by Janice Lynch-Schuster

t4Nx0oB__400x400By nature and habit, I am a quiet person, more comfortable sharing ideas in print than in person. So I startled myself while attending the two-day PAINS collaborators meeting in Washington, DC. The fact that I did so simply reflects the sense I had of having found a place where all voices were welcome and respected, and where my experiences as a person with pain and as a writer were worth sharing. In an era where so many patients continue to feel excluded from major professional meetings, PAINS leaders took pains to include us, and to anticipate our needs. The conference room even had two beds, comfortably made up, for those with MSK problems to stretch and move and participate.

Having attended scores of healthcare conferences and panel discussions, I know how programs can, at times, devolve into a PowerPoint parade, with data and ideas that simply reinforce what the choir knows. The PAINS conference did not. Gathered with the very specific goal of finding ways to implement and publicize the National Pain Strategy (NPS), each presenter stayed on point and focused. By the end of the first long day of listening, I felt not exhausted, but rejuvenated. I had learned so much that was essential and relevant. More than that, the day’s updates on federal efforts to make the NPS a reality gave me hope that, in my lifetime, we will find better strategies and interventions that are safe and effective, and that reach the millions who live with chronic pain problems.

At the end of the conference, Cindy Steinberg of the US Pain Foundation offered a four-point call to action, which included:

  1. Encouraging all participants and those with whom we work to support efforts anchored and led by consumer advocacy groups
  2. Developing a strategy to launch and lead a public education campaign
  3. Focusing on publishing more peer-reviewed articles on innovative programs and approaches to pain management
  4. Developing a coordinated approach to visiting congressional leaders and other policymakers to urge them to support the NPS

The only discouraging notes emerged, for me, were the too-often conflated topics of pain management and addiction prevention. From my vantage as someone who requires opioids to cope with burning mouth syndrome, ongoing efforts to curb the rise of prescription drug overdoses have made it ever more difficult to have my prescriptions filled. No matter how faithfully I adhere to my “pain contract,” I often feel that I am greeted with skepticism and suspicion. By allowing the overdose “epidemic” to take center stage in Americans’ understanding of opioids and their use, pain advocates have lost important ground and opportunities to change the conversation.

I also felt discouraged by the list of funders whose generosity enabled the conference to occur. Corporate funders significantly outnumbered private foundations and individuals who have provided support for PAINS’s work including the NPS Collaborators’ Meeting. I am aware that PAINS has exerted enormous effort to educate private foundations about chronic pain and to engage them in their work and that they have had little success. A national effort to “transform the way pain is perceived, judged and treated” will require significant funding, including grants from federal and state agencies, private foundations, corporations, and individuals. It must not be supported almost exclusively by grants and contributions from industry. As much as corporations that conduct drug research want to help other people, there is little doubt that pharmaceutical companies, as all other corporations, focus on opportunities to increase profits. Recent media coverage of the influence corporate funders wield—particularly pharmaceutical firms—on the conclusions in articles submitted to and published by prestigious peer-reviewed journals, means that all not-for-profits working in this space must be transparent, as was PAINS, and ever-attentive to undue influence and potential conflicts of interest.

I mention this not to malign PAINS or any other organization, but to encourage private foundations to recognize the importance of this critical public health issue and to begin providing support for not-for-profit organizations working in this space. Those working to improve chronic pain care and to advance the NPS report must have resources to do their work and should not be subjected to undue criticism about their intentions and motivations. The ROI from investing in PAINS and the NPS must not come at the price of the change we know to be essential.

As author Keith Wailoo noted in his keynote remarks, pain and politics have a long strange relationship, and have often made for strange bedfellows. Before that history repeats itself—with increasing curbs on prescribing, and growing barriers to care—let’s learn from it, and make a future in which we can thrive.