ADVOCACY
We will transform how pain is understood and treated.
OUR ADVOCACY GOALS & METHODS
We advocate to:
eliminate barriers to care, including arbitrary limits on medication.
promote education about pain.
promote research funding that reflects how common and costly pain is.
promote access to and payment for a range of pain treatment.
promote care grounded in dignity, science, compassion, and innovation.
We educate about:
the many kinds of pain, and the recognition that chronic pain can be a disease.
the difference between dependence and addiction, and the understanding that many people appropriately require and rely on medication.
inequities and disparities in pain research and treatment.
the life-limiting and disabling pain consequences of poorly treated pain.
the personal and social costs of our failure to invest in pain treatment.
NPAC is a policy-focused advocacy group working for systems level change.
Unfortunately, we cannot do case work for individual patients nor intervene with their doctors.
OUR ETHICS
Three layers of protection ensure that our work is separated from commercial relationships or interests.
As an organization, we pledge to not accept funds from pharmaceutical companies or others in industry that may create actual or perceived conflicts of interest.
Our team has submitted disclosures, and we have a recusal process.
We’ve received funding from Open Society Foundations, the Ford Foundation, the BOREALIS Foundation’s Disability Inclusion Fund, and individual donors.
RECENT NPAC ADVOCACY
HHS/OCR Proposed Updated and Expanded Regulations under Section 504 of the Rehabilitation Act
NPAC submitted comments on discrimination in medical treatment
DEA’s Proposed Aggregate Production Quotas for Schedule I and II Controlled Substances.
NPAC submitted extensive comments opposing DEA’s proposed reduction of the medical supply of opioids for the 8th consecutive year
Advancing Research for Chronic Pain Act
NPAC sent an extensive letter to the Chair and Ranking Member of the Senate HELP Committee supporting this Act
Colorado Adopts Law Protecting Prescription Drugs for Chronic Pain
NPAC is advocating in Colorado to protect prescription drugs for people with pain.
DEA’s Concurrent Proposed Rules on Telemedicine Prescribing of Controlled Medications
NPAC filed extensive comments on DEA proposals to roll back telemedicine prescribing of controlled medications warning of immense patient harm if implemented.
Federation of State Medical Boards
NPAC filed a comment on the Federation of State Medical Board’s draft update to its prescribing guideline.
Health and Human Services Rule
NPAC filed a comment on the Department of Health and Human Services’ proposed rule related to Section 1557 of the Affordable Care Act (ACA), Nondiscrimination in Health Programs and Activities. Our comment focused on discriminatory Clinical Care Algorithms.
Board of Pharmacy Specialties
NPAC filed a letter in support of the Board of Pharmacy Specialties’ effort to establish a pain management pharmacy practice board specialty.
Center for Medicare and Medicaid Services (CMS)
NPAC filed a formal comment on the Center for Medicare and Medicaid Services’ proposal to create a Bundle Payment on Chronic Pain Management. NPAC endorses the idea but highlights several concerns about the bundle’s design and implementation.
CDC 2022 Guideline
NPAC filed its extensive written comment on the CDC’s 2022 proposed prescribing Guideline.
Minnesota Bill
NPAC supported a bill in Minnesota to protect care for people with pain.
US Supreme Court Amicus Brief
NPAC filed an amicus curiae brief in Ruan v. US and Kahn v. US on the proper standard for holding prescribers liable under the Controlled Substances Act. We focused on the “chilling effect” on pain care and risks to patient safety of incorrect standards.
Update:
In June 2022, the Supreme Court Ruled Unanimously (9-0) in Ruan v. US, entirely adopting the argument made by NPAC as Amicus Curiae.
For a full list of NPAC’s Advocacy, visit our Advocacy Archive
ADVOCACY OPPORTUNITIES NPAC IS WATCHING
NPAC is watching a number of activities.
Have a Suggestion? Email info@nationalpain.org.
ADVOCACY HISTORY
Our actions have already influenced important policy change:
• NPAC’s Executive Director, Kate Nicholson, and Board President, Juan Hincapie-Castillo, presented at the annual scientific meeting of the U.S. Association for the Study of Pain, delivering the symposium, Getting Pain on the Policy Agenda: Why Advocacy Matters and How to Do It.
• NPAC’s Executive Director addressed the Canadian Pain Society’s Annual Scientific Meeting in Ottawa.
• NPAC Community Leadership Council Member Quána Madison represented NPAC as a Lived Experience Expert at the National Institutes of Health Workshop on Advancing Health Equity in Pain Management.
• NPAC’s Executive Director Kate Nicholson spoke at the Institute of Honor’s Symposium at Washington and Lee University on Addiction and Alienation in America: Corporate Responsibility and the Opioid Crisis presenting the perspective of pain and medical ethics.
