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Posted by capa on April 29, 2014

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2014

September - News release on the Arthritis Patient Charter.

2013

March 22, 2013

CAPA Annual General Meeting
Notice of The Canadian Arthritis Patient Alliance Annual General Meeting
March 27, 2013, 5:00 pm ET

Dial in information:

Toll free Dial-in: 1-866-512-0904 Participant Pass Code: 4930414

  1. Welcome
  2. Review and approval of the agenda
  3. Fiscal 12 Compiled Financial Statements and Notice to Reader
  4. Appointment of Auditors
  5. Report of Directors
  6. Election of New Directors
  7. Other Business
  8. Meeting Adjournment

 

2011

December 10, 2011

Messages from the Canadian Pain Coalition

To kick off National Pain Awareness Week 2011, the Canadian Pain Coalition hosted two symposia entitled Transitions: Living Well with Chronic Pain.

The events, held in Saskatoon on November 5 and Calgary on November 6, were very successful with over 200 attendees at each location. We are emailing you today to let you know that we have updated the Live Well With Pain site with insights, videos, discussion summaries and more collected from both events.

We hope that you will find the information and resources on the site to be helpful for you in managing chronic pain more effectively. We ask that our member organizations and health professional members share this site with their members and clients so that as many Canadians as possible can benefit from the knowledge and expertise of the pain experts who were involved in the symposia.

What will people discover when visiting Live Well With Pain?

During the events, attendees participated in group workshops where they had an opportunity to brainstorm ideas for managing pain by using a pain plan. These strategies and a template of the pain plan can now be found online, as well as resources including a pain journal. We have included information about how to get involved and add your voice to the national discussion to ensure chronic pain is recognized and managed more effectively.

There are also a number of videos available online. The first is a video taken from the Calgary symposium that includes clips from the speaker presentations and relaxation session.

The second set of videos includes our pain experts answering questions submitted by event participants. This is a great video series about managing pain. We expect our members will find them interesting and helpful to watch.

We encourage you to go through the site and please share the link with anyone who is touched by pain.

 

October 31, 2011

Arthritis is a $33 Billion Burden on Canadians - Contact Your Political Representatives

From the Arthritis Alliance of Canada. The Canadian Arthritis Patients Alliance strongly urges you to read the report and then to contact your Federal and Provincial politicians to demand action on this crisis now. 

New Report Indicates Arthritis is a $33 Billion Burden on Canadians 

Arthritis Alliance of Canada Calls for Governments, Healthcare Communities to Work Together 

**QUEBEC CITY, Oct. 27, 2011 /CNW/ **- Although it has been described as an invisible disease, the impact of arthritis on the Canadian economy can't be ignored. A new report from the Arthritis Alliance of Canada (AAC) estimates that osteoarthritis (OA) - the most prevalent form of the disease - and rheumatoid arthritis (RA) costs the Canadian economy $33 billion through (direct) healthcare expenses and (indirect) lost productivity and taxes. The Impact of Arthritis in Canada: Today and Over the Next 30 Years provides a detailed look at the impact of arthritis and offers solutions on how to mitigate and manage the situation.

The report reveals many surprising findings about the prevalence of arthritis in Canada now and in the future, and the overall cost of the disease to the healthcare system, including:

  • There are currently more than 4.4 million people living with OA. In 30 years, more than 10 million or one in four Canadians is expected to have OA. Within a generation (in 30 years), there will be a new diagnosis of OA every 60 seconds.
  • There are currently more than 272,000 people living with rheumatoid arthritis (RA), comprising 0.9% of the Canadian adult population, which will increase to 1.3% over the next 30 years.
  • At present:
    • Arthritis drives $12.6 billion in direct healthcare costs ($10.2 billion for OA; $2.4 billion for RA) which represents healthcare expenses
    • Arthritis drives $20.6 billion in indirect healthcare costs ($17.3 billion for OA; $3.3 billion for RA) which represents lost productivity and taxes

Which means that based on 2010 data, the burden of arthritis on the Canadian economy is $33.2 billion in direct and indirect healthcare costs. These numbers will only grow.

The report is being unveiled today at a scientific conference, in Quebec City, that brings together 400 members of the Canadian arthritis community who will spend the next two days discussing the findings of the Impact report as well as themes that include: the future of the arthritis community; inflammation in chronic diseases; the patient experience within complex disease management and care; epigenetics; rarer forms of arthritis; and, personalized medicine.

