Arthritis research, education and advocacy news : Septembert 2011
National Arthritis Awareness Month in Canada . . .
and the Arthritis is cured! (if you want it)
National Arthritis Awareness Program (NAAP)
is in full force!
In honour of Arthritis Awareness Month, the
NAAP’s co-leaders, the Arthritis Research September is turning out to be a
Centre of Canada (ARC) and Arthritis Consumer transformative month for arthritis in
Experts (ACE) are excited to announce the Canada. The NAAP and its co-leaders,
launch of ArthritisID and ArthritisID PRO. ARC and ACE, are excited to be key
To see the app features please visit ArthritisID and ArthritisID PRO are iPhone and players in helping elevate arthritis
bit.ly/ArthritisIDfeatures iPod touch applications that help you detect, treat awareness and the need to support
and manage arthritis. Canada’s world-leading arthritis
The Power of Celebrity Disease Endorsement P3 Eighty percent of Internet users look online research efforts.
for health information and treatment advice. Our
research has shown a corresponding desire from Five detailed, but short, videos that
primary care providers. The NAAP’s new arthritis demonstrate appropriate techniques for
apps are valuable mobile health tools developed conducting joint exams. They are performed
in response to this demand. by ARC rheumatologists Dr. John Esdaile (in
Jayne MacAuley tells ACE what she has learned
The apps, which can be downloaded for free English) and Dr. Diane Lacaille (in French).
about arthritis through her role as a senior editor
at the iTunes store, bring the most current and A unique feature of both apps is an interactive
with Zoomer Magazine. P2
accurate arthritis research together in one single screening tool that asks several questions, and
place. You no longer have to spend hours online from the responses can suggest a type of arthritis.
wading through endless websites, wondering if The raw material for the screening tool comes from
the information they contain is reliable. the arthritis point-of-practice tool created in the
In ArthritisID, you may appreciate the “Doc first year of the NAAP. The point-of practice tool
Talk” section, which gives tips for speaking to your incorporates the most recent classification criteria
doctor or pharmacist about arthritis, joint pain, for rheumatoid arthritis (RA) by the American
and arthritis prevention. And, from the “Arthritis College of Rheumatology and new osteoarthritis
Suite #200B 1228 Hamilton Street
Community” section you can link directly to knowledge from Osteoarthritis Research Society
Vancouver BC V6B 6L2
online arthritis organizations and find ways to get International (OARSI). To round out the research,
t: 604.974.1366 f: 604.974.1377
involved. we consulted with the Canadian Rheumatology
ArthritisID PRO extends the reach of the NAAP’s Association, The Arthritis Society, and Dr. Gillian
information and tools beyond the desktop, to the Hawker who provided input from OARSI.
mobile devices that healthcare professionals are Following the screening result, the apps
using in a variety of clinical settings, whenever connect you to the “Arthritis Types” section to read
they need them. Resources include: “Spotlights” and “Red Flag” indicators of each of
ACE does not promote any “brand”, product
Continuing Medical Education (CME) activity the seven types of arthritis covered in the apps.
or program on any of its materials or its
accredited by the College of Family Physicians of Here, you will also find detailed information about
website, or during any of its educational
Canada providing Mainpro® M2 Credits. Arthritis treatment strategies. This section lists medications
programs or activities.
ID PRO is the only mobile arthritis app to include typically used to treat a form of arthritis, and
© ACE Planning & Consulting Inc. 2011
this feature. 2
Jayne MacAuley tells ACE
what she has learned
about arthritis through her
Zoomer Magazine partnered with ACE
role as a senior editor with and the Arthritis Research Centre of
Canada (ARC) for Year Two of the Arthritis
Zoomer Magazine. is cured! (if you want it) National Arthritis
Awareness Program, to help raise
awareness with its readership. Its readers
are active people over 45, often referred
Jayne doesn’t have arthritis. Before she started Zoomer will be sure to deliver the encouraging
to as the “boomer” generation.
