According to Health Canada

Excessive drinking of energy drinks or mixing them with alcohol can have serious health effects. Energy drinks are meant to supply mental and physical stimulation for a short period of time. They usually contain caffeine, taurine (an amino acid, one of the building blocks of protein), vitamins and glucuronolactone, a carbohydrate. Energy drinks should not be confused with sports drinks such as Gatorade® or Powerade®. Sports drinks re-hydrate the body and provide sugars, which the body burns to create energy and replenish electrolytes.

The It's Your Health article on Safe Use of Energy Drinks has been updated with new information and is now available online.

USA Today reports on "deals" between generic drug companies and brand-name pharmaceutical companies where the generic drug company delays introducing a generic in exchange for money. It's an interesting article. Legislators are planning to pass a bill preventing this in future. Could the same thing be happening in Canada?

The UK's Telegraph (8/25, Smith) reports that the UK's National Institute for Health and Clinical Excellence (NICE) "has said NHS patients with severe rheumatoid arthritis (RA) can move from one drug to the next as each one stops working for them." Up until now, "there had been restrictions on switching between drugs, and the 40,000 people with the condition were left without any effective treatments once their existing medication stopped working."

In addition, NICE has approved a new drug called RoActemra (tocilizumab) to be used by RA patients when all other drugs tried "have failed or cannot be tolerated." Dow Jones Newswire (8/25, Stovall) also covers the story.

The European Commission, European Medicines Agency and the U.S. Food and Drug Administration recently adopted a common application form for drug makers seeking orphan designation for their medicines. This will simplify the drug approval process and spur innovation by allowing companies to apply for approval of their new product in both the US and across Europe at the same time. In addition, this new process will help the regulatory agencies to better understand each other's systems. [1]

Read the article: Treatment of Rare Disorders

In contrast, patients and advocates in Canada have expressed concern that the Common Drug Review (CDR) – a government appointed agency that makes recommendations to provinces (with the exception of Quebec) regarding listing decisions for new drugs – is failing to provide patients with timely access to new medicines and failing to operate in an accountable fashion. The CDR process has recommended against reimbursement for every treatment evaluated for unmet needs.

In response to these concerns, the federal House Standing Committee on Health recently conducted a review of the CDR. The government recommendations include: [3]

• Establishing a specifically designed approach for the review of drugs for rare disorders and for first-in-class drugs;
• Creating a distinct appeal process with a separate group of experts; and
• Increasing the current level of public involvement in the CDR through public attendance at open CEDAC meetings and the creation of a public advisory body.

While these recommendations are encouraging, this review is non-binding and merely suggests that the CDR consider these suggestions. The extent to which CDR implements these, and other Committee recommendations, remains to be seen.

Rare Disorders
Despite the small numbers affected by each disease, there are up to 6,000 rare disorders which affect nearly 10% of the Canadian population, 30 million people in Europe and about 25 million Americans.

[1] http://today.reuters.com/news/articlenews.aspx?type=scienceNews&storyID=2007-11-26T183432Z_01_L2677301_RTRUKOC_0_US-DRUGS-REGULATORS.xml

[2] Biotech Canada – Presentation to the House Standing Committee on Health (April 16, 2007)

[3] House Standing Committee on Health Report on the Common Drug Review (Dec. 2007) http://cmte.parl.gc.ca/cmte/CommitteePublication.aspx?COM=13189&Lang=1&SourceId=220278

According to a recently released report comparing international usage of prescription drugs, Canada ranks second-last (thirteenth out of 14 countries).

Canada Slow to Adopt Innovative Medicines

The report – Extent and Causes of International Variations in Drug Usage – was conducted for the UK Secretary of State for Health to determine whether the UK is adequately providing for the health needs of its citizens. The report noted that "Medicines play an important role in the management of most diseases. In recent years, there have been important changes in the drugs that are used to treat many conditions.

This has helped to make many conditions more treatable, thus improving patient outcomes." "... ensuring that are used appropriately has an important part to play in delivering high-quality, fair, safe and effective NHS services."

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CAPA urges you to become active in reminding politicians at all level that a good health care system is essential.

Your experiences as a father with arthritis may help inform future health care services. We want to hear from men who will complete a survey and tell us what they think about it. We seek men who:

• have inflammatory arthritis (such as rheumatoid arthritis, ankylosing spondylitis, psoratic arthritis, juvenile arthritis or lupus),
• are fathers with at least one child under 21 years living at home (shared custody of children living with you part time is ok)
• live in Canada

Dr. Catherine Backman, a researcher at the Arthritis Research Centre and the University of British Columbia, is conducting a study on the Impact of Arthritis on Fathers. The first step is to see if the survey is easy to complete and results in useful information. Survey questions ask about parenting, arthritis symptoms, health, support from other people, and family characteristics.

Participation involves completion of a survey (by mail or on line) that takes up to 1 hour to complete.

Research_Protocol_outline-emailed.doc

On July 19, 2010 the Public Health Agency of Canada issued an update on the first Arthritis in Canada publication. Although progress is being made on interventions to reduce the impact of arthritis on Canadians, arthritis remains common, costly, and disabling. More than 4.2 million Canadians live with one or more of the 100 conditions that comprise arthritis. It is one of the leading causes of pain and physical disability in Canada and a major public health challenge. Arthritis may affect one’s daily activities, choice of career, social participation, relationships and family life, and economic status.