"The findings of this report will come as a shock to some in the arthritis community because the numbers are higher than what we've seen before," explains Dr. Claire Bombardier, Co-Scientific Director of the Canadian Arthritis Network and one of the lead authors on the report. "Unveiling the report at the 2011 Annual Scientific Conference will allow the best minds in the arthritis community to grapple with the issues and work out how the community can move forward together to help patients, support government and alleviate the burden on the healthcare system."

"Too many people dismiss arthritis as an old person's disease," says Dr. Dianne Mosher, Chair of the Arthritis Alliance of Canada and one of the lead authors on the report. "Canadians need to understand that these diseases are painful and debilitating. They can affect anyone, at any age. Arthritis is profoundly affecting individuals in our communities. Over the long-term, it will have a tremendous impact on our healthcare system, labour force and economy. This Report quantifies the very real personal and economic costs of arthritis and outlines some measurable actions we can take today to manage the impact tomorrow."

The Impact report puts forward four potential arthritis interventions to mitigate the burden of the disease and manage the impact arthritis could have, if left unchecked, over the next three decades. Implementing these interventions is expected to save the healthcare system more than $700 million over the next 30 years.

To respond to the findings in the report, the AAC is proposing a National Framework for Arthritis that will increase the efficiency of care and management of people living with the disease; implement effective measures to prevent disease onset; increase awareness of the full cost of arthritis to the individual and society; and, establish priorities for ongoing research.

About the Arthritis Alliance of Canada

The Arthritis Alliance of Canada was formed in 2002 as the Alliance for the Canadian Arthritis Program (ACAP). Its goal is to improve the lives of Canadians living with arthritis by working toward improved access to care and treatment, broadened education of the arthritis community and public and health policy makers, as well as increased arthritis research.

The Alliance includes more than 20 member organizations from across Canada, bringing together arthritis consumers and consumer organizations, arthritis health care professionals, researchers, funding agencies, governments, voluntary sector agencies and industry. While each member organization continues its own work, the Alliance provides a central focus for national arthritis-related initiatives.

About the Canadian Arthritis Network

The Canadian Arthritis Network (CAN) is a not-for-profit organization, funded by the Government of Canada's Networks of Centres of Excellence (www.nce.gc.ca), to support arthritis research and development and to facilitate the commercialization of its Network Investigators' discoveries. CAN is the single point of contact that links over 200 leading Canadian arthritis researchers and clinicians, 45 Canadian academic institutions, The Arthritis Society, pharmaceutical and biotechnology companies, and government.

BACKGROUNDER

The Impact of Arthritis in Canada: Today and Over the Next 30 Years
Research Report Released by the Arthritis Alliance of Canada

LIVING WITH ARTHRITIS: A DAILY STRUGGLE

Arthritis is a chronic disease with devastating and debilitating effects for the more than 4.6 million Canadians who live with it. The Impact of Arthritis in Canada: Today and Over the Next 30 Years report focuses on the two main forms of arthritis:

  • Osteoarthritis (OA) a progressive disease where joint tissues are unable to repair themselves resulting in significant damage to cartilage and bone; and
  • Rheumatoid Arthritis (RA) the most common form of inflammatory arthritis that affects the joints in the body.

Over the next 20 years, the number of Canadians with OA is expected to double from 4.4 million to more than 10 million or one in four Canadians. Currently, there are more than 272,000 people living with RA, comprising 0.9 per cent of the adult population. The number of Canadians diagnosed with RA is expected to increase as Canadians age and by 2040 is projected to comprise 1.3 per cent of the population.

MANAGING THE IMPACT OF ARTHRITIS

Arthritis directly affects the Canadian economy since the disease can result in disabilities that impede an individual's ability to fully participate in the workforce. Today, 1 in 8 workers (11.93 per cent of the Canadian workforce) has OA and one in 136 workers has RA. The Arthritis Alliance of Canada's report estimates that OA alone costs the Canadian economy $27.5 billion (in direct and indirect costs). That number is expected to more than double in the next 20 years. Add that to the $5.7 (in direct and indirect costs) for RA and the total current cost of arthritis to the Canadian economy is $33.2 billion. These numbers will only grow.

The report also finds that if potential interventions and strategies are implemented, it would not only result in significant direct and indirect cost savings of valuable health care dollars, but also and more importantly, reduce the burden and consequences of the disease for Canadians living with arthritis. Four potential targeted interventions are examined in the report: three for OA and one for RA.

