Rare disease patients sometimes discover that, even when research does yield breakthrough treatments, access barriers stand in their way.  Just take cystic fibrosis, a disease that causes mucus to cover the lungs, making it difficult to breathe. 

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.

CFEN urges Senators to consider the needs of cystic fibrosis patients while debating health care reform.

CFEN urges members of Congress to consider the needs of cystic fibrosis patients while debating health care reform.

Some proposed policy reforms would harm a group that desperately needs access to affordable treatment.

More than a year after a breakthrough drug for cystic fibrosis became available, fewer than half of patients who meet the Food and Drug Administration’s criteria can actually access the medication.

Patients with rare diseases still struggle to access the medicine they need, despite growing disease awareness and passage of the Affordable Care Act.