Life with Arthritis in Canada: A personal and public health challenge is designed to increase public awareness that arthritis is not simply a normal part of aging and the importance of prevention and timely management. Read and download the report at:

Life With Arthritis in Canada: A Personal and Public Health Challenge

This report, Life with Arthritis in Canada: A personal and public challenge is the second national surveillance report on arthritis. Using the most recent data sources available, it provides an overview of arthritis in the Canadian population and its wide-ranging impact. It also suggests approaches for reducing the risk of developing some types of arthritis (osteoarthritis and gout) in addition to minimizing disability and improving the quality of life of those living with any type of arthritis.

In 2007-2008, over 4.2 million Canadians (16%) aged 15 years and older reported that they had arthritis. With the aging population, this number is expected to increase to approximately 7 million (20%) in 2031. Arthritis was the second and third most common chronic condition reported by women and men, respectively. Overall, nearly two-thirds (64%) of those affected with arthritis were women. Nearly three in five people with arthritis were aged under 65 years.

Arthritis can have a major impact on individuals and families, with many individuals reporting fair or poor general and mental health, needing help with daily activities in addition to limitations in work, community, social and civic life. On average, over a quarter of men and women with arthritis between 25 and 44 years of age were not in the labour force because of their arthritis.

Êtes-vous intéressés par des sujets reliés à l’arthrite tels que l’accès aux médicaments, la recherche, le travail et le handicap ou l’accès aux soins de santé? Si oui, alors joignez-vous à l’Alliance canadienne des arthritiques (ACA).

Nous sommes à la recherche de candidats à travers le Canada qui peuvent apporter de nouvelles idées. Les candidats intéressés doivent posséder les compétences suivantes:

• Expérience en défense des droits ou volonté de l’apprendre
• Connaissances générales des problèmes touchant les personnes arthritiques
• Bonne capacité de rédaction
• Temps à dévouer bénévolement à l’ACA et participation aux téléconférences mensuelles, ainsi qu’à une rencontre annuelle en personne, habituellement à l’automne
• Pouvoir allouer de 5 à 10 heures par mois à l’ACA
• Possibilité de participer à des conférences/réunions à l’extérieur si nécessaire
• Bonne maîtrise de l’ordinateur, accès à Internet et aux courriels sont absolument essentiels
• Volonté de travailler en comité et partager l’information de sorte que le Comité directeur (et les membres de l’ACA) possèdent des informations à jour
• Agréable, qui aime travailler en équipe, mais également de façon indépendante

Procédure pour poser sa candidature :

Courriel : .(JavaScript must be enabled to view this email address)
Date limite : 15 août 2010
Nous transmettrons un formulaire de nomination aux candidats intéressés à être membre du Comité directeur de l’ACA.

Que font les membres du Comité directeur?

Les membres du Comité directeur sont les yeux et les oreilles de l’ACA dans leur province ou leur région. Ils représentent l’ACA et s’assurent que ses politiques et principes directeurs les questions concernant les arthritiques sont entendus par les différentes parties prenantes et ils apportent de nouveaux sujets à l’attention du Comité directeur afin que l’ACA puisse se positionner de façon unanime sur des sujets d’actualité.

Les membres du Comité directeur font partie de comités dont les sujets sont aussi variés que l’accès aux médicaments, l’arthrite juvénile idiopathique, l’accès aux professionnels de la santé, les communications (avec les membres, les partenaires tels que Joint Pain et les politiciens afin d’assurer la visibilité des membres de l’ACA et que leur voix soit entendue). De plus, nous travaillons en partenariat avec les professionnels de la santé sur des projets de recherche en soutenant leurs candidatures pour du financement et en leurs faisant part de nos commentaires du point de vue d’un patient. Nous transmettons également nos commentaires aux compagnies pharmaceutiques tout en portant une attention particulière à la neutralité et à l’absence de biais.

CAPA_Recruitment_AD_2010_07_26_Fr.pdf

Are you interested in arthritis issues such as access to medications, research, disability & work or access to health care? If yes then think about joining us. We are looking for candidates who can bring fresh new ideas from across Canada. Candidates should have the following qualifications and skills:

• Strong advocacy skills or the willingness to learn
• General awareness of arthritis issues
• Strong writing skills
• Time to dedicate as a volunteer and to attend monthly teleconferences and an annual face to face meeting usually in the Fall
• Must be able to dedicate 5-10 hours per month to CAPA business
• Ability to attend out of town conferences/meetings as needed
• Computer skills, access to the internet and e-mail is absolutely essential
• Willing to work as part of a committee, sharing information so CAPA’s Steering Committee (and members) are up to date on issues
• Personable and loves working in a team but is also self directed

Application Process:

E-Mail .(JavaScript must be enabled to view this email address)
Deadline: August 15, 2010
We will forward a Nomination Form to prospective Steering Committee Members.

What does a Steering Committee Member do?

