Today, the Supreme Court of the United States issued an historic health care ruling that affects all Americans, including those living with rare diseases like cystic fibrosis. By affirming core provisions of the Patient Protection and Affordable Care Act (PPACA), the Supreme Court has preserved health reforms that benefit many people with CF. These reforms include:

• Prohibiting insurance companies from denying or withdrawing coverage based on a pre-existing condition.
• Preventing insurers from establishing lifetime coverage limits on their health care plans. Specifically, the law restricts annual dollar limits that some health plans place on benefits and phases out annual limits entirely in 2014.
• Permitting children to remain on their parents' or guardians' insurance plans until age 26.

The court did limit the law's provision that expanded Medicaid to some adults without children. The court's decision leaves the option to expand Medicaid to this additional population at the discretion of each state. The court limited the federal government's ability to penalize states that choose not to expand Medicaid eligibility.

These provisions help protect continuity of coverage and access to care for those with CF and other chronic diseases, but more steps are needed to reduce the financial burden families face in affording their care - especially in the current economic environment. A growing number of people in the CF community face difficult choices about their or their child's health care, including whether to postpone care and/or cut back on medications, due to financial concerns.

The CF Foundation will continue to educate Congress on the unique health challenges facing people with cystic fibrosis and advocate for solutions that help make care more affordable for those with this disease.

The Foundation also has a network of resources to help people with CF navigate the health care system and access the care they need. For example, the Cystic Fibrosis Patient Assistance Foundation helps patients meet their co-pay requirements and provides financial assistance to those in need.

Additional Resources

• Learn about the Foundation's patient assistance programs and how they can help you make the most of your health coverage.
• Read about the Foundation's efforts to help people with CF better afford the care they need to stay healthy.