Students focus attention on 'orphan drug plan' and raise awareness

A grade 10 civics class at Brampton Christian School in Caledon is trying to raise awareness in a potentially deadly shortcoming in Canada's health care system.

Jasdeep Gill's class followed the provincial election that took place in October. They noticed health care was an issue that needed more attention.

The class focussed on the Orphan Drug Policy (ODP). ODP is a policy that would ensure Canadians with rare diseases get treated just like Canadians who have more common illnesses. With this policy, people who suffer from rare illnesses will not have to worry about not being able to afford the treatment that could save their lives.

An "orphan disease" is one that effects roughly one out of 1,000 people. The number of people who have orphan diseases in Canada is not extremely high, but the cost to get available treatment is.

One student, Brittany A.S., knows first-hand what the consequences of not having an ODP are. Brittany's dad suffers from a disease called Pompes. This disease is a rare genetic disorder that leads to progressive muscular degeneration and premature death. Genzyme has recently come out with a drug that is meant to replace the missing or deficient enzyme. This drug has been covered in Canada for patients one and under, but seven other cases in Canada are still left. Brittany has gradually seen the effects of Pompes in her dad, seeing him first start to walk with a cane and now using an electric chair. The drug that could very well help save her dad from a premature death would cost them an estimated $400,000 annually!

"As a citizen of a country like Canada it is ridiculous for someone to have to pay that much for treatment," Gill said.

Canada is the only developed country that doesn't have an ODP. If an ODP were to be put in place, it would not be expensive to add to the provincial health budget since the number of patients is very small. Instead it would be very beneficial. The class contends having an ODP would help doctors diagnose orphan diseases earlier on in a patient, because all the information on orphan diseases will be in a statistical registry at national levels. An ODP will also encourage the research in finding treatments for rare diseases.

"We as a class feel strongly about having an ODP in place. We will be making and handing out pamphlets on this topic, creating Web sites and making petitions in order to see the changes we feel are necessary happen. We will also do our very best to get this topic into the public eye, and hopefully be able to go down to Parliament Hill as a class.

"Even though we are only in grade 10, we know that if we try we can make our voices heard in a democratic country like ours. Support us on our mission to get an ODP put in place, because you never know when you might be in need of it yourself."

For more information on what the class is doing, or to get involved, contact the school at 905-843-3771.