A CAPA Steering Committee (SC) member typically is responsible for being the ears and voice of CAPA in their province or region. The SC member will represent CAPA and ensure CAPA’s policies/philosophies are heard in matters affecting arthritis patients or bring new issues to the full SC so a consensus is reached on all CAPA positions.

The SC member will be a Committee member on committees such as Access to Medication, Juvenile Infantile Arthritis (JIA), Access to Professionals, Communication (to members, to organizations with shared interests (such as Joint Pain), and to politicians to ensure CAPA members are visible and have a voice). We also work with professionals on research studies, supporting grant applications and providing patient-focused feedback and provide feedback to pharmaceutical companies, being careful to remain neutral and bias-free.

CAPA_Recruitment_AD_2010_07_26.pdf

The Public Health Agency of Canada has published a report that is worthy of note. Please visit one of the following links:

English Life With Arthritis in Canada: A personal and public health challenge



French Vivre avec l'arthrite au Canada: Un défi de santé personnel et de santé publique

In the words of Dr. David Butler-Jones,

Dear reader,

I urge everyone in reading this report, Life with Arthritis in Canada: A personal and public health challenge, to identify what can be done within your organization or personally to prevent and reduce the impact of arthritis among Canadians.

Dr. David Butler-Jones
Chief Public Health Officer of Canada

NEWS: Medpage Today(7/13, Petrochko) reported, "The FDA has expanded the black box warning to the label of the rheumatoid arthritis drug leflunomide (Arava) to include possible fatal liver damage." The decision was made after the "agency received 49 adverse event reports -- including instances of jaundice, coagulopathy, encephalopathy, and 14 fatalities -- about the drug from August 2002 to May 2009." The "greatest risk occurred in patients taking other drugs that may cause liver damage while taking leflunomide and in patients with preexisting liver disease."

Notably, the "drug label already features a boxed warning stating that leflunomide is contraindicated for pregnant women and for women of childbearing potential not using reliable contraception," Medscape (7/13, Lowes) reported. "More information on today's FDA announcement about leflunomide is available on the agency's website

This year, the focus of World Arthritis Day is on young people entering the workplace for the first time and dealing with arthritis. CAPA would like to hear about your experiences so please post your stories and pictures to our Facebook page at CAPA Facebook

For more information on World Arthritis Day, please visit:

World Arthritis Day Website

In our three weeks of discussion about Health Sciences Online, we had scores of participants from multiple countries, including Australia, Canada, Egypt, Germany, Guatemala, France, India, Indonesia, Kenya, Macedonia, Nigeria, Thailand, Tunisia, and the United States.

Most respondents found Health Sciences Online site to be a very useful library of resources, and we invite HPGN members and your colleagues to continue to use this site to find learning resources that are free, ad-free, comprehensive, and authoritative and we're adding 100s of resources each month to the 50,000+ resources we already have.

There was also considerable interest expressed our upcoming virtual health sciences university. Especially in week three, particular interest was shown for creating new trainings in these areas (and we have already begun international collaborations to build them): 1. Patient safety, and hospital and clinical infection control 2. Perinatal care 3. Nutrition 4. Cardiovascular disease 5. Speech/language pathology 6. Pulmonology

We believe this discussion was very successful and invite you all to remain part of the Health Sciences Online family. You'll hear more from us in 2011 about our virtual university launch, but please use Health Sciences Online freely in the interim -- and let us know if there are materials you'd like us to add, or if we can help you develop high-quality, low-cost trainings in topics you think would be useful

Yours in democratizing health sciences knowledge, Erica

Erica Frank, MD, MPH

The above report has just been released and deals with musculoskeletal conditions in women in Ontario.

POWER Musculoskeletal Conditions Report

About POWER (from their website)

Musculoskeletal conditions cause pain and physical disability which lead to increasing use of health care services. We report on how the health outcomes of musculoskeletal disorders and the quality of care differ by age, gender and socioeconomic status. This information can be used to identify areas where disparities can be reduced and care can be improved.

We report on the spectrum of musculoskeletal conditions as follows:

* General Indicators (morbidity, health and functional status, health behaviours and 
 medication management, access and utilization of services) 
* Osteoarthritis
* Osteoporosis
* Rheumatoid Arthritis
* Low Back Pain

**Take a look at the latest information technology! **

If you have Rheumatoid Arthritis and was diagnosed within the past 12 months, you may be eligible to take part in a new research study comparing two methods to present treatment information: • An information booklet • A series of animated stories For more information, please check our study webpage at the Arthritis Research Centre of Canada: Research Study - RA Patients

Note that this study will require you to visit the Arthritis Research Centre so you must be located in the lower mainland of B.C.

From Vancouver Sun, July 9, 2010: ** Moose play part in arthritis discovery**

Development of osteoarthritis in mammals linked to periods of malnutrition in their youth, researchers say

Moose living on a remote Lake Superior island near the U.S.-Canada border have unlocked a mystery about how the bones of aging mammals -- including humans -- can come to suffer the ravages of arthritis. The findings have emerged as part of a remarkable 50-year study of the antlered beasts on Isle Royale, a setting that three generations of scientists have used as a unique natural laboratory to observe the predator-prey dynamics between moose and wolves.

