Why Our RA Isn't All in Remission — Yet

There are more new treatment options and approaches than ever — but not everyone is using them

by Lene Andersen, MSW Patient Advocate

People with rheumatoid arthritis (RA) should be doing better. We have more treatments than ever before, which have led to a change in the approach to treating the condition. Combined, this should mean so many more experiencing remission, or at least lower disease activity. Many more should be able to lead better lives.

Why don’t they?

A trio of reasons

RA is a cantankerous condition. At times, it simply doesn’t respond to the treatments currently on the market. Since we don’t have a test to help identify which treatment would work best, we have to move through a trial-and-error period, often with multiple medications.

The longer you do that, the more it increases the risk of RA-related disability.

Biologics cost thousands of dollars a year, so insurance companies have opinions about which meds you should be allowed to take, requiring you to “fail” other, less expensive options first. If you don’t have insurance, there are other funding sources, but they take time to move through the system, as well.

While you wait, the risk of RA-related disability increases.

And then there’s how RA is treated. Ideally, doctors should follow a treat-to-target method, continually adjusting medication until you are in remission or, if your RA is particularly cantankerous, until a fairly decent level of control has been achieved. This method is recommended in RA treatment guidelines from the American College of Rheumatology. Yet, one recent study showed that of those who reported symptoms indicating heightened disease activity to their rheumatologist, a full two thirds did not have their medication adjusted.

An investment with dividends

I grew up with autoimmune arthritis during a time when there were no treatments. I know first-hand the effects of untreated RA on my own body and have witnessed the debilitating effects of this condition on so many others. We have the tools to avoid that, but they are being unevenly applied.

You can see the effects of properly treated RA in so many people who are working full time, participating in strenuous exercise, having children — all unheard of in the past. Instead, the old method of waiting persists instead of treating RA as a medical emergency, as so many at the forefront of the field consider it to be. The cost of this is devastating, not just on a personal level, but on a societal one, as well.

RA costs our society $19.3 billion a year. Not using the most effective medication and treatment method results in many more people being profoundly affected by RA. It results in disability, serious systemic impacts, complications, and even shortened life spans. RA devours lives — the lives of the person who has the condition, of their family, of friends, colleagues, and community.

Investing in up-front treat-to-target care, including earlier use of Biologics, would be costly. But it would also offset other costs on the healthcare system, lost productivity, and more. And it would protect the lives of the individuals living with RA, their friends and families, colleagues, and community.

It’s a simple calculation. When more people who live with this condition are effectively treated, they go to work, participate in the economy, don’t file for medical bankruptcy, don’t require Medicare before age 65, and don’t become frequent flyers in the healthcare system.

It’s a human calculation. Leaving hundreds of thousands of real people to become sick, disabled, and even facing an earlier death when it can be prevented is, quite simply, inhumane and cruel.

These are real people who could live better lives.

What you can do to create change

The frustration of this knowledge is enough to make you want to hide in a cave. Instead, let’s go to the barricades and fight — for ourselves, for our loved ones, for the society that loses out on what we can contribute.

Talk to your elected representatives and, whenever you can, make it an election issue. Read up on new treatments and new approaches and talk to your doctor. Help your family and friends understand what you’re going through and how things could be different. Then ask them to climb over those barricades with us.

Lene  Andersen, MSW
Meet Our Writer
Lene Andersen, MSW

Lene Andersen is an author, health and disability advocate, and photographer living in Toronto. Lene (pronounced Lena) has lived with rheumatoid arthritis since she was four years old and uses her experience to help others with chronic illness. She has 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. Lene serves on HealthCentral's Health Advocates Advisory Board, and is a Social Ambassador for the RAHealthCentral on Facebook page, facebook.com/rahealthcentral. She is also one of HealthCentral's Live Bold, Live Now heroes — watch her incredible journey of living with RA.