Winter Newsletter – January 2016

01-01-2016
Make your Voice Heard. Talk to your MP. 
With a new federal government elected, this is a perfect time to introduce yourself to your newly elected Member of Parliament (MP). You can make them aware of arthritis and the burden it creates for people who live with it, their families and caregivers, and the healthcare system.  We have developed a letter template and talking points to assist you in having a discussion with your MP. CAPA’s Steering Committee members have all been in touch with their own elected officials and we encourage you to do the same – anyone can be an advocate!

 

President’s Message
I want to wish all CAPA members and colleagues a very happy and healthy new year and all the best for 2016! The CAPA Board had a very busy fall with our annual in-person meeting held in conjunction with The Arthritis Alliance of Canada meetings in spectacular Kananaskis, Alberta in late October…

CAPA at the AAC Annual Conference

CAPA continues to be a proud supporter of the work of the Arthritis Alliance of Canada (AAC). We have been a member since its inception in 2002 and the CAPA Board of Directors attended the annual conference in late October 2015…

 

CAPA President, Linda Wilhelm, shown at the AAC conference poster session with the poster presentation entitled “CAPA: Patient Pioneers in Arthritis Advocacy”.

Manulife’s DrugWatchTM Program – will it affect you?

As you may know, Manulife has a new program called DrugWatch. This program is in response to the cost of some new medications, and represents a change in how Manulife will put some drugs on its formulary. To better understand the program and whether or not it will affect you, we have written an article about what we learned of the Program and how it may affect you.

Pharmacists – another partner in your healthcare

CAPA began to do some work in the area of pharmacy in the latter part of 2015. Thank you to all of you who participated in our survey about how you feel about your pharmacist. The results were shared at the Canadian Foundation for Pharmacy meeting in Toronto in November 2015, and we will share the results with you soon. Our plan is to develop some initiatives based on these findings. Our Vice President, Dawn Richards, was also interviewed about how pharmacists can be better advocates – see the video here.
So what exactly are product monographs anyway?
Have you ever wondered about the leaflet included with your injectable medications? This leaflet is called a product monograph and it provides important information on the use of your medication. CAPA Board Member, Laurie Proulx, has worked with Health Canada to educate drug reviewers about how patients use various Health Canada resources, such as product monographs. More recently, she was part of a panel at a Drug Information Association (DIA) meeting held in Ottawa in late October. Read her presentation on the CAPA website.

Get Involved!

Last chance to take the Pregnancy & Parenting Survey – As noted in our September newsletter, CAPA has launched a survey to identify patient information needs as they relate to pregnancy and parenting. The survey is intended for individuals living with arthritis and for people in their social support network. The information obtained through this survey will be analyzed and used to develop an educational resource for pregnancy and parenting with arthritis. Share your perspective by taking the survey which closes on January 15, 2016.

Send us your input about living with or caring for a child with JIA – The Canadian Agency for Drugs in Technology in Health is reviewing Ilaris (Canakinumab) for Systemic Juvenile Arthritis (SJIA). If you are a parent of a child living with this devastating disease, we would like to hear your thoughts on the impact of the disease on your family, treatment options for your child and any experiences in taking Ilaris (Canakinumab). Please e-mail your input to Laurie Proulx at laurie.proulx@arthritispatient.ca by January 15, 2016.

What have we been up to?

Twitter @CAPA_Arthritis – We have created a Twitter account to complement our communications with you. Follow us on Twitter to access interesting resources and news. We post something new every day!

CAPA Board Members interviewed for The Silent Fight –Veronica Pocek developed a website which provides an in-depth look into arthritis and the burden on patients, people in their network of support and the healthcare system. CAPA Board Members were asked what are the misconceptions about the disease and what are the unique concerns that impact women. Here are their answers…

Mamas Facing Forward blog post – CAPA Board Member, Laurie Proulx, wrote about her personal journey in becoming a mother while living with Juvenile Idiopathic Arthritis in Mariah Leach’s blog From this Point Forward. Read more about Laurie’s experience here…

Drug review submissions – We have continued to provide input to the review of drugs by publicly funded drug plans. Read CAPA’s submission to the Ontario Drug Benefit Plan for Apremilast (Otezla) in the treatment of Psoriatic Arthritis.

Stay Informed!

Health Storylines App – Ever wondered if there was a health app that is tailored to people living with Ankylosing Spondylitis (AS)? Now there is with AS Health Storylines which is now available in the Apple Store and Google Play.  Read moreabout it on the Canadian Spondylitis Association (CSA) website.Modern Motherhood: Unique experiences of physically disabled women – CAPA has collaborated with many researchers in carrying out their research including Lesley Tarassof. Read her article about Modern Motherhood and the experiences of physically disabled women.

Website, Facebook & Twitter- Our website, Facebook page & Twitter account are being continually updated with new information. Don’t forget to follow us on Facebook and Twitter to keep up to date on the latest arthritis and advocacy information.

 

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