National Pain Strategy PAINS Collaborators Meeting Recap

By Barby Ingle, Power of Pain Foundation President

On June 29 and 30, 2015, the Pain Action Alliance to Implement a National Strategy (PAINS), a group of over 100 pain collaborators and stakeholders, came together in Washington DC to discuss the National Pain Strategy (NPS). The purpose was to provide attendees an opportunity to discuss the NPS and find areas of agreement on next steps, collaborations, priorities, and to hold accountable those responsible for implementation.

Capitol Building in Washington DC USA

As the president of the Power of Pain Foundation, I was invited to participate. I went into the meeting with some preconceived notions based on little happening since the Institute of Medicine’s report in 2011 and didn’t expect much to be accomplished. To my great surprise, the meeting exceeded my expectations. I left the meeting feeling that a path toward implementation of stronger access to care issues was clarified as a result of the meeting. I am excited to be one of the attendees present that will be helping move a chronic pain agenda forward, making a difference in the lives of those living with pain.

The goals of the meeting were to encourage collaboration among key pain community leaders, to promote the NPS report and build enthusiasm for it, and to facilitate conversations about how to move forward to implementation of the strategy outlined in the report.

For me, the meeting clarified the path ahead for the NPS in terms of priorities,
implementation, next steps, funding,
leadership and accountability.

One of the unintended outcomes from the meeting was the consensus to support the messaging of the Chronic Pain Advocacy Task Force (CPATF). The CPATF is a group of 17 consumer advocacy groups convened by the State Pain Policy Action Network (SPPAN), which is a program of the American Academy of Pain Management (AAPM). As a founding member of the CPATF and the representative of one of the 17 groups involved, I was very proud to see that our work was recognized by this larger group of collaborators and stakeholders.

As agreed upon, the core messages are:

  1. Chronic pain is a real and complex disease that may exist by itself or be linked with other medical conditions.
  2. Chronic pain is both an under-recognized and under-resourced public health crisis with devastating personal and economic impact.
  3. Effective chronic pain care requires access to a wide range of treatment options, including biomedical, behavioral health and complementary treatment.
  4. Denying appropriate care to people with chronic pain is unethical and can lead to unnecessary suffering, depression, disability, and even suicide.

Not only has HHS been asked to include the core messages into the final version of the NPS report, but also over 50 more organizations and pain leaders have signed on to support these same core messages. I was not the only person who felt more confident leaving the meeting than when I arrived. Almost 94% of attendees who completed a post-event survey say that they felt more positive about the report than they had before the meeting.

I hope that the promise of access to timely and proper care and collaboration created in this NPS meeting pays off and helps policy makers see the importance of making chronic pain a high priority issue for society.

I know that together, we are making a difference. We are creating a platform that allows patients to share their stories and get involved. This empowers us to achieve better access to care through a stronger pain community.

The meeting was very well attended with collaborators from pain non-profits, the pharmaceutical industry, and professional societies, as well as patients and providers, and those directly connected as writers of the National Pain Strategy who are charged with oversight of its implementation. Presenters included Dr. Sean Mackey (the Co-Chair of the NPS Oversight Committee) and Amy Goldstein (director of the AAPM’s SPPAN), who were well informed and help set a tone that allowed for discussion of complex issues in a nonjudgmental way. All attendees were given the opportunity to raise questions and thought-provoking comments throughout the two day experience.
Government Committee Meeting
We were split up into six separate work groups to really delve into the different aspects of the NPS report (population research, prevention and care, disparities, service delivery and reimbursement, professional education and training, public education and communication). I served on the public education and communication subgroup committee. After our work group session we came back together and shared key components and goals our subgroups came up with for each area. Breaking it down in this manner led me to a sense of commitment, movement and wanting to take action to be one of those leaders who makes a difference in a meaningful way.

For me, the meeting clarified the path ahead for the NPS in terms of priorities, implementation, next steps, funding, leadership and accountability. The Power of Pain Foundation will be including many of the aspects and messaging in our upcoming projects for 2016-2017. I hope that the promise of access to timely and proper care and collaboration created in this NPS meeting pays off and helps policy makers see the importance of making chronic pain a high priority issue for society. More information can be found at www.painsproject.org.

About the Author:
Barby Ingle suffers from Reflex Sympathetic Dystrophy (RSD) and endometriosis. She is a chronic pain educator, patient advocate, motivational speaker, best-selling author, and president of the Power of Pain Foundation. More information about Barby can be found by clicking here.