Compliance and RA – it’s Not that Simple
I just found out that there is an, “out-of-control epidemic in the United States that costs more and affects more people than any disease Americans currently worry about.” These strong words coming from a New York Times article entitled, The Cost Of Not Taking Your Medicine, definitely caught my attention. The article went on to say that 20-30 percent of prescriptions written are never filled and 50 percent of people with chronic diseases don’t take their medications as prescribed and went on to talk about possible reasons for this.1 Cost was mentioned, along with fear of side effects, ambivalence about taking medications, wanting to do things naturally, and stopping when symptoms lessen.
Here’s the irony: at the bottom of the page after reading the article I saw a heading under related coverage for another article entitled, “How Many Pills Are Too Many?” This article described the rise of over-prescribing and said that doctors are being encouraged to de-prescribe unnecessary medications. It cited scary statistics like, “about one-third of adverse events in hospitalizations include drug-related harm,” “there are 400,000 preventable adverse drug events in hospitals each year,” and, “one in five older patients are on an inappropriate medicine,” including, “44 percent of frail, older patients.”2
Well, I don’t know about you but this information does nothing but feed the biggest reason for my non-compliance, and that is TRUST, or should I say, lack thereof, with a bit of hopelessness thrown in. Why in the world would half of the people who live with chronic conditions not take their medications? Do that many people not care about their health and their life? Of course not. Do that many people doubt whether their best interest is being served by taking multiple medications? Well, without a statistic or survey to look at, I would say emphatically, Yes. All it takes is to look at the information we have at hand with which to make our best guess. And, whether we like it or not, that is what treating diseases like rheumatoid arthritis is: a best guess.
Trust in your Rheumatologist – a key element for your treatment plan success
With the cost of medications rising at historic rates and a government who seems completely unconcerned by this, I have a feeling that this “out-of-control epidemic,” isn’t going anywhere soon. But neither is disease, so as someone who lives with one of the complicated chronic conditions that is directly affected by this apparent epidemic I need to be able to trust the people who are in charge of helping me to best help myself. Over the years I’ve lived with JRA I can say that there is a direct correlation between my level of trust in my rheumatologist and my compliance with his or her treatment plan. If I could go back in time I would tell my earlier self not to settle when it comes to my health care team. My life is too important to be receiving guidance from someone who I don’t trust. Sadly, although I have had ten rheumatologists in my life only three of them have been people that I feel took the time, care, and had the knowledge base I needed, and therefore less than one-third of my doctors engendered my trust.
Right now I’m happy to report that I am working with a great doctor. She takes the time I need to feel comfortable about my decisions around treatment and respects when I say no. She fits me in when I’m doing badly even if she has to call me from home at night. She follows up, and teaches me something new every time I see her which is no small feat as I’ve lived with this for over 40 years and have spent many, many hours researching my disease. She has my back. I know this because she’s shown me more than once just how important I am to her. A good doctor like Dr. Davey will always be my hero because in order to be there for me I know she is taking her time away from her own self and family. She is a true healer.
And yet, there are still two medications sitting in my closet and one waiting at the pharmacy I’ll never pick up that she recommended. At least I haven’t fibbed to her the way I did with my last doctor. I told him I was taking a medication I had stopped a long time ago because I didn’t want the lecture he was bound to give me.
Compliance is not a simple issue, but one thing I know for sure is that it won’t be solved by playing the blame game. Instead we have to figure out why, and work with what we find out. And when I say we, I mean you and me, all of us who live with chronic disease. So much of handling rheumatoid arthritis is reactive; it feels good to be pro-active and this is one area you can stay ahead of your disease.
Getting a doctor you trust is the first step to living well with rheumatoid arthritis, and from there committing the time every time you need help with managing your disease to going the extra mile to find someone good will be the best first step towards improving your compliance and the trajectory of your disease. The second step is to be honest with him/her about how you feel about your medications and the side effects that come with it. What is your barrier to compliance? Is it specific to the medication, or is it a fear of medication in general? Do you feel like you are failing in some way or is needing a drug a sign for you that your disease is bad? Is it cost? Do you feel like your doctor hasn’t explained the reason you need it or what it does in your body to help? Really think about how you think about medications and uncover your inherent biases. From there you can figure out how to go forward.
In the 46 years I’ve lived with JRA I’ve said yes at times to every question I just posed. And each yes answer created a different response, but sadly for me, not always a healthy one. I know for certain that at times in my life my fear overrode good sense and my lack of trust led to bad decisions that cost me better health. I also know that at times my non-compliance saved my life.
As we all know hindsight is 20/20 and all we can do is our best in any given situation. RA is a horribly difficult disease to treat, even in the age of biologics. Full compliance, will always be a goal, not a reality, because we have to do what we think is best for ourselves and sometimes that differs from what our health care team recommends. So, next time you are needing to make a decision about medication take the time to feel good about it. Ask yourself honestly if you really trust your doctor to make the best choices on your behalf. You are the driver of your life so you are the only one ultimately responsible for it. Love yourself enough to trust yourself and to surround yourself with experts you trust. Not only is that the best path to compliance, more importantly it is the path path to the health you deserve.