Greetings! This is our late summer issue and Pain Awareness Month, which falls in September, is already in full swing!
#RealPainStories Campaign for Pain Awareness Month
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We’ve been sharing #RealPainStories throughout Pain Awareness Month and will continue to do so beyond September. Keep following, sharing, and contributing to this important campaign across NPAC social media channels, and don’t miss the #RealPainStories video of NPAC Community Leadership Council member, Charis Hill.
Below you will find a sampling of our late summer activities and learn a bit more about how we at NPAC work together to advance the health and human rights of people living with pain.
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NPAC Advisor Dr. Samina Ali helps spearhead the world’s first pediatric pain guidelines.
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Samina is a pediatric emergency physician at the Stollery Children's Hospital, a clinician-scientist with the Women and Children's Health Research Institute in Edmonton, and a professor of Pediatrics and Emergency Medicine in the Faculty of Medicine & Dentistry at the University of Alberta, Edmonton, Alberta, Canada. She is an outspoken leader in the effort to bring children's pain to the international stage and has been credited with changing the way physicians think about pediatric pain management. Her latest work on the first standard for treating children’s pain will have a tremendous global impact.
One in 5 children live with chronic pain. Moreover, poorly managed pain and negative pain experiences in encounters with the healthcare system have long-term health and developmental consequences for children.
The new standards were developed by a panel of 15 experts drawing upon literature reviews, clinical expertise, evidence-informed practices, and input from people with lived experience. The standards specifically acknowledge the role systemic factors like racism and trauma play in health inequities in children’s pain experiences and recognize that children and families should be equal partners in the health care team.
Read more in Samina’s interview with the Canadian Paediatric Society. See additional press coverage in NPAC In the News, below.
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NPAC President Juan Hincapie-Castillo is awarded the Mayday Pain & Society Fellowship
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NPAC President Juan Hincapie-Castillo has been selected as one of twelve pain experts to be a 2023-2024 Mayday Fellow.
Through its Mayday Pain & Society Fellowship: Communicating Science & Improving Care, the Mayday Fund encourages pain experts to assume public leadership roles to help end human suffering from pain through public discourse about research and best practices in care and the policy environment. The fellowship focuses on communicating science and improving care, providing extensive training to leaders in communicating with the media, policymakers, and the general public as they raise the visibility of pain.
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NPAC is delighted that Mayday awarded this fellowship to Juan. Several members of NPAC are past Mayday fellows. Read more about Juan and this award, here.
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NPAC forms collaboration with USASP
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Building coalitions and collaborating with like-minded and mission-aligned organizations is part of the way NPAC is able to influence policy and the larger narrative on pain.
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These collaborations also help to support the greater community of cross-disciplinary players in the pain, disability, and health equity spaces.
We further NPAC’s mission to advance the health and human rights of people living with pain by collaborating with the major pain organizations nationally and internationally. Recently, NPAC’s ED and President were both appointed to the advocacy committee for the US Association for the Study of Pain (USASP), the premier body of scientists who research, diagnose, and treat pain in the U.S. USASP is a chapter of the International Association for the Study of Pain (IASP). Last year, NPAC began collaborating formally with IASP to advocate for people with pain on a global scale. NPAC’s ED was appointed the U.S. representative to the Global Advocacy Working Group at IASP.
NPAC also works with groups in the disability, health equity, and drug policy spaces. For example, we were a founding member of the Disability Economic Justice Collaborative at the Century Foundation, a first-of-its-kind initiative bringing together leading think tanks, advocacy, and research organizations. The economic consequences for people living with pain and the costs to society are staggering. NPAC’s ED, along with our newest Board member Lindsay Baran, serve on (and previously co-chaired) a chronic pain task force at the National Council on Independent Living, the largest grassroots disability rights organization in the United States. NPAC works with many organizations such as those representing women’s health issues related to pain and drug policy organizations focused on equity, among others.
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NPAC forms collaboration with NIH HEAL Connections
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Last year, as part of a large grant awarded to many collaborating institutions, NPAC became a key association partner with NIH HEAL Connections, a new initiative focused on translating research into action. HEAL Connections seeks to extend the reach of research beyond publications in academic journals into practice and community settings where they can have an impact.
This summer we’ve been involved in two projects related to our HEAL Connections work. First, NPAC helped develop a landscape analysis of the policies and laws that impact pain management—both for the better and the worse. This initial analysis will be used internally by HEAL leadership and investigators as a way of understanding the policy needs and how research can serve important policy ends.
Second, HEAL Connections is doing a series of Learning Sessions for researchers. This summer, HEAL Connections put on two sessions entitled Inclusive Language, Imagery, and Storytelling for Addiction and Pain Researcher Teams. NPAC’s ED presented as a panelist in the session that was focused on pain, and her topic was understanding pain stigma. You can learn more here.
