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Greetings. As I write, there’s snow on the ground in Colorado, but the calendar tells me it’s Spring! Welcome to our Winter/Early Spring 2024 Newsletter, covering activity since 2024 began. As always, we’ve been busy at the National Pain Advocacy Center (NPAC) working to advance the health and human rights of people living with pain.
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In this issue, you will find information about our recent advocacy, including efforts to address discrimination against people who use opioids to manage pain, and our work with the National Institutes of Health on three primary projects: HEAL CONNECTIONS, which is all about turning research into action, NIH PURPOSE, which endeavors to build the pain workforce, and the Advisory Council for the National Institute of Neurological Disorders and Stroke, which handles most of the pain-related research at NIH. You’ll also learn about our presentations on pain policy at the annual scientific meeting of the U.S. Association for the Study of Pain and much more!
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Medicaid/CHIP Advisory Workgroup Votes to Remove Opioid Dosage Threshold for Chronic Noncancer Pain from 2026 Quality Standards
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As part of continued efforts to rescind the misapplications of dosage thresholds from the Centers for Disease Control and Prevention (CDC)’s 2016 Opioid Prescribing Guideline, NPAC’s Executive Director, Kate Nicholson, and Science and Policy Advisory Council Advisor, Dr. Stefan Kertesz, testified in February at a convening of the Center for Medicaid and CHIP Services (CMCS) Child and Adult Core Sets Annual Review Workgroup. The task of this Workgroup was to review 2026 Child and Adult Core Sets, which are considered quality measures for Medicaid and the Children’s Health Insurance Program (CHIP) and are key indicators of access and care that Medicaid and CHIP beneficiaries receive.
Dosage thresholds drawn from the 2016 CDC Guideline were commonly adopted as quality measures throughout the healthcare system, and the Child and Adult Core Sets are no exception. NPAC’s testimony supported the removal of the standard, Use of Opioids at High Dosages in Persons Without Cancer (OHD-AD). The CDC itself recommended that the standard be eliminated and the Workgroup agreed, voting to remove this provision from the 2026 Child and Adult Core Sets.
NPAC continues to dedicate time and energy to protecting people who use opioids to manage pain from arbitrary dose thresholds and discrimination in care — all of which increased after the 2016 Guideline went into effect. You can read about NPAC’s past work on Colorado Law and its implementation here.
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The Census Bureau Listens to Advocates and Retains Current Census Questions on Disability for 2025
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Last year, the Census Bureau published a proposal to change questions defining disability for the 2025 Census. This proposal prompted considerable concern from disability advocates, who argued that the questions were likely to reduce the current estimates of people living with disabilities in the US in ways that could undermine everything from funding to services. Other criticisms of the proposal were its failure to account for many types of disabilities and the Bureau’s lack of coordination and transparency in working with the disability community and the public.
In February, the Census Bureau announced its intention not to change the questions for the 2025 census. The Bureau further committed to working with greater transparency and collaboration with the disability community in any future efforts.
NPAC worked collaboratively with other disability rights groups in opposing the proposal, especially with its colleague organizations in the Disability Economic Justice Collaborative.
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Legal Action Center Lawyers Consider Evaluation of Claims Involving Pain and Opioids
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 NPAC’s Executive Director was asked by the Legal Action Center (LAC), which litigates cases involving discrimination against individuals with Substance Use Disorders or those who have HIV or AIDs, to develop a training curriculum for evaluating complaints it has received regarding loss of access to pain medication. LAC had received an uptick of calls from people complaining that a doctor would not prescribe pain medication. LAC had received such complaints from people living with HIV, people with Substance Use Disorders, as well as people who don’t identify as having either. NPAC does policy-based advocacy and lacks the structure and resources to engage in active litigation, but it worked with LAC on evaluating legal theories for analyzing these complaints, fully recognizing the importance of legal strategies for social change.
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NIH HEAL CONNECTIONS Trains Researchers on Working with the Media
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NIH HEAL CONNECTIONS is part of the National Institutes of Health’s HEAL Program. CONNECTIONS is about translating research into action—everything from working with the media to engaging community stakeholders. NPAC is a National Association Partner on the HEAL CONNECTIONS team.
In April, NPAC’s Executive Director joined other panelists for the Sharing Session, Communicating for Impact: Getting Your Research in the Media, a skills-building webinar designed to help train researchers to translate their work to the media.
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NPAC TALKS: Major Meetings
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People with Lived Experience Collaborate with the National Institutes of Health to Advance Equity in Pain Management
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On March 14-15, NPAC Community Leadership Council Member Quána Madison contributed to the National Institutes of Health Workshop on Advancing Health Equity in Pain Management.
Quána was a Lived Experience Expert who collaborated with scientists, researchers, health equity advocates, and others on multi-level interventions that can support pain management equity.
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The group discussed: the social determinants of health that contribute to pain disparities at different levels; the infrastructure needed to support and/or deliver multi-level interventions; the cultural or community-specific approaches that can help shape multi-level interventions; and the kinds of outcomes and metrics that can best capture the impact of multi-level interventions for pain disparities.