working for Zoomer Magazine, all she knew news to our readers.”
about the disease was through her work as a As a senior editor researching health articles
for Zoomer, Jayne has become more attuned to His determination has served him well; however,
lab technologist years ago, where she did blood
a world with arthritis. Now she sees arthritis all if he had received his diagnosis today, he would
tests for rheumatoid factor. Rheumatoid factor,
around her. She has a friend who was diagnosed have more treatment options and might have
an antibody produced by the immune system,
with rheumatoid arthritis when he was 39. As she avoided hip replacement surgeries. And, through
can attack healthy tissue. She did not realize
got to know him, she discovered how tough it has arthritis awareness programs like the National
until she started doing research for Zoomer, that
been on him. When he was diagnosed, he had Arthritis Awareness Program, Arthritis is cured!
arthritis encompasses so many diseases beyond
two young children and his wife had to go back to (if you want it), he would find more up-to-date
rheumatoid arthritis and osteoarthritis, such as
school so she could work . . . because he could not. information about arthritis and a greater sense of
lupus and gout. She certainly had no idea how
He’s had both hips replaced and has been taking empowerment. All of these things lead to better
painful arthritis is and how it can lower the quality
prednisone for many years. Prednisone treats outcomes for people living with the disease.
of someone’s life.
the symptoms, but is less effective than disease Jayne also sees how the pain and discomfort
Through its coverage of health and wellness
modifying antirheumatic drugs (DMARDs ) or of rheumatoid arthritis interfere with a music
issues, Zoomer reaches out to people with
biologics for slowing joint damage. teacher’s ability to play instruments and do her
arthritis, as they do with other diseases like cancer, job. Likewise, Jayne has witnessed the suffering
She admires her friend, who is almost 80 now,
by conducting interviews with doctors about her mother-in-law went through due to the pain of
for his “remarkable courage.”
specific disease types and then providing a patient osteoarthritis in her shoulders.
profile to offer its readers different perspectives. The hardest thing, she says, is watching arthritis
Jayne finds that readers are particularly engaged Prednisone is fast acting, so it is often slow people down, and not being able to help.
by personal stories of successfully living with used as a therapy while a patient waits Seeing what her friends and family go through,
disease because it helps them to relate better for DMARDs, which act more slowly, to she feels blindsided by the disease.
to the topic. As part of its outreach, Zoomer will work. Low doses may slow joint damage, From observation, she has learned the best
discuss arthritis in the context of other subjects especially used in combination with other thing people with arthritis can do is to keep
like joints and joint health, exercise, nutrition or DMARDs, but more than five months of themselves comfortable . . . and to keep moving.
lifestyle, and, says Jayne, “As important discoveries continuous prednisone therapy may ACE has one thing to add: learn all you can
are made and new treatments developed that increase the risk of osteoporosis. about your disease because knowledge is
improve the quality of life for people with arthritis, power . . . and empowerment.
September is National Arthritis Awareness Month in Canada . . .
provides self-care and prevention strategies to family can learn a lot too, and perhaps understand
support healthcare professionals and patients in more what you are going through. The demand for information
making decisions about what to do to maintain Here are easy-to-remember short URL’s to help parallels the need for arthritis
or improve health and manage living with find the app: research in Canada. Approximately
osteoarthritis, ankylosing spondylitis, psoriatic 4.5 million Canadians live with
arthritis, lupus, gout, RA, and juvenile idiopathic ArthritisID bit.ly/GetArthritisID
one of the more than 100 types of
arthritis. ArthritisID PRO bit.ly/GetArthritisIDPRO
arthritis — in less than 20 years,
From organizing educational lectures and ArthritisID (Fr) bit.ly/ArthritisIDFr
the number will be 7 million. Today
public forums to producing webcasts and YouTube ArthritisID PRO (Fr) bit.ly/ArthritisIDPROFr
videos and developing digital “games”, and now arthritis accounts for one in ten
Smartphone apps, ACE and ARC are committed to In its first two years, the NAAP grew to become doctor visits and one in 16 hospital
delivering patients, the public, and healthcare a leading source for trusted, timely arthritis stays. In stark contrast to the need,
providers the information they need in ways they knowledge through exciting new communication arthritis only receives three percent
want. channels. To learn more about the NAAP, please of research dollars in Canada.