• NPAC’s Executive Director spoke as part of a web series on Navigating Careers in Research for the NIH PURPOSE project on a joint US-EU project to establish core outcome measures (COS) for research for acute pain, chronic pain, episodic pain, and acute to chronic pain translation.
• NPAC’s Executive Director participated as a panelist in the HEAL Connections 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.
• NPAC's Executive Director and Board Secretary, Dawn M. Gibson, 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.
• NPAC’s Executive Director 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 known for his work on stakeholder theory and business ethics.
• NPAC successfully testified to support the removal of the Opioid Dosage Threshold for Chronic Noncancer Pain from 2026 Quality Standards for the MEDICAID/CHIP program due to the risk of patient harm. The MEDICAID/CHIP advisory committee voted to remove this provision.
• NPAC partnered with other disability rights organizations to oppose the Census Bureau's proposal to change questions about disability in the 2025 census. The new questions were likely to reduce current estimates of people living with disabilities in the US in ways that could undermine everything from funding to services. The Census Bureau agreed to retain the current questions for 2025.
• NPAC’s Executive Director spoke at the 5th Annual NIH HEAL Initiative Scientific Meeting on the importance oftranslating and disseminating science to people living with pain and their families.
• NPAC’s Executive Director participated in her first two-day meeting as a provisional appointee to the National Advisory Neurological Disorders and Stroke Council (Council). The National Institutes of Neurological Disorders and Stroke oversees most NIH pain research.
• NPAC worked with lawyers at the Legal Action Center on how to evaluate legal claims related to healthcare abandonment and termination of opioids in people taking them for pain.
• NPAC collaborated with Spondylitis Association to deliver the Health Equity Symposium: "The Global & Intersectional Experience of Pain." The symposium was delivered by NPAC Science and Policy Advisors Dr. Samina Ali, Dr. Tamara Baker, Dr. Monica Mallampalli, and Executive Director Kate Nicholson.
• NPAC’s ED met with policymakers on Capitol Hill regarding recent federal legislation related to pain
• As part of ongoing implementation efforts for S.B. 144, a Colorado law protecting people with pain who require opioids, NPAC’s ED published The Last Word in Colorado Medicine, the magazine of the Colorado Medical Society
• NPAC submitted a formal comment in response to the HHS proposed rule updating the regulation under Section 504 of the Rehabilitation Act of 1973. The comment addressed discrimination in medical treatment.
• NPAC submitted formal comments opposing the DEA’s proposal to reduce the medical supply of opioids for the 8th consecutive year.
• NPAC drafted talking points that were distributed to the harm reduction/drug policy community on the DEA’s proposed rule urging public comment.
• NPAC submitted a letter to the Chairman and Ranking Member of the Senate HELP Committee in Support of the Advancing Research for Chronic Pain Act and advising the committee on discrimination against people with pain.
• NPAC’s ED presented at the European Pain Federation’s 2023 Congress on a global initiative to establish core research domains for pain. She spoke about involving people with lived experience, whose votes were weighted equally to those of researchers and clinicians.
• NPAC was selected to present at the DEA’s listening Session on Telemedicine Prescribing. NPAC’s President provided its testimony.
• NPAC successfully advocated with The Board of Pharmacy Specialties (BPS) to create a new specialty in pain management pharmacy.
• NPAC’s ED, and Science and Policy Advisors, Baker and Mallampalli, participated in the fall meeting of the Interagency Pain Research Coordinating Committee.
• NPAC’s ED joined the governing board of NIH PURPOSE, a new initiative to build the pain workforce and support collaboration among researchers.
• NPAC’s ED spoke in Washington, D.C., to the 2023 Mayday Fellows on strategies for advocacy and policy change
• NPAC’s ED met with policymakers on Capitol Hill regarding recent federal legislation related to pain
• NPAC worked with the Colorado Medical Society to Implement S.B.144 through county and state-level newsletters and speaking on podcasts.
• NPAC’s ED and President were appointed to the advocacy council of the US Association for the Study of Pain (USASP.)
• NPAC worked on a video story in the New York Times that featured NPAC’s Dawn Gibson on how patients who require opioids face barriers to care.
• NPAC spoke in an inclusive storytelling and language learning session for NIH researchers focused on pain as part of its partnership with HEALConnections.
• NPAC spoke on Crisis Jam, a broadcast dedicated to suicide prevention, about suicide following opioid discontinuation.
• NPAC participated in a podcast mini-series offering four recordings on stigma in the overdose crisis: two with a focus on pain and two with a focus on addiction.
• NPAC spoke on pain and mental health in a panel for Pain Canada.
• NPAC did a podcast episode for the Opioid REMS training on opioid tapering offering a provider and patient perspective.
• NPAC spoke on Off/Kilter Podcast with Rebecca Vallas of The Century Foundation about advocating for the health and human rights of people living with pain.
