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I’m Aware That I’m Rare: Darren Bell

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Darren Bell is a former  President and Chair of the Board of Directors. One of PHA Canada’s founding board members, Darren joined the PH community when his son Dylan was diagnosed with IPAH in 1998. Dylan lost his battle with PAH in 2007 at the age of 12, two years after his younger brother Hunter passed away from an acute intestinal illness at the age of 7.

My name is Darren Bell. I am a founding board member of PHA Canada. I have been involved with the organization since its inception in 2008. I first came into the pulmonary hypertension arena via my son being diagnosed. Dylan was three years old, diagnosed in 1998, ended up going to see Dr. Robyn Barst in New York. He was diagnosed and subsequently put on IV prostacyclin — Flolan.

We went to many US conferences, which were great. I think we attended six conferences and really saw the sense of community and also identified that that community, or that need for community, existed in Canada and was not currently something that the landscape had. There were support groups across Canada, there were associations or charities set up provincially within a couple provinces. But we as a collective group of people from across Canada that were either caregiver, supporters or patients, decided that we should come together and form a national organization that was really focused on the patient side of things, rather than, at that time, research. We believe that connecting the patients [along] with the research component, obviously, providing support, and advocating for patients was going to be our primary objective moving forward, and thus PHA Canada was formed.

I’ve been proud to be a member of the board ever since, and it’s great to see how the organization has grown, the size of the conferences we hold has grown. Not that I want to see it grow, obviously, for the patient-members, but it’s great to see that more people are aware that they can connect, and they’re not alone as they face this disease.

Dylan, as I mentioned, was diagnosed at the age of three in 1998. His younger brother, who did not have pulmonary hypertension, actually passed away from an unrelated illness, an acute illness, at the age of seven. Dylan was nine at the time. So, that was a bit of left field curve ball. We weren’t expecting that. We were really focused on Dylan’s health, then Hunter passed away. Dylan subsequently, I think on the loss of his brother, it affected his health, and he passed away two years later in 2007.

I got involved with my father in terms of advocating in Canada for a rare disease strategy, not just specifically to pulmonary hypertension, but more to be a country that had … we were behind on the G7, and all the other countries in the world. The G7 countries had a rare disease strategy, and Canada did not, and so we started focusing energies there.

What kept me motivated was just my commitment to two beautiful lives that I felt that the least I could do, to keep their memory alive, was to keep fighting for them. But also, as you go down this path and this journey, I’ve met so many people that have had an impact on me and have influence on me. Some have passed away. Some are here part of this community now. Actually a lot of them are, due to the advances in the field and the therapies. It’s great to see many of my friends still. So, what motivates me every day to continue volunteering my time is this sense of my community. Once you’re part of that community, you can’t just walk away, so it’s a pleasure to still be part of it. Even though my connection is 10 years or 11 years ago, I’ll do it continuously until I can no longer.

CORD, Canadian Organization for Rare Disorders, they help support my father’s motion back in 2008. Because of the change in governments, that got shelved for a few years. It really began in the 2013, ’14, ’15 era to gain more momentum again. More recently, a framework was advanced, similar to what was proposed back in 2008 by my father in his private member’s motion and CORD’s, obviously, guidelines. It is now being put into place and is in place for the most part, so there is a national approach to rare diseases. It’s not complete yet, so it’s a ways to go, but at least the government, the powers that be, as well as the population, has accepted that this is where we’re moving, so it’s great to see it.

It not only helps in terms of when we’re advocating on behalf of PH patients, it just really helps with anybody that’s facing a rare disease. As one in 10 people, on average, you come across … I think the stat was one out of every 10 people knows somebody or is affected by a rare disease, and so, collectively, there’s a lot of rare disease, so, it’s important to continue that vein. But on the Canadian landscape, it has evolved more recently in the last two years, so I’m very pleased to say. It’s taken a long time, but Rome wasn’t built in a day.

I’d say in the last decade we’ve grown as an organization. I see a dedicated staff that’s really engaged, starting, obviously, with [former PHA Canada executive director] Angie Knott back in the early years, now with Jamie Myrah as our executive director. We have a great staff. Nobody views this as a job. They view it as their connection to a community, and so it’s nice to see as a board member that connection.

I think from a milestone point of view, I believe knowing that we can make a difference and by making people aware of the disease, giving the decision-makers an awareness, it has helped in Ontario, where they were pushing back against combination therapy, back in 2009, 2010. We were able to successfully lobby the government to not go down that path with that strong voice. A unified voice. Some of those concerns where people who will not get optimal access to treatment has now — will always be a concern. It’s hard for certain governing bodies to go back on that now, and so patients do have optimal or great access to many therapies. They’re funded, for the most part. So, as new therapies come on to the Canadian landscape or the global landscape, I’m confident that we’ll be able to have our Canadian population have access to those, and so that motivates me.

Going forward, there’s still lots of work to do. I get motivated by seeing at these conferences, regional or national conferences, the connections people make and the coming together and that’s puts a smile on my face. Whether it’s PHA Canada, phaware, PHA US, we’re all fighting for the same thing, and it’s to increase awareness. To let people know that we exist.

My name is Darren Bell, and I’m aware that I’m rare.

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Originally published: April 19, 2019
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