Today, the Senate released a new draft of the Better Care Reconciliation Act (BCRA), including an amendment that would allow insurance companies to offer plans not in compliance with critical patient protections in current law.
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The organizations urge continued protections for patients.
The organizations called on Congress to take a bipartisan approach to reform.
I have faced the continuous need to self-advocate to manage my life with cystic fibrosis, particularly when facing complications post-transplant.
Proposed policies would impose significant barriers and add burden for people with CF
More than 60 teens from across the country — almost half of whom live with cystic fibrosis — advocated for support of the PASTEUR Act.
Melanie Lawrence, an adult with cystic fibrosis, was selected to testify before a Senate Health, Education, Labor and Pensions subcommittee regarding the impact of antimicrobial resistance on patients who face heightened risk of infections, like those 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.