I have faced the continuous need to self-advocate to manage my life with cystic fibrosis, particularly when facing complications post-transplant.
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Proposed policies would impose significant barriers and add burden for people with CF
Advocacy is impactful at all ages, but the term can sound intimidating. It implies effort, time, commitment, politics, and publicity. As a 30-year-old with cystic fibrosis, I am currently an active member of the CF community, but I was not always aware of the benefits, power, and impact of advocacy.
Sharing your CF story is one of the most powerful things you can do, but that can be hard for some of us. If you want to use your voice but struggle with how to get started, here are three things that helped me.
The legislation would impact the health care coverage of millions of Americans, including people living with cystic fibrosis.
Eight Patient/Consumer Groups Urge Senate to Start Over
Twelve patient/consumer groups urge senate to reject the bill.
Responding to the U.S. Department of Health and Human Services final rule on short-term, limited-duration insurance plans, the Cystic Fibrosis Foundation joined 26 other nonpartisan patient and consumer groups to voice concern that these plans will split the market and jeopardize access to affordable, adequate health care for people living with pre-existing conditions.
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.