Larry Luxner,  —

Somer Love is sitting at her favorite local hangout, the Landmark Grill in suburban Midvale, happily devouring her lunch. Looming on the horizon to the east are Utah’s majestic Wasatch Mountains, but at more than 10,000 feet above sea level, the range is strictly off-limits to Love — as is…

Florida resident Megan Willis has cystic fibrosis (CF), and she’s not getting better. But that didn’t stop authorities last March from deciding otherwise, and denying her access to Medicaid — which for years had been paying her more than $100,000 in annual healthcare expenses. “My health has only gotten worse…

A baby born with cystic fibrosis (CF) today can now expect to live a median 44 years, says Preston W. Campbell, MD, president and CEO of the Cystic Fibrosis Foundation (CFF). “Life expectancy for CF patients is going up every year, and I think it’ll reach 70 or 80 in…

Cash-strapped governments across the 28-member European Union are struggling to control runaway healthcare expenditures — at exactly the same time as the promise of new but expensive therapies to treat rare diseases has never been greater. That’s the paradox faced by pharmaceutical companies as well as patient advocacy groups in…

It’s one of the ironies of cystic fibrosis (CF) conferences that the patients who most urgently need the information are discouraged from attending for fear of cross-contamination. Under infection control guidelines published by the Cystic Fibrosis Foundation (CFF), only one CF patient may be in a room at a…

Girls with cystic fibrosis (CF) reach puberty six to eight months later than healthy girls, about 16 percent of young females with CF encounter problems during sex, and 78 percent of these women would like to have children someday. These are among the key findings of an unprecedented survey conducted…

With the U.S. midterm elections now less than two weeks away, patient advocacy groups are solidly focused on a range of hot-button issues, from the Orphan Drug Tax Creditand affordable health insurance to future funding for rare disease research. Yet “whether Democrats take over the House or Senate, or…

The Cystic Fibrosis Foundation (CFF) will spend $100 million over the next five years to fund research aimed at fighting infections in patients with cystic fibrosis (CF) — a problem that seems destined to grow as patients live longer with the disease. The announcement came during the 32nd…

Half a year has gone by since disgraced pharma executive Martin Shkreli was sentenced to seven years in federal prison for securities and wire fraud while heading San Diego-based Retrophin. As founder and CEO of another company (then known as Turing Pharmaceuticals), in late 2015 Shkreli bought the rights…

A record 5,000 people from dozens of countries will gather next month in Denver for the 32nd Annual North American Cystic Fibrosis Conference (NACFC) — the world’s largest event focused on cystic fibrosis (CF) research and care. The Oct. 18-20 event at Denver’s Colorado Convention Center features 24 symposium sessions, 31…