Cystic Fibrosis

Making Treatment Less Rare for Rare Disease Patients

February 26, 2018

Waiting is a fact of life for patients with rare diseases such as cystic fibrosis. Many of these men and women, whose disease causes wheezing and frequent lung infections, live waiting for new and effective medications.  They have to delay activities due to symptoms that make breathing a struggle.  They wait for treatment, fighting through health plan barriers such as prior authorization or awaiting the decision of opaque bureaucracies such as Medicaid pharmacy and therapeutics committees.

Should Medicaid Patients be Required to Work?

February 22, 2018

Patients covered by Medicaid in Kentucky and Indiana could soon find themselves in a difficult position. According to new rules, recipients must complete 80 hours of “community engagement” or risk losing their health coverage.

Cystic Fibrosis Community Celebrates New Treatment Option

February 15, 2018

The Food and Drug Administration approved a new drug that helps address the underlying cause of cystic fibrosis, not simply its symptoms. The drug, a combination of tezacaftor/ivacaftor, is for patients aged 12 and older with certain cystic fibrosis mutations.

Rare Disease Day Spotlights Need for Research

February 28, 2017

Rare Disease Day brings international attention to the plight of patients who struggle with ALS, Gaucher disease, cystic fibrosis and other less common conditions.  This year’s theme is research, a challenge for any disease state but especially for conditions with small patient populations.