Spring 2009

UCB Pharma Canada launches 2009 Rheumatoid Arthritis Scholarship Program

The UCBeyond Scholarship Program, now in its third year, offers eight (8), one-time scholarships of up to $5,000.00 CDN to people diagnosed with rheumatoid arthritis who are entering or currently attending a post-secondary educational institution. Application deadline is June 30, 2009. read more | comments

ACTION ITEMS

Alcohol and Methotrexate:  How concerned should I be?

One of the most frequent questions that I get asked by my patients who are about to start Methotrexate is: “What about alcohol”. read more | comments

Reporting health product side effects is your responsibility

In March this year the federal government introduced A Patient Guide for Reporting Side Effects from Health Products. Reporting by both consumers and physicians will help ensure the safety of the drugs approved for consumption in Canada in “real world” conditions. Latest advisories, recalls and warnings are also included on the MedEffect website. comments

Ontario residents – mark your calendar

The Consumer Advisory Council of the Canadian Arthritis Network invites you to attend the inauguration of CAN CARES, a conference designed to promote discussion on arthritis research for people living with arthritis. comments

MESSAGE FROM THE PRESIDENT

Minister, can you hear me?

During the federal election campaign CAPA wrote to Prime Minister Harper outlining our concerns relating to research funding, health human resources, and access to medications. Following the election our letter was forwarded to the new Minister of Health, Leona Aglukkaq. I would like to share with you some of what we wrote and her response. read more | comments

COMMENT AND PERSPECTIVE

Research finds early RA symptoms often dismissed by patients

Have you ever wondered why there are so many challenges to getting diagnosed and starting treatment early for people with arthritis? Researchers from the University of British Columbia and the Arthritis Research Centre of Canada know. read more | comments

Good novel or research policy?  You decide

Policy statements involving research ethics are generally a tough sell to consumers/patients even to those involved in research projects. But consumers who attended the public consultations on Draft 2 of the Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans describe the document as being easy to read and understand and as absorbing as a novel. read more | comments

Defining vulnerable populations and patient representation – a consumer perspective

Identifying vulnerable populations within a group of conditions as vast as arthritis where people are affected from birth to the grave is difficult but not impossible. read more | comments

Are your clinical needs being met?

CAPA Steering Committee members (SC) from coast to coast provided their experience, perspective and voice to help inform a recent Nurses Conference in Vancouver. Three questions were asked: The first related to unmet needs; the second and third asked for suggestions for improving the clinical experience with the nurse and rheumatologist. Four themes emerged: Education, Information, Access, and Emotional Support. read more | comments

Inside the briefcase: Take a look

• Have you participated in an interview about a personal topic or issue? CAPA members who have participated in a face-to-face interview in 2006, 2007, or 2008 are invited to share their experience with Michele McIntosh, a graduate student in Nursing at the University of Alberta. Michele is studying what it is like for people to participate in research interviews. Download Invitation

• Ignorance about rheumatoid arthritis astonishes UK NRAS chief executive Findings from a poll commissioned by the National Rheumatoid Arthritis Society (NRAS) on the eve of the launch of their Year of RA campaign reveals “alarming ignorance about RA and its symptoms.”

• Home Care in Canada: From the Margins to the Mainstream The Canadian Healthcare Association explores the home care landscape in Canada with the purpose of broadening awareness, stimulating debate and promoting action. The brief makes evidence-informed recommendations to move home care from the margins to the mainstream of the health system.

• Health Canada is asking for your opinion Health Canada is inviting all stakeholders to participate in an evaluation of Phase I of the Summary Basis of Decision (SBD) initiative. An SBD document outlines the scientific and benefit/risk-based considerations that factor into Health Canada’s decision to grant market authorization for a drug or medical device. Add your voice to the discussion.

• The University of Ottawa’s Cochrane Centre offers Canadians free access to health information Canadians with access to the Internet are now able to view the full content of The Cochrane Library, an online resource that provides the best evaluations on health treatments.

TELLING IT LIKE IT IS

Research saved the day for RCMP Sergeant

It’s hard to remember when I didn’t have some back problems. I had done some heavy manual labour as a teenager so when, age 35, and 15 years after joining the police force I found myself with regular back pain and stiffness, I simply attributed it to pushing my back too hard early on. But it never got better. read more | comments