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JointHealth™ insight   March/April 2005


This issue of JointHealth™ monthly highlights the MLA Breakfast hosted by Arthritis Consumer Experts (ACE), the Arthritis Research Centre of Canada (ARC) and Canadian Arthritis Patient Alliance (CAPA), in Victoria February 17, 2005. Don't forget to sign up for the Spring workshops.



Education, Research and Advocacy

"Arthritis 101" - helping government better understand the complexity of arthritis

On February 17, Arthritis Consumer Experts (ACE), the Arthritis Research Centre (ARC) of Canada and the Canadian Arthritis Patient Alliance (CAPA) hosted a research-based arthritis awareness raising event for Members of the Legislative Assembly (or "MLAs") in British Columbia. The event, titled "Arthritis 101: Making BC the Best in Arthritis Care in Canada", consisted of a breakfast followed by an arthritis screening clinic.

Twenty-two MLAs (4 of them ministers) and 14 MLA assistants and legislative staff attended - one of the best turnouts ever for an event of this kind.

The success of the breakfast was due in large measure to the "Arthritis 101" presentation given by Dr. John Esdaile, the Scientific Director of the Arthritis Research Centre of Canada. Dr. Esdaile provided MLAs with an overview of:
  • The state of arthritis in BC
  • Recent arthritis research advances
  • Components needed to create an excellent arthritis care environment
The presentation also included recommendations on what the government could do to improve arthritis treatment and care for 500,000 British Columbians. A key recommendation was to create an Arthritis Prevention and Care branch within the BC Ministry of Health, that includes:

PREVENTION
  • Develop a public health campaign around arthritis prevention and care (in partnership with ARC, ACE, CAPA.)
  • Introduce an arthritis prevention education program in primary and secondary schools across BC.
  • Establish and promote safe and effective exercise guidelines for British Columbians living with arthritis.
  • Develop healthy eating guidelines for British Columbians living with arthritis.
  • Support the ARC initiative to promote swimming and water-based exercise.
  • Diagnostically screen children for musculoskeletal developmental issues.
EDUCATION
  • Develop an evidence-based arthritis section in the personal health guide (with ARC, ACE, CAPA)
  • Provide nurse practitioners with adequate training in the identification and treatment of inflammatory arthritis (e.g., rheumatoid arthritis) and non-inflammatory arthritis (e.g., osteoarthritis).
MEDICATION
  • Establish a Pharmacare structure for inflammatory arthritis drugs similar to the one for cancer and HIV/AIDS (the costs of drugs for arthritis and musculoskeletal diseases are the first or second fastest growing drug category in the world.)
  • Provide immediate listings to arthritis medications stuck in the Pharmacare review back-log.
  • Provide Pharmacare coverage for biologic response modifiers being prescribed "off label" to treat ankylosing spondylitis and psoriatic arthritis.
RESEARCH
  • Mandate the Michael Smith Foundation to lead an arthritis research initiative that will focus on improving arthritis health outcomes.
  • Provide a $10.8 million grant to the Vancouver Hospital/ UBC Centre for Hip Health through the BC Knowledge Development Fund, (to match the Canada Foundation of Innovation award it received.)
  • Provide the Vancouver-based Arthritis Research Centre of Canada with $300,000 for five years to fund arthritis prevention research.
QUALITY OF LIFE
  • In true partnership with consumers/patient groups, create a model for consumer/patient involvement that is consultative, collaborative and accountable.
  • Restore funding to in-patient and out-patient arthritis physiotherapy and occupational therapy services in acute and tertiary care settings across the province.
  • Provide an additional $100 million to hospital budgets to clear joint repair or joint replacement surgery waitlists.
  • Conduct a total review of home care and home support as it relates to involving and mobilizing The Arthritis Society and other health agencies and disease specific volunteers in the multi-disciplinary care team in the home.
  • Develop an "aging in place" strategy for those living with chronic disability due to arthritis.
  • Commit to quality end-of-life care so people with arthritis can die with dignity, pain free, surrounded by their loved ones in a setting of their choice.
  • Commit to the federal government's six-week Compassionate Leave Benefit.
To view the entire recommendations document, visit here.

Following the breakfast, MLAs and their staff were invited to take part in a first-ever arthritis screening clinic held right in the Legislature building. Three rheumatologists (Dr. Esdaile, Dr. Kimberley Northcott and Dr. Diane Lacaille) screened 40 people over a two hour period.

As one might imagine, they discovered five new cases of inflammatory arthritis. These people were encouraged to visit their family physician for medical follow-up.

Media coverage was excellent and we have been invited back to Victoria to meet with members of the Standing Committee on Health and the Liberal Health Caucus to discuss how to make arthritis care in BC the best in Canada.

