Canadian Student Advocates for Rare Disease Patients with Inadequate Care

Did you know that roughly 8 million Canadians don’t have access to the proper medications that they require? This isn’t common knowledge but it’s a fact reported by Health Canada and various other organizations.
Eric Mariglia, a fourth-year Brock student advocating for change, states that people aren’t aware of this partially because the average Canadian doesn’t know about the existence of patients of rare diseases, and there’s thousands out there, according to the Canadian Organization for Rare Disorders (CORD).
Mariglia began to learn about issues with rare disease patients within the Canadian healthcare system back in 2015 when he interned for the Globe Public Relations firm, Cohn & Wolfe.
“Canada is the only country with universal healthcare that doesn’t have a central pharmaceutical system or ‘orphan drug plan’,” said Mariglia.
Canada handles their pharmaceutical drugs by province, which creates policies and procedures that differ across the country. Canada also lacks an orphan drug plan, a program that would improve medication and treatment access for rare disease patients.
“This simply isn’t right,” said Mariglia. “All Canadians should have equal access to the medications and treatments they need.”
“At the beginning of last semester, I began talking to Brock students about this issue. The fact was that students were shocked, unaware and horrified that there were people with rare diseases struggling all over Canada because they weren’t getting access to medication,” said Mariglia.
That’s when Mariglia decided that something had to be done and set out on a mission to advocate for the rights of patients with rare diseases. He reached out to long-time advocates CORD to start a campaign.
Unbeknownst to most Canadians, the government is currently creating a draft for a pharmaceutical plan that intents to roll out a centralized pharmaceutical system across Canada. This will allow for the country to basically purchase medications in bulk for the whole country, rather than having it be provincially dependent, ultimately decreasing the cost of medications, while becoming more accessible across the country. Currently in the works, the plan is referred to as Pharmacare 2020, because if the government does choose to move it forward it’ll take until at least the year 2020 for the services to be fully operational across Canada.
Pharmacare 2020 was created because Health Canada reported that one fourth of Canadians, roughly eight million people, do not have the proper access to medications because of the provincial rules in Canada that govern pharmaceutical drugs. Although Pharmacare 2020 on its own may sound like an extremely beneficial objective to Canadians, Mariglia emphasizes that even with the change, there would still be 2.8 million Canadians with rare diseases not receiving their medication.
“Yes, we need a centralized system, but we also need the Orphan Drug Plan,” said Mariglia, describing the Orphan Drug Plan as an act that would fund medically approved orphan medications for five years, but also enable data to be compiled regarding the drug itself. “You see, [the healthcare system] doesn’t know if a certain drug works for rare diseases, but the thing is that if they never give out the medication to the patients that need it, they will never have the data to know the drug is life changing for these patients.”
“Even after medication is market approved, the government still needs scientific evidence built behind a particular drug to prove the medication will work and is worth purchasing,” explained Mariglia. “This is problematic because the population with rare diseases per disorder is so small. There may only be 100-150 patients in the country who have a certain disease.  Before a government funds a drug they want proof it will work even though the drug has been approved. They want to wait for the research.”
“However, rare disease patients need access to the drug immediately. Once access is given, evidence can be recorded. The problem is that these groups are not receiving the access to the medication, which is creating problems, which can lead to possible death of the patients,” said Mariglia.
The Orphan Drug Plan was produced by the Canadian Organization for Rare Disorders (CORD) and Health Canada, and has been awaiting review in Parliament since 2014.
Mariglia realized that a smart idea would be to include the Orphan Drug Plan in ties with the Pharmacare 2020 act because, as he believes, they are equally as important to Canadian people.
“I came to think that if we could do a big event where the youth of Canada are behind it, then maybe we can attract the much needed attention that this cause deserves,” said Mariglia.
“The whole objective behind this campaign is that it is an injustice to deny Canadians the medication they need in order to live or maintain a quality of life,” said Mariglia, stating that himself, a number of students and various organizations have been helping him plan a media conference in order to shine light on the cause.
“The event is probably going to be called ‘Brock stands up for rare disease’,” stated Mariglia. “It’s been great to have the support of so many people. I reached out to our President, Tom Traves, and he is in full support of the event. One of my professors, Baxter Moore, has even been helping me with formatting and outreach for the event.”
Additionally, Mariglia has stated that the event has gained attention from organizations such as the Royal Bank of Canada (RBC) who have offered to assist with funding.
“RBC has this funding challenge, where they give youth money and ask them to do something special in order to make a difference within the community,” said Mariglia. “Their tagline is ‘What’s your someday?’ Well, my ‘someday’ is the day when a child with a rare disease is born and they won’t ever have to worry about their medication being covered.”
The event, which will take place at the end of this month, is being organized by various organizations and student advocates such as Brock Young Liberals, Brock Advocacy, BrockTV, Brock’s Social Justice Committee and many others, according to Mariglia.
“There are currently 25 students that are an active part of this project,” stated Mariglia, happy with the knowledge that others are becoming passionate towards this very cause.
John Oliver, Oakville’s Member of Parliament, will be present at the event as a member of the panel discussion because of his extensive experience in healthcare as well as being one of the members of Trudeau’s Health Committee.
Additionally, the media conference will feature speeches from CORD members and have Q&A periods for the panelists.
“Rare disease advocacy needs a stronger voice,” said Mariglia. “I realized after talking with Brock students that if this issue was important to Brock youth, then it is important to all Canadians.”
The media conference, which will welcome members of parliament, CORD members, rare disease patients, media sources and many other significant guests, will take place on Friday January 27 from 3:00 to 4:00 p.m. in Guernsey Market Hall.
 
If you are interested in attending the event, or would simply like to learn more about this cause, please contact Eric Mariglia by email at [email protected]
 
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