Tell people about the apps! Your friends and visit www.arthritisiscured.org.
The Power of Celebrity Disease Endorsement
A celebrity endorsement of a disease or serious arthritis, a chronic, inflammatory arthritis caused so I was able to slow or stop any further damage.”
public health issue can be a powerful and positive by an overactive immune system. Symptoms and During this year’s U.S. Open in September,
tool for raising awareness and funds. Consider signs include stiffness, pain and swelling of joints, seven-time tennis Grand Slam winner Venus
what Michael J. Fox has achieved for Parkinson’s reduced physical function and reduced quality of Williams announced her withdrawal due to the
awareness and research funding. life. It usually hits those in their 30s and 40s. effects of Sjögren’s syndrome. Sjögren’s is a disease
Another hope is that the celebrities will inspire Mickelson’s endorsed program “On Course with in which immune cells destroy the glands that
people, who may be reluctant to seek diagnosis Phil” is meant to educate people about chronic lubricate mucous membranes. This may cause dry
or treatment, to get more screenings and inflammatory conditions and encourage people eyes, mouth and throat; half of people with this
checkups for common and often treatable medical to get checked if they have any syndrome will develop arthritis.
conditions. symptoms. At the same time that Williams withdrew from
The early diagnosis message is an extremely “This is meant to give people the tournament, a national arthritis awareness
relevant one for arthritis and other diseases to who have similar symptoms the tools campaign was launched in New York at the US
slow or prevent long-term damage. What we and resources that will help them get Tennis Open. Featuring Billie Jean King, the ads
know from reports like The Public Health Agency questions of their own answered,” show middle-aged men and women participating
of Canada’s “Life with Arthritis in Canada” is there said Mickelson. “I was so lucky, in sports like swimming, biking, boxing and
are thousands of Canadians who go untreated for because I got on it right away, walking. The campaign focuses on activities the ad
arthritis because they lack information. creator, the Arthritis Foundation, said could help
“The severity of the disease and the pace relieve arthritis pain and sometimes even delay
of joint damage are variable, but it is usually the onset of symptoms. The copy says, “In the fight
progressive,” said Dr. John Esdaille, Scientific against arthritis, you need a weapon,” and asks,
Director at the Arthritis Research Centre “What’s yours?”
of Canada. “Once joint damage occurs, it is Billie Jean King, the 12-time Grand Slam singles
irreversible, so it does not make any sense to wait winner and cofounder of World Team Tennis, is 67
until things get really bad to seek medical help. If year of age and has been living with osteoarthritis
the disease is treated early, damage can be limited since she was in her 20s. Both her knees were
or even avoided in some cases.” replaced last year.
In the past 6 months, a number of high profile The new campaign wants people to refuse to
athletes have gone public about living with accept pain and the limitations of arthritis on their
arthritis. Their stories have led to an increase in lives. The program, in an urgent and hard-hitting
public discussion and in media coverage of one of way, encourages baby boomers 55 and older to
the most prevalent but lower profile diseases in take action now to prevent the progression of
North America. arthritis.
In the spring of 2011, golf pro Phil Mickelson Research conducted last November among
helped launch a public awareness campaign adults age 40 and older by Harris Interactive for
for inflammatory arthritis. It was created in the US Ad Council found that only 16 percent of
collaboration with Amgen, Pfizer, and the Joint those with arthritis were very confident they could
Smart Coalition, which includes the Arthritis manage their pain. The research also found that
Foundation and the National Psoriasis Foundation. while 58 percent believed taking medication is the
ACE contacted Mr. Mickelson, whose most effective way to relieve arthritis pain, only 45
representatives shared his story, a familiar percent thought regular exercise was an effective
sounding one for many people living with arthritis. way to reduce this pain.
