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.
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Lack of insurance coverage for cystic fibrosis-related medications remains a top concern for people with CF and their families, a recent study found.
The Burkholderia cepacia complex (B. cepacia) consists of different species of bacteria that are found in the natural environment. Some of these species pose serious risks to the health of a person with cystic fibrosis.
Germs are everywhere, but there are things you can do to reduce your risk of getting sick. The following tips are intended to keep you informed so you can make the best decisions for yourself.
Medical studies show that people with CF are at particular risk of spreading certain germs among others with the disease. This is known as cross-infection.
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.
Emily, Piper and Somer continue their “real talk” about living for each day, reinventing their future and being up for a good challenge.
Getting sick for a person with CF is so much more than a couple days off watching Netflix. It can be really scary. But you can help us stay healthy this cold and flu season.