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Certain elements are critical to the health care that patients with cystic fibrosis need.  The Cystic Fibrosis Engagement Network has identified those elements in its new Health Care Bill of Rights for Individuals with Cystic Fibrosis, released this week.

The document outlines four key rights:

Each of these rights impacts access to optimal care, but the right to accessible medication is especially relevant given a recent report from the Institute for Clinical and Economic Review.

Despite finding that new CFTR modulator therapies could “substantially improve” patients’ health outcomes, ICER slights the value of the innovative medication. The report notes that CFTR modulator therapies exceed ICER’s cost-effectiveness thresholds and suggests reducing the drugs’ price “by about half.”

The report doesn’t bode well for patients.  Insurers may use ICER’s analysis as rationale to deny access to the valuable treatment.  But it’s an important example of just why communicating health care rights is necessary.

The Cystic Fibrosis Engagement Network’s bill of rights marks a critical step toward recognizing the unique needs of the more than 30,000 people who suffer from cystic fibrosis, which is the most common fatal genetic disease in North America despite its classification as a rare disease.  Now, federal and state policymakers must commit to supporting the long-term health of individuals with cystic fibrosis by codifying these rights.

To learn more, read the “Health Care Bill of Rights for Individuals with Cystic Fibrosis.”

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