Osteoarthritis

  • Total Joint Replacement (TJR) intervention
  • Reduction of obesity rates in Canada
  • Adequate pain management strategies

Rheumatoid arthritis

  • Early diagnosis and treatment with cost-effective Disease Modifying Anti-Rheumatic Drugs (DMARDs) and for those who do not respond to traditional DMARDs, access to Biologic Response Modifiers (Biologics) for RA

The four interventions identified in the report are only the beginning of what needs to be done.

BUILDING A NATIONAL FRAMEWORK 

Based on the findings of the report, the ACC hopes to work with governments and the broader healthcare community to build a National Framework for Arthritis. The Framework will establish research priorities and strategies, identify principles to guide the design and delivery of care, suggest prevention strategies, and propose an ongoing mechanism for the arthritis community to dialogue with governments and the broader healthcare community. To date, the arthritis community has done a lot of work to collaboratively identify solutions. The next step is for governments and the broader healthcare community to engage in the discussion. We need the support of both these groups to ensure we are able to achieve meaningful change.

Now is the time.

For further information:

For more information about the Impact of Arthritis Report, the Arthritis Alliance of Canada, or to schedule interviews with Alliance members please contact: 

Megan Spoore
Edelman
416-849-2841
megan.spoore@edelman.com

To download a copy of the Report, please visit www.arthritisalliance.ca

For more information about the 2011 Annual Scientific Conference, please contact:

Stacey Johnson
Director of Communications
Canadian Arthritis Network
October 26-30, please call 416-712-4448 (cell)
sjohnson@mtsinai.on.ca
www.arthritisnetwork.ca

Visit us on Facebook

 

October 19, 2011

Health Gateway

Your link to living well with chronic conditions and disabilities

A cross-sector collaboration to empower people and their caregivers to navigate the maze and live well with complex chronic conditions and episodic disabilities

People living with complex chronic illnesses and episodic disabilities need help to access and navigate the healthcare system and beyond; including the maze of disability income, social services, and information needed to live well while living with their conditions.

Health Gateway Healthgateway.ca is an Ontario-focused, accessible web-based e-library, for people living with complex chronic illnesses and episodic disabilities and their caregivers that connects them to the resources that meet their needs, wherever they are in their care journey.

Health Gateway facilitates access to important information that people need to manage their health and daily living needs including housing and employment information, income support, equipment, services, support and funding. It links users to a broad range of information from vetted and approved sources.

Whether in hospital, rehab, or in the community, the Health Gateway portal helps people living with complex illnesses and episodic disabilities and their caregivers navigate the maze of services and supports across the care continuum to get them the answers they need quickly. It is also a tool for healthcare and other professionals to support their clients. In a recent survey, users described Health Gateway as a “one-stop-shop that will make it easy for people to find what they need”.

Funded in part from the Ontario Trillium Foundation, an agency of the Government of Ontario, and Sun Life Financial, Health Gateway is the result of collaboration between Bridgepoint Health and the Canadian Working Group on HIV and Rehabilitation (CWGHR).

 

September 26, 2011

Webinar September 28 on Reducing Pain

Join the webinar "Mindfulness Based Stress Reduction as a Strategy in Reducing Pain" on September 28th.

This 45 minute webinar, co-sponsored by the Canadian Institute for the Relief of Pain and Disability, Pain BC and the Canadian Pain Coalition, will provide an introduction to the power of mindfulness based stress reduction (MBSR) as a simple technique that can be employed in a variety of ways to improve overall wellness and to help in managing chronic pain. 

The webinar is being held on September 28th, 2011 - 2:00 PM (PDT).

Register @ http://cirpd.org/GetInvolved/Webinars/Pages/MBSRWebinar.aspx

 

Call for Female Participants - Research Study in Edmonton

Art Therapy for Relief of Physical and Existential Pain in Women Diagnosed with Rheumatoid Arthritis

Researcher: Mady Mooney

You are invited to be part of a research study that will explore the potential of art therapy to relieve pain for women with rheumatoid arthritis. The study will be undertaken by Mady Mooney as a requirement for her degree in the Master of Arts in Pastoral Psychology and Counselling program (Art Therapy specialization) at St. Stephen's College.

What would be your role in the study? 
If you participate in this study, you will take part in a four-hour workshop with 7 other women. With the guidance of two experienced facilitators, you will make two works of art (mandalas) using paint or colouring pencils. After the first mandala, you will do some journalling.

