Hello Anne, tell us about yourself!
I’m Anne Fuqua. I’m an advocate, a person with long-term pain, and also outreach specialist for the CSI:OPIOIDs study.
What is your background or personal connection to this work. Why are you interested in this study?
I grew up in Birmingham Alabama, where I live today, and I obtained a Bachelor of Science in Nursing. But in those years I also developed a very painful condition. It’s called primary (or generalized) dystonia. At this point I rely on a wheelchair due to that.
Over the years I wound up receiving opioid pain medication, but at high dose. It worked but it also meant that I was vulnerable because the doctors who were willing to prescribe those high doses were vulnerable to investigation.
I paid a lot of attention to what was happening for other patients with pain. I learned about so many patients who had no place to go when they lost a doctor either due to retirement, or an investigation. Others were cut cold turkey by doctors who were afraid of investigation. Or even if the patient was tapered, it was traumatic.
And what I saw is that many of them were dying. Many took their own lives. Many others deteriorated medically and died from that. As they went off of opioids, their heart failure got worse or they had heart attacks.
I kept my own records of all these tragedies.
How did you meet Stefan Kertesz, who leads the study?
In 2016, he saw my very first Tweets about what was happening to people with pain. I remember realizing that someone had followed me the day after I had posted those tweets. It was this doctor from UAB, but not a name I recognized, so I looked back at his tweets and then googled him. Here was this doctor from UAB who was speaking out about how patients with long-term pain who were being mistreated. We eventually connected and I shared with him what I had been learning.
He wrote an article that a lot of people read, called Turning the Tide or Riptide. He was one of the first people to point out that fentanyl was causing so many deaths but patients with pain were being harmed.
He and his colleague Allyson Varley applied for funding support to try to do a real research study and I joined the study team.
What has been the most interesting/surprising/meaningful thing about doing this work, so far?
I would say 2 things. First, the study team is a community of people who care about suicide and pain. It includes patients, Veterans, family members, and researchers. And Dr. Kertesz has managed to bring in experts whose entire career focus is on suicide or on pain. If we can work together, we can make a difference.
Second, the research stories show in a very clear way how people wind up losing their lives. The loss of pain medication is part of a story, with other pieces. That story can include things that happened to the patient earlier in life, problems in health care, even challenges with their community or family, but pain is part of all of that.
I want to see us do a whole lot better for people with pain, people like me, and their families. I believe CSI:OPIOIDs will help.
From the CSI:OPIOIDs team:
Readers who wish to read the 2017 article “Turning the Tide or Riptide”, please reach out to us at csiopioids@uabmc.edu and we’ll gladly send you a copy!
