The Department of Justice's decision to no longer defend critical provisions of the Affordable Care Act (ACA) risks health insurance coverage for people with cystic fibrosis and other pre-existing conditions.
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As part of the Cystic Fibrosis Foundation's 11th annual March on the Hill, more than 100 advocates from 44 states met with nearly 300 elected officials or their staff to help ensure that everyone with cystic fibrosis has access to high-quality, specialized care and adequate, affordable health care.
Ten patient and provider groups, representing millions of Americans, issued the following statement in response to the release of the nonpartisan Congressional Budget Office's (CBO) scores of two pieces of health care reform legislation currently being considered by the U.S. Senate.
Bipartisan legislation could help patients access necessary prescription drugs by potentially reducing the financial burden that results from complex and hard-to-navigate health insurance plans
Cystic fibrosis affects people of every racial and ethnic group. Of the nearly 40,000 people living with CF in the U.S., approximately 15% are identified as racially or ethnically diverse. Research shows that people of color with CF, particularly people who are Black and Hispanic, experience unique challenges and often have negative experiences that can lead to poorer outcomes. Some of these inequities are referenced in the following data.
The Foundation seeks to advance its mission by making improvements in key areas of health equity and outcomes and diverse workforce development.
206 care center directors sign a letter citing clinical consequences if decision moves forward.
The Foundation’s commitment to these principles will continue to be a cornerstone of the Foundation’s work to advance our mission in 2023.
During the annual event, volunteers advocated for the PASTEUR Act and the HELP Copays Act, two bipartisan pieces of legislation that could have substantial, positive impact on the CF community.
Cost effectiveness analysis must be used carefully and as part of a comprehensive evaluation of the value a treatment, such as highly effective modulators, provide to people living with cystic fibrosis.