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NPAC TALKS - Presentations and Podcasts
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NAM Hosts Workshop on Medication Disposal
On June 27, NPAC Board Member Lindsay Baran spoke at a public workshop convened by the National Academies of Science, Engineering, and Medicine (NASEM) titled Defining and Evaluating In-Home Drug Disposal Systems for Opioid Analgesics. The workshop covered the science, regulatory, landscape, and real-world use of in-home opioid disposal systems. Lindsay addressed the barriers people experience with current disposal systems; necessary features of accessible, usable, and equitable disposal systems; and, the importance of addressing safe storage in addition to safe disposal.
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Patient & Provider Podcast Created for Opioid REMS Education Initiative
On July 10, NPAC’s ED Kate Nicholson and NPAC Advisor Dr. Stefan Kertesz offered a patient and provider perspective on opioid tapering for the Opioid REMS Education Initiative (for which they declined compensation). In the podcast, they discuss Nicholson’s experience with opioids and tapering and the perspectives of the thousands of patients she hears from and advocates for, as well as Kertesz’s perspective as a provider, researcher, and advocate for ethical care. The conversation touches on the 2016 and 2022 CDC Guidelines for opioid prescribing for pain and their impact on the policy landscape and chronic pain management as well as on ongoing research regarding risks and consequences of opioid tapering.
Listen on Apple Podcasts or Spotify
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Crisis Jam Broadcast on Suicide Prevention
On August 16, Kertesz and Nicholson also appeared together on Crisis Jam, a broadcast dedicated to addressing issues related to suicide prevention. The focus of the session was the CSI:OPIOIDs (Clinical Context of Suicide Following Opioid Transitions) study for which Kertesz is the principal investigator. This study examines the suicides that have occurred after prescription opioid dose reductions in patients with long-term pain.
Watch the video here.
Read more about the study and how you can be involved, here, and you can learn more at the end of this newsletter, below.
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Pain Canada Panelists Discuss Limitations in Mental Health Care System
On August 29, NPAC’s Dawn Gibson participated in Pain Canada's Rethinking Mental Health Care for Chronic Pain webinar with Alex Haagaard, Dr. Jennifer Stinson, and Desmond Williams. Dawn discussed the barriers to thriving and accessing care that participants in #SpoonieChat—a Twitter chat support space for the chronic pain community that Gibson created and has run for nearly a decade—often face. These barriers include pain, fatigue, difficulties working and leaving the house, intergenerational trauma, medical trauma, and vicarious trauma. Dawn stressed the impact of these barriers not only on individuals but also on communities.
Dawn advocated for a combination of community-based approaches and reforms to the healthcare system, including improved access, Trauma Informed Care, and disrupting childhood trauma. She concluded by directing viewers toward work on medical trauma by lawyer and disability advocate, Erin Gilmer, and underscored the need to build trust with patients.
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Pharmacoepidemiologists learn how to translate research into advocacy action
On August 25, NPAC’s Board President, Juan Hincapie-Castillo, participated in a symposium at the International Conference of Pharmacoepidemiology in Halifax, CA where he presented Translating Drug Utilization Real-World Evidence Through Strategic Advocacy. He talked about his research evaluating the effects of US state-level opioid prescription laws and how he used this scientific evidence to advocate at the National level. Centering the perspective of people with lived experience of pain, his presentation highlighted the work that NPAC conducted in collaboration with the Drug Policy Alliance and the American Medical Association to remove a provision in proposed federal legislation that would have instituted a nationwide restriction for opioid medications indicated for acute pain.
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Stigma Addressed in NIH Learning Session and in a podcast series directed at providers
Stigma related to pain is gaining more attention.
On August 14, NPAC participated in a six-part podcast miniseries on stigma amid the overdose crisis. NPAC’s ED recorded two podcast episodes on pain stigma, and NPAC Community Leadership Council member Ryan Hampton recorded two episodes on the stigma of addiction.
All episodes can be accessed on Spotify.
As mentioned above, on August 31, we addressed stigma related to pain in the NIH HEAL Connections Learning Session.
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Podcast Series about Economic Justice Addresses Chronic Pain
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On August 31, it was NPAC ED’s great pleasure to talk with a dear friend, trusted colleague, and impactful collaborator Rebecca Vallas for her podcast series Off/Kilter at The Century Foundation, a think tank that focuses on economic justice. Rebecca is the co-founder of the Disability Economic Justice Collaborative of which NPAC is a member. The personal and social economics of pain and disability are staggering, and Rebecca and Kate had a long-ranging conversation about advocacy for people living with pain.
Listen Now
You may have also seen NPAC’s Dawn Gibson recently featured on the same podcast discussing self-care.
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Making Progress in Colorado – Ongoing Advocacy
Collaboration with Colorado Medical Society to Implement S.B. 144
NPAC has been working in collaboration with the Colorado Medical Society to implement S.B. 144, newly passed legislation that protects patients on opioids from discrimination (see more about the law). NPAC drafted a fact sheet about S.B. 144 and a summary of the studies on tapering and discrimination for the Colorado Medical Society’s website. NPAC also drafted news blasts on the law for the various county-based newsletters going to Colorado providers to educate about the law's requirements. We’ve participated in podcast interviews about the law, and we will be placing a longer piece in the next formal publication of Colorado Medicine that features patient stories illustrating why the law is important.
