Battling rheumatoid arthritis – American Ninja Warrior style. #WeAreAllAbel
The TV series American Ninja Warrior (ANW) is a show where contestants compete to win the grand prize by finishing an obstacle course requiring strong, agile and determined athleticism. Contestants must have faith that they can conquer any obstacle put in front of them – the same type of faith some have when battling rheumatoid arthritis. In ANW contestant Abel Gonzalez’s case, this was true in the literal sense.
Abel grew up in Chicago with a rough childhood. His parents married young and had little financial means. In an interview with EverydayHealth, he said: “My dad was abusive. He sold tires at a flea market to try to help us get by. When I was 10, my mom and dad’s fighting escalated.” His parents eventually split up and Abel and his brothers were forced to split up. Abel and his brother were sent to live with family members in Texas, while his two younger brothers stayed behind to live with his mother in Chicago.
“I can remember my younger brothers sitting on the steps as Matthew and I drove away for good. It devastated me to be apart from my younger brothers. I was only 10. I thought that maybe I had caused my parents to get divorced,” Abel added.
Call for patient input on biosimilar infliximab (Merck) for rheumatoid arthritis, ankylosing spondylitis, psoriatic arthritis and plaque psoriasis
Do you have rheumatoid arthritis, ankylosing spondylitis, psoriatic arthritis or plaque psoriasis? We need your valuable input
Health Canada defines biosimilars as biologic medicines that are similar to, and would enter the market after, an approved originator biologic (such as Remicade®).
The Common Drug Review (CDR) is currently welcoming patients and their caregivers to provide input to patient organizations on the manufacturer’s submission for biosimilar infliximab for the treatment of rheumatoid arthritis, ankylosing spondylitis, psoriatic arthritis and plaque psoriasis. The originator biologic, or reference product, is infliximab (Remicade®).
The CDR is part of the Canadian Agency for Drugs and Technologies in Health (CADTH). The CDR conducts objective, rigorous reviews of the clinical and cost effectiveness of drugs, and provides formulary listing recommendations to the publicly funded drug plans in Canada (except Quebec).
To help them make their recommendations, the CDR accepts input from patient organizations and groups, like Arthritis Consumer Experts (ACE). Because patient input is vitally important to government decision-making about medications, we would like to gather your views and share them with the CDR.
Image courtesy of yodiyim at FreeDigitalPhotos.net
A study published in the European League Against Rheumatism Annual Congress last month shows that the incidence of knee and hip replacement declined after the introduction of biologics to national rheumatoid arthritis (RA) treatment guidelines.
The study looked at 30,868 patients diagnosed with RA at the rheumatology department between 1996 and 2011 and compared them with 301,527 controls from the general population. The baseline total knee replacement (TKR) incidence rate per 1,000 person-years was 5.87 for RA versus 0.42 for the controlled group. Prior to 2002, the incidence of total knee replacement increased among RA patients, but started to decrease after the introduction of bDMARDs and their associated guidelines in 2003. In February of 2007, the rate of TKR changed to 1.8 TKRs/1,000 person. Over the study period, the incidence of total knee replacement and total hip replacement increased among the general population controlled group. In contrast, there was a downward trend among RA patients.
Lene Dreyer, MD, from the Center for Rheumatology and Spine Diseases in Denmark, is one of the author the study. Dreyer explained: “Our findings show a clear downward trend in these two operations in RA patients in Denmark since the additions of [biologic disease-modifying anti rheumatic drugs] bDMARDs to treatment protocols. Also, the overall pattern of our findings is in line with those recently reported from England and Wales.”
Below is a video examining the quality of rehabilitation care, specifically in hip and knee replacements: Continue reading →
Arthritis Consumer Experts’ 10th Annual Arthritis Medications Report Card and Medications Guide: The changing landscapes of reimbursement for arthritis medications in Canada
Arthritis Consumer Experts (ACE) has released its 10th Annual JointHealth™ Arthritis Medications Report Card and Medications Guide – the reliable, quick reference tool to help you evaluate where your province ranks in terms of providing reimbursement for medications to treat inflammatory forms of arthritis.
Commenting on the changing landscape for reimbursement of arthritis medications, ACE President, Cheryl Koehn stated: “Any new pharmaceutical policy that promises to deliver significant drug plan savings must do so without compromising patient safety and efficacy. ACE has also consistently advocated that any drug plan cost savings related to changes in policy that affect arthritis medication reimbursement access should be reinvested back to drug formulary budgets to support the listing of new arthritis medicines and other non-medication related initiatives to improve models of arthritis care such as creating rheumatology nursing billing codes.”
The JointHealth™ Arthritis Medications Report Card and Medications Guide gives you information on the most commonly prescribed medications for inflammatory types of arthritis, such as rheumatoid arthritis, axial spondyloarthritis, psoriatic arthritis or juvenile idiopathic arthritis.
