On behalf of the CF community, the Cystic Fibrosis Foundation has expressed its concern to the Social Security Administration (SSA) about a proposed rule that could make it more difficult for people with CF to receive disability benefits.
Site Search
In an effort led by Congressional Cystic Fibrosis Caucus co-chairs Representatives Edward Markey (D-MA) and Tom Marino (R-PA) and Senator Michael Bennet (D-CO), 37 key members of Congress sent letters to the Social Security Administration (SSA) expressing their concern about a proposed rule that could make it more difficult for people with CF to receive disability benefits.
Lack of insurance coverage for cystic fibrosis-related medications remains a top concern for people with CF and their families, a recent study found.
At first, it was easy to get my son to do his cystic fibrosis treatments. But as he got older, he started to hide his medications, rather than take them. I finally learned how to get him to see the importance of taking his medications.
Many people with cystic fibrosis and their families have questions about their rights as an individual living with a disease.
When considering making a change to your health insurance coverage or enrolling in a plan, it is important to know about the annual open enrollment period and when those changes can be made.
Having two sons living with cystic fibrosis, I struggled for years with the financial burdens and restrictions of the insurance market. Since the Affordable Care Act was passed in 2010, I no longer have to worry about lifetime caps and astronomical premiums -- two issues that caused enormous grief for my family.
In the summer months, some things require special attention for people with cystic fibrosis.
Emily, Piper and Somer continue their “real talk” about living for each day, reinventing their future and being up for a good challenge.
In a complex and rapidly changing health care system, we support policies that promote adequate, affordable health coverage so people living with cystic fibrosis can receive the high-quality, specialized care they need to live longer, healthier lives.