New Patient-Driven Arthritis Charter in Canada

To mark Arthritis Awareness Month, the Canadian Arthritis Patient Alliance (CAPA) has released the Arthritis Charter, created by people who live with arthritis for people who live with arthritis. What is the Charter? Dawn Richards, Vice-Chair of CAPA, graciously agreed to answer some of my questions

What is the Canadian Arthritis Patient Alliance and what does it do?

CAPA, as we call ourselves, is a not-for-profit, patient-driven organization that strives to represent Canadians living with arthritis. It’s been around since 2001. We advocate for all things arthritis, to educate and raise awareness, and for access to treatments (drugs and otherwise), often through partnerships. For example, we have recently submitted patient input to the Common Drug Review, which is part of getting a drug approved for provincial formularies. We represent the patient perspective about why it’s important to have new options to treat arthritis, and that even though some of these treatments are very expensive, in the long run, allowing people access to these medications is a good thing. Having a person who is able to have a job, contribute to their family, take part in social activities, etc., costs society and our healthcare system far less overall than what the actual pharmaceutical treatment costs.

What is the Arthritis Charter?

The Charter is a bill of rights and responsibilities that helps people with arthritis understand the kind of care they should expect to receive from their healthcare providers, as well as remind them that they are active partners in their care. I see this as reminding us patients of the important role we play in our care.

How and why was the Charter developed?

A Canadian Arthritis Patient Bill of Rights was drafted in 2001, led by the Arthritis Society, and with input from many arthritis stakeholders. Since 2001 so much has changed! Biologics have changed the landscape of care, inflammatory arthritis is being aggressively treated before joint damage, our population has aged and the healthcare system is close to maxed out.  As well, our society has decreased its attention span - we’re bombarded with messages from different media. Maybe most importantly, we’ve seen a ‘new’ kind of patient emerge - one who’s no longer so patient. We’re much more educated about our illness, and eager to be part of our care.

We saw all of these things as an opportunity to update the Bill of Rights, now called the Charter, and to remind people that they need to play an active role in managing their disease. We’ve created long and short versions of the Charter – one that gets to the point for those of us with really short attention spans (!) and a longer one with more detail.

It’s also an opportunity to remind people that even though we often don’t have control of arthritis, there are some things we can do to feel a bit of control over our lives with it. That may sound like an oversimplification, but I know that I have zero control over my disease, except taking my medication how it’s prescribed, asking my healthcare team questions, and being smart about how I approach my life with arthritis (e.g., when I need a nap, I take it, and when I travel, I figure out how my meds are getting there with me). That’s what I mean about control.

What are the important things CAPA learned through developing the Charter?

The Canadian arthritis stakeholder landscape has a lot of players – patient organizations, a charity that represents people with arthritis, physician and healthcare provider organizations, and an umbrella group, and yes, pharma is a part of that group, too. It was important to get buy-in from all of these organizations. We were also able to leverage these organizations’ outreach capabilities, and even people like you who generously tweeted about our survey to gain feedback and input about our Charter’s first draft. 

There is a strong arthritis community in Canada, and we were wonderfully reminded of this each time we asked for help for support of any kind. Without our stakeholders’ support, we would not have been able to achieve the creation of this Charter.

Was there a particular moment that stood out or was meaningful for you personally?

I was project manager on the Charter since we started on it back in January. At times this felt like ‘the project that would never end,’ but I’m just so pleased with what we’ve been able to achieve with really minimal resources. I think it was the day when I was stuffing envelopes, poster tubes, and sticking address labels on things that I felt what we’ve actually achieved. I hope it’s in my rheumatologist’s office, because if it’s not, he will be asked about it! We’ve developed something that is important, useful, and has input and support from the community. It’s still not going to end, either, because we’d like to see the Charter in places like pharmacies and physio/occupational therapy offices. So I see that as phase 2.

Please tell The Seated View readers about the upcoming Arthritis Alliance of Canada conference in Toronto.

The Arthritis Alliance of Canada is the ‘umbrella’ organization for all arthritis organizations in Canada, raising awareness about arthritis and its burden. It’s a pro-active organization that brings groups together to share best practices across the country. It represents a united front for arthritis, especially when it comes to talking to government and helping policy-makers and decision-makers understand the burden of arthritis on Canadians.

The 2^nd annual conference is held in Toronto October 30-November 1, 2014 and it’s a free event. This year, it’s held in conjunction with the Gairdner Awards. For non-science people, these awards can be seen as a prelude to Nobel prizes - many Gairdner winners have gone on to receive Nobel prize recognition for their work. This year’s winners were instrumental in developing the first biologics used to treat people with inflammatory arthritis. They’ll speak at the Alliance conference. You can find more information on the conference here (PDF) and you can register on the Arthritis Alliance website. The audience will include researchers, patients, clinicians, pharma, and all stakeholders. Hopefully some of you will join us! 

Thanks for taking the time to tell everyone about the Charter, Dawn. It's a wonderful thing. I'll be at the conference at least one day - looking forward to it!