Honestly RA, an online survey for Americans with rheumatoid arthritis (RA), found that although most RA patients agree that the treatments improve their lives, 80 percent still experience life-altering pain multiple times per week or even daily.
The survey, promoted by Regeneron Pharmaceuticals and Sanofi, included information collected between July 25 and Aug. 8, 2016, from 1,004 adult patients who self-reported they were diagnosed with RA, and whose treatment had progressed beyond just a non-steroidal anti-inflammatory drug.
Honestly RA intended to take an honest look at life with RA from the patient perspective,in order to better understand their needs. It found that respondents — frustrated with their medications — have tried an average four different treatments in the last five years. Even so, 80 percent agreed that treatment did give them more independence and control, and let them spend more time with family and friends.
Although 91 percent of respondents said doctors are their go-to source for information on treatment options, 58 percent confirmed that they delay seeing a doctor right away if their treatment stops working. Some said they thought the symptoms would go away on their own (41 percent of those who delay) or that they didn’t want to switch to a perceived stronger medication with potentially more side effects (37 percent of those who delay).
“The Honestly RA results reveal there is a clear need for more support of RA patients – from management of the disease impact on their life to the conversations that they have with their physicians,” Dr. Olga Petryna, a New York rheumatologist, said in a press release. “Many patients are dissatisfied with their current treatment and express frustration when a switch in treatment is needed. That’s why physicians and the broader support community need to engage those patients who may be struggling to meet their treatment goals in an open conversation.”
RA patients also feel the surrounding community does not support them, with 90 percent saying that because it’s largely an “invisible” disease, others simply have no idea how much pain they are in.
“My pain affects almost every area of my life – work, travel, spending time with friends and family – and it can be frustrating when someone doesn’t understand the impact,” said RA patient, blogger and advocate Angela Lundberg. “I know it can be difficult, but I encourage everyone living with RA to not be afraid of speaking up, initiating a conversation with your doctor about treatment and celebrating all of your little achievements – no matter how small they seem, or how hard they are for someone else to understand.”
The Honestly RA includes a series of sharable illustrations that can be found in the program website.