Public Testimony: Maggie Buckley

Release Date: September 24, 2009

FDA Hearing of the Joint Meeting of the Anesthetic and Life Support Drugs Advisory Committee and the Drug Safety and Risk Management Advisory Committee

Good Afternoon,

My name is Maggie Buckley. I am a wife, daughter, sister, friend, aunt, neighbor and photographer. I live with Ehlers-Danlos Syndrome (EDS), a painful genetic connective tissue disorder that causes joint dislocations and excessive bruising. Living with EDS, is like trying to move through the world during an earthquake; never knowing if the next step will land flat on the floor or if I will fall and dislocate something again. Pain has been my constant companion since childhood. The pain levels range from mild to so excruciating, I find myself unable to form words let alone speak.

I’m here today to discuss why long-acting opioids are as important a part of my pain management arsenal as my assistive devices; wheelchair, braces, cane, walker, crutches, splints and exercise gear. Long acting opioids are just one of many tools that I use to manage my pain. Though, I don’t use them all of the time, I do use them for extended periods of time as part of a recovery process from the frequent dislocations and injuries. Each tool plays an important part in my overall treatment plan and is key to my overall health. When there is a spike in pain/injury levels the controlled release medications have been the best intervention to get me back on track. I have been prescribed these types of medications successfully at different points in my life for varying lengths of time; weeks, months, years.

I have lived without long-acting pain medications – but that life left me looking for a way out, feeling that I was burden to others.

• In my teens I was only prescribed NSAID’s which left me with GI irritation.
• In my 20s’ exercise and working through the pain were recommended, in spite of poor muscle tone due to EDS and an increase in injuries from the exercises.
• In my 30’s I was lucky if a short acting opioid (vicodin) was offered.

Eleven years ago I suffered a horrendous hip dislocation and was forced to leave the workforce for rehabilitation and recovery. Rest, ice, heat, physical therapy, short acting opioids, anti-nausea medications and laxatives were the only tools available to me. I would get a little better, push a little harder and injure something else. By 2000 I had reconciled myself to being depressed and dependent upon others. I primarily used a power wheelchair to get around praying that my pain levels would stay below a 6 on a ten point scale just so I could make it through the day. Some days I couldn’t get out of bed. Some days I couldn’t even eat because the pain was so bad. Emotionally, I felt defeated. I felt like dying.

This cycle of untreated pain, depression, re-injury and hoping for a lifeline continued until 2003, when a physician prescribed a long acting opioid after I had concurrent shoulder and ankle dislocations. I felt like I was freed from prison. Taking the prescription as directed for a period of 3 months allowed me to fully participate in my own care, actively exercise, eat well, practice stress reduction—engage in a full treatment plan and enjoy time with friends and family again. In six months I was feeling better than I had felt in years. The nature of the long acting pain medication minimized the wild fluctuations in my pain levels that had previously prevented me from living life.

In short, long-acting opioid medication has saved my life. This medication choice has come to my rescue more than once and I hope it will be there again when I need it as I continue to live with EDS and the pain it exerts on me. The responsible use of long-acting opioids makes it possible for me to recover more function and more quality of life than with any other pain relievers. It restores the sustaining HOPE of diminished pain.

I do not like to think about the misery I endured from the unbearable pain before long-acting opioids were prescribed, and I fear that pain is lurking over my shoulder should long-acting opioids be removed from my treatment plan. I don’t want to be imprisoned by pain ever again. My freedom to live a life worth living depends on my doctors’ freedom to do what they know is best and that includes the option to prescribe long-acting opioid medications.

Thank you for your time and attention.