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Greetings and best wishes for a happy, healthy 2024. Welcome to our fall/winter newsletter as we wrap up 2023. 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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Here you will find information on our recent advocacy, including continued efforts to implement SB 144, a new law in Colorado that protects people who need opioids for pain and their providers, meetings with policymakers on Capitol Hill, and responses to federal agency requests for public comment. We have done a lot of speaking – including internationally at the European Pain Federation’s World Congress, the largest global pain conference in 2023. Our members have been appointed to key federal committees. We’ve gotten significant media coverage and much more.
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NPAC ADVOCATES: Legislative and Regulatory Actions
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Efforts Continue to Implement S.B. 144 in Colorado
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Those who have followed our work know that we supported a new law in Colorado that made Colorado one of the first states to offer a safe harbor for providers who prescribe opioids appropriately and to protect people with chronic pain who require the use of opioids from discrimination at clinics and pharmacies. Getting a law passed is only the first step; ensuring proper implementation by making healthcare providers aware of its requirements is equally as important.
 This fall NPAC worked on implementation by writing blurbs about the law for each county-level medical society. We joined the Northern Colorado Medical Society’s Stethoscope podcast for a discussion about the law, which you can listen to nocomedsoc.org or buzzsprout.com.
Our fact sheet about the law appears on the websites of the Colorado Medical Society and the Colorado Pain Society. Our Executive Director, Kate Nicholson, also wrote an article about the law in the Fall 2023 publication of Colorado Medicine, the official magazine of the Colorado Medicine Society, which you can read here.
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NPAC advocates on Capitol Hill
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While in Washington D.C. for a speaking engagement, our Executive Director conducted meetings on Capitol Hill with members of the Senate Committee on Health, Education, Labor, and Pensions (HELP) Committee, which is responsible for health policy.
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NPAC also wrote a substantive letter to the Chair and Ranking Member of the HELP Committee urging support for the Advancing Research for Chronic Pain Act. Current federal research on chronic pain tells us that 50 million people suffer from pain every day or nearly every day, and between 17-20 million have pain so severe that it regularly prevents them from participating in work and life activities. But significant gaps in our understanding remain. This Act directs the Secretary of Health and Human Services to conduct research to fill these gaps, requires collaboration with individuals and organizations with chronic pain expertise to develop standard definitions and better approaches to make research meaningful, and provides for the establishment of a Chronic Pain Information Hub, a public webpage that summarizes up-to-date data.
You can read our letter in support of the bill, which has been incorporated into a larger bill, the reauthorized SUPPORT ACT, that will now go to the full Senate floor, here.
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The Department of Health and Human Services Proposes Updated Regulations on Discrimination in Healthcare Services
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Discrimination in healthcare on the basis of disability is covered by three related laws, the Americans with Disabilities Act, the nondiscrimination provisions of the Affordable Care Act, and section 504 of the Rehabilitation Act of 1973. For the first time in 40 years, the Department of Health and Human Services has done a major update and proposed expansion of the regulations under section 504. One of the most important aspects of that update is an expanded section on discrimination in healthcare. NPAC wrote a comment supporting the Department’s proposed expansion, illustrating its importance by offering the example of discrimination against people living with pain.
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The National Institutes of Health Officially Designates People with Disabilities as a Population that Experiences Health Disparities
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NIH officially designated people with disabilities as a population that experiences health disparities. The new designation is a win for dedicated advocates who were watching this process and alarmed when an advisory council recommended against the designation. Advocates intervened and objected which led to the approval.
Pain is a chief cause of disability, and this recognition is critical for research and funding supported by the NIH.
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The Drug Enforcement Administration Extends Telemedicine Prescribing of Controlled Substances until the end of 2024 but Cuts the Medical Supply of Opioids for the 8th Consecutive Year
In our last newsletter, we described our efforts to encourage the Drug Enforcement Administration (DEA) to extend telemedicine prescribing following the end of the public health emergency, including our extensive formal comments on two different DEA proposed rules and an opinion piece coauthored by our Executive Director, Kate Nicholson, and NPAC Science and Policy Advisor, Leo Beletsky, for the Los Angeles Times.
In response to the overwhelming number of public comments it received, the DEA decided to hold a public hearing and asked organizations to apply in order to speak. NPAC applied and was chosen to deliver testimony on behalf of people living with pain. Our Board President, Juan Hincapie-Castillo, who is also a PharmD, delivered NPAC’s testimony. The DEA decided temporarily to extend all telemedicine prescribing – including allowing virtual prescribing of controlled medications – until the end of 2024.
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NPAC made extensive efforts to urge the DEA not to cut the medical supply of opioids for the 8th consecutive year. We drafted talking points and sent them out to allied organizations in harm reduction and addiction medicine in order to get more organizations to take on the issue of interruptions in care for people with pain who use opioids. Many harm reduction groups wrote comments on the issue, one of which from a think tank called R Street was covered by Pain News Network.
We told personal stories of our members who have been directly affected by shortages in opioid pain relievers, which are due to many influences but production quotas established by the DEA (based on a determination of need from the Food and Drug Administration (FDA)) are certainly part of the problem. We took issue with the measures used to flag suspicious prescriptions. But in the end, the DEA decided to finalize the cuts it proposed. This issue has been particularly difficult to change because two federal agencies, the FDA and the DEA, have joint responsibilities over determining supply quotes. The DEA relies on determinations made by the FDA of medical needs, but organizations were only able to comment on the DEA’s proposal, not the FDA’s determinations.
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FDA approves the first CRISPR gene editing therapies for Sickle Cell Disease
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A significant recent development for people living with Sickle Cell Disease was the FDA’s decision to approve two novel gene editing therapies. Sickle Cell Disease is a painful, debilitating chronic disease affecting more than 100,000 Americans. Advocates continue to have concerns regarding the access and affordability of this gene editing therapy. There are also uncertainties regarding risk and how many people will be helped. Nevertheless, until this moment, the only existing transformative therapy for the disease was a bone marrow transplant, and many people do not find suitable donors. The approvals are an important development in the treatment of a disease that causes significant pain.
You can read more about the therapy on nbcnews.com and scientifcamerican.com.
In the meantime, people continue to suffer pain from Sickle Cell Disease. Check out NPAC Community Leadership Council member extraordinaire, Jemela Williams, as she explores the day-to-day issues impacting people with Sickle Cell Disease, including this video on period pain and Sickle Cell.
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Collaborative Advocacy Efforts
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NPAC joined efforts with other organizations as well, collaborating on comments on everything from the American Psychological Association’s (APA) Draft Clinical Practice Guideline for the Treatment of Chronic