A 9-year-old Durango girl who has battled cystic fibrosis since birth, Wednesday met the man who spurred the use of a new medicine that has improved her quality of life.
Annelise Heinicke explained her daily routine to Sen. Michael Bennet, D-Colo., and demonstrated the use of two pulmonary regimens that keep her lungs healthy.
Cystic fibrosis is a genetic disorder that affects mostly the lungs, filling them with mucous. But it also can affect the pancreas and liver.
Annelise and the senator talked at Animas Valley Elementary School where she is a fourth-grader.
“Nothing slows her down,” said Principal Lisa Schuba. “She does a lot of sports.”
Tests when she was a newborn revealed that Annelise had a rare form of cystic fibrosis, which affects about 70,000 people worldwide.
“She was swallowing pills before she was potty trained,” mom Jennifer Heinicke said.
The medications Annelise took worked, but were whatever was on the market.
Enter Bennet, who got a drug called Kalydeco on the fast track for approval by the Food and Drug Administration. The drug was approved in 2012 for use on a small number (4 percent) of cystic fibrosis patients such as Annelise who had a specific genetic mutation.
The success was such that it led to new Kalydeco combination therapies that could treat as much as 65 percent of people with cystic fibrosis.
The treatments won a “Breakthrough Therapy” designation from the FDA based on a provision in its Safety and Innovation Act written by Bennet.
A one-month supply of Kalydeco – Annelise takes two pills a day – costs $26,000.
The Heinickes pay nothing because the cost is covered by the drug manufacturer and the insurance company.
“It’s a miracle in a pill bottle,” Jennifer Heinicke said.
daler@durangoherald.com
