CSI-OPIOIDs Study on Pain

How Can We Better Prevent Su***de? Dr. Kertesz explores solutions in new podcast episode 🎧

In this podcast, Dr. Saul Weiner and Dr. Stefan Kertesz discuss the latest topics in su***de prevention. Released this week, the episode is titled, “Preventing Su***de: How Can We Do Better?“

This episode includes a modified story from one of our CSI:OPIOIDs participant interviews in the middle, but it’s packaged overall in an approachable conversation to current theories, the value of caring connections, stories from William Styron’s Darkness Visible, a story from Dr. Kertesz’s childhood.

On Becoming a Healer streams everywhere and at this this link

On Becoming a Healer Listen to On Becoming a Healer wherever you get your podcasts!

Meet CSI:OPIOIDs Team Member, Anne Fuqua!

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 su***de 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 su***de 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 [email protected] and we’ll gladly send you a copy!

Our research team interviews family or friends who have lost someone with pain to su***de. It's ethically approved & strictly regulated.

Today we published our thoughts on the concerns we've heard from potential participants about whether they can trust in confidentiality.

You can read the full article here:

https://www.csiopioids.org/patient-stories/

If you lost someone with pain to su***de and want to consider being interviewed by our team, our eligibility survey is here:

https://go.uab.edu/csiopioids

We are offering a payment for that survey (on a time-limited basis, subject to real rules that we have to uphold)

Trust and Reservations when Speaking About a Su***de Loss Trust and Reservations when Speaking About a Su***de Loss

Meet CSI:OPIOIDs Team Member, Kate Nicholson!

Hello Kate, tell us about yourself!

I’m Kate Nicholson, Executive Director and founder of the National Pain Advocacy Center (NPAC). I’m also a civil rights attorney with a long-term focus on helping assure that people with disabilities are treated justly and fairly, as is required by law. I was a primary drafter of the current regulations under the Americans with Disabilities Act.

What is your professional background or personal connection to this work. Why are you interested in this study?

As I mentioned, I had an eighteen-year career as a civil rights and disability rights attorney in the US Department of Justice. But I also became a person with long-term and severe pain during that period. A surgical injury to the nerve plexus leading into my spinal cord left me substantially limited in my ability to sit, stand or walk for two decades.

In 2015, after undergoing the first of two surgeries that restored my mobility, I moved to Colorado to work on physical rehabilitation. I was just coming off of the opioid medication I’d taken long term, when my new doctor in Colorado announced that she was going to stop prescribing opioids to all patients effective immediately. A local clinician had been investigated by the DEA; other clinicians were changing their prescribing to protect their practices. Still, after twenty years I was finally getting my health back ,and I knew sudden opioid termination could be dangerous so it was frightening.

I learned that many people with pain were facing challenges getting care, particularly after a 2016 guideline released by the Centers for Disease Control and Prevention. I decided to speak up and begin advocating for people with pain. Along the way, I met the CSI:OPIOIDs principal investigator, Stefan, and we advocated together. I speak to policymakers all the time. I know that research data is absolutely crucial to helping them understand what is happening in the public health space.

What difference do you hope this work will make to others?

I truly believe that we need to take pain and people with pain seriously. To do that we have to recognize that pain affects us all differently, and that sometimes the way we treat pain can make it a lot worse. My hope is that this collaboration and others will bring understanding to a terrible consequence of society’s pendulum swing on opioid prescribing – forcibly taking people off opioids and creating barriers to their healthcare –and help shift the tide so we can make pain care better.

What has been the most interesting/surprising/meaningful thing about doing this work, so far?

It’s meaningful to work alongside a dedicated team of experts and advisors who are all genuinely focused on gathering data on a problem we are too often told is only anecdotal and one that has not been adequately researched.

What do you think people in our society might need to learn at this time about pain and its care?

Pain, especially chronic pain, is so often misunderstood. It is the largest cause of disability, and our most costly chronic health condition in the U.S. Still, so many people think those living with pain can just “buck up” and press through. Scientific consensus now considers chronic pain as a disease like any other, but it isn’t often managed that way.

In the latest podcast episode from “On Becoming a Healer”, cohosts Stefan Kertesz and Saul Weiner, both physicians, focus a critical eye on how their own profession responds to people with pain.

In this episode, entitled, “Why are we addicted to talking about opioids rather than helping people with chronic pain?”, Drs. Kertesz and Weiner explore how physicians have been pushed to adopt simplistic understandings of pain that don’t reflect the latest science and fail to reflect a true partnership with patients. Rather, in Kertesz’s words, “the medical profession is addicted to talking about opioids, and by that, I mean, talking about not prescribing them”.

Both hosts observe that in an earlier era, doctors were pushed to prescribe opioids, without seeking to understand the patients. Now, while the direction of prescribing changed, the lack of real engagement is constant.

They zero in on a recent declaration from the American College of Physicians endorsing quality measures based on opioid dose, a position that contradicts the CDC’s 2024 declaration that those quality measures proved harmful to patients.

The views reflected in the podcast do not reflect formal positions or views of the CSI:OPIOIDs research project, which must focus on the evidence it produced. At the same time, we have heard from many people with pain that they don’t feel the medical profession is listening, and this latest podcast may be of real interest to many.

Find “On Becoming a Healer” wherever you get your podcasts:

https://youtu.be/w96hqgmuRL0?si=d4KSWogH7QMCq_iM