A few weeks before the 2010 U.S. Open, Mickelson The voiceover on new television commercials
began to experience severe joint pain. Even his What do you think? — with middle-aged adults doing sports — says,
regular practice routine suddenly became difficult ACE would like to hear your opinion about “The pain will not control us. It will never break us,
to endure. Mickelson’s aches and pains got so celebrity endorsement of disease and define us, or keep us still. Because arthritis can’t
excruciating that he could barely get out of bed, health issues, including arthritis. Is there a beat us, if we beat it first.”
never mind swing a golf club. well-known Canadian living with arthritis Television ads featuring Ms. King depict her
“I got really scared,” said Mickelson. “I started who would serve as a positive role model for playing tennis, with arthritis as her opponent. In
wondering what it was, and if it was even others? What message would you like to hear one, Ms. King says, “Tennis is a weapon for me with
treatable.” from a celebrity spokesperson? Please send arthritis. There’s nothing like it for me to hit a ball,
Mickelson immediately went to see a your comments to firstname.lastname@example.org run to the ball; any time, on any court. I’m ready,
rheumatologist, who diagnosed him with psoriatic let’s go.”
Arthritis Consumer Experts practical necessity. Any profit from our activities Thanks
is re-invested in our core programs for Canadians ACE thanks the Arthritis
Who we are with arthritis. Research Centre of Canada
To completely insulate the agenda, the (ARC) for its scientific review
Arthritis Consumer Experts (ACE) provides
research-based education, advocacy training, activities, and the judgments of our organization
from those of organizations supporting our work, Acknowledgement
advocacy leadership and information to Canadians
we put forth our abiding principles: Over the past 12 months, ACE received unrestr-
with arthritis. We help empower people living with
• ACE only requests unrestricted grants from icted grants-in-aid from: Abbott Laboratories
all forms of arthritis to take control of their disease Ltd., Amgen Canada, Arthritis Research Centre of
and to take action in healthcare and research private and public organizations to support its
Canada, Bristol-Myers Squibb Canada, Canadian
decision making. ACE activities are guided by its core program. Institutes of Health Research, GlaxoSmithKline,
• ACE employees do not receive equity interest or Hoffman-La Roche Canada Ltd., Merck & Co.
members and led by people with arthritis, leading
personal “in-kind” support of any kind from any Canada, Novartis Canada, Pfizer Canada, Sanofi-
medical professionals and the ACE Advisory Board.
health-related organization. aventis Canada Inc., Takeda Canada, Inc., and
To learn more about ACE, visit
• ACE discloses all funding sources in all its UCB Canada Inc. ACE also receives unsolicited
www.jointhealth.org donations from its community members (people
with arthritis) across Canada.
• ACE identifies the source of all materials or
ACE thanks these private and public
Guiding principles and documents used. organizations and individuals.
acknowledgement • ACE develops positions on health policy,
products or services in collaboration with Disclaimer
arthritis consumers, the academic community
The material contained in this newsletter is
Healthcare is a human right. Those in healthcare, and healthcare providers and government provided for general information only. It should
especially those who stand to gain from the ill free from concern or constraint of other not be relied on to suggest a course of treatment
health of others, have a moral responsibility to organizations. for a particular individual or as a substitute for
examine what they do, its long-term consequences • ACE employees do not engage in any personal consultation with qualified health professionals
and to ensure that all may benefit. The support of who are familiar with your individual medical
social activities with supporters.
needs. Should you have any healthcare related
this should be shared by government, citizens, and • ACE does not promote any “brand”, product or
questions or concerns, you should contact your
non-profit and for-profit organizations. This is not program on any of its materials or its web site, physician. You should never disregard medical
only equitable, but is the best means to balance or during any of its educational programs or advice or delay in seeking it because of something
the influence of any specific constituency and a activities. you have read in this or any newsletter.
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