By Rose Bigham.
(Rose Bigham testified before the FDA Public Meeting on Drug Development for Chronic Pain on Monday July 9. See a link to her testimony below. She shared the following with the National Pain Report this week)
I worked at Microsoft for 23 years and I loved it. In 2008 after 20 years there and 6 years of mysterious pain I finally got the diagnosis which would change my life and ultimately end my career: Spondylitis is a disabling auto-immune disorder where your immune system repeatedly attacks your spine and major joints (& other things) causing severe and constant pain. There is no cure.
Prior to 2008 I saw specialist after specialist to try to find out why my lower spine was cripplingly painful all the time, amongst other symptoms. Over time I had to give up kickboxing, hiking, doing triathlons, white-water rafting, and playing competitive volleyball 5 nights a week. I started taking long-term pain medication before I finally got my diagnosis, just so I could stay employed. I learned at the age of 40 that my condition will get progressively worse, forever, and will shorten my lifespan. I was taking the same dose of pain meds every day and seeing my pain doctor every few months. My insurance covered the doctor visits and my prescriptions, and I kept working at my high-pressure job at Microsoft for another 3 years. I stopped having hobbies or a social life as it took all my energy and regularly pain medications to get me to my job every day. And to survive the 7 major surgeries I had during those years.
Unfortunately, my symptoms kept getting worse and after a brief stint at Amazon I left on permanent disability leave, awarded SSDI benefits a few years later. My specialists and the SSA concur: My pain is terrible and intractable.
When ESHB2876 passed in Washington in 2010 I was now required to see a pain specialist, but now I had to see them frequently even though my condition never changes. It was an additional non-medically necessary doctor appointment every single month requiring absence from work. I continued the consistent dosage of pain medication which allowed me to keep working. As time went on, however, the “chilling effect” of these laws and the resulting provider fear made it increasingly difficult for me to get my medication despite my legitimately painful conditions and clean history.
When I became disabled in 2013 I lost my excellent employer health insurance. Now those monthly doctor visits and prescription refills have become EXPENSIVE with repetitive co-pays every month, especially on a fixed disability income. The pain meds are the only prescriptions which require non-medically-necessary doctor visits 12 times a year, and new prescriptions each month! My condition will never improve. There will be no miracle cure which will make my pain medication unnecessary. I’ve tried all kinds of interventional procedures, P.T., acupuncture, acupressure, mindfulness, biofeedback, yoga, aquatic physical therapy – all expensive. I was able to try all of those things when I was still earning income and because I live in an area where these services are available. People with lower income, less flexible careers, or in rural areas without these services do not have those luxuries. Regardless: No alternative therapies were effective at reducing my pain. The only thing that has ever proven effective is pain medication: opioids.
I have no history of misuse, have never ‘diverted’ my medication nor never asked for an early refill – ever. I have never failed a urine screen. Yet in January of 2015 my then-pain-doctor told me that he’d be rapidly decreasing my pain medication immediately to 1/3 of my usual standard dose – the stable dose that I’d been on for ten years. When I asked my pain doctor if my diagnosis had changed he said no. My prognosis? Also no. Did I do or say something which led him to believe that my behavior was risky in some way? Absolutely not. My doctor had decided to lower my dosage dramatically – and quickly – because he’d heard that some other doctor he knew had been disciplined by the WA state Department of Health, and now my doctor wanted to ‘be under the radar’. Direct quote. And he would not discuss it. I would have no choice except overwhelming pain.
I was devastated. With the opioids I can sometimes be productive; can sometimes push the awareness of the constant, severe pain to the back of my mind and do laundry, cook meals, walk my dogs. Without the pain meds? I’ll be bed-bound. Unable to move. I’ll be 50 this year and I’m looking at decades needing full-time care, bedsores, no life at all.
I am aware of the addiction crisis and I’m horrified at the increase in people misusing these incredibly lethal street drugs like heroin and fentanyl, and those who would misuse the very prescription drugs which I now rely on. Bottom line is: more people are reaching for heroin to misuse these days than prescription drugs. And people like me are being shut out of appropriate, humane medical care. We must do more to combat the addiction and overdose crisis, we absolutely must. But I am not willing to be an unintended victim – collateral damage – in that war. And neither should the estimated 250,000 people like me in Washington state. And our providers should not be afraid to treat their patients.
Rose Bigham is Co-Founder of the Washington Patients in Intractable Pain, an affiliate of The Alliance for the Treatment of Intractable Pain
To see Rose’s testimony before the FDA Public Meeting on May 9 in Washington D.C. click here.