New Cystic Fibrosis Group Weighs in on Obamacare Revamp

As Congress continues to debate the future of the Affordable Care Act, a new advocacy group has a message for key legislators: protect cystic fibrosis patients as you reshape health care policy.

The Cystic Fibrosis Engagement Network describes itself as “a diverse coalition of patients, advocates and allies committed to securing access to optimal care.”  And in letters to both U.S. House and Senate committee members, the group outlines why patients with cystic fibrosis require pro-access policies to manage their disease.

“The patients, families and friends in our network carry the daily burden of this debilitating and systemic disease,” the letter explains, “which affects the respiratory, digestive, reproductive, and endocrine systems with chronic infections, inflammation, and scarring. But in recent weeks, they’ve encountered another grave challenge – fear of the changes that may result from the repeal and replacement of the Patient Protection and Affordable Care Act.”

The group calls for any replacement legislation to encompass seven principles:

  1. Prohibiting coverage denials based on pre-existing conditions.
  2. Prohibiting plans from discriminating based on age, expected length of life, present or predicted disability, degree of medical dependency or other medical conditions.
  3. Covering dependents up to age 26.
  4. Prohibiting waiting periods that exceed 90 days.
  5. Ensuring that coverage is affordable for cystic fibrosis families.
  6. Providing robust Medicaid coverage.
  7. Requiring that health plan networks include cystic fibrosis physicians.

Cystic fibrosis is the most common fatal genetic disease in North America, affecting about 30,000 Americans.  Though advanced treatments have expanded patients’ lifespan and improved their quality of life, the median age of death is 29.  No cure exists. Some patients have found in recent months that Medicaid coverage policies and prior authorization make it difficult to access the innovative medications that do exist.

[READ: Orphan Drug Access Still Eludes Some Cystic Fibrosis Patients]

The high cost of managing cystic fibrosis makes certain provisions of the Affordable Care Act, such as affordable coverage and anti-discrimination for pre-existing conditions, critical to these patients.

Advocacy groups such as the Cystic Fibrosis Engagement Network remain optimistic that federal efforts can help patients get access to “affordable, quality health coverage, particularly access to specialized providers and to long-awaited medical treatments.”

To learn more about the Cystic Fibrosis Engagement Network, visit:

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