HALIFAX -- The national organization that represents people who have cystic fibrosis is calling for changes to stop the process it says is blocking access to a breakthrough drug for CF patients.

It's a national story with a Nova Scotia connection.

It all centres around the fight for Trikafta, the newest in a series of drugs representing a huge step forward for cystic fibrosis patients.

It's also the drug that Nova Scotia's Chantelle Lindsay was waiting for before she was denied compassionate access by the manufacturer. She died in hospital last month.

The 23-year-old cystic fibrosis patient had been in hospital for weeks. Her family was hoping get her a supply of Trikafta, even though the company hasn't submitted it for approval in Canada yet.

When that story came out, the manufacturer, Vertex Pharmaceuticals, said it had concerns about changes to Canada's drug-pricing system and many advocates believe that has led to the company's hesitancy in submitting the drug.

On Wednesday, CF Canada held a news conference and called on Ottawa to reconsider the proposed changes -- which would force patented drug makers to drastically drop prices.

Canadians living with cystic fibrosis are running out of time, says Dr. John Wallenburg of CF Canada.

"Every year, 50 patients die and 50 more need lung transplants," Wallenburg said. "On their behalf … we call on the federal government to stop the implementation of the program and proposed changes to the (Patented Medicine Prices Review Board) and reconsider those changes so access to innovative new drugs like this will not be delayed or denied."

The federal government has defended its plan, saying the changes will make all medications more affordable.

But since Chantelle Lindsay's death, many have taken up the cause to change Ottawa's mind -- a fight her father, Mark Lindsay, also continues.