The uninhabited island -- protected as a U.S. national park -- is part of Michigan. Over the centuries, animals from the mainland have occasionally crossed the lake during severe freeze-ups and populated the 72-kilometre-long island, Superior's largest. A team of U.S. researchers, in a study published in the latest issue of the journal Ecology Letters, has detailed an unexpected discovery that links osteoarthritis among older moose to periods of malnutrition they endured as juveniles.

It's a finding, the scientists say, that has implications for archeologists trying to understand conditions faced by prehistoric peoples, whose burial grounds can yield evidence of disease and adverse environmental conditions. And the moose bones of Isle Royale may also offer insights for current medical research on osteoarthritis, the team claims. "Our study suggests the need to consider more carefully whether osteoarthritis is like other late-onset pathologies -- including heart disease, diabetes and hypertension -- that appear to have risk factors established early in life," the paper states. Wildlife biologists began studying the Isle Royale moose in the late 1950s.

Deloitte held a series of Dialogue on diversity roundtables to discuss the role the business community can play in addressing the issues facing people with disabilities.

The roundtables began March 3, 2010, in Halifax and traveled to six other cities during the Paralympic Games, including Toronto, Ottawa, Saskatoon, Montreal, Edmonton, and concluded in Vancouver on March 19. Each session included representatives from the business community, special interest groups, government agencies, current and former Paralympic athletes, and Deloitte partners and colleagues.

This white paper is the result of these discussions, and it provides insights into key recommendations of those involved.

“I hope that the ideas that come out of this white paper will add another voice to the discussion and reinforce the importance of celebrating all aspects of diversity in Canadian business,” says Jane Allen, partner and Chief Diversity Officer.

Deloitte on Diversity

· CIHR Recruitment of New IAB Members

· 2009-10 CIHR Grants and Awards Guide

· Studentship in mobility, musculoskeletal health and arthritis across the lifespan

· IMHA Workshop held at CIHR’s Primary Health Care Summit, January 19, 2010

· The George Karpati Symposium on Neuromuscular Disease - May 10, 2010

** CIHR Recruitment of New IAB Members**

The Canadian Institutes of Health Research (CIHR) is renewing membership for its thirteen Institute Advisory Boards (IABs) and invites you to assist by encouraging excellent candidates to apply. We are seeking about 40 new members to serve three-year terms beginning September 1, 2010.

Diversity of expertise and experience are key to the success of IABs. Each of CIHR Institute IABs is made up of 16 volunteers from Canada and abroad who meet at least twice a year to advise the Institute on health research priorities. They also consider how best to shape and implement health research strategies in line with these priorities, and to accelerate the flow of knowledge into health benefits.

Applications may be submitted online from January 18 to March 15, 2010 at

New Member Application and by clicking on the link: How to apply to become an IAB member.

Composition of IABs

Institute Advisory Boards are made up of 16 individuals from Canada and abroad, reflecting the greatest possible diversity across the following dimensions:

Research expertise - across the disciplinary scope of Institute research, ethics and knowledge translation and across the full range of biomedical, clinical research and research respecting health systems, health services, the health of populations, societal and cultural dimensions of health, environmental influences on health.

Community sectors - voluntary health organizations, regional/provincial/federal agencies, business, health care practitioners, health care users, policy makers (national, regional, local levels).

Additional experience/expertise –knowledge of the health care sector, health care usage and of health research issues, experience with the development of health and health-related policy, experience with strategic health planning, health law, training/education, communications.

Demographics - provincial/regional/international representation, gender, linguistic preference, career stage and institutional research base.

** 2009-10 CIHR Grants and Awards Guide**

The paper copy of the 2009-10 CIHR Grants and Awards Guide is now available. A PDF Version PDF version is also available online.

Studentship in mobility, musculoskeletal health and arthritis across the lifespan

Application Deadline

March 15, 2010

The purpose of this funding opportunity is to provide undergraduate students with opportunities to undertake research projects with established health researchers in an environment that provides strong mentorship. This opportunity targets the early stage of the student's academic training in order to encourage the pursuit of research in areas of strategic interest to CIHR's Institute of Musculoskeletal Health and Arthritis (IMHA) and CIHR's Institute of Aging (IA). The maximum amount awarded for a single award is $4,950 for up to 3 months.

To access the application online, please see IMHA Funding Opportunities at http://www.cihr-irsc.gc.ca/e/13217.html

** IMHA Workshop held at CIHR’s Primary Health Care Summit, January 19, 2010**

Research Gaps for Primary Care in Musculoskeletal Health was hosted by CIHR’s Institute of Musculoskeletal Health & Arthritis and was one of twelve afternoon concurrent workshops held at the CIHR Primary Healthcare Summit on January 19, 2010 in Toronto. Twenty-nine people, including principal investigators, health professionals, trainees, IMHA partners, government representatives, and NGO representatives, met to discuss research issues with respect to primary care for people with MSK conditions in Canada.

