Nicklas Harkins couldn't help but feel a little nervous when it was his turn to speak.
He had been asked to give a presentation at a panel discussion, entitled A Rare Disease Strategy for All Canadians, organized by representatives of the Canadian Organization for Rare Disorders and the Economic Club of Canada, held at Vancouver's Fairmont Pacific Rim Jan. 19, and the room was full of well-known and accomplished advocates and doctors. "I tried to take away the pressure and just relax and I think it went pretty well. I was a little embarrassed in the beginning because someone's phone rang, but I think that lightened the mood," he laughs.
The event was timed with the recent meeting of Canada's health ministers held in the city Jan. 20-21 and called for the implementation of Canada's Rare Disease Strategy. Approximately 2.8 million Canadians have a rare disease and face many barriers in their journey to find an accurate diagnosis, specialist and treatment, according to CORD and the Economic Club. Launched last May in Ottawa, the strategy is intended to ensure those with rare diseases are provided with the same access to and quality of health care as those facing more common issues like cancer, diabetes and heart disease.
Giving his address marked a big moment for the 20-year-old North Vancouver native who was diagnosed with MPS 1, a rare genetic disease, at age five. His parents have been involved in rare disease advocacy ever since, for example, calling for access to better treatment, and his mother Kirsten served in a variety of capacities with CORD and the Canadian MPS Society. The family also presented the MPS Cup Fantasy Hockey Game and Gala for 12 years, bringing together NHLers and community members alike, raising close to $1 million for the society.
The Jan. 19 event marked the first time Nicklas took a stand on his own. "Ten years ago, my parents and I, along with many other families, rallied at a similar health ministers meeting so that all Canadian patients with MPS I could access the same life-altering treatment I was receiving. We knew treatment would make the difference between progressive loss of mobility, hearing, and sight and a normal life. We were all thrilled when the health ministers agreed not only to fund the therapy, but also to bring in a national rare disease drug plan.
"Today, I am happy to be proof that the drug works, but I am also sad that rare disease patients are still standing in picket lines and appealing for life-saving treatment on a case-by-case basis. I urge the health ministers to honour their promise made in 2005 and provide other Canadians with rare diseases the same chance for life," said Nicklas in his presentation as quoted by CORD and the Economic Club in a post-event press release.
Nicklas currently attends the University of Northern British Columbia, studying English and communications, and is working for the WHL Prince George Cougars. His family is likewise living in Prince George at present, splitting their time between their home in Deep Cove and the northern city as his father, Todd, a former NHLer, is currently serving as general manager of the Cougars.
"I really didn't want to focus much on the disability, I just wanted to focus on what I have achieved throughout my life, even though I've had challenges, and about how the medicine has helped a lot with everything I've done. If I didn't take the medicine who knows what my life would be like right now. I might be in a wheelchair or not be able to speak or I don't know what," says Nicklas.
Kirsten loved watching her son give his address. "We were obviously very proud of him for stepping out of his comfort zone and sharing his story," she says.
Nicklas plans to continue raising awareness of the impact of rare diseases on both individuals and families. "I want to be a role model type and I just want to show people that you can do what you want to do. Even if your life isn't perfect right now, you can always work hard to make sure you fulfill what you want," he says.
