On June 11, 2019, Aimed Alliance joined 37 other organizations in signing onto a letter to the Institute for Clinical and Economic Review (ICER), in response to the institute’s 2020 Value Assessment Framework. The letter urges ICER to focus on patients and people living with disabilities in its assessments and provides suggestions for ICER to improve its value framework.
The letter requests that ICER engage patients and patient advocates equally in its public comment process. The letter highlights that ICER only incorporated one-third of the comments submitted by stakeholders during the public comment process. Notably, patient advocates were least likely to be acknowledged and incorporated, as ICER has acknowledged less than 16 percent of comments submitted by patient advocates, compared to 33 percent of industry comments and 32 percent of comments submitted by professional and provider societies. Additionally, the letter points out that ICER does not give expert clinicians or patients with the studied condition a vote in its final assessments and urges ICER to give these stakeholders an equal voice in future assessments.
In addition to identifying issues with the public comment process, the letter also urges ICER to abandon the use of quality-adjusted life years (QALYs) and similar metrics that treat patients as averages, and instead utilize new value measures that account for unique patient experiences and preferences. The letter emphasizes how QALYs discriminate against patients and people with disabilities by placing a lower value on their lives. Additionally, the letter asserts that metrics based on averages do not truly reflect patient values and fail to adequately capture the diversity of patient populations.
To learn more, read the letter.