Arthritis Foundation Patient Partners

Daily Dose – Arthritis Foundation Patient Partners Perspective

The Patient Voice in Action
November 13, 2019

Today during #ACR19, our Patient Partners were able to see why having the opportunity to provide patient input can make a difference. Here’s the daily dose of what they learned as the meeting wraps up today & why it matters for people with arthritis.

Patient Engagement in New OA Guidelines
New draft guidelines for the treatment of osteoarthritis (OA) were released and discussed during a presentation today. I appreciated the ACR partnering with the Arthritis Foundation to provide patient input in this process. Although I was not one of the patients on the task force, I was glad to be attending this session in person where they officially released this new information. It provided me the opportunity as a patient to provide feedback and ask a question about the guidelines since I live with osteoarthritis.

“It’s important as patients that we are able to provide input on these types of guidelines, since we’re the ones living with the daily pain.” – Raquel Masco

 

The new guidelines provide an update on what the latest research supports as far as treatment for OA. I had the opportunity to ask why massage is listed as a treatment the research is “conditionally against” for hip and knee OA, especially because I love a good massage. Basically, it can be an effective treatment for some people, but not everyone and this is all based on what quality research is available to support it. Unfortunately, there’s not a lot of good research when it comes to massage for hip and knee OA. It doesn’t mean I won’t still go or that people shouldn’t if it helps you. A lot of the things the guidelines are conditionally against seem to be a big point of discussion for why more research is needed.

That’s why it’s so important for us as patients to raise our voices, raise awareness and raise funding to support more research for arthritis.
By: Raquel Masco

Arthritis Foundation Patient Partners shared their stories in the exhibit booth at the ACR annual meeting. (Pictured from left: Raquel Masco, Kevin Purcell, Shannan O’Hara-Levi and Ife Okwumabua) 

Managing the Difficult-To-Treat RA Cases
During a session titled – How do I manage this Patient? Difficult-To-Treat RA Cases, a panel of rheumatologists discussed crowd-sourced questions regarding multi-level patient needs within the rheumatology practice. As a patient listening in to this discussion, I was interested to hear the vast difference between the rheumatology panel and how they would treat a specific patient.

The discussion of steroid use is a hot topic, as multiple other sessions really focused on this, and was mentioned on this panel. The panelists mostly agreed that prednisone use is a very individualized decision in the course of treatment. The use of steroids among this group is recommended to be in short durations and usually often only used short-term while waiting for other interventions to take effect.

This panel also explored patients of child-bearing age and the use of methotrexate. Interestingly, the topic of methotrexate being prescribed to a male who was attempting to start a family was also discussed and had varying recommendations throughout the panelists. It is widely known that methotrexate is contraindicated in female patients who plan to become pregnant, but biologics are prescribed. This was an important topic especially in a newly diagnosed patient as reimbursement requirements vary for prescribed medications.

 “As a patient, my takeaway from this session was the importance of being an informed patient.” – Shannan O’Hara-Levi

On the panel it was mentioned that there are specific models that rheumatologists usually need to follow however, one stated that there is patient to patient variation and models do not always fit. This seems like a no-brainer to me, however, due to insurance issues, legislation and cost driven intervention, this is a major patient/doctor concern. Price of treatment, especially in newly diagnosed patients and those with specific insurance regulations, is a driving factor to treatment.

Having the opportunity to be here to see these medical professionals’ debate and learn from each other is an amazing experience. Research is constantly changing, and the field of rheumatology is constantly expanding and growing. My recommendation to other patients like me is to ask questions. If something doesn’t feel right to you, then speak up to your rheumatologist.
By Shannan O’Hara-Levi

We’ll recap all the highlights from the Arthritis Foundation Patient Partners from their time at the American College of Rheumatology annual meeting, so stay tuned. Check out the other ACR Daily Dose blogs to read more from the patient perspectives.

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