By: Linda Wilhelm
For some of us in the east, this past winter was relentless and seemed to be never ending. The coming of spring is being welcomed like a long lost friend. Those living in western Canada were wondering where winter had gone. Weather woes aside, CAPA was busy during the first few months of 2015 advocating and creating awareness on behalf of those living with arthritis from coast to coast.
In January, I sat down with New Brunswick’s new Minister of Health, Victor Boudreau. There has been much change in both the arthritis and political world since our first meeting over 10 years ago when Minister Boudreau was opposition health critic and I was a new, inexperienced patient advocate. NB now has most, if not all biologics approved by Health Canada listed on the public drug formulary. We have a new tele-medicine program designed to reach remote areas of the province and finally, a provincial prescription drug program that is accessible to all residents. However, there are still people who are not able to access the treatments they need. The province does not know what it spends on arthritis and likely will never capture that information until arthritis receives official chronic disease designation. I informed the Minister that, in the fall of 2014, Nova Scotia formed an Inflammatory Arthritis Working Group and it is my hope that NB follows their path or at the very least, review the findings of the group closely when it reports this spring.
In February, I attended the Canadian Rheumatology Association’s annual meeting in Quebec City. One representative from each of the following consumer/patient organizations also attended: Arthritis Consumer Experts, the Canadian Spondylitis Association and The Arthritis Research Center of Canada Arthritis Patient Advisory Board. All the patient/consumer groups participated in interviewing presenters at the meeting. Our first one was Dr. Robert Ferrari on The Canadian Medical Associations Choosing Wisely campaign. Interviews can be found on our website and Facebook Page. We were also very pleased to be presenting a poster on the Arthritis Patient Charter at this meeting.
Quebec is the first, but certainly won’t be the last to list the first subsequent entry biologic (SEB), Inflectra, for inflammatory arthritis. CAPA, together with many other organizations including The Arthritis Society, had concerns regarding the listing criteria, the most important being automatic therapeutic substitution for those patients currently on Remicade. We are happy to report that the Quebec government changed their decision and confirmed that patients currently taking Remicade will be able to stay on it.
However, we must continue to advocate on this important issue. Health Canada has clearly stated that SEB’s are not interchangeable with the brand name drug. They are similar but not identical. CAPA wrote a letter to Quebec Minister of Health outlining our concerns. A similar letter has been sent by CAPA Board members to governments in Atlantic Canada, British Columbia and Ontario. You can find more information on SEB’s, including our position paper, on our website.
CAPA continues to provide input into new drugs being reviewed by provinces who have a process for patient submissions, most notably Quebec, British Columbia and Ontario. A copy of our submissions can be found on our website.
In March, CAPA Board member Don Mohoruk accompanied representatives from The Better Pharmacare Coalition to a meeting with Barbara Walman, Assistant Deputy Minister and Eric Lun, Executive Director, Drug Intelligence and Optimization Branch. The meeting began with an overview from The Ministry on how well BC is doing in health outcomes and encouraging a healthy population compared to other jurisdictions. The presentation also highlighted the costs of health care and pharmacare, highlighting recent efforts to control the amount spent on prescription drugs. Arthritis Consumer Experts gave a presentation on patients concerns about subsequent entry biologics (SEB’s). Don presented the government officials with a copy of a letter CAPA sent outlining our concerns with SEB’s, as well as a one page document describing our organization. Additional concerns around BC Pharmacare were discussed and hopefully this meeting leads to improved dialogue and the inclusion of patient concerns going forward.
Show us Your Hands!
By: Board of Directors of Show Us Your Hands!
Show Us Your Hands! is an international non-profit awareness organization for inflammatory arthritis. We are dedicated to showing the world the strength, beauty, and capability of people who live with inflammatory arthritis. Our goal is to contribute in a positive way, to build connections in the community, and to help those who live with these diseases to focus on all the joy there is in life.
We believe that inflammatory hands are beautiful and capable and that we can show our hands with pride. Through our awareness projects, we aim to reduce the stigma of inflammatory arthritis by showing the beauty and capability of our hands. They symbolize how our bodies continue to serve us, even with the serious physical challenges presented by autoimmune arthritis. By showing our hands with pride, we reclaim our bodies, our self-esteem, and find the way to joy.