A week or two after the workshop, you will participate in a one-hour interview about what you experienced during the workshop.
Absolutely no art experience is required! If you’ve never done this kind of thing before, it’s an opportunity to do something new that’s easy and fun. 

To participate in the study, you must be:

  • female,18 years old or older
  • diagnosed with rheumatoid arthritis
  • experiencing pain, flare-ups, or chronic pain
  • able to speak and understand English
  • able and willing to engage in art making
  • willing to have a post-workshop interview

Participation in this study is voluntary.

For more information please contact:
Mady Mooney, 780-242-6065, or E-mail madymooney@gmail.com

This study has been approved by the St. Stephen’s Research Ethics Committee and is being conducted under the supervision of Dr. Pamela Brett-MacLean, Director, Arts & Humanities in Health & Medicine Program in the Faculty of Medicine & Dentistry at the University of Alberta (pbrett-maclean@med.ualberta.ca)

 

Fall Pain Forums - Sault Ste. Marie, Niagara Falls, Kitchener

Canadian Pain Coalition presents:

FALL PAIN FORUMS

Learn from Pain Experts:

  • the myths and facts of chronic pain
  • how to manage your pain
  • how to communicate about your pain

This event is FREE. Donations to the CPC Pennies for Pain Campaign are welcome. Join CPC for a public forum near you.

Register online at www.chronic-pain.ca

  • September 28, 2011 - Sault Ste. Marie
  • October 4, 2011 - Niagara Falls
  • November 10, 2011 - Kitchener

For more information, download:
CPC_FALL_PAIN_FORUMS,_2011.pdf

 

September 24, 2011

YHES Study - Looking for Participants

YHES! The Young Adult, Health & Employment Study

Young adults between the ages of 18 and 30 years living with juvenile arthritis and lupus are invited to participate in an online survey about the experience of finding and keeping paid work. This study is being conducted out of the Dalla Lana School of Public Health at the University of Toronto and the University Health Network. 

All Canadian young adults living with juvenile arthritis or lupus are encouraged to participate, whether they are employed, not currently working or have never held a job. 

For more information on how to participate, please contact:

Arif Jetha
Toll Free: 1-855-469-4540
Email: yhes@uhnresearch.ca
Website at www.yhes.ca

 

Chronic Pain Management Workshop 

Based on the Arthritis Self-Management Program, this workshop introduces participants to self-management skills and the principles of pain-management.

Date: Thursday, September 29, 2011
Time: 1:00 pm - 3:00 pm
Venue: Kitsilano Community Centre
2690 Larch Street, Vancouver 

Cost: FREE

To register for this program click here or call 604.714.5550

 

2010

November 11, 2010

Free Lecture (Toronto) Sponsored by The Arthritis Society - NOV. 25
The most exciting time ever in the history of the treatment of Rheumatoid Arthritis

KEYNOTE SPEAKER: Dr. Edward Keystone, MD, FRCPC
Professor of Medicine, University of Toronto
Director, The Rebecca MacDonald Centre for Arthritis and Autoimmune Disease, Mount Sinai Hospital

ATTEND THIS FREE LECTURE TO:

  • Get an overview of rheumatoid arthritis and hear recent research updates
  • Discover new treatment options to help better manage this disease
  • Learn about the programs and resources offered by The Arthritis Society

DATE: Thursday , November 25, 2010
TIME: 7:00 p.m. to 9:00 p.m.
LOCATION: InterContinental Hotel
Ballroom A and B
225 Front Street West, Toronto

Register today at 1.800.344.6926
Don’t miss out! Space is limited.

The_Arthritis_Society_-Keystone_Forum-_Nov_25_2010.pdf

 

November 9, 2010

Employment and Episodic Disability - Focus Group Participants Needed

Human Resources and Social Development Canada (HRSDC) & The Société de recherche sociale appliquée /Social Research and Demonstration Corporation have commissioned a project to explore the employment experiences of people in Ontario who have disabilities and the capacity to work intermittently.

An important part of our research is a series of focus groups with people who have a disability and who experience irregular or intermittent employment. We are planning to hold focus groups in late November in Ottawa, Toronto and North Bay.

The focus groups themselves would last approximately two hours, and participants would receive a small honorarium ($30) in recognition of their time. As with all SRDC research, the focus groups will be conducted in accordance with the strictest requirements for ethical research practice, including protection of participants’ privacy and confidentiality.

