The issue of discontinued, or orphan, drugs is becoming a big problem for hundreds of Canadians. When drug companies decide to pull medication from the market, patients are left to find alternatives.
Bob Mills was in such a position when two medications he took to treat his HIV infection were discontinued by Canadian drug makers.
"It certainly cut down on my options and dramatically reduced the choice of drugs," says Mills, who turned to a special access program run by the federal government.
"It means that it is more difficult to access, it's not immediately accessible," says Mills. "And in the short term, long term, however you want to look at it, a patient suffers with that condition until such time as they can get that drug into their body."
Other diseases are being affected. The company that offered the main drug, Bicillan, used to treat syphilis pulled it off the market recently. It said it wanted to review its "Canadian resources."
Canadian market too small
Health authorities in Alberta say they sent a request for the drug to an American company two months ago, it still hasn't been filled. Alberta is going through an outbreak of the venereal disease. It's the same in the Yukon, which has the highest rate of syphilis infection in Canada.
"We have to get it through the emergency drug release process, which involves telephone calls to Ottawa and certain delays," says Dr. Bryce Larke, the medical health officer for the territory.
Larke says the company that made Bicillan pulled it off shelves because the Canadian market is too small to generate the profits it wants to see.
Drug companies say that's not the case. They say drugs are pulled off as new generations of drugs are developed.
The Canadian Pharmacists Association begs to differ. It says companies have a responsibility to the public.
"Companies that are profiting to a great degree by the provision of pharmaceuticals in Canada should be able to provide Canadians...with these medications rather than simply looking at it as a business decision," says Barry Power of the CPA.
Power is lobbying for legislation to protect patients.
Health Canada admits it is also seeing a lot more complaints concerning orphan drugs.
"At this point, we anticipate the best solution to come forward is probably not government policy," says Ian Mackay, manager of the special access program.
"(We need) an increased understanding at the industry level where they can employ good practices so we don't get into these situations to begin with."