We achieve our mission through the Show Us Your Hands! creative awareness projects, which use images of hands donated by individuals living with inflammatory arthritis to tell the story of the strength and unity of the community. We chose to use hands as our symbol because some people with inflammatory arthritis hide their hands if they show damage from the disease. We want to change this, to show our inflammatory arthritis hands as a symbol of strength.
Our projects include the Community Collage, containing more than 1000 photos of hands from all over the world. Our monthly Picture Project selects a theme and members of the community submit photos of their hands performing acts related to the theme. We are grateful to receive donations to use as prizes in this monthly project. These have included arthritis-related books by leading authors, cutting edge design for people with arthritis such as this beautiful set of cutlery, and more.
Our Hands Can is a new initiative exploring storytelling in connection to photographs of active hands doing what we are passionate about. Combining high quality images with engaging stories of what our hands enable us to do, Our Hands Can celebrates the lives we lead.
Show Us Your Hands! is run by a volunteer Board of Directors, all of whom live with inflammatory arthritis. The Board is supported by members of our Advisory Council, also volunteers, who provide feedback on upcoming awareness projects, as well as serve as judges in the Picture Project. We are a truly international organisation; we have Directors in Canada, the US and the UK. Our monthly prizes have gone to people in several different countries, even the Maldives!
To learn more about Show Us Your Hands!, visit our website at http://suyh.org/. You can reach us via email at firstname.lastname@example.org. We hope to see your hands joining our awareness projects!
We believe that together, the inflammatory community can create a world filled with hope and understanding.
The History of the Arthritis Health Professions Association
By: Jennifer Burt, BScPT
AHPA Past President
St. John’s, Newfoundland and Labrador
Attempts to start a professional body of allied health professionals working in rheumatology in Ontario began in the 1970’s. Planning began in earnest in the early 1980s and was supported by The Arthritis Society (TAS), Ontario Division. In her capacity as Director of Allied Health Education, Carolyn Thomas worked with a core group of dedicated allied health professionals from the Toronto area to establish the association known then as the Arthritis Health Professions Association of Ontario (AHPA, Ontario). Carolyn was instrumental in translating the vision into a reality; when she retired from TAS, AHPA granted her an honorary lifetime membership and established the Carolyn Thomas Award to acknowledge her support of scientific research.
In 2000, due to growing interest from across Canada, our name dropped the reference to Ontario; with that, the Association’s mandate expanded to take a national perspective that welcomed members from across Canada.
The mission of the AHPA is to:
- Stimulate interest in rheumatology among health professionals.
- Promote research and education in the field of rheumatology.
- Encourage interprofessional communication.
- Act as a resource body for those with an interest in rheumatology.
- Promote public awareness of the needs of people with arthritis.
AHPA members started attending the CRA Annual Scientific Meeting (ASM) in 2005. In 2008, Marlene Thompson, then President of the AHPA, collaborated with the CRA with the aim of allowing the AHPA to sponsor workshops providing educational opportunities specific to allied health professionals during the CRA ASM. The successful one-day AHPA pre-course started in 2009 and continues to grow annually.
Photo: The AHPA Board of Directors in Quebec City in 2015: (left to right) Nancy Ellis, Jennifer Boyle (IT), Jennifer Burt, Rashmi Mandhane, Karine Toupin-April (outgoing); Andrea Weagle, Angelo Papachristos, Sameer Chunara, Karen Gordon (outgoing), Leslie Soever (President). Missing from photo: Raquel Sweezie, Julia Farquharson, Mandy McGlynn.
In September 2013, the AHPA officially incorporated. Membership is still expanding, and we now boast over 140 members from coast to coast. AHPA continues to collaborate with the CRA by participating on their Scientific Committee to plan the annual conference and scientific meeting, which AHPA members attend yearly.
The AHPA is a society of health professionals who work in the field of rheumatology. Our members come from a variety of clinical and administrative settings such as hospitals, clinics, community programs, and universities. We are dedicated to improving healthcare standards for people with rheumatic disease through the promotion of education and support of research among our members.