Please contact Heather Fowler at hsmithfowler@srdc.org for further information.

You can also visit Social Research and Demonstration Corporation for more information about the Society.

 

November 2, 2010

ACTION Ontario: Patient Input for System Change

ACTION Ontario invites you to attend:

Patient Input for System Change 
A symposium on neuropathic pain

When: Tuesday, November 9th, 2010 
1:30 - 4:30 p.m.

Where: MaRS Auditorium 101 College Street, Toronto

Refreshments will be served following the event.

For more information, and to RSVP, please email email@actionontario.ca

 

October 12, 2010

World Arthritis Day is TODAY - October 12, 2010

Today is World Arthritis Day and although events in North America seem to be few and far between, take a look at what is happening around the world at World Arthritis Day

 

Health Canada's Food and Drugs Act Liaison Office (FDALO) - Report on Activities (Mar 2008-10)

Executive Summary

Over the past two years, the Food and Drugs Act Liaison Office (FDALO) has:

  • given a voice to stakeholders who have had difficulty being heard by the department;
  • helped staff build competencies in better managing difficult relations with stakeholders;
  • promoted openness and transparency in the regulatory process; and
  • provided feedback on trends to contribute to the continuous business improvement of regulatory processes under the Food and Drugs Act.

This report presents an overview of FDALO's activities during its first two years in operation and sets out key objectives for the way forward.

See the report at: FDALO Report on Activities 2008-10

 

October 4, 2010

Call for Assistance - Ulorix for Gout

CAPA along with The Arthritis Society is asking patients for their input into their experience with a new drug for Gout.

A second drug indicated for arthritis (gout) - Febuxostat/Uloric (manufactured by Takeda) - is up for Common Drug Review consideration. This has triggered a request for submissions from registered patient groups. The Arthritis Society will be making a submission.

CAPA Members (and Concerned Canadians) are requested to help identify people who have had experience with this new drug or who have experience with gout and to ask them to provide input. The deadline for submission is Nov. 15 so to allow time for the submission to be prepared in the required format TAS will **need the input by Nov. 2. **

If you can help with this (or can forward this to people who are interested), please read the attached and respond directly to:

The Arthritis Society advocacy@arthritis.ca

10_10_03_Call_for_input_-_TAS.doc

 

September 22, 2010

Volunteers Needed - Dads with Arthritis
Dads with Arthritis needed for Study

The University of British Columbia Department of Occupational Science & Occupational Therapy & The Arthritis Research Centre of Canada

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.

To volunteer, or for more information, please phone us at 604-871-4564 or e-mail catherine.backman@ubc.ca , or the project’s summer research student Alana at alongson@arthritisresearch.ca

UBC-ARC_Volunteers_Needed.doc

 

Health Canada's Adverse Reaction Advice
**ACTEMRA (tocilizumab) **- Risk of Fatal Anaphylaxis - Hoffmann-La Roche Limited 

The first case of fatal anaphylactic reaction has been reported in association with the use of Actemra in a rheumatoid arthritis patient.

Actemra_PC_English.pdf

 

Do we need Universal Pharmacare in Canada NOW?

On September 13, the Canadian Health Coalition co-released with Canadian Centre for Policy Alternatives a groundbreaking new report, The Economic Case for Universal Pharmacare. The report lays out the formula for a Pharmacare program that not only offers coverage to all Canadians, but could save up to $10.7 billon in spending. The report has garnered the endorsement of eminent doctors, economists and researchers.

We need you to take a moment right now and email the Prime Minister. It only takes 2 minutes. The Prime Minister needs to know that Canadians have waited long enough and expect the federal government to work with its provincial and territorial partners to provide the leadership required to create a fair and effective public drug plan for all Canadians.

Click here to email the Prime Minister

In solidarity, 

– The Canadian Health Coalition Team

 

August 30, 2010

Beware excessive use of energy drinks or mixing them with alcohol
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 To Delay Cheaper Generic Drugs in US

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?

 

UK's NICE Updates Drug Guidance For RA Patients; Approves New RA Drug

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.

 

August 12, 2010

Treatment of rare disorders: US and Europe encourage innovation and access while Canada lags

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.

International Comparison of Public Reimbursement of Products for Unmet Needs.jpg

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

 

Canada Slow to Adopt Innovative Medicines

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."

----------------------------------------------------

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

 

August 11, 2010

Dads with Arthritis Needed for Study

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.

