New UBC journalism project aims to raise awareness about rare diseases

Trevor has Pompe disease, an inherited disorder that affects one in 40,000 people.

The older he got, the more the disease weakened his muscles. He has survived this long thanks to one of the most expensive drugs in the world.

It costs around $1 million a year.

“They gave it to Trev on a compassionate basis finally for four years before we got funding from government,” mother Linda Pare said.

“One of the biggest barriers…is for patients to get access to medications,” Larry Lynd, a professor in UBC’s Faculty of Pharmaceutical Sciences, said.

Medications for rare disorders, known as orphan drugs, are notoriously expensive.

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Trey, who has Mucopolysaccharidosis, requires $18,000 worth of medication every week

“The first drug for a rare disease costs $300,000 and it seems to be that every new drug for a rare disease has followed at roughly the same price,” University of Ottawa health economist Doug Coyle said.

Sometimes the government pays for an orphan drug, sometimes it doesn’t. It depends on which province you live in. With a finite budget, sometimes the province has to say no.

“These drugs are going to get more and more expensive. Technology is also making them more expensive. If that’s the case, how is the Canadian health care system going to cope with that?” Peter Klein, a UBC journalism professor, asked.

It is one of the many questions addressed in Million Dollar Med$, a video project produced by students at the UBC Graduate School of Journalism in partnership with UBC’s Faculty of Pharmaceutical Sciences.

“The goal is really around raising awareness and public education of what our public payers and our private payers are dealing with when they have to make decisions around funding for rare diseases,” Lynd said.

Aside from questioning the exorbitant costs of these medicines, Million Dollar Med$ also looks at why Canada is among the few developed nations in the world that does not have a policy in place that gives pharmaceutical manufacturers financial incentives — like tax breaks — to develop new orphan drugs.

“What we wanted to do is start a conversation about this and shine a little bit of light on this because there are some real inequities,” Klein said.

– With files from Linda Aylesworth