A new UBC reporting project is investigating why Canadians who suffer from rare diseases sometimes pay thousands or even millions of dollars a year on treatment.

Million Dollar Meds is a collaboration between UBC's graduate school of journalism and the school's pharmaceutical sciences department and is looking at why costs are so high and how those costs could be alleviated.

Project director Alberto Galina says the investigation is looking at diseases that affect less than one in 1,000 people in Canada, are usually life-threatening and often involve metabolic function.

"Many times they do not have access to treatment, or access to treatment is different province to province," Galina told The Early Edition's host Rick Cluff. "What we need is a common front that can provide a general criteria to deal with rare diseases and help out families, too."

'Orphan drugs'

Featured in the project is Robert Rée, a cystic fibrosis advocate and grandfather of two cystic fibrosis sufferers, aged 12 and 14.

Cystic fibrosis is a lung condition that makes the sufferer more susceptible to infection, and in past decades, a child diagnosed would be fortunate to live to elementary school age.

Alberto Galina and Robert Rée

Alberto Galina (left) and Robert Rée are, respectively, project director and participant in Million Dollar Meds. The project is a collaboration between UBC's graduate school of journalism and the school’s pharmaceutical sciences department. (CBC)

"To have that news coming down was devastating to the family, there's no question about it," he said.

Rée's grandchildren, however, have much better prospects and might live to a normal life expectancy thanks to a drug called kalydeco — which cost their family $1,600 a day in Ontario, necessitating a move to B.C., where the drug is covered, he said.

"Researchers and academics think there's no real justification for the high cost. Basically there's just a lot of money to be made in this market," Galina said. "There's no competition. They're called 'orphan drugs' because they're the only ones."

"We were trying to get closer to the pharmaceutical industry to try and figure this out, but most of them declined our request for interviews."

Galina says one of the project's conclusions is the importance of a national strategy to deal with drugs for rare diseases instead of a province-by-province approach.

You can check out Million Dollar Meds here.

To hear the full story, click the audio labelled: Why are drug prices for rare disease so high? UBC journalism project wants to find out