Shortly after my recent post, “How the Backlash to Oregon’s Plan to Taper Opioids with Integrative Approaches Missed the Mark”, I received an e-note from national pain leader Sean Mackey, MD, PhD. The letterhead of the chief of the division of pain medicine at Stanford University and co-chair of the US HHS National Pain Strategy was the vehicle through which Mackey and 100 co-signers successfully campaigned for the Oregon Health Authority to prevent forced tapering “of certain patient populations.” Mackey wrote that he presumed we had shared interests in bettering care, yet he thought there was a harmful “negativity” in my article: “May I suggest rather than a ‘missed opportunity’ message, you could easily frame it as ‘forced opioid tapering defeated – here is what we need to do next …'”
After some electronic give-and-take, including clearing up some factual mistakes in my post relative to time-line and the nature of the shared authorship of the letter, we chose to meet via Zoom. This conversation was edited from comments on the call and in the letters.
For background: Mackey is presently among the most influential, if not the most influential players in US pain policy. In his day job at Stanford Medical School, he directs one of the world’s largest pain centers. Services include behavioral health, acupuncture, mindfulness-based stress reduction and other integrative approaches.
Between our conversation and the publication of this article, I had the chance to hear Mackey present Grand Rounds on “learning healthcare systems” at the University of Washington Medical School. He made strong and welcome cases not only for more pragmatic, real-world research on pain, but also for moving the biopsychosocial model urged in the HHS document toward more consideration of the “psycho” and especially “social” components – given, with the latter, the evidence for loneliness as a significant contributor to poor pain treatment outcomes. Mackey is also a co-author of the recent National Academy of Medicine publication First Do No Harm: Marshaling Clinician Leadership to Counter the Opioid Epidemic.
Weeks: My basic point in the article was that, while there is evidence to be concerned about potential harm from forced tapering, that you and your colleagues on the letter missed the opportunity to underscore how critical it is that coverage of complementary and integrative practitioners be continued, regardless. Patients need access and practitioners of all sort need more experience in working together. In your note in response to my article, you basically said that you chose for political reasons to limit your message to the point of ending forced tapering.
Mackey: First, I wish to emphasize as I did in my email to you that the letter as submitted was an incredible team effort of some amazing patient advocates and clinicians. It should not be viewed as “the Mackey letter”. These patient advocates and clinician leaders worked tirelessly and collaboratively to draft and finalize the letter that went to HERC. It was a perfect example of effective activism where people with pain and clinicians came together.
Additionally, the decision was less political than strategic. It was a combination of not wanting Oregon to pick apart a letter if it was on multiple topics. If we had addressed multiple issues, then they could give in on some things but not on the main point of ending non-consensual tapering. Additionally, we were limited to no more than 1000 words in the submitted letter, leaving little space to cover more than one topic. We were also trying to get all of these professionals to agree to sign a letter. I’ve been through this process (of getting many professionals to sign on to a document) before. If you have multiple issues, people have more reasons for not signing. We wanted a singular message against forced tapering. There is evidence this can do real harm. This is motherhood and apple pie. It was a tactical choice. And you have to admit, it worked.
Weeks: It was clearly effective. It was just such a black-and-white look at a state-based initiative that has far more meaning, to the nation, in shifting what we do relative to pain and opioid treatment than just the issue of whether or not tapering is forced. It’s the leader in truly putting non-pharmacologic approaches first. Really, step back and look at this from the perspective of the Sackler Family or other opioid manufacturers. One imagines it was a terrific outcome in their eyes: Keep giving the opioids. Wait for future research. Two thumbs up!
Mackey: First, the industry was not our target. The target of the letter was the Oregon Health Authority and clinicians. The second is that the letter is not against tapering. It’s against forced tapering. Unfortunately, they tied the issues together, thus we had to speak out to prevent the great harms that would likely have occurred from forcing some of the most vulnerable population off opioids. That was a big win.
Weeks: Yes, the evidence of potential harm – of people turning to street drugs, and some to suicide – appears to be there. Yet we don’t really know how the experiment would have played out. We know of the definite harms of opioids. I think of the data that suggests the US uses some 95% of the world’s opioids. People in other countries have their pains, their issues. Yet they don’t need opioids. How do we know that Oregon’s forced tapering experiment would not have come out well, given the known damage from opioid use, if we couple the tapering with giving clinicians and patient access to these new tools?
