National Arthritis Awareness Month in Canada .pdf

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					                        Arthritis research, education and advocacy news : Septembert 2011
                                                                                                                 monthly
September is
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
  tf: 1.866.974.1366
                                                            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.
  e: feedback@jointhealth.org
                                                         mobile devices that healthcare professionals are            Following the screening result, the apps
  www.jointhealth.org
                                                         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

                                                                                  1
                               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.


1

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.

                                                                                   2
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 info@jointhealth.org                run to the ball; any time, on any court. I’m ready,
rheumatologist, who diagnosed him with psoriatic                                                               let’s go.”

                                                                                3
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
                                                                                                                 of JointHealth™.
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
                                                              activities.
                                                                                                                 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
Guiding Principles
                                                              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.




Suite #200B 1228 Hamilton Street Vancouver BC V6B 6L2
                                                                                                                                             1292137




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