Cystic Fibrosis Patients Assert Health Care Rights

May 24, 2018

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:

  • The right to robust insurance coverage. The bill of rights outlines sources for gaining coverage and warns against lifetime caps used to limit care. It also identifies criteria that should not be used to deny coverage.
  • The right to accessible medications. The bill of rights notes that patients need the opportunity to maintain or improve their health by accessing treatments prescribed by their doctor – without having to overcome barriers like step therapy.
  • The right to accessible doctors and specialists. The bill of rights speaks to the necessity of comprehensive networks for both public and private health systems.
  • The right to policies that encourage innovation. The bill of rights describes the importance of supporting continual research and development for “orphan diseases” like cystic fibrosis.

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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