--- title: Demonstrating the Value of Specialty Medications that Treat Cystic Fibrosis description: Cystic fibrosis is the most common and fatal genetic disease. There are newer, advanced therapies to treat it, but adherence is critical and difficult. image: https://blog.elixirsolutions.com/hubfs/Blog%20Images/CF7.png --- [![Elixir_Logo_Tag](https://visiblydifferent.envisionrx.com/hubfs/Elixir_Logo_Tag.png "Elixir_Logo_Tag")](http://www.elixirsolutions.com) [![](https://blog.elixirsolutions.com/hubfs/Blog%20Images/CF7.png) ](https://blog.elixirsolutions.com/cystic-fibrosis-kpi) # Demonstrating the Value of Specialty Medications that Treat Cystic Fibrosis Cystic fibrosis (CF) is a rare genetic disorder that affects one in 3,900 live births. There are approximately 30,000 Americans living with the condition, which is considered the most common and fatal genetic disease in the U.S. Older CF therapies only treated the symptoms, but newer, advanced therapies, known as CFTR modulators, treat the underlying cause of the disease at the cell level. Adherence to these medications is critical, but usually low due to the significant disease burden and medication load these individuals deal with. Marly Arbuckle, senior director, specialty solutions and strategy, discusses the key performance indicators that demonstrate adherence and improvement in the member's condition.    Sources: 1. https://rarediseases.org/rare-diseases. Accessed September 17, 2021 2. Current and Emerging Therapeutics in Cystic Fibrosis: Ensuring Continuity of Care within the New Treatment Paradigm. Specialty Pharmacy Times. December 2015. Vol 6. No 6 3. CF Foundation. Annual Data Report 2014. Accessed 02.25.2016 4. Bio-logis, Personal Genomics Services. [https://](https://www.bio.logis.de/pgs/produktnutzen/carrier-status)bio.logis.de/pgs/produktnutzen/carrier-status. Accessed 02.10.2016 * Results not guaranteed.   Topics: [Clinical Trends & Insights](https://blog.elixirsolutions.com/tag/clinical-trends-insights) [![Share on facebook](https://blog.elixirsolutions.com/hs-fs/hubfs/Root/Social%20Icons/facebook-color.png?width=24&name=facebook-color.png) ](http://www.facebook.com/share.php?u=https://blog.elixirsolutions.com/cystic-fibrosis-kpi&utm_medium=social&utm_source=facebook) [![Share on linkedin](https://blog.elixirsolutions.com/hs-fs/hubfs/Root/Social%20Icons/linkedin-color.png?width=24&name=linkedin-color.png) ](http://www.linkedin.com/shareArticle?mini=true&url=https://blog.elixirsolutions.com/cystic-fibrosis-kpi&utm_medium=social&utm_source=linkedin) [![Share on twitter](https://blog.elixirsolutions.com/hs-fs/hubfs/Root/Social%20Icons/twitter-color.png?width=24&name=twitter-color.png) ](https://twitter.com/intent/tweet?original_referer=https://blog.elixirsolutions.com/cystic-fibrosis-kpi&utm_medium=social&utm_source=twitter&url=https://blog.elixirsolutions.com/cystic-fibrosis-kpi&utm_medium=social&utm_source=twitter&source=tweetbutton&text=) [![Share on email](https://blog.elixirsolutions.com/hs-fs/hubfs/Root/Social%20Icons/email-color.png?width=24&name=email-color.png) ](mailto:?subject=Check%20out%20https://blog.elixirsolutions.com/cystic-fibrosis-kpi&utm_medium=social&utm_source=email%20&body=Check%20out%20https://blog.elixirsolutions.com/cystic-fibrosis-kpi&utm_medium=social&utm_source=email) ![Share on print](https://blog.elixirsolutions.com/hs-fs/hubfs/Root/Social%20Icons/print-color.png?width=24&name=print-color.png) ### Post By Topic - [Clinical Trends & Insights (17)](https://blog.elixirsolutions.com/tag/clinical-trends-insights) - [Getting to know Elixir (7)](https://blog.elixirsolutions.com/tag/getting-to-know-elixir) - [Industry Updates (20)](https://blog.elixirsolutions.com/tag/industry-updates) - [Perspective on the Rx Pipeline (13)](https://blog.elixirsolutions.com/tag/perspective-on-the-rx-pipeline) - [Solutions & Best Practices (22)](https://blog.elixirsolutions.com/tag/solutions-best-practices) - [Trends & Insights (3)](https://blog.elixirsolutions.com/tag/trends-insights) [See all](https://blog.elixirsolutions.com/cystic-fibrosis-kpi#) ### Receive Insights in your Inbox ## **LEARN MORE** Key performance indicators that should be monitored for other specialty medications. 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