Speakers included:

Dr. Gillian Hawker, Physician-in-Chief, Women’s College Hospital, and Professor, Dept. of Health Policy, Management and Evaluation, Faculty of Medicine, University of Toronto

Dr. Linda Li, Harold Robinson/Arthritis Society Chair in Arthritic Diseases and Assistant Professor, Department of Physical Therapy, University of British Columbia; Arthritis Research Centre of Canada

Dr. Carlo Marra, Associate Professor, Canada Research Chair in Pharmaceutical Outcomes, Michael Smith Foundation for Health Research Scholar and Director, Collaboration for Outcomes Research and Evaluation (CORE) Research Scientist, Centre for Health Evaluation and Outcome Sciences, Providence Health

Michael Hillmer, Manager of the Chronic Disease Unit in the Health System Policy and Relations Branch in the Health System Strategy Division, Ontario Ministry of Health and Long-Term Care

To access the Speakers' Presentations, please see workshop 2.11 at

For further information or an electronic copy of the summary report, please contact Gail Lush, IMHA- Senior Project Officer at gail.lush@utoronto.ca or call 613-820-3959.

Recrutement de nouveaux membres pour les CCI des IRSC

Les Instituts de recherche en santé du Canada (IRSC) renouvellent la composition de leurs 13 conseils consultatifs d'institut (CCI) et vous invitent à encourager d'excellents candidats à poser leur candidature. Nous sommes à la recherche d'environ 40 nouveaux membres qui rempliront un mandat de trois ans à partir du 1er septembre 2010.

Le succès du CCI repose sur la diversité des compétences et de l'expérience de ses membres. Le CCI de chaque institut des IRSC est composé de 16 bénévoles du Canada ou de l'étranger, qui se réunissent au moins deux fois par année afin de donner aux instituts des conseils concernant les priorités de recherche en santé. Ils déterminent également la meilleure façon d’élaborer et de mettre en œuvre des stratégies de recherche en santé qui sont conformes à ces priorités, et de veiller à ce que les nouvelles connaissances se traduisent rapidement en bienfaits pour la santé.

Les candidatures peuvent être soumises en ligne, du 18 janvier au 15 mars 2010 à l’adresse Recrutementet en cliquant sur le lien « Comment poser sa candidature pour devenir membre d'un CCI ».

Composition des CCI

Les conseils consultatifs d'institut se composent de 16 membres provenant du Canada et de l'étranger, de façon à refléter le plus possible la diversité quant aux dimensions suivantes :

Expertise en recherche - dans l'ensemble des domaines de la recherche, de l'éthique et de l'application des connaissances; dans l'ensemble de la recherche biomédicale et clinique, et de la recherche portant sur les systèmes de santé et les services de santé; la santé des populations, les dimensions sociétales et culturelles de la santé, et les répercussions environnementales sur la santé.

Secteurs communautaires - organismes de santé bénévoles, organismes régionaux, provinciaux et fédéraux, entreprises, professionnels de la santé, utilisateurs de soins de santé, responsables des politiques (à l'échelle nationale, régionale et locale).

Expérience/expertise supplémentaire – connaissance du secteur des soins de santé, de l’utilisation des soins de santé et des questions de recherche en santé, expérience dans l’élaboration des politiques de santé et de celles qui y sont liées, expérience dans la planification stratégique dans le domaine de la santé, le droit de la santé, la formation/éducation et les communications.

Données démographiques – représentation à l’échelle provinciale/régionale/internationale, sexe, préférence linguistique, étape de la carrière et base de recherche institutionnelle.

Guide de subventions et bourses des IRSC (2009-2010)

La version papier du Guide de subventions et bourses des IRSC (2009-2010) est maintenant

prête.

Une version PDF est également offerte en ligne (version PDF).

Atelier de l’IALA tenu dans le cadre du Sommet sur les soins de santé primaires des IRSC, le 19 janvier 2010

L’Institut de l’appareil locomoteur et de l’arthrite des IRSC a organisé l’atelier Research Gaps for Primary Care in Musculoskeletal Health, l’un des douze ateliers simultanés de l’après-midi, tenus en marge du Sommet sur les soins de santé primaires des IRSC, le 19 janvier 2010, à Toronto. L’atelier a réuni 29 participants, notamment des chercheurs principaux, des professionnels de la santé, des stagiaires, des partenaires de l’IALA, des représentants du gouvernement et des représentants d’organismes non gouvernementaux, pour discuter des questions de recherche dans le contexte des soins primaires destinés aux Canadiennes et Canadiens atteints d’un trouble locomoteur.

Conférenciers

Dre Gillian Hawker, médecin-chef à l’Hôpital Women’s College et professeure au Département des politiques, de la gestion et de l’évaluation de la santé, Faculté de médecine de l’Université de Toronto

Dre Linda Li, titulaire de la chaire de la Société de l’arthrite/Harold Robinson sur les maladies arthritiques et professeure adjointe au Département de physiothérapie de l’Université de la Colombie-Britannique; Arthritis Research Centre of Canada

Dr Carlo Marra, professeur agrégé, titulaire de la chaire de recherche du Canada sur les résultats de la pharmacothérapie, chercheur-boursier à la Fondation Michael-Smith pour la recherche en santé, directeur, Collaboration for Outcomes Research and Evaluation (CORE), et chercheur au Centre for Health Evaluation and Outcome Sciences, Providence Health

M. Michael Hillmer, gestionnaire de l’Unité des maladies chroniques, dans la Direction des politiques et des relations liées au système de santé, Division de la stratégie du système de santé, ministère de la Santé et des Soins de longue durée de l’Ontario

Pour consulter les présentations des conférenciers, suivez le lien sous l’atelier 2.11, à l’adresse presentations (en anglais).

