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A disconnect exists between payers and patients with rare diseases about including patient input in the formulary process for orphan drugs.
Although payers see themselves as patient-centric, patients don’t necessarily see them the same way, according to a poster presented at the annual meeting of the Academy of Managed Care Pharmacy held in Chicago, from March 29, 2022, to April 1, 2022.
In interviews with 24 payer and patient stakeholders conducted by Avant Health, 44% of patients identified payers as patient-centric and 41% of patients noted payers to be economically driven, instead of being patient centric. This is in contrast to 86% of payers that believed they were patient centric.
“There's some disconnect in terms of how payers perceive themselves versus how others perceive payer organizations as a whole,” Siva Narayanan, Ph.D., CEO of Avant Health, said recently in an interview with Formulary Watch. “This is not surprising, based on how the payer organizations function and how they make decisions without patient input. Patients have very little idea about the whole formulary decision-making process.”
The purpose of this research was to assess payer and rare disease patient perception toward payer reputation, patient centricity, orphan drug value, payer patient engagement, and incorporation of rare disease patient perspectives on value of orphan drugs in drug formulary decision making process in the United States.
Researchers, led by Narayanan, found that developing a way to formally incorporate patient input in payer formulary decision-making process could benefit payers by enhancing customer perception of payer’s patient-centricity and reputation.
Narayanan suggested that payers felt confident in their processes for evaluating orphan drugs and believed they are making the right decisions for patients. “In these instances, payers are very judicious in the decisions. They don't see the orphan drugs as delivering much value when compared with the price of that therapy.”
Payers, he said, don’t seek patient input when making decisions about rare disease therapies. “But patient stakeholders want to be heard and their needs to be incorporated in those decisions,” Narayanan said.
Payers are skeptical of patient input because they believe patients are biased, he said. In the survey, both patients (53%) and payers (71%) noted negative perceptions payers hold toward patient’s direct input.
“Payers, too, have inherent bias. One thing that stood out, especially with the orphan drugs, is the drug price matters. But every payer believed they were making the right decision for the patient. Everyone mentioned they were patient centric, looking at value overall in terms of efficacy and safety. They acknowledged that patients may see the benefit of orphan drugs differently, but ultimately said they have to stick with their process,” he said.
But although 88% of patients want input in formulary decisions, 86% of payers indicated their skepticism about such input. “If the patient input comes through appropriate channels, it's bound to be a little bit less biased. That’s where the payer mentioned that patient advocates and business advocacy groups were their preferred channels to get this information.”
Patients, however, would like to see input not just from advocacy organizations be considered, but also would like payers to consider surveys, interviews/focus groups, and written correspondence from patients themselves.
Narayanan said review of patient input by formulary committees and incorporation of this information in review materials would go a long to helping organizations be seen as trustworthy and credible.