Mackey: This is a lot of guess work. Listen: I do appreciate that the May, 2019 letter did not include the integrative approaches for which you advocate. However, the March, 2019 letter did explicitly call out for such coverage. Coverage of such treatments may benefit some patients in ways that could limit their need for other therapies, including long-term opioids. Yet we don’t have a lot of evidence to support the value of integrative practices in helping people with this population. I run one of the largest comprehensive, interdisciplinary pain centers in the world. We have MBSR (mindfulness based stress reduction), nutrition, educators, acupuncture, nutraceuticals and more. I lose money on these integrative services. They don’t reimburse well. They don’t cover the salary and expenses, so I rob from Peter to pay Paul to have these services. I can tell you I have never had a patient cured from the solitary use of any of these. However, they are critically important as part of the comprehensive, multidisciplinary approach we need to reduce pain, and increase function and overall quality of life.
Weeks: I agree. I think there is a sort of bubble we’ve created in the integrative space – I’ve been part of creating it – that implies that integrative practices, if offered and reimbursed, would be very significant contributors in ending the opioid crisis. I’ve spoken with acupuncturists and naturopathic doctors who have been involved in Oregon’s pain and opioid strategy who work clinically with people who want to wean off opioids and they haven’t presented me with a picture of their integrative services making the transition easy. Yet this speaks to the issue. Practitioners on all sides need more experience working with each other, learning what they can contribute, and their limits. Without coverage, patients can’t access them. Regular doctors won’t refer. In killing the tapering, you basically killed the whole experiment.
Mackey: I get the sense that you believe that opioid forced tapering and coverage (of complementary and integrative practices) were linked. While that was technically the case, our efforts spoke directly to the forced tapering element. In earlier letters, we supported the addition of CIH services. The failure to implement the CIH services was a result of the complex scoring algorithms implemented by Oregon HERC, in which they rated the evidence for each of those services and allocated a cumulative score. At this time, CIH services did not score high enough to be considered valid for Medicaid coverage, and thus they were denied.
Weeks: Well, it is definitely true that the expanded coverage in Oregon, starting with the first phase of back and neck pain, was definitely linked to the plans to taper. You are right that Oregon could have chosen last month to both end the tapering and to keep the coverage. That was an option they were presented. They didn’t choose it.
On a separate point – to some accounts it was problematic that there were acupuncturists and chiropractors on Oregon’s decision teams that led to coverage of integrative practices. I wrote about that in my article because it is an important part of the national dialogue. I come from the political view that when one is not at the table, one is lunch. So I wonder – despite the positive inclusion of complementary and integrative practitioners in the HHS National Pain Strategy that you co-chaired – why was there just one person with clear integrative expertise on any of the committees? Why didn’t you reach out?
Mackey: I agree that there needs to be representation. But we couldn’t. There were federal rules that guided who was to be considered to be on a committee. People from (integrative) fields did not nominate or self-nominate people to serve on the committee. That was very clear to me because I saw the list. We couldn’t just add people who weren’t nominated or self-nominated due to the rules. They had to first be nominated.
Weeks: Well, I got that wrong. Now I’m feeling the onus on all of us for having failed to put people forward.
Mackey: This is true – but unrelated to the reason for this call and what happened in Oregon. We had one goal in mind with our letter. We were seeing vulnerable people without resources to help them who were going to be forced off opioids. We stopped that. We stopped likely harm. It was a win. Now one can say there was a missed opportunity and risk alienating people, or one can work collaboratively.
Weeks: My spouse would tell you that this isn’t the first time I might have served my cause by being less polarizing. Thanks for the time – and for writing me with your concerns after the piece was published. Keep up the work of inclusion. We need all the tools we can have. That’s one of the things we need to do next.
Additional note: I wanted to underscore what was a principal message of Mackey at the University of Washington Grand Rounds. He first noted that while most are promoting a biopsychosocial model, he said it is typically “with a capital B and small P and small S.” More are beginning to appreciate the role of the “psycho”, he added, supportively, making that also “capital P.”
Then he shared data that showed that social isolation is a factor in worsening pain outcomes. He explained that the assumption has been that diminished function due to pain leads to social isolation. But the data are that the causality may be reversed. Thus, it is really time to also put much more attention on the “social” in multidisciplinary pain treatment. It’s time also for a “capital S.” They’ve been some efforts, including multiple group, peer-led self-management groups and a patient-family advisory council.