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Public Comment Opportunity on Value of Potential New Therapy

You have the opportunity to add your thoughts to research that will be provided to health care decision makers. Here’s the announcement distributed by Cystic Fibrosis Foundation.

The Institute for Clinical and Economic Review (ICER), a nonprofit, nonpartisan organization that conducts analyses on clinical treatments, recently announced their intent to review the triple-combination elexacaftor/tezacaftor/ivacaftor modulator therapy that is currently under FDA review. These analyses inform on the cost-effectiveness and clinical value of therapies, and are intended to be tools for health care decision makers.

ICER is currently seeking input from the CF Community through their patient open input questionnaire. This questionnaire serves to provide ICER with information such as:
      • What it is like to have CF
      • Benefits and challenges to modulator therapies
      • What is important to people with CF and their families
      • What are the challenges in accessing treatments
All comments are welcome. To participate in this opportunity, please click on the button below by September 25th, 2019. Comments submitted will be used to assist ICER in their review. The sooner they receive comments the more likely they will be incorporated.
For the first question, “On which ICER report are you providing input?” please use cystic fibrosis as your answer.
Please note, the Cystic Fibrosis Foundation does not decide how how ICER will use this feedback. The CF community will have other opportunities throughout the eight-month development of their evaluation to help inform and help shape their report. To learn more about their process, please read their Patient Participant Guide.
The Community Voice Team

Unlike many surveys, this questionnaire asks for comments in your own words rather than multiple choice selections. While this may take more time, you are able to put your can highlight the issues of greatest importance to you.

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