To volunteer, or for more information, please phone us at 604-871-4564 or e-mail Catherine Backman , or the project’s summer research student Alana at alongson@arthritisresearch.ca

To view the full Research Protocal, refer to the attached document:

Research_Protocol_outline-emailed.doc

 

August 3, 2010

Life with Arthritis in Canada: A personal and public health challenge

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.

 

July 27, 2010

Calling All Advocates

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 CAPA Secretary 
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

 

July 24, 2010

Life with Arthritis in Canada Published

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.

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.

This report reflects the commitment of the Public Health Agency of Canada and the organizations and individuals which have collaborated on this report to provide the much needed information on arthritis to policy makers, health care providers, volunteers and the public. I would like to thank them for their ongoing commitment to the reduction of the burden of arthritis for all Canadians.

I encourage you to use this report within your areas of interest or expertise to improve the health of Canadians.

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


July 15, 2010

RA Drug's Warning Label Expanded to Include Possible Fatal Liver Damage

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

 

Mark Your Calendars - October 12 is World Arthritis Day

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

 

Communications from WHO's Health Professional Global Network

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

 

POWER: Project for an Ontario Women's Health Evidence-Based Report

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

 

Have Rheumatoid Arthritis?

**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.

 

OA in Moose?

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's White Paper on Diversity

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.

 

Canadian Institutes of Health Research (CIHR) News

** 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 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

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.

 

International Alliance of Patients Organization (IAPO)

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

 

July 13, 2010

BC to Cut Prices on Generic Drugs - CAPA's Position

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.

 

July 3, 2010

Research & RA, Gout, Lupus
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 Belimuma

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

 

Etanercept Outperforms Sulfasalazine in Individuals with Early Active Axial Spondyloarthritis

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


Reduced Etanercept Doses May Be Beneficial For RA Patients After Achieving Remission

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

 

Investigational Drug Tranilast May Be Well Tolerated, Effective For Lowering Serum Uric Acid

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


Pfizer Suspends Clinical Trials of Tanezumab as Potential Osteoarthritis Treatment

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


Omega-3 Fatty Acids Study - Call for Volunteers (Waterloo ON area)

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


July 2, 2010

Adults Needed - Online Arthritis Survey

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

 

New Consumer Reporting Form

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.

 

New Poll

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


April 7, 2010

New Handbook on Self-Employment with Disabilities Published

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


March 24, 2010

Join CAPA on Facebook!

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.


February 27, 2010

Obesity and Physical Inactivity Linked to Higher Prevalence of Arthritis

An arthritis study has recently been published, comparing the prevalence and risk factors for arthritis and AAL (arthritis-attributable activity limitations) in Canada and the US. The study suggests obesity and physical inactivity may be the reason for higher arthritis and AAL diagnoses in the US.

Read more about the study.


February 14, 2010

Search for Youth Grades 9-12 for Study

**SEE BELOW FOR A CHANCE TO WIN 1 OF 10 $20 VISA GIFT CARDS! **

Researchers at the University of New Brunswick are looking for youth to participate in a study about self-esteem in adolescents with chronic illness. Youth in grades 9-12 who have been diagnosed with asthma, arthritis or diabetes are eligible to participate! Participants will have a chance to win 1 of 10 $20 VISA Gift Cards! Participation involves completing an anonymous, online survey that takes approximately 45-60 minutes. Questions are related to youth’s experience with their illness, self-esteem, depression, anxiety, autonomy, and perceptions of parent and peer relationships. Parents are required to consent to participation.

To read more information about this study and/or to participate, please use the following link, or contact the primary researcher Marcie Balch at marcie.balch@unb.ca or her Supervisor, Dr. Diane LaChapelle at dlachape@unb.ca.

Youths Grade 9-12

This project is on file with the University of New Brunswick Research Ethics Board (REB file # 2009-140).


2009

September 29, 2009

Bring your perspective to Cochrane plain language summaries

If you would normally seek out written health information, are not currently a health professional, and can read English, then the Cochrane Musculoskeletal Group wants to hear from you.


September 16, 2009

Hip replacement meets most patients' expectations

Researchers at the Hospital for Special Surgery in New York have found that the vast majority of patients who undergo hip replacement surgery are happy with the results.


September 3, 2009

Arthritis Pain, Research and You: Something to ROAR about!!!