Help make arthritis care in BC the best in Canada. ACE invites you to write your MLA and voice your comments and concerns about your healthcare needs. To find your MLA, click here. To learn more about how to make your voice heard by the health care system and government, visit the ACE website at www.arthritisconsumerexperts.org. Click on Arthritis and the Healthcare System on the menu bar at the top.



Research

Employment, work and arthritis

Employment is viewed as an important role. It not only pays the bills but also provides people with a sense of identity and helps people feel good about themselves (self-esteem) and their accomplishments (competence).

But…..what happens when an employee gets a chronic, degenerative disease like arthritis? The leading cause of long-term physical disability in adults is arthritis. Pain and loss of ability to do certain things are two of the most important reasons why individuals with arthritis give up their job. In fact, arthritis and problem of bones and muscles, are the most common health reasons why Canadians stop working.

The research, to date, has mainly focused on looking at people with arthritis and job loss. Not much attention has been given to how people with arthritis make changes to stay in the paid work force.

The following is a review of a study by Monique Gignac et al, recently published in Arthritis and Rheumatism [Arthritis Care & Research], Vo. 51, No.6, December 15, 2004, pp. 909-916 called, "Managing Arthritis and Employment: Making Arthritis-Related Work Changes as a means of Adaptation".

This study looked at the adjustments employees with arthritis make, in order to remain in the workplace. The study also looked at the relationship between how many changes an employee makes and depression. It looks at how people with arthritis view their own worth as an employee now and in the future, and most importantly, whether to tell their employer about their arthritis.

The study involved 491 employed adults (383 women and 109 men), all with arthritis, mostly rheumatoid arthritis (RA) and osteoarthritis (OA). The average length of time with arthritis was nine years. The average age was 51 years old, most were well-educated with annual incomes over $40,000.

Approximately 25% had not told their employer about their arthritis and 11% expected to leave their jobs in the following year due to disability from their arthritis.

Seven work changes due to arthritis were assessed over a six month period. Over 70% of the participants reported at least one change. The type of changes people made included:
  • daily work interrupted for 20 minutes or more
  • days absent
  • changed the type of work they did
  • changed the number of work hours
  • used vacation days to manage arthritis
  • unable to take on new projects
  • unable to seek promotion or job
Workplace changes were also associated with increased reports of depression. Research suggests that more attention needs to be given to the effects of work changes on the psychological well-being of persons with arthritis. If depression is present, then help is needed to keep people working or help them return to work.

The results of this study suggest the importance of understanding how an employee with arthritis views their disability, what are their expectations for work and their decision to tell their employer about their arthritis.

Among employees who expected to stay employed, who viewed their arthritis as having a negative effect on their work ability, made more changes. This was independent of whether they told their employer about their arthritis or not.

Employees, who expected to continue working, who viewed their arthritis as having minimal impact and told their employer, reported more changes than before. This was thought to perhaps be due to proactive changes by both the employee and employer.

People that expected to have to leave their employment reported more work changes due to the impact from the arthritis and having told their employer. On average people expecting to leave made more changes than people not expecting to leave their employment.

The study suggests that more research looking at the workplace environment and interpersonal relationships would be helpful. Perhaps people do not want to make many changes to manage their arthritis at work because, without disclosing the arthritis, other employees and employers might view the changes as poor work performance.

If you would like to share your experiences about employment and arthritis, please mail or email us at: feedback@jointhealth.org



Feedback

Community FAQ's

Biologics are not covered by the drug plan in Newfoundland and Labrador. Is this the only province not covering these drugs? What is the criteria for coverage and does this vary greatly, province to province?

Good news for people with rheumatoid arthritis who have been prescribed a biologic response modifier to treat their uncontrolled disease but who could not afford to pay for it. Three biologic response modifiers, adalimumab (Humira®), etanercept (Enbrel®) and infliximab (Remicade®) have been added to the drug benefit list in Newfoundland and Labrador on March 21, 2005. Coverage for these medications begins on April 1, 2005.

The criteria to qualify for coverage of these drugs are not available until the end of April. For now Health Newfoundland is assessing people case by case.

To check for information updates, click here. This will provide information on medical plan coverage for the three biologic response modifiers, when it becomes available.

If you live in somewhere other than in Newfoundland and Labrador, the criteria for biologic response modifier coverage may differ from province to province. An overview of coverage availability can be found on the ACE web site. Click here:


Acknowledgement
Over the past 12 months, ACE received unrestricted grants-in-aid from: Abbott Laboratories Ltd., Amgen Canada / Wyeth Pharmaceuticals, Bristol-Myers Squibb Canada, GlaxoSmithKline, Hoffman-La Roche Canada Ltd., Merck Frosst Canada, Pfizer Canada and Schering-Plough Canada, UCB Pharma Canada Inc. ACE also receives unsolicited donations from its community members (people with arthritis) across Canada.

ACE thanks these private and public organizations and individuals.