In our first blog post by a patient, Dave Duhrkoop shares his experience with chronic pain and opioid medications—highlighting the role advocacy and research play in improving care and outcomes.

Dave Duhrkoop is a 67-year-old retired marketing executive from Portland, Ore. He has had chronic back pain nearly 20 years—and has used opioid pain medications in some form for most of that time. His experience led him to become a member of the American Chronic Pain Association (ACPA) about 12 years ago.

Now an ACPA district director, Mr. Duhrkoop has also served as a patient advocate for about eight years. Through his advocacy work, he became involved as a patient advisor in ongoing back pain research at Group Health Research Institute (GHRI) and elsewhere. Working with GHRI Senior Investigator Michael Von Korff, ScD, Mr. Duhrkoop recently contributed to a review of opioids for back pain in The BMJ (see related news story on right)—sharing first-hand patient commentary that is rarely featured in peer-reviewed medical journals.

In our first blog post by a patient, he reflects on his personal experience with opioids, his advocacy work, and his vision for how research can help reduce harms caused by long-term use of opioids.

Dave Duhrkoop

I broke my back rock climbing in 1963 when I was 16 years old. Over the next 30 years, I had seven back surgeries, and unfortunately, my pain increased with each one. By 1996, my pain was so severe that my doctor did not hesitate to prescribe OxyContin as a long-term treatment. At first, I took it as prescribed. But I gradually worked my way up to full-time abuse of the medication. I realized I was taking too much and I was aware of the risks, including accidental overdose and death. But the habit of taking them had become the most important thing.

At the time, I didn’t realize how my dependence on opioids was changing me. But my family did. I had been taking opioids daily for about three years when they confronted me. It was 1999, and we were on our customary trip to the beach the day after Thanksgiving. It was a particularly special year because my two-year-old granddaughter was with us. I distinctly recall sitting on the sofa admiring her, when out of the blue, my wife brought up my drug habit. Of course, I was in denial and told her she was wrong on all counts. But she insisted that I was becoming different than the man she married. I realized she was speaking in earnest and meant every word. As I looked down at my granddaughter lying on my lap, it dawned on me that I could easily become an overdose statistic. For the first time, I felt a sense of fear.

A life-changing decision

Over the next two days, both my daughters confronted me, as well. They let me know in no uncertain words that they wanted the old me back. My attention was profound, and I remember saying to myself, “if it looks like a duck and walks like a duck, it’s probably a duck.”  I realized I was in over my head. I began to worry that if I continued down the road I was on, I might never see my granddaughter grow up, nor be able to enjoy my family. Fear of death and its consequences can change a person's life forever. A few days later, I checked myself into rehab.

My experience in rehab taught me that if other people could withdraw from or taper down their meds and live a better life, then so could I. It’s what led me to become a patient advocate with the ACPA eight years ago. Since then, I’ve led dozens of chronic pain support groups that help people develop their ability to effectively manage chronic pain. The support groups are so important because people with chronic pain face a unique societal burden: It’s okay to take something for pain, but don’t take too much, don’t get addicted to it or become physically dependent on it, and continue being a productive member of society. That’s a lot of weight to put on a person suffering from chronic pain.

From “patients” to “people”

Nine out of 10 people who take opioids for chronic pain will tell you that they feel singled out. A visit to the hospital or doctor’s office is so often met with suspicion and distrust. It’s a reminder that we are somehow different than everyone else. But being part of a support group helps you realize you’re not the only one who is suffering or having a problem with your meds. You realize you can get to a point where you’re not so different after all.

That’s the philosophy of the ACPA—to encourage the process of going from being a chronic pain patient to being a person. It’s an acknowledgment that there are times when people simply need the assistance, support, and voice of another person who fully understands the pros and cons of opioid treatment and the protocols of pain management.

The need for this kind of support has never been clearer: Since 1999, opioid sales have quadrupled in the United States, and deaths due to accidental overdose have followed suit. With opioid-related deaths at an all-time high, now is the time to talk about how we bring these statistics down. I was fortunate that the very essence of family love brought me to a point where I knew I needed to change what I was doing. Through my experience in rehab and my advocacy work, I realized that it was up to me to take my meds responsibly.

Looking to research for solutions

How do we help other people reach this point? I believe research is the single greatest gateway to solving the issues surrounding chronic pain. As we continue to explore the galaxy of solutions to chronic pain and its treatment, we shouldn’t forget the potential of basic scientific investigation into factors like genetics. We should look at pain holistically instead of as a set of fragmented concepts and approaches. We should study interventions that give doctors and pain specialists the tools and information they need to support people in managing their medications in a safe and effective way. And we should involve real people who live with chronic pain in guiding this research—because we have a wealth of knowledge and experience to share.

I’m proud to be involved in a GHRI research study that is doing just that. I serve as the chair of the Patient Advisory Committee on a chronic pain study led by Dr. Von Korff and funded by the Patient-Centered Outcomes Research Institute. The study will assess whether changes in Group Health’s opioid-prescribing protocols reduce the risks of long-term opioid use—risks such as depression, drug abuse, and death from accidental overdose.

In many ways, my role as a patient advisor in research is simply an extension of my advocacy work. Being an advocate has been an extremely important component of working through my own chronic pain. I still have good days and bad days, but I’ve learned to take my meds safely and responsibly. And each day, I find strength in knowing that by using my knowledge and understanding of the issue, I can help make a positive difference in the lives of others who suffer from chronic pain.

Dave Duhrkoop