People with arthritis, their families, friends and the general public are invited to the Roundtable On Arthritis Research (ROAR) - a day of discussion about the research being conducted by the Arthritis Research Centre of Canada on topics such as:

  • Hip and knee replacement surgery – How to get the best results.
  • The Internet – What role can it play in early diagnosis and treatment of Rheumatoid Arthritis?
  • Obesity and Osteoarthritis – How does it weigh on your quality of life?
  • Does a team approach to Osteoarthritis by pharmacists, physiotherapists, and family doctors improve care?

ROAR is presented in an interactive format.

Current research is provided by Arthritis Research Centre of Canada scientists and discussed by Patients, the experts who live with the disease.

Join the dialogue: Question, Discuss and Learn

Where: Executive Plaza Hotel & Conference Centre, 405 North Road, Coquitlam, BC

When: Saturday, September 26th from 9:30 am - 3:45 pm

Space is limited

Pre-registration is required
Call The Arthritis Society
(604) 714-5550 or 1 (866) 414-7766


August 17, 2009

Creatively coping with illness: Calling men 18 years of age and older

The University of Saskatchewan needs men who have a chronic illness and who are interested in volunteering for a research study. The following letter from Tara Storie, Graduate Student Department of Educational Psychology and Special Education, is your invitation to participate.

Hello CAPA Members,

I am a graduate student at the University of Saskatchewan, in the School and Counselling Psychology program. I am searching for men 18 years of age or older, who have been diagnosed with a chronic illness at least two years ago, and who are interested in volunteering to participate in a study about creative behaviour and chronic illness. This project is a part of my thesis research to obtain a Masters of Education.

The purpose of the study is to explore the relationship between creative behaviour and stress. If you agree to participate in this study, you will be asked to complete an online survey containing questions about your background, your personal attitudes, your feelings towards various situations, and your involvement in creative activities. Depending on how many creative activities you participate in, it will take approximately 15-30 minutes to complete the survey. The survey will be available online at https://survey.usask.ca/survey.php?sid=15430

If you wish to learn more about this study or have any questions or comments about this study, please feel free to contact me at 966 – 5263 or tajesto@yahoo.ca, or my faculty advisor, Dr. Jennifer Nicol at 306 966-5261 or jaj.nicol@usask.ca. We would be happy to provide more details about this study.

If you wish to participate, you may paste the following link into your web browser:

https://survey.usask.ca/survey.php?sid=15430

Thank you very much for your help.

Sincerely, Tara Storie, Graduate Student Department of Educational Psychology and Special Education University of Saskatchewan.

This research has been reviewed by the Ethics Review Board at the University of Saskatchewan to ensure that it conforms to ethical standards set for research with human subjects. If you have any questions for the Ethics Review Board, please contact the Research Ethics Office at (306) 966 – 2084.


July 30, 2009

Relay Cochrane - Volume 9 has something for everyone

From health decision aids to workplace health, Relay Cochrane - Volume 9 – has something for everyone.


July 10, 2009

UN Convention on the rights of persons with disabilities: Invitation to participate

The federal government is seeking input from Canadians with disabilities and those who are familiar with disability issues to participate in the United Nations Convention on the Rights of Persons with Disabilities (Convention). Your experience and knowledge on these issues make your contribution essential to this process.

 

Health Canada Warning: Specific Formula Arthro-Ace

Health Canada is warning consumers not to use the unauthorized health product labelled as Specific-Formula Arthro-Ace as it was found to contain undeclared dexamethasone and may cause serious health effects. Specific Formula Arthro-Ace is being promoted as a natural health product for the relief of arthritic pain.


April 20, 2009

UCB Rheumatoid Arthritis Scholarship Program

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


March 3, 2009

Wanted: Women with arthritis

The University of Saskatchewan, Department of Kinesiology is seeking adult women from across Canada to participate in their research study on physical activity. Procedures for participation include confirmed diagnosis of arthritis, informed consent by participants and the completion of an on-line questionnaire.


January 23, 2009

Registered Disability Savings Plan

The federal government is offering a first of its kind Registered Disability Savings Plan to assist families in planning for long-term financial security. In-depth information about the RDSP is available at 1-800-O-Canada or on-line at Human Resources and Skills Development Canada. The deadline for contributing to the RDSP for 2008 is March 2, 2009.

 

2008

October 27, 2008

New tool for measuring pain and the link between biology and psychology in reducing pain

Research presentations at the Segal North American Osteoarthritis Workshop included a new tool for measuring pain and the link between biology and psychology in reducing pain.