Ontario's new youth pharmacare plan is denying access to a host of potentially life-saving drugs and wasting millions of dollars in the process, a cystic fibrosis advocacy group says.

The new pharmacare plan, dubbed OHIP+ by the province, came into effect in January. It provides free coverage of more than 4,400 drugs to children and youth 24 and under.

"It's a disturbing waste of desperately needed public funds," said Chris MacLeod, founder of the Canadian Cystic Fibrosis Treatment Society, adding that one of the drugs that isn't covered is one that was approved for use two years ago for cystic fibrosis patients.

MacLeod is calling on the Wynne government to revise OHIP+ to include only children who are not covered by private health insurance plans. In doing so, he argues that the province could offer a wider range of drugs to young Ontarians without coverage through their parents.

"Stop paying for the meds that were already paid for through private coverage," MacLeod said at a Tuesday news conference sponsored by Progressive Conservative MPP and health critic Jeff Yurek.

"Let's use the system to actually deal with the life-saving, game-changing drugs that are hard to get," MacLeod added.

Chris MacLeod, founder of the Canadian Cystic Fibrosis Treatment Society, said OHIP+ does not offer adequate coverage to thousands of young Ontarians with rare diseases. (Province of Ontario)

Crucial drug not covered by program

The list of uncovered drugs includes Orkambi, a cystic fibrosis medication that was first approved in Canada in January 2016.

Cystic Fibrosis Canada says the drug has been clinically proven to improve lung function, reduce lung infection flare-ups and reduce patient hospitalizations.

Victoria Vigneau, 15, who was diagnosed with cystic fibrosis as an infant, says the medication would help reduce the "constant and everyday pain" of the disease. In the past year, Vigneau has missed two months of school due to hospitalizations.

"Orkambi could take that away and make it easier for me to do everyday things," she said at the news conference at Queen's Park.

Ontario's OHIP+ provides free coverage of more than 4,400 drugs to children and youth 24 and under. (CBC)

However, a review conducted in October 2016 by the national Common Drug Review (CDR) — an independent organization that reviews drugs and medical devices — did not support listing Orkambi for public funding.

Ontario's Ministry of Health says governments in England, Scotland and Australia also do not provide public coverage for the drug.

High costs

The drug costs approximately $250,000 per year, making it prohibitively expensive for some private plans, including Vigneau's.

While MacLeod acknowledged issues associated with the high cost of the drug, he expressed disappointment that the province has been unwilling to negotiate with Vertex to potentially lower the sticker price.

"We just ask that people get to the table and negotiate a deal with the drug company," he said.

His organization does not have firm estimates about how many people might gain access to Orkambi if it were added to OHIP+, but MacLeod guessed it would include "a couple hundred" young Ontarians.

Drug being reviewed again

In response to criticism over its pharmacare program, the Ministry of Health acknowledged that some patients "may be experiencing some issues in the early stages of OHIP+ implementation."

The province added that it is relying on the rigorous drug review process used by provincial governments across the country.

"While drug funding decisions are made with compassion, they must be based on the best clinical and economic evidence available," a ministry spokesperson wrote in a statement.

There also may be hope for Orkambi to be added to OHIP+ in the near future.

Vertex, the Massachusetts-based company which produces Orkambi, submitted a new application to the CDR in February, which is scheduled to be reviewed in July.

The province says it will work to move the file "expeditiously."