• NPAC spearheaded the passage of a new law in Colorado that protects people who require opioids from discrimination at clinics and pharmacies and also protects their providers.
• NPAC presented patient stories before the World Health Organization about the importance of new codes for the diagnosis and treatment of chronic pain.
• NPAC’s ED was featured in a Newsweek cover story about how the opioid backlash has gone wrong and in other press on a novel study identifying biomarkers for chronic pain.
• NPAC joined a multi-disciplinary summit at Cornell University about digital technology and pain to speak on privacy and equity.
• NPAC testified before the California Medical Society to provide input on updating its prescribing guidelines.
• NPAC’s ED spoke at the Canadian Pain Society on the ethical imperative to do no harm in treating people with pain and people with addiction.
• NPAC’s Advisor Samina Ali helped spearhead the world’s first standards for treating pain in children.
• NPAC spoke on the safe disposal of medications at a public workshop hosted by the National Academies of Sciences, Engineering, and Medicine.
• NPAC’s ED participated as faculty at the Rx Illicit Drug Summit one of the first times Pain was featured at the summit.
• NPAC’s ED and advisor, Leo Beletsky, published an opinion piece in the Los Angeles Times criticizing the DEA’s proposal to limit telemedicine prescribing of controlled medications. The DEA has temporarily extended such prescribing.
• NPAC began work with the HEAL Connections team on a landscape analysis of laws and policies impacting the care of people with pain.
• NPAC’s ED testified in both the Senate and House on SB 144 in Colorado, a bill designed to protect people with pain from discrimination in healthcare.
• NPAC filed a comment on the Federation of State Medical Boards’ draft updated prescribing guidelines as part of an ongoing effort to work with the FSMB on its update.
• NPAC filed extensive comments on proposed rules issued by the DEA on telemedicine prescribing of controlled medications, warning of immense patient harm if the proposals are implemented.
• NPAC Community Leadership Council member, Quana Madison, and advisor, Dr. Sean Mackey, were featured in an article in Nature about chronic pain management.
• NPAC Community Leadership Council member, Charis Hill, and advisors, Dr. Sean Mackey and Dr. Stefan Kertesz, were featured in a San Francisco Chronicle piece on barriers to medication and care.
• NPAC began work on a bill in Colorado to protect people with pain who require controlled medications from discrimination in care.
• NPAC met with the U.S. Department of Justice on algorithmic discrimination in pain care.
• NPAC met with the Washington Department of Health to advise against its adoption of Bamboo’s NarxCare scoring due to concerns about algorithmic discrimination.
• NPAC’s ED helped develop the first Consensus Guidelines on Perioperative Cannabis and Cannabinoids, published in January.
• NPAC advisor Dr. Hance Clarke gave an hour-long interview on the CBC/Canadian public broadcaster on failures in chronic pain treatment in Canada.
• NPAC’s ED keynoted a conference at UCSF, addressing “Advocacy, Equity, Access, and the Lived Experience of Pain.”
Two major initiatives NPAC has worked on for years were issued in November:
• The Centers for Disease Control and Prevention (CDC) issued its 2022 updated prescribing guideline rejecting one-sized limits on opioid prescribing and embracing flexibility in treating pain.
• The Center for Medicare and Medicaid Services (CMS) expanded coverage for chronic pain, including through telehealth, creating coding for chronic pain management.
• NPAC Board and Community Leadership Council members spoke at the first annual Pain Canada conference on why pain is an intersectional disability justice issue.
• NPAC ED was core faculty at the Annual Scientific Meeting of the Association of Regional Anesthesia and Pain Medicine (ARSA).
• NPAC presented at the International Association for the Study of Pain (IASP)’s World Congress on Pain on Prescribing, Tapering, and the Opioid Pendulum Swing.
• NPAC ED spoke to the Federation of State Medical Boards’ meeting on updating its guidelines on prescribing and PDMPs.
• NPAC facilitated a meeting with the National Academy of Medicine of people with lived experience of pain.
• NPAC commented on diversity and inclusion guidelines for researchers and scientists.
• NPAC sent a letter in support of the Board of Pharmacy Specialties’ effort to establish a pain management pharmacy practice board specialty.
• NPAC filed a formal comment on the Department of Health and Human Services' proposed rule pursuant to Section 1557 of the Affordable Care Act (ACA) related to Clinical Care Algorithms.
• NPAC ED spoke at the National Harm Reduction Conference on why pain management is a harm reduction issue and co-led a session on writing and placing op-eds.
• NPAC held organizational meetings in support of a state pain bill in Colorado.
• NPAC ED spoke on Emergency Medical Minute about opioids for pain and the latest studies on opioid tapering.
• NPAC commented on the Center for Medicare and Medicaid Services' proposal to create a payment code for Chronic Pain Management.
• NPAC applied with allied groups for NIH/Heal Initiative grant to establish a Research Dissemination and Engagement Center (awarded in September).