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See a recent episode of Stethoscope with NPAC’s ED and Kenneth Maestas, who tells about his experience with a forced taper, here.
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Testimony In Colorado before the Department of Regulatory Affairs (DORA)
It’s important to remain vigilant when working toward policy and legal change. Shortly after S.B. 144 passed, the Colorado Department of Regulatory Authority (DORA) held a meeting seeking testimony about whether to adopt the 2022 CDC Guidelines in Colorado. NPAC testified and also submitted a comment that Colorado should adopt its own guidelines and that those guidelines must comport with S.B. 144. The Colorado Medical Society, which supported S.B. 144, also submitted a comment joined by the American Medical Association.
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NPAC In-Depth - Meet our People
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Meet Dr. Tamara Baker
Director Kate Nicholson sat down with Tamara Baker PhD to talk about her work with NPAC, equity, and pain.
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Kate: Why are you involved with NPAC’s Science and Policy Advisory Council and why do you think advocacy and education about pain are important?
Tamara: For the past few years, I’ve been interested in policy and advocacy but I didn’t know where to start. Being a Mayday Fellow gave me a glimpse, but being involved with NPAC has allowed me to take a ‘deeper dive’ into community advocacy/policy. Everyone should have equal access to care and resources. For this to become a reality globally, we can no longer work in silos. Ensuring access to care must be a collective effort among researchers, community advocates, politicians, and the healthcare system. NPAC is definitely paving the way in all areas.
Kate: What project or research are you working on right now that excites you?
Tamara: I’m currently working on a project, A biopsychosocial approach establishing baseline chronic pain experiences of (older) Black men: Assessing race, gender, and other social determinants of health, that is funded by The Mayday Fund. To appreciate the significance of this scholarly work, some context is needed.
The National Vital Statistics report that Black men have a lower life expectancy than their White, Asian, and Hispanic counterparts (71.2, 76.3, 83.5, and 79.1 years, respectively). This is second to that of Native Americans who have a life expectancy of 68.8 years. Heart disease (24.1%) and cancer (19.7%) are the leading causes of death in Black men. Black men also have increased rates
Their health status in the United States is a persistent crisis.
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Welcome Lindsay Baran to our BOD
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Meet Lindsay Baran, the newest member of NPAC’s Board of Directors. Lindsay has been part of NPAC from the start, serving as a member of our Science and Policy Advisory Council. She recently joined the Board, and we couldn’t be more thrilled. NPAC’s Board is primarily comprised of people with lived experience of pain: we are an organization run by and for people with pain.
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Lindsay is a person with lived experience of pain who brings a wealth of experience in health research and policy advocacy. She is the research director for the National Opinion Research Center (NORC) at the University of Chicago where she focuses on health equity, stakeholder engagement, and accessibility. Lindsay previously worked for 15 years in policy and advocacy, including as Policy Director at the National Council for Independent Living (NCIL), the nation’s largest grassroots disability rights organization with centers in every U.S. state and territory. Welcome, Lindsay!
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Opportunities to Participate in Clinical Studies
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Stanford University seeks your input for a study aimed at understanding the stress of navigating the healthcare system as a person with chronic pain.
All aspects of the study can be done remotely, on your phone or computer, and include:
- Completing a (30–45-minute) survey about the stress you have experienced in navigating the healthcare system for your chronic pain.
- You may also choose to re-take a shorter version of the survey 1 week after completing the first one.
You will be compensated for your time with an Amazon gift certificate. If interested, complete this brief online eligibility survey.
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CSI:Opioids Study Seeks People Who Have Lost Someone with Pain to Suicide
A new, federally-funded research study is working to examine and prevent suicides that have occurred after a reduction of stoppage of prescription opioids in people with long-term pain.
The study team is currently seeking survivors who have lost a family member or a close friend after opioid pain medicines were reduced. If you know someone who has suffered such a tragic loss, please share this information with them so that they can decide if they wish to participate.
Dr. Stefan G. Kertesz, a professor at the University of Alabama at Birmingham School of Medicine and NPAC advisor is the study’s principal investigator.
For people who are considering participation, there is a special screening survey. All information received is stored securely and is kept confidential.
Learn more.
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Survey for Medicaid recipients about care coordination
NPAC Board member and co-director of the Colorado Cross-Disability Coalition Julie Reiskin is seeking the input of people who use Medicaid in a survey about care coordination and case management for people with complex health conditions.
Different states are different with regard to Medicaid, and everyone uses different words to describe care coordination, but the survey is looking to identify what helps people with disabilities and complex health conditions use services. They want to hear from clients/families about what they want and what works well. All of the studies tend to ask the professionals what works, not people with complex conditions and their families. They will share the results with anyone who responds.
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