October 21, 2021
During the pandemic, people with cystic fibrosis weren’t just fighting their disease. Many were also fighting economic uncertainty.
October 22, 2019
Not only is cystic fibrosis a devastating disease, most patients living with cystic fibrosis do not have access to an…
September 5, 2019
One benefit of using co-pay coupons will soon disappear, according to new federal guidance.
June 7, 2019
Elated. Nervous. Hopeful. That’s how thousands of cystic fibrosis patients felt upon hearing last week’s news: the Food and Drug Administration will soon review a new triple combination therapy that could drastically improve their quality of life.
January 25, 2019
“Important Prescription Plan Change,” the letter announced. “We’re writing to inform you of an important upcoming change to your specialty prescription benefits.”
January 9, 2019
Decades after Congress passed the Orphan Drug Act, only about 10 percent of patients with rare diseases actually receive treatment with orphan drugs, a new report finds.
June 8, 2018
Economists at the Institute for Clinical and Economic Review advise a whopping 77 percent price discount on new CFTR modulators for cystic fibrosis, according to a final evidence report. The drugs can “substantially improve patient health outcomes,” the group concedes, but their prices exceed ICER’s cost-effectiveness threshold. One manufacturer has called ICER’s analysis “a sham.”
May 24, 2018
Certain elements are critical to the health care that patients with cystic fibrosis need. The Cystic Fibrosis Engagement Network has identified those elements in its new Health Care Bill of Rights for Individuals with Cystic Fibrosis, released this week.
March 23, 2018
If health plans heed a new report from the Institute for Clinical and Economic Review, patients with few options to treat their cystic fibrosis may soon have fewer still.
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.