A group of Brock students believe that it’s time to take the price tag off of people’s lives.
Earlier this semester, The Brock Press wrote an article acknowledging a Brock student who is advocating for the rights of Canadian patients with rare diseases. This student put together a group of passionate and hardworking students to organize and host a panel discussion surrounding the future of drug coverage in Canada.
The panel discussion took place on January 27 in Guernsey Market. It welcomed nearly a hundred guests, patient groups from across the province, and key speakers: John Oliver, an Oakville Member of Parliment and member of Trudeau’s Health Committee, Durhane Wong-Rieger, the president and CEO of Canadian Organization for Rare Disorders (CORD), as well as Riyad Elbard, the treasurer of CORD and a rare disease patient himself.
“Since I started this project, my group and I have learned a lot about rare diseases,” said Eric Mariglia. “The thing is that getting access to medications is just one of the many problems, but it’s important to begin somewhere, and this is a starting point about creating awareness for this cause.”
After his introductory speech, Mariglia welcomed the key speakers to the stage.
“We are so glad that young people are getting involved in the dialogue and trying to help,” said Wong-Rieger. “We have seen so much gratitude from various groups of people, but what we really need to see is good intentions and responses turn into actions, as we haven’t seen enough action being done yet.”
Wong-Rieger spoke about the fact that Canada is the only developed country that is yet to have an Orphan Drug Plan, which is a plan that would support the access and coverage of rare disease drugs.
“We do have one of the best healthcare systems in the world and we do have reasonable access to medications,” she said. “But we need to adopt the Orphan Drug Plan because every patient deserves the same chance to have access to medication.”
Elbard, who lives with a rare blood disorder, described the challenges that patients with rare diseases face on a day to day basis. “Patients with rare diseases have to worry about whether or not their medication will continue to be offered, they have to worry about whether or not a province will offer treatment if they choose to move, and of course, they have to worry about the costs,” said Elbard. “It’s hard to visit countries such as England and see that medication is more easily accessible to rare disease patients there.”
In Canada, there are roughly 2.8 million Canadians that don’t receive, can’t pay for or simply don’t have access to the medication they need because of the flaws in Canada’s current drug coverage system. Wong-Rieger stated that most Canadians aren’t aware that there are roughly six to seven thousand different types of rare diseases, and while there may only be two or three people per disease, the numbers add up.
“I firmly believe in equality for all Canadians and realizing that one sector of our society has been being ignored has made me passionate about this cause,” said Fiona Purkiss, a third-year Sociology student and the organizational director of the Orphan Drug Act panel discussion.
Along with discussing and advocating for the adoption of the Orphan Drug Plan, Oliver addressed what the federal government is currently doing for the future of drug coverage in Canada.
“As a part of the health standing committee, we’re currently focusing on the national pharmacare program,” said Oliver. “This new plan would embrace rare diseases, it would embrace a lot of other different things too.”
Oliver stated that “in 2016, we’ve already seen savings of about $712 million on 95 brand medications, so we can lower the cost of drugs, and the government is working hard on that agenda.”
As to whether either plan will make progress in parliament, separately or together, Oliver maintains a hopeful outlook. He wants to help lower the costs of prescription drugs as well as create a national system where patients, including those with rare diseases, will receive the treatment they require.
The Brock students that were involved in this project are Eric Mariglia, Fiona Purkiss, Aimy Thai, Tom Lillo, Matt Campbell, Kedar Patel, Emma DiNatale, Devon Ainslie, Omar Manasreh, Allie Moore and Bryanna Middleton.