Pain and inadequate pain management are often affected by sociocultural factors such as systemic bias and discrimination, financial inequality, stigma, and lack of access to healthcare, which is why a cornerstone of NPAC’s work is to ensure effective and equitable pain care so that all persons living with pain have the opportunity to lead full lives.
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5th Annual NIH HEAL Initiative Scientific Meeting Hears from Community Stakeholders
The 5th Annual NIH HEAL Initiative Scientific Meeting was held on Wednesday and Thursday, February 7-8, 2024. The Helping to End Addiction Long-term® Initiative, or NIH HEAL Initiative®, brings together HEAL-funded researchers, people with living and lived experience and other community partners, National Institutes of Health (NIH) leadership and scientific staff, and other stakeholders to share research findings, explore trends and shared interests and challenges, and identify opportunities to advance the initiative's goals.
NPAC closed out the conference, co-presenting on a panel with other community stakeholder partners on behalf of the HEAL CONNECTIONS team. The team addressed the critical importance of translating and disseminating science to people living with pain and their families. NPAC sees increasing science literacy and research awareness as an important pillar of advocacy for people with pain.
NPAC’s Executive Director and presenters representing key stakeholder communities impacted by pain or addiction discussed the importance of community engagement.
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US Association for the Study of Pain (USASP) Annual Scientific Meeting in Seattle Learns about Getting Pain on the Policy Agenda; Why Advocacy Matters and How to Do It
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 NPAC’s Executive Director, Kate Nicholson, and Board President, Juan Hincapie-Castillo presented at the annual meeting of the U.S. Association for the Study of Pain. NPAC had put together the proposal for this symposium entitled Getting Pain on the Policy Agenda; Why Advocacy Matters and How to Do It. It was a successful symposium with a highly engaged audience.
The session was moderated by law professor Diane Hoffmann, who co-chairs the Advocacy Committee for USASP, on which both Nicholson and Hincapie-Castillo sit. Hoffman briefly outlined the Board-approved goals of the committee and then Maria Hudspith, Executive Director of Pain BC Executive Director and Former Co-Chair of the Canadian Pain Task Force (Government of Canada), provided an update on comprehensive policy changes on pain in Canada, and Kate Nicholson discussed recent policy changes in the U.S. The conversation turned to how and why researchers and clinicians should become involved in advocacy, with Hincapie-Castillo describing his experiences in advocacy. The session concluded with a vigorous discussion of the limitations and benefits policy and advocacy work.
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(Image of a tweet from a USASP audience participant sending out Dr. Juan Hincapie-Castillo’s wise words)
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NPAC TALKS: Universities, Webinars, and Podcasts
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Washington and Lee University’s Institute for Honor Symposium, Addiction and Alienation in America: Corporate Responsibility and the Opioid Crisis
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In early March, NPAC’s Executive Director Kate Nicholson spoke at the Institute of Honor’s Symposium at Washington and Lee University to offer the perspective of people living with pain and of medical ethics.
The two-day symposium engaged a panel of four invited speakers: Beth Macy, bestselling author of Dopesick and Raising Lazarus, Tammi Etheridge, Visiting Professor of Law at W&L (addressing legal ethics), R. Edward Freeman, University Professor and Academic Director of the Institute for Business in Society at the University of Virginia Darden School of Business (addressing corporate ethics); and Kate Nicholson, Founder and Executive Director of the National Pain Advocacy Center (addressing medical ethics). The symposium was directed by Kish Parella, the Class of 1960 Professor of Ethics and Law, who engaged the panelists in a ranging discussion about the ethical considerations inherent in the crisis and its consequences.
NPAC’s Executive Director talked about how rigidly restrictive prescribing practices on the other side of the opioid pendulum swing have led to alienation and harm in people who use opioids to manage pain.
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NIH PURPOSE Network Learns about Core Outcomes Measures for Pain
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In April, NPAC’s Executive Director spoke on a web series on Navigating Careers in Research for the NIH PURPOSE project. She joined Giulia Bova and Laura Wandner of NIH and Esther M. Pogatzki-Zahn from the University Hospital in Muenster, Germany, to discuss a joint project of the U.S. and the European Union to establish core outcome measures (COS) for research for acute pain, chronic pain, episodic pain, and acute to chronic pain translation. Many patient-reported outcome measures, or PROMS, have been developed with no input from patients. NPAC was involved in this project because the votes of people with lived experience were weighted equally to those of scientists and clinicians in the Delphi voting process for determining these measures.
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NPAC Kicks off Meeting of the Pain Collaborative
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In March, NPAC's Executive Director and Board Secretary kicked off the meeting of a new collective called the Pain Collaborative to Advance Equitable Value-Based Solutions by asking what it means to take an equity-based and person-centered approach to pain care.
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The Pain Collaborative includes leaders representing people with lived experience, healthcare providers, insurers, employers, academia and policymakers. Its mission is to expedite access to quality whole health care for individuals with pain by fostering meaningful collaboration among diverse stakeholders and promoting innovative, equitable, and evidence-based solutions.
