Doctors seek law change to help those with cystic fibrosis

BOSTON (WWLP) - Tuesday is Cystic Fibrosis Awareness Day on Beacon Hill; a day to mark a serious genetic disease that affects thousands of Americans, including those in western Massachusetts.

Doctors gathered on Beacon Hill said western Massachusetts has only one major treatment facility for cystic fibrosis. It is headed by Dr. Robert Kaslovsky, who was recognized at the State House for his work in directing the Cystic Fibrosis Center at Baystate Medical Center.

Dr. Kaslovsky said one of his major concerns is the affordability of medical expenses related to CF. While Medicaid does a good job of covering costs, people with private insurance can end up paying thousands in co-pays. Massachusetts law does not allow pharmaceutical companies to offer copay assistance, and that is what he and several other advocates hope to change.

“You’re talking about $2-3-4,000 that perhaps a family doesn’t have to lay out for that, and right now they’re kind of stuck because the law in Massachusetts prohibits the companies from assisting them with their co-pays,” Kaslovsky said.

There are 33,000 people across the country that have cystic fibrosis. The disease, which is normally diagnosed during childhood , causes lung infections and chronic coughing.

The Cystic Fibrosis Foundation says developing treatment methods have increased the average survival age of people with CF to about 37 years of age.