How long did it take for you to see a rheumatologist? How long did it take for you to start treatment for your rheumatoid arthritis (RA)? Weeks? Months?
A new study shows that only 12 percent of people with RA achieve sustained remission. Before you get scared, it’s important to know that this particular study used extremely stringent criteria for remission. A number of factors influence the assessment of how well someone is doing, including the criteria used — some are more stringent than others — and whether the person has other medical conditions, such as fibromyalgia. Still, stringent criteria are the ideal, and the results of the study are sobering.
In the summary of the study, one paragraph positively leapt off my monitor:
“Among patients who were receiving disease-modifying antirheumatic drugs at baseline, those who started within 3 months of symptom onset also had an increased odds of achieving intermittent or persistent remission.”
And this is where we come back to my opening paragraph.
Most people who have RA are not diagnosed within three months of symptom onset. Instead, they may go back to their family doctor time after time, without being identified as possibly having RA. If they’re lucky, the GP knows the subtle signs of RA and is aware that a negative rheumatoid factor blood test doesn’t exclude this diagnosis. But even if you get a referral straightaway, it can take months to actually see a rheumatologist.
While you wait, the disease makes a feast of your body, causing damage. Getting settled. By the time you see a rheumatologist, get a diagnosis, and start treatment, the RA has moved in and is harder to dislodge.
Treatment is another obstacle in your way back to health. Does your rheumatologist follow the aggressive treat to target approach, so crucial in beating back the disease? Some are still stuck in the old pyramid model, going low and slow, while your RA goes fast and hot. Do they make use of Biologics or is the rheumatologist someone who — true story from the community — doesn’t “believe in Biologics”? And can you access financial assistance to use these drugs?
We need change
We need a change.
Every year during May’s Arthritis Awareness Month, we try to raise awareness about what RA is. But perhaps it is time to start raising awareness about what RA does.
We need to take a look at the consequences of the current system: damage, deformity, disability. Loss of productivity, loss of ability to work, participate in the community and your family, and high use of the health care system.
Last year, I attended an event about inflammatory arthritis. There, a rheumatologist said that Biologics should be the gold standard of treatment because they represent the best option for achieving remission. He said that society should invest in funding these medications for people with inflammatory arthritis because it would ultimately save millions, if not billions, in lost productivity and health care costs.
Think about it. Imagine all of us receiving a diagnosis and getting treatment within three months of the symptoms first appearing. Imagine the contribution we would be able to make to the world we live in. To work, to pay taxes, to participate fully in our economy, to not be a frequent flyer in the health care system. And that’s just the economic side of it. On a human and humane level, the ability to be part of the world we live in, to work, to have families, to live without pain and disability, is a worthy goal.
Can we even call it a right?
We need more than change. Fifteen years ago, there was a revolution in treatment when the Biologics were introduced. Yet, we are still stuck in the same old system, the one that didn’t do anything about inflammatory arthritis, because rheumatology didn’t have the capacity to stop the disease. Now there are 15 Biologics on the market and many, many more drugs in development, offering so much hope for the future. Now the approach to diagnosing and treating inflammatory arthritis needs to undergo a revolution, too.
This month, let us all take a step back and look at the big picture. Let’s make sure that it is part of a broader conversation, one that talks about the consequences of holding back and what is possible if we take the leap.
See More Helpful Articles:
Lene writes the award-winning blog The Seated View. She’s the author ofYour Life with Rheumatoid Arthritis: Tools for Managing Treatment, Side Effects and Pain and 7 Facets: A Meditation on Pain.
Lene Andersen is the Community Leader for HealthCentral’s RA Community. Lene (pronounced Lena) is an award-winning writer, health and disability advocate, and photographer living in Toronto. She’s written several books, including Your Life with Rheumatoid Arthritis: Tools for Managing Treatment, Side Effects and Pain, and 7 Facets: A Meditation on Pain, as well as the award-winning blog, The Seated View. Follow Lene on Twitter @TheSeatedView and on Facebook. Watch her story on HealthCentral.