Pour obtenir de plus amples renseignements ou la version électronique du rapport sommaire, veuillez communiquer avec Gail Lush, agente principale de projets de l’IALA, à l’adresse gail.lush@utoronto.ca ou au 613-820-3959.

The **International Alliance of Patients Organization (IAPO) **met last October in Buenos Aires. The report from that meeting is now available.

IAPO Latin American Meeting Oct 2009

For further information on the IAPO, visit their website at IAPO Website

Early this year, the Ontario Government announced that they would be unilaterally cut the price of generic drugs by 50%. Although a cut in prices is welcome news to people and companies that must pay for pharmaceuticals, those funds actually flow through the generic drug companies to the pharmacies and subsidize the cost of dispensing drugs and some other services pharmacists provide. The resulting turmoil has caused drug stores to reduce hours and lay off pharmacy help, and ultimately may result in closing stores.

In contrast, the BC Government has worked with the pharmaceutical industry and drug store representatives and although the cuts in price are only 25%, the cooperation has resulted in a seamless implementation. The following is CAPA's position on these developments.

BC To Cut Prices of Generic Drugs

Bravo to the BC Government for taking a rational view on prescription drug prices. We’ve all experienced the impact of various levels of government “downloading” services without providing the funds needed to pay for it, and have suffered the consequences. In Ontario, the unilateral decision to suddenly cut generic drug prices simply meant a cost saving to the Government while shifting the impact to generic drug companies and through them, to pharmacies. The result has been reduced hours, likely layoffs and pharmacy closures, which directly impact the patient consumers. Although asked, CAPA could not support such draconian and confrontational strategies, simply to get lower drug costs.

The entire health care system needs to evolve to provide better care for an aging but still active population. Part of that change has been shifting services to pharmacies, who often are the health care practitioners with the most exposure to the patient and sometimes the most complete knowledge of the patient’s issues. There was a recent presentation in Europe by the head of BC’s pharmacist association, in which a successful study helped to identify many individuals who suffered from undiagnosed arthritis. Working with local physicians, the pharmacists were able to get treatment going and everyone in the Canadian Arthritis Patients Alliance knows the value of early diagnosis and treatment.

The Ontario Government recognized the need for pharmacists to provide more services with a portion of the funds saved, but nothing to replace the underfunding of current services (the average prescription in Ontario costs about twice as much to fill than regulated prescription fees cover). The goal was financial only and we are in a great deal of peril when we decide everything on a monetary basis. Too many decisions in health care and education today are made based on money – it should be a factor but the humans impacted should also be considered.

There is a solid working partnership in BC (and other western provinces) between the governments and pharmaceutical companies and the cooperative process appears to lack only one thing: “Where were the patient representatives?” It was obvious during a recent conference when the head of BC’s Pharmacare discussed their progress on the “most significant drug policy reform in 15 years” that the Government in BC has not made patient involvement a priority. Many people who have had issues getting access to medication can attest that the BC system is still full of roadblocks and delays, and has customer service issues.

So, bravo to BC for making a rational decision in this regard and working with industry to ensure pharmacy services remain in place (and perhaps even improve). But let’s focus on ensuring that the patient’s voice is heard. Please contact your provincial MLA (and Federal MP) to remind them that patients are voters and deserve to be treated with respect and to be involved in decisions impacting them.

From DIA today.

Ardea Announces Positive Results For Potential Gout, Hyperuricemia Drug In Midstage Trial

The AP (6/19) reported, "Ardea Biosciences Inc. on Friday announced additional positive results from studies of its potential gout and hyperuricemia treatment, RDEA594." The company "said a mid-stage study showed that for 60 percent of patients given the highest dose tested, the levels of uric acid in their blood returned to normal."

And Dow Jones Newswire (6/19, Xu) noted that in an earlier study, the drug showed a 100% response rate when patients received the drug combined with allopurinol. MedPage Today (6/18, Susman) also covered the story.

Febuxostat Outperforms Allopurinol As A Treatment For Gout

Recently MedPage Today (6/19, Susman) reported that "gout patients treated with febuxostat (Uloric) at a dose of 80 mg or 120 mg daily saw greater declines in serum urate levels than those treated with allopurinol 300 mg," according to research presented at the European League Against Rheumatism meeting. Investigators found, "at the patients' final clinic visit," that "75% of those treated with febuxostat 80 mg/day achieved urate-lowering to a goal of less than 6 mg/dl, but only 38% of patients taking allopurinol 300 mg/day achieved that goal." Meanwhile, "among those taking febuxostat 120 mg/day, 79% of patients achieved the goal."