ACE is attending this year’s European League Against Rheumatism (EULAR) annual congress in Madrid. The city is currently experiencing above normal temperatures with highs near 40°C and the rheumatology topics inside the convention centre are equally hot. Our first dispatch from the meeting looks at the launch of the “Don’t Delay, Connect Today” early intervention campaign. At a joint session for patients, clinicians, and health professionals, attendees heard how all three groups can contribute to the early diagnosis and treatment of rheumatic diseases.
Commenting on the campaign, Cheryl Koehn, ACE President said: “This campaign, by our colleagues in the European Union, neatly parallels the work the arthritis community in Canada has undertaken through the models care initiatives of the Arthritis Alliance of Canada where we define early identification of inflammatory arthritis and access to care as a key element.”
The EULAR campaign will encourage patients with typical arthritis symptoms to take action and consult their doctors as soon as possible.
At a presentation on the campaign, John Church, CEO of Arthritis Ireland, explained: “With the development of powerful biologic medications, improvements in care pathways for patients and very effective self-care options, early diagnosis and intervention can lead to significant improvement in lifestyle, physical movements, increased well-being, and work force participation.”
Everyday Health featured an article about Cheryl Koehn, Founder and President of Arthritis Consumer Experts. In the article, Cheryl Koehn shares her story to help others with RA learn from the mistakes she made, such as missed symptoms, diagnosis denial, and treatment delays. Below is an excerpt of the Everyday Health feature:
What Rheumatoid Arthritis Taught an Olympic Volleyball Player
Cheryl Koehn, with Molly, an Australian Labradoodle, started Arthritis Consumer Experts to help improve RA education.
Is denial a common response to a rheumatic disease diagnosis? Cheryl Koehn will be the first person to tell you that she had trouble accepting her diagnosis of rheumatoid arthritis (RA). After all, as a teenager, she was already an elite volleyball player, competing with the U.S. Junior National Team. She earned a four-year scholarship at the University of Washington in Seattle. But by age 27, just a few years after playing a competitive sport at a high level, she needed to sit in the handicapped seat on the bus to get to work. “The toughest part of accepting it,” Koehn says, “was that when I began to look into the disease, I didn’t see anyone like me.”
The Lack of Arthritis Education and Awareness
It was this experience that led Koehn to create Arthritis Consumer Experts, a Vancouver-based organization dedicated to helping those with arthritis to increase their health literacy and to understand what they are facing. “I put off treatment for about a year after my diagnosis,” Koehn says. “If my health literacy were much higher then, I probably would have made different choices.”
BC PharmaCare is looking for your input on biosimilar etanercept (Erelzi) for the treatment of ankylosing spondylitis, juvenile idiopathic arthritis and rheumatoid arthritis
Biosimilar etanercept (Erelzi) is now being considered for coverage under the British Columbia Ministry of Health’s PharmaCare program. By filling out a questionnaire on a website called Your Voice, you can provide your input on biosimilar etanercept for the treatment of ankylosing spondylitis (AS), juvenile idiopathic arthritis (JIA) and rheumatoid arthritis (RA). You can give input if you are a B.C. resident and have AS, JIA or RA, a caregiver to someone with AS, JIA or RA, or if your group represents people who live with AS, JIA or RA. Continue reading →
A study published by researchers at the University of British Columbia suggests that rheumatoid arthritis (RA) patients are no longer facing a higher risk of death than the general population. The study analyzed mortality data and looked at death rates among RA patients versus deaths among a control group of the general population.
The study included an estimated 25,000 people. Patients were divided into two groups – the first one was those with RA cases diagnosed between the years 1996 and 2000 and the second group was those with RA cases diagnosed from 2001 to 2006. Researchers looked at and tracked doctor visit records and other patient information through the year 2010.
“Preventing Rheumatoid Arthritis (Pre-RA): perspectives of people with RA, people at risk and of rheumatologists” study
Join the study as a patient with RA or first-degree relative
A research study funded by the Canadian Rheumatology Association’s Initiative for Outcomes in Rheumatology cAre (CIORA) wants to understand the perspectives of people with RA, those at risk of RA and health care providers about potential treatments aimed at preventing rheumatoid arthritis. Arthritis Consumer Experts is a partner organization on the project.
Aged over 18?
Someone with rheumatoid arthritis OR you have a first degree relative (parent, sibling, adult child) with rheumatoid arthritis?
Someone with access to a computer and the internet?
Participate in a new study that will use wearable activity trackers, paired with a new web application, and physical activity counselling to help you get more active!
Rheumatoid arthritis (RA) and systemic lupus erythematosus (SLE) are types of inflammatory arthritis that causes inflammation and deformity of the joints, and affects your immune system. Physical activity can help to decrease pain and disability in joints affected by RA and SLE while benefiting your overall health.
If you are a person living with RA or SLE, and are interested in getting more active, we invite YOU to participate in the OPAM-IA study. Through participating in the OPAM-IA study, you will learn how to get active with RA or SLE. You will be asked to attend an education session, use a Fitbit Flex activity tracker with the new web application, and receive counselling from a registered physiotherapist. The total time commitment for the study is 6 months.
If you are interested, please fill out a 2-minute screening questionnaire.All responses will remain confidential, and you will be contacted by a research staff member within 48 hours to discuss your eligibility further.