Nicholson began by defining terms such as equity vs. equality, disparities, social determinants of health, and intersectionality. She then engaged Dawn in a conversation about her experiences as a Black woman and as the creator of #SpoonieChat which draws a diverse group of people with pain. With this frame, the meeting went on to examine what it means to take a lived experience-centric approach to effective and equitable pain care.
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NPAC and Spondylitis Association Collaborate on Health Equity
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Dr. Samina Ali, Dr. Tamara Baker, Dr. Monica Mallampalli, and Kate Nicholson
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In February, partly in honor of Black History Month, NPAC and Spondylitis Association joined forces for the Health Equity Symposium: "The Global & Intersectional Experience of Pain." NPAC Science and Policy Advisors, Dr. Samina Ali, Dr. Tamara Baker, Dr. Monica Mallampalli, and Executive Director, Kate Nicholson, addressed the pervasiveness of health inequity in the pain space and how barriers to adequate healthcare, socioeconomic factors, and systemic disparities too often result in disproportionately adverse outcomes for individuals from marginalized communities. Topics addressed included Pain in children, Sex & gender differences in pain, Pain in older adults, and Racial inequity and pain, and Public health policies addressing pain.
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NPAC's ED Explains the Importance of Stakeholders with Lived Experience
NPAC’s Executive Director, Kate Nicholson, joined Edward Freeman as a guest on his Stakeholder Podcast. Freeman is an American philosopher and professor of business administration at the Darden School of the University of Virginia, particularly known for his work on stakeholder theory and business ethics. They had a wide-ranging conversation about their personal histories and the importance of including people with lived experience as stakeholders in research and policy, and art and music.
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Meet Quána Madison, a Member of our Community Leadership Council
Director Kate Nicholson sat down with Quána Madison to talk about her work with art, healing and equity.
Quána, you are an artist and an activist for the health and well-being of a variety of marginalized communities. Can you tell us a bit more, including how healing is a key component of your art and advocacy work?
Creating art and becoming a health & well-being advocate has supported my healing process. I believe the arts and meaningful arts engagements can nourish emotional well-being, promote connectedness, and help communicate important stories, perspectives, and new information. I use my lived experiences, artwork, and collaborations with community organizations such as the National Pain Advocacy Center, the National Institutes of Health, the National Minority Health Association, Colorado Artists in Recovery, and Habitat for Humanity to support health equity and community-based well-being efforts.
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NPAC OPPORTUNITIES: Participate in Studies
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Stanford University is developing new technology with the future goal of helping researchers and clinicians better assess ‘meaningful change’ in patients’ chronic pain treatment. It is extremely important that they include the perspectives of people who live with chronic pain.
The study consists of an online 30-minute survey, which can be completed from the comfort of your own home.
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Researchers at Washington State University Spokane are seeking people with chronic pain to participate in a two-hour pain education and skills training program.
This research aims to demonstrate whether Empowered Relief classes, taught by nurses, can help individuals better understand and manage their chronic pain. Empowered Relief is a scientifically tested program that may help individuals learn effective pain management skills and to understand pain better.
For more information, call or email the research team at 509–324–7443 or Spokane.painstudy@wsu.edu or click the link below.
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Have Chronic Pain? Stanford University seeks your input for a study aimed at understanding the stress individuals with chronic pain experience when navigating the healthcare system.
Complete an online questionnaire (approximately 30-minutes) from the comfort of your home.
If interested, click below or for more information, contact ashley.herrick@stanford.edu or call 650-207-3066.
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Virtual Meeting of the National Advisory Neurological Disorders and Stroke Council
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The Council Advises the National Institutes of Neurological Disorders and Stroke (NINDS), which is the part of NIH that contains the Office of Pain Policy and Planning and much of the pain-related work NIH does.
The meetings are partly open to the public followed by closed sessions when the Council considers review of grant applications. The NINDS may not award a grant unless it has been recommended for support by the Council.
In addition to application review, the Director utilizes the Council for advice related to:
- Program planning
- Concept clearance for NINDS initiatives
- Review of Board of Scientific Counselor reports on intramural research programs
- Review of objectives, priorities, and accomplishments of the Institute's extramural program
The Council provides the final review for all applications for research grants, training grants, and career development awards assigned to the NINDS, as well as for other requests for support for which Council approval is required by law. The council also provides clearance for concepts for new NINDS research initiatives involving set-aside funds.
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NPAC’s Executive Director Kate Nicholson comments on the relentless cost of chronic illness in Alissa Quart’s account of long COVID and other grey diseases for Time
NPAC Advisor Leo Beletsky in the New York Times on how language shapes policy and social response when we talk about the overdose crisis
NPAC Advisor Sean Mackey talks about tools to manage pain on the Huberman Lab
NPAC’s Jenn Oliva on how medical-legal partnerships can aid complex care of patients facing systemic inequities in the Journal of Law, Medicine & Ethics
NPAC Board Member Julie Reiskin remembers Kevin Williams, a change-making champion of disability rights in an interview with a Denver news station
Julie Reiskin was also featured in an article on the hazards of travel as a wheelchair user
NPAC Board Member Juan Hincapie-Castillo pens a letter to the editor in the New York Times responding to the DEA’s and opioid supply limits
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