“We need you to make sure the arthritis patient voice is heard at the U.S. Food and Drug Administration (FDA)!” affirmed Suz Schrandt, the Arthritis Foundation’s director of patient engagement, in a patients’ call to action. Continue reading Patient Perspectives in Clinical Trials
An annual highlight of the Arthritis Foundation’s Conference of Champions is our Evening of Honors – a time when we celebrate outstanding achievements of our most engaged volunteers and partners.
This year’s ceremony was hosted by Pete Scalia, co-anchor of WBNS 10TV’s “This Morning” news program in Columbus, Ohio. Diagnosed with severe rheumatoid arthritis at age 30, Pete has been very open about the challenges of living with RA and is actively involved with the Arthritis Foundation.
This weekend, the Arthritis Foundation’s most engaged volunteers from around the country are gathering in Baltimore’s East Harbor for the 2018 Conference of Champions. This annual national event is where hundreds of volunteers – joined by other committed Foundation partners and staff – network with each other, share ideas and get energized around plans that will help more people with arthritis live their best life.
Kicking off the conference is Rob Wicall, former San Antonio Spurs Coyote Mascot and chair of that market’s local leadership board for the Arthritis Foundation. Rob will share his own outlook about making others happy and how to convince them that they really can make a difference. We’ll also explore how data collection is helping shape local programs and services for people with arthritis through the new Live Yes! Arthritis Network.
The American College of Rheumatology (ACR) reports there were currently 15,000 attendees representing 106 countries at the 2018 Annual Meeting in Chicago and more than 3,000 abstracts on exhibit. Also on tap: session after session highlighting the newest research and filling in information gaps, and the Arthritis Foundation’s Patient Reps are hard at work going to them and reporting back with their findings and impressions.
Donna Dernier attended a session called “Mechanics of PBMs and Patient Access to Medications.” PBMs, which stands for Pharmacy Benefit Managers, are the groups that work between drug manufacturers and health insurance plans that decide which drugs are in the plans’ formulary, how much they will cost and who will have access. “They are totally opaque, powerful, they use a system of rebates and fees to set the prices. They are largely unregulated,” says Dernier. Thanks to long, complicated forms that medical practices have to fill out, “Lots of practices cannot handle that workload and their patients lose out,” she says. Continue reading ACR 2018 Sessions Include Drug Pricing, OA Treatments, Diet as Therapy
“Patient perspective,” “patient-reported outcomes” and “shared decision making” are hot topics at the American College of Rheumatology (ACR) 2018 Annual Meeting in Chicago. In fact, many patients – including some of the Arthritis Foundation’s patient representatives – are attending the four-day event, which highlights rheumatology developments and draws medical professionals and researchers from around the world.
Donna Dernier, one of the Arthritis Foundation’s Patient Reps, reports that she ran into Hazel Breland, PhD, the incoming president of the Association of Rheumatology Health Professionals (AHRP), a division of the ACR. “She noticed my Patient Rep Sticker and stopped to say how glad she was to see patients involved with so many aspects of health care,” says Dernier.
Besides attending the conference, patients are getting involved in many ways. Four patients affiliated with the Arthritis Foundation exhibited posters during the Patient Perspectives Poster session on Sunday.
- Want to know what other patients have experienced from a specific treatment?
- Dealing with issues your child with arthritis is having in school?
- Has someone else faced a certain insurance issue you’re struggling with?
- What if you just have a tip to share you think others might benefit from?
Those are just some examples of the kind of discussion forum topics you’ll find through the new Live Yes! Arthritis Network. Live Yes! is a hub for the arthritis community. It’s a community where large and small groups gather, to share resources and opportunities that can help everyone live their best life.
Together as a community, we’re working to improve physical health, as well as emotional and social health. We help people with arthritis find strength in each other, manage stress and take control of their health care.
World Arthritis Day is Oct. 12. That’s the day when we come together from around the globe to raise awareness about arthritis, the world’s most prevalent disease. It’s the day we tell the world how arthritis ruthlessly robs quality of life, keeping many people from doing simple, everyday tasks, and often from doing the things they love.
World Arthritis Day is extra special this year because the Arthritis Foundation is officially launching our Live Yes! Arthritis Network. We’ve been working behind the scenes over the past year to create a vibrant, enriching experience for people with arthritis – to help them live their best lives..
As riders of the 2018 California Coast Classic (CCC) Bike Tour made their way into camp on the sandy beachside grounds of Ventura, they were tired, sweaty yet full of energy and smiles. The sounds of cowbells and applause greeted each rider, and soon enough the announcement would come loud and clear from Shannon Marang Cox, CCC Director, and Erin Matthews, CCC Manager. Earlier that morning, the 2018 tour hit the milestone of all milestones – $1 million dollars raised!
This year, 180 participants began their journey from San Francisco’s Pier 39 on Saturday, September 22, along with over 50 volunteers and staff manning tour rest stops along the way. Riders cycled at their own pace and made their way down the coast of California’s famous Highway 1, stopping overnight in Santa Cruz, Monterey, Big Sur, Cambria, Oceano, Buellton, Ventura and eventually crossing the finish line in Los Angeles on Saturday, September 29.
On Saturday, September 22, 2018, the Arthritis Foundation’s 18th Annual California Coast Classic Bike Tour (CCC) began their journey from San Francisco’s Pier 39. About 180 riders embarked on an 8-day, fully supported tour down the coast of California’s famous Highway 1, with stops along the way in Santa Cruz, Monterey, Big Sur, Cambria, Oceano, Buellton, Ventura and crossing the finish line in Los Angeles.
Today, Tuesday, September 25, CCC riders will be cycling 72.8-miles and making their way from Big Sur to Cambria. They will ride through Big Sur’s pine-scented forests and see jaw-dropping coastal sights all the way past Hearst Castle, over the Twin Sisters, and into Cambria.
If you’re a runner AND a parent, we’ve got the ideal opportunity for you to let off some steam, keep the kids entertained and do good for a great cause – Jingle Bell Run! Here are six reasons why it’s the perfect run for you and the kids.