How Do I Use ICER Reports In Advocacy?

After the public meeting, we revise our report one more time. You can take this “Final Evidence Report” and share it with other patient advocates – ICER’s reports are a tool you can use to work towards fair pricing, fair access, and a future full of innovative drugs that improve your care.

What Is In The Final Evidence Report?

The full report includes a summary of the public meeting discussion, and any necessary updates to ICER’s conclusions following those discussions.

When Is The Final Evidence Report Released?

Around three weeks after the public meeting.

What is the ICER Snapshot?

The Snapshot is a patient-friendly summary of ICER’s Final Evidence Report. We hope this version is a helpful tool to share the results and impact of the ICER review with your community. See an example from our 2023 Sickle Cell Disease Review here.

Impact of Patient Community Participation on ICER Reviews

We are proud of the numerous examples of how patient engagement within an ICER review has made our work better and helped facilitate patient access. Importantly, we do not know of any ICER review that has had a direct negative impact on patient access to a new treatment.

Some examples of how we’ve incorporated patient perspectives include:

Sickle Cell Disease, 2020

The sickle cell patient community contributed extensive information and results from a patient survey to highlight what patients need in treatments as well as the significant challenges people living with sickle cell disease face due to discrimination. Highlighting these concerns in the ICER Report gave insurers a much better understanding of the lived experience and lead to the creation of exceptions to reduce barriers for opioid pain management for people with sickle cell disease. The report also called for further investment into innovative therapies for a condition that had been underserved for far too long.

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Retinal Disease, 2018

A new treatment for blindness failed to achieve traditional measures of cost-effectiveness in the health system, but patients and their families shared with us and at the public meeting how extensive the benefits of better sight were for the entire family through improvements in school, work, and social functioning. ICER developed an alternative economic model incorporating these benefits, and at our public meeting our independent appraisal committee voted that the therapy represented reasonable long-term value despite its high price.

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Alzheimer’s Disease, 2023

In 2017, the Department of Veterans Affairs (VA) began integrating ICER’s research into its pricing negotiations to provide greater value to Veterans and taxpayers. And ever since, the VA has used our work to achieve fairer pricing from manufacturers, while expanding access to the treatments that are most valuable to Veterans and their families. 

Following ICER’s March 2023 analysis of Lecanemab (branded Leqembi) for Alzheimer’s disease, the VA has decided to cover the therapy at a price, just below the $21,500 cost-effectiveness threshold set by the Institute for Clinical and Economic Review (ICER).” This is significant given that Lecanemab entered the market at a list price of $26,500 per year. This is a great example of how ICER reports can be used to recommend a fair price, resulting in greater access for patients.

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Patient Advocate Perspectives: Rebecca Kirch of NPAF