A Canadian health organization is calling for an end to the often tragic public fights over drug funding for those with rare cases.
Just this week two cases were in the spotlight once again.
A Milton mom died after fighting to get funding for a cancer drug that would extend her life and a 12 year-old girl from west of Newmarket urged Queen's Park to help her pay for a life saving drug to fight a rare form of cystic fibrosis.
The Canadian Organization for Rare Disorders has developed (and is now fine-tuning) a framework for how the country should handle these cases and will soon be pushing our governments to adopt it.
The organization wants to see consistency across the health care system when it comes to drug funding, instead of decisions made on a case by case basis.
President of CORD Durhane Wong-Rieger says it often seems like a lot to pay hundreds of thousands of dollars for drugs to treat rare conditions, but if the costs are absorbed across the health care system it's very affordable.
"These one-off cases and each appeal that comes up and trying to give an answer individually is not working. It's not good for the patients," she tells Newstalk 1010. "It's not good for the system. We need a strategy that's going to cover everybody."
Wong-Rieger wants our system to eventually cover every drug prescribed by doctors and says although the drugs are expensive the cost represents only about 1 percent of the public drug budget, because the cases are rare.
A strategy like the one CORD is pushing would help people like Brampton's Michael Eygenraam. He has a rare autoimmune disorder and has been prescribed a drug that could get his condition under control, but it's expensive and not covered.
Like Wong-Rieger he thinks the system could absorb the cost
"We could make it work. When you look at the cost per person in Canada, when you make it a public program, it's very little."
Among other things CORD is calling for more communication across the health care system to make resources available for those suffering from rare diseases, imagining a day when your family doctor would be able to put you in touch with experts from across the country.