On Friday, June 14, Politico's Prescription Pulse Newsletter highlighted the Partnership to Improve Patient Care (PIPC) and over 30 patient and disability groups concerns about the Institute for Clinical and Economic Research's (ICER) 2020 Value Assessment Framework. The newsletter covers the groups' letter to ICER that criticizes its use of the quality-adjusted-life-years (QALY) metric, amplifying the coalition's message that ICER should abandon the use of discriminatory cost-effectiveness analyses. "The groups — including diabetes, epilepsy, pain and mental illness organizations — want ICER to get rid of a metric known as quality-adjusted life years that is typically used in cost-effectiveness studies to try and measure how much a therapy can improve a life," the post states. "Critics argue the measure places a lower value on the lives of people with disabilities and overestimates their burden. The coalition said it wants ICER to use models that are 'open-source, transparent, and able to generate disease-specific information.'"
The post in its entirety can be read below.
DISABILITY ADVOCATES RAIL AGAINST DRUG VALUE ASSESSMENTS — A coalition of 38 patient and disability groups pressed the Institute for Clinical Economic Review this week to change its cost-effectiveness analyses, writing in a letter that the nonprofit's system for assessing medicines' value — which drugmakers increasingly lean on when pricing their products — could fuel restricted access and discrimination.
The groups — including diabetes, epilepsy, pain and mental illness organizations — want ICER to get rid of a metric known as quality-adjusted life years that is typically used in cost-effectiveness studies to try and measure how much a therapy can improve a life. Critics argue the measure places a lower value on the lives of people with disabilities and overestimates their burden. The coalition said it wants ICER to use models that are "open-source, transparent, and able to generate disease-specific information."
ICER says it's not that simple. The organization has adapted a number of past recommendations from patient groups, including changing its framework for ultra-rare diseases and spending more time with the patient community as it reviews therapies, said spokesperson David Whitrap. ICER has also adapted another metric, dubbed 'evLYG' to accompany QALY in assessments (the patient groups say that doesn't address their concerns because payers can still use it to refuse coverage).
"We recognize we won't please all stakeholders, particularly those who would prefer a status quo where manufacturers are able to charge any price they'd like for a new drug in this country," Whitrap said. "But we're pleased that ICER continues to play an important role in supporting explicit, transparent discussions in the U.S. on how best to align a drug's price with its benefits for patients."'
ICER will publish draft changes to its framework on August 16. Read the coalition's full letter.
