Connecting Payers to Patients with Rare Diseases

January 6, 2023

Patients with rare diseases often require complex, expensive medications that may or may not be on their payer’s formulary. In a recently published paper in Future Medicine, Siva Narayanan put forward a payer-patient engagement framework (PPEF) intended to connect rare disease patients with payers to make informed reimbursement decisions based on the individual’s needs.

According to Narayanan, “Published literature revealed scant use of patient preferences/input by payers, and the potential relationship between payer’s ethical formulary decisions and payer’s moral intent/behavior/actions, and their external credibility and reputation. Payer/patient interviews identified formal and informal ways to solicit patient input and incorporate them in drug formulary review materials. PPEF was formulated to engage patients, assess, and act on evidence and perform transparent external communication.”

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(Source: Future Medicine, January 5th. 2023)

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