• EU-Integrate - NPAC’s ED joined the advisory board of a joint NIH-EU effort to establish core research domains for acute pain, acute to chronic translation, episodic pain and chronic pain.
• NPAC’s ED spoke on the importance of Telehealth hosted by Healthy Women.
• NPAC presented Symposium: Pain Inequities and Disparities: The Importance of Intersectionality at the USASP 2022 Scientific Meeting.
• NPAC worked with National Academy of Medicine on Chronic Pain Journey Map.
• US Supreme Court rules 9-0 unanimously adopting argument made by NPAC in Ruan v. US.
• Held Congressional briefing and conducted meetings with Senate HELP and House Energy and Commerce Committees and key members on CDC’s proposed prescribing guideline.
• Filed an extensive written comment on the CDC proposed prescribing guideline.
• Developed materials to assist in filing comments, due April 11, to Centers for Disease Control and Prevention’s Updated Prescribing Guideline, published Feb 10.
• Oral argument took place on March 1 in the US Supreme Court on the two cases in which NPAC submitted an amicus brief.
• NPAC’s Executive Director and Advisors were widely quoted in media on both the CDC Guideline and the Supreme Court case, in New York Times, in Scientific American, the Guardian, Reason, Medpage, & STATnews, among others.
• NPAC supported a bill in Minnesota to protect care for people with pain.
• Met with Center for Medicare and Medicaid Services on Chronic Pain.
• Met with the Colorado Health Institute on its representation of statistics on opioids (prescribed vs. illicit).
• Filed an amicus curiae brief in the US Supreme Court cases, Ruan v. US and Kahn v. US, on the proper standard for holding prescribers liable under the Controlled Substances Act. We focused on the “chilling effect” on pain care and risks to patient safety of incorrect and inconsistent standards.
• Participated as invited presenters at the National Academy of Medicine’s Telehealth & Virtual Care Meeting.
• Hosted meetings on Capitol Hill, including with the Senate HELP and House Energy and Commerce Committees, to address concerns regarding pain care.
• Presented about the organization and its mission at the International Association for the Study of Pain’s GAPPA Uplift Conference.
• Presented a webinar about pain advocacy for Pain BC (British Columbia).
• Responded to the American Psychological Associations call for comments on its proposed guideline for treating chronic pain.
• We were invited speakers at the Food and Drug Administration’s public meeting on provider education.
• Met with U.S. Department of Justice to brief them on AI/Algorithmic discrimination.
• Responded to Center for Medicare and Medicaid Services’ (CMS) request for comment on its coding and billing changes for chronic pain management.
• Responded to Office of Women’s Health Research at National Institutes of Health request for comment on suggested areas of research related to chronic debilitating conditions affecting women.
• Responded to Food and Drug Administration’s (FDA) request for comments related to its summit on Morphine Milligram Equivalents.
• Provided solicited commentary in Colorado on its PDMP audit, and testified during hearings on prescribing guidelines.
• CDC’s Opioid Workgroup delivered its report on proposed revisions to its prescribing guidelines. NPAC’s President and Advisors were part of the Workgroup, and NPAC provided testimony at the CDC’s meeting.
• Provided testimony to Food and Drug Administration Summit on Morphine Milligram Equivalents (MMEs).
• Presented Abstracts at the National Academy of Medicine Stigma of Addiction Conference.
• Responded to the Agency for Healthcare Research and Quality (AHRQ) call for comment on its draft report on Integrated Pain Management Programs.
• Met with Department of Justice Civil Rights Division on issues involving access to care and services.
• Met with White House Office of National Drug Control Policy (ONDCP).
CARA 2.0/3.0. NPAC successfully fought a federal bill that would have imposed arbitrary and harmful three-day limits on opioid prescribing nationwide. Read our press release here.
• NPAC provided additional requested feedback to NQF on its Opioids and Behavioral Health Environmental Scan
• Delivered an opening keynote at a conference on pain management on the importance of good pain policy.
• Commented on the FDA’s evaluation of its REMS program for opioid prescribing.
NPAC commented on NQF’s draft Opioids and Behavioral Health Environmental Scan, urging NQF to include metrics to measure patient outcomes.
We presented on advocacy for policy change to improve chronic pain treatment at the 2020 meeting of the US Association for the Study of Pain (USASP).
We provided extensive feedback on the National Institute for Health and Care Excellence (NICE) Chronic Pain Assessment and Management Guideline proposed in the United Kingdom, responded to calls for public comment from the Drug Enforcement Agency and the Oregon Health Authority, and offered solicited testimony during state opioid hearings in Minnesota.
Members of our team were appointed by the Board of Scientific Advisors of the CDC to the Workgroup to provide expert input on the update/expansion of the 2016 CDC Guideline for Prescribing Opioids for Chronic Pain.