. “It used to be that maybe once, twice a month, we would have clients with suicidal ideations. That is a daily occurrence.”
“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,” agreed Rose Gerber, director of Patient Advocacy and Education, Patient Advocacy Network, Community Oncology Alliance.
The COVID pandemic has caused a disruption in technology, opening some support platforms such as telehealth while also 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 at CancerCare before the pandemic,” said Ms Goldsmith. “Not everybody has to be in a physical office. We learned a lot about what we could accomplish…we’ve learned how to be efficient.”
Maintaining and protecting the relationship between the patient and manufacturer support programs is paramount, said Richard Ford, MBA, vice president, Market Access, TrialCard, which contracts with drug manufacturers to administer copay assistance and other hub services. “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 of having the payment applied to a deductible accumulator.
“These patient support programs were set up to help the patients access the care that they need to, in some cases, live. Have a chance of survival, as well as helping the providers keep the lights on so that they can be made whole and continue to operate,” said Ethan Davidoff, founder and CEO, Atlas Health. “With some of the more aggressive tactics on the plan design, they’re artificially cost shifting to the member so that they can eat the rebate and keep the profit for themselves.”
However, educating patients about drug rebates, prior authorization, and pharmacy benefits managers can be difficult when cancer patients are focused on survival. “A lot of the terminology that we’re using is not the way patients think,” Ms Gerber said. “We have to remember that the way we talk and the way patients think and talk is often very different.”
“As a technology vendor with health systems, we’re deeply integrated in the major electronic health record, so as these prescriptions and orders and treatment plans are being created, we can see on the front end exactly what should happen and hopefully prevent some of this silly stuff from happening,” Mr Davidoff said.
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 can’t put the onus on patients to activate as soon as they have a cancer diagnosis. We’ve 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. Most patients end up never seeing advocacy organizations, never getting the resources that they need.”
The Young Survival Coalition offers virtual hangouts that allow breast cancer patients to connect with others to share their diagnoses or treatment types, said Ms Gerber. The hangouts also target specific groups, such as Asian Pacific Islanders and the gay community.
Such innovation “has forced us to look very quickly at meeting patients where they are,” said Ms Goldsmith. “We’ll talk to individuals about ways that they may be able to use technology to connect with their families. But there’s nothing like that personal touch.”
Said Mr Davidoff, “We’re now in a position, finally, where the data silos are coming down and instead of waiting for a patient to raise their hand and say, ‘I need help,’ we can connect the dots and we can engage that patient and let them know about all of their options. That’s one of the hopes I have moving forward—and how we can make care more accessible to help these patients.”