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.

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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Psoriasis, 2018

With input from patient groups on how to interpret the clinical results from key studies, ICER concluded that most advanced treatments for severe psoriasis were fairly priced. But after hearing from patient groups about how insurers had placed many barriers to access for these drugs, ICER’s final recommendations called for insurers to lower these barriers in recognition that fair prices should merit broad access to treatment options.

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Patient Advocate Perspectives: Rebecca Kirch of NPAF