New Methotrexate Resource Announced at CADTH Symposium

CAPA President, Linda Wilhelm, attended the annual CADTH Symposium in Halifax, Nova Scotia, from April 16-17. She presented on a panel discussion where she discussed the new CAPA resource on Methotrexate. The resource contains tips and advice to help you take this medication and has been medically reviewed by healthcare professionals. The resource built upon the feedback from a survey conducted last year where we asked you and other people living with arthritis about their own experiences taking Methotrexate. We have also been accepted to present a poster on the resource at the European League Against Rheumatism (EULAR) meeting in June 2018.  Don`t forget to read Linda’s meeting report of the CADTH symposium, which is available on the CAPA website.

 

Advocating for Canakinumab 
In our last newsletter, we told you about the petition and other advocacy efforts of Cassie and Friends. They have now successfully advocated the B.C. government to reimburse Canakinumab for the treatment of Systemic Juvenile Idiopathic Arthritis (SJIA). Learn more and read an update on this campaign!

ICU Warriors

Did you know that 25 percent of people who have a serious or life-threatening illness develop posttraumatic stress syndrome (PTSD)? A group of former ICU patients have created a Facebook community to support patients. Learn why this group is needed and how to connect with the community in this article by Lene Anderson.
What have we been up to ?

Updated Biosimilars Position Paper – CAPA continues to contribute to the important dialogue regarding the use of biosimilars in the treatment of inflammatory arthritis. To reflect new data on the use of biosimilars, we have updated our position paper accordingly. The position paper outlines that treatment decisions need to be discussed and agreed upon by the patient and physician. It also outlines that if policies are adopted which support a preference for biosimilars, educational information and supports to help patients with medication changes must be made available in terms that patients can understand and that meet their needs.

Workplace Survey – Thank you for contributing your perspective on our survey on arthritis in the workplace. We have received almost 400 responses and have been accepted to present a poster on the survey results at the European League Against Rheumatism (EULAR) meeting in June 2018. We will keep you posted on this important project as well as the survey results.

Why Patients Pay Taxes on Medical Marijuana – CAPA Board Member, Carole Reece, is quoted in an article on Healthy Debate regarding the difficulties in getting insurance coverage as well as tax proposed for medical cannabis. Carole noted that the excise tax will be an additional, unfair barrier, given that other drugs aren’t taxed and “We should be treated fairly and as equitably as other patients who access other health products”. Read CAPA’s position paper on medical cannabis and see what patients are saying about this important issue!

CAPA Submission for the Health Sector Payment Transparency Act – The Ontario government introduced legislation in 2017 regarding the public disclosure of payments made by the pharmaceutical industry to health care professionals and non-profit organizations. CAPA provided our feedback on the proposed regulations and our submission can be found on our website. CAPA discloses our sources of funding on our website and believes it is important to transparently report funding received from industry and other supporters.

CADTH Patient Input Submissions – CAPA provides input to the review of drugs by publicly funded drug plans, such as CADTH. Read our most recent submission (completed jointly with The Arthritis Society) for Ixekizumab, a new medication used to treat Psoriatic Arthritis. We are also providing input into a new pain medication – Nucynta  – which is currently under review by CADTH. We will post this submission on our website once it’s complete.

Get Involved!

CAPA Annual General Meeting – We are holding our annual general meeting for the 2017 fiscal year and you’re invited! The meeting will be held by conference call on May 9th at 6 p.m. EST. If you are interested in attending, please join in by calling 1-646-558-8656, Meeting ID: 666 431 650.

2018 Strategic Plan – Want to know what we`ve been up to and what our plans are for 2018? Look no further than our strategic plan which is now posted on our website. If you have any ideas or want to get involved, please contact us and join our efforts!

Stay Informed!

Pain B.C. Resources Pain B.C. is a collaborative non-profit organization made up of people in pain, health care providers, and leaders from universities, government, business and the non-profit sector. To support people in pain, they have a number of resources ranging from music therapy, tips for talking with health care providers and how to manage flare-ups. Take a look the resources available on their website to help manage your pain! 

Green Shield Biosimilars Transition Policy – We have recently become aware of changes to the Green Shield Canada approach to the reimbursement of biologics. Plan members currently taking Remicade or Enbrel for Rheumatoid Arthritis, Ankylosing Spondylitis or Psoriatic Arthritis will be sent a letter explaining the program, the evidence for transitioning, and next steps. A transition to a biosimilar will be discussed with your doctor and if you wish to continue taking the originator drug then you will be responsible for paying the difference in cost between the two products. Learn more about this new policy on the company`s website.

The Old Lady in My Bones –  J.G. Chayko is a Canadian writer and blogger who lives with Rheumatoid Arthritis. Her blog `The Old Lady in My Bones` chronicles her experiences with the disease. Read her blog post on the Changing View of Arthritis where she writes about the invisibility of living with rheumatoid arthritis and how she doesn`t “look sick”.

Clinical Trials Ontario (CTO) – CAPA is making our first steps to getting further involved in CTO and some of our members took part in the live streaming of patient engagement focused sessions at their annual conference. Learn about finding and joining clinical trials and different models of patient engagement in clinical trials by viewing the panel discussion sessions from their annual conference.

Website, Facebook, Twitter & YouTube – Our website, Facebook pageTwitter account and YouTube channel are updated regularly with new information. Don’t forget to follow us on Facebook, Twitter and YouTube to keep up to date on the latest arthritis and advocacy information!