High Number Of Deaths In Patients Receiving Adalimumab For Early RA Mar Otherwise Promising Results

As well, MedPage Today (6/19, Gever) reported that "an unexpectedly high number of deaths in patients receiving adalimumab (Humira) for early rheumatoid arthritis in a planned 78-week trial marred otherwise promising results, according to data presented" at the European League Against Rheumatism meeting. Altogether, "six patients among 515 randomized to adalimumab plus methotrexate died during the placebo-controlled, international OPTIMA trial's first 26 weeks, compared with one of 517 assigned to methotrexate alone, Josef Smolen, MD, of the Medical University of Vienna, reported." Besides "the early deaths, the trial has yielded favorable interim results for the tumor necrosis factor inhibitor in methotrexate-naive patients, according to Smolen's report."

Investigational Biologic Drug Effective Against RA In A Phase II Trial

In MedPage Today (6/18, Gever) it was reported that "an investigational biologic drug that inhibits B cells in a way different from rituximab (Rituxan) was effective against rheumatoid arthritis in a phase II trial, according to" research presented at the European League Against Rheumatism meeting. Investigators found that "up to 42.4% of RA patients treated with LY2127399 for 16 weeks showed 50% symptom reduction according to American College of Rheumatology criteria (ACR50), compared with 8.8% of a placebo group."

Researchers Report Modest Benefits For Lupus Patients Receiving Belimumab

Research - MedPage Today (6/18, Gever) reported that "final results from the closely watched BLISS-76 trial of belimumab (Benlysta) for systemic lupus erythematosus suggested the drug was better than placebo but not by much, it was reported" at the European League Against Rheumatism meeting. Researchers, "in the first scientific presentation of 76-week data from the phase III study...said about 39% of patients on the investigational drug achieved a response according to the primary outcome measure, compared with 32.4% of those treated with placebo." While "the difference was not statistically significant," there were "significant...improvements relative to placebo in several secondary endpoints and evidence that the drug was 'generally well tolerated' through the 18-month study."

Submitted by Anne Dooley 2010 06 21

A recent Medscape (6/23, Goodman) reported that "etanercept achieved significantly more improvement in magnetic resonance imaging (MRI)-detected active inflammatory lesions of the spine than sulfasalazine in patients with early active axial spondyloarthritis (SpA), according to the results of the 48-week randomized controlled ESTHER trial, which were reported here at the European League Against Rheumatism (EULAR) Congress 2010." Lead author In-Ho Song, MD, said, "The significant effect of etanercept on inflammation that we saw on MRI had a good correlation with clinical data. No correlation was seen between MRI findings and clinical data for those treated with sulfasalazine."

Submitted by Anne Dooley 10-06-24

Recently MedPage Today (6/23, Gever) reported that "cutting rheumatoid arthritis patients' etanercept (Enbrel) doses in half after they achieved remission cut adverse and treatment costs dramatically without compromising the clinical effectiveness of maintenance therapy, a researcher reported" at the European League Against Rheumatism annual meeting. During "a prospective, controlled study, disease activity remained low in 81.6% of patients put on low-dose etanercept (25 mg once weekly) for a mean of 2.6 years after achieving remission on the standard dose (25 mg twice weekly) -- virtually the same rate as in patients maintained without dose reduction." Additionally, "switching to a low-dose maintenance regimen reduced annual treatment costs by an average of €562,000 annually ($685,000) relative to the standard-dose regimen."

Submitted by Anne Dooley 10-06-24

In MedPage Today (6/23, Susman) there was a report that "findings from two small studies of the investigational drug, tranilast, suggest that the drug is well tolerated and effective for lowering serum uric acid." MedPage Today added, "Measurable and significant differences in serum uric acid and in uric acid secretion were observable as soon as four hours after the experimental uricosuric, tranilast, was orally administered to subjects in the study, said John Sundy, MD, of the Duke Clinical Research Institute," who "reported results from two small trials of healthy volunteers in a poster at the European League Against Rheumatism meeting."

Submitted by Anne Dooley 10-06-24

The AP (6/24) reports that "Pfizer Inc. said Wednesday it has suspended clinical trials of its drug tanezumab as a potential osteoarthritis treatment, after some patients' conditions worsened." The drugmaker "said it halted the worldwide program following a request by the Food and Drug Administration after reports of a 'small number' of patients experiencing more severe osteoarthritis that led to joint replacement."

And Bloomberg News (6/24, Armstrong) reports that the agency has also "asked the company to show data on potential effects in clinical studies of the drug among patients with cancer pain, interstitial cystitis, chronic low back pain and painful diabetic peripheral neuropathy, Pfizer said." The FDA "will then decide whether to halt Pfizer's remaining trials of tanezumab after reviewing company data." However, "trials for other conditions haven't reported similar adverse events, MacKay Jimeson, a Pfizer spokesman, said."

In addition, The Wall Street Journal (6/24, Solsman, Rockoff) reports the drugmaker recently reported that patients using the drug for knee pain related to osteoarthritis had positive responses. Reuters (6/24, Berkrot) also covers the story.

Submitted by Anne Dooley 10-06-24

Wilfrid Laurier University has started an investigation into the affects on balance of Omega-3 fatty acids in individuals suffering from arthritis, and are looking for your help.

The purpose of this study is to quantify the effects of fish oil supplements on the functional balance abilities of a group of individuals affected by arthritis, to provide a wealth of knowledge above and beyond the simple evaluations of pain (whether self-reported or physician observation) that has currently reported in the literature. There will be a total of 40 participants (aged 50 to 70): 30 with diagnosed arthritis and 10 age-matched older adults without arthritis. The supplement that some participants receive may not contain any fish oil, this is required to document any effects not directly related to the fish oil supplement. The supplement will be taken as a daily dosage (an average of 4 grams, dependent on body mass) over a 16-week period. Bloodstream levels of fatty acids, lipids and cholesterol will be evaluated prior to the start of the study (Week 0), 8 weeks into the study and at the end of the 16 weeks using a fingertip prick method for blood samples. Also at these same time points, diet analysis will be performed, questionnaires pertaining to fear of falling, activity levels and medication usage will be administered, along with evaluations of joint inflammation, pain, footwear/orthotic usage, strength and functional balance (during gait) will be performed. Functional walking mechanics and balance will be determined during compensatory reactions in response to unexpected perturbations while walking; these will be determined via three dimensional motion analysis and inverse dynamics.

All tasks will be done on the Wilfrid Laurier University campus. Prior to the start of the study and at the end of the study each participant will be evaluated for sensory (touch, vision and vestibular) and muscular function. Additionally, we will track falls using weekly postcards. To measure the impact on quality of life, a small number of participants will be involved in one-on-one interviews before and after the 16-week period. A separate informed consent will be signed before the interviews or focus groups take place.

The research will be conducted under the direction of Dr. Stephen Perry at Wilfrid Laurier University.

Please contact Kristen McFall, M.Sc., B.Sc., Research Associate
Kinesiology and Physical Education, Wilfrid Laurier University >BR> 75 University Avenue, Waterloo, ON N2L 3C5, CANADA
Tel: 519-884-0710 ext. 2516 Lab: 519-884-0710 ext. 3298
Email: kmcfall@wlu.ca

Adults needed for Online Survey about Arthritis and Physical Activity

Researchers in the College of Kinesiology at a the University of Saskatchewan were given a multi-study research grant by the Social Sciences and Humanities Research Council of Canada (SSHRC) in order to better understand what may or may not keep women with arthritis from doing physical activity.

Who can participate in this research project?
You can participate if you are an adult, at least 21 years of age, and a doctor has told you that you have arthritis.

How do I get involved?
To participate, you will do an online survey and a short follow-up survey 2 weeks later. The survey will ask you a number of questions about physical activity and your arthritis. All participants and their answers will be anonymous. (The University of Saskatchewan Research Ethics Board has approved this study: Beh # 05-230.)

How much time will this take?
The first survey will take about 25 minutes, and the second will take 15 minutes. It is an online survey that can be filled out from any computer.

What good will result from this research?
Arthritis is one of the most common chronic diseases in North America. There is no cure for arthritis - but we do know that regular physical activity will help people with arthritis feel better. We are trying to figure out what keeps or doesn’t keep adults from doing activity. Once we know this, we can then better help women do activity more regularly and feel better in the long-term.

How can I do the survey?
You can access the online survey by copying and pasting the following web address into your internet browser:

Online Survey about Arthritis and Physical Activity

Questions?
You may contact the project coordinator, Michael, by emailing arthritis.survey4@usask.ca, or the lead researcher, Dr. Nancy Gyurcsik, by telephone (1-306-966-1075) or email (nancy.gyurcsik@usask.ca).

Thank you very much!

Michael Secora B.Sc.
Research Coordinator
College of Kinesiology, University of Saskatchewan
arthritis.survey4@usask.ca

Health Canada has launched a new Consumer Side Effect Reporting Form to make it even easier for consumers to report side effects to drugs and other health products to the Canada Vigilance Program. Read the announcement.

Consumer Side Effect Reporting Announcement

Here is a link to the Consumer Side Effect Reporting Form

Reporting side effects, also known as adverse reactions, is important to health product safety. Each report may contribute to improving the safe use of health products - including prescription and non-prescription drugs, and natural health products.

A new poll has been published, regarding the changes in pharmacy fees in Ontario. Please participate.

CAPA has supported a research project which has produced an excellent handbook on Self-Employment with Disabilities. Check it out in our Research page under Education

We are announcing some new and exciting updates for the Canadian Arthritis Patient Alliance. We are launching a new CAPA Facebook page where you will have the opportunity to become a fan. As a fan you will receive regular updates with tips, articles, news and resources. As well we will be sending out a monthly update to your e-mail addresses with tips, articles, news and resources. There will also be opportunities for you to share with us your experiences, ideas and suggestions on different arthritis issues. So please check out our new Facebook page and become a fan.

Notre nouvelle page Facebook!

Voici une nouveauté à l’Alliance canadienne des arthritiques. Nous lançons notre nouvelle page Facebook à laquelle vous pouvez vous inscrire en cliquant sur le lien suivant : Facebook | Canadian Arthritis Patient Alliance. En devenant fan de cette page, vous pourrez recevoir régulièrement des nouvelles, des conseils, des liens vers des articles et plusieurs autres ressources. Nous vous enverrons également par courriel un bulletin mensuel comprenant ces mêmes informations. Nous vous invitons aussi à partager avec nous vos expériences de vie, vos idées et vos suggestions sur les différentes questions qui concernent l’arthrite. Inscrivez-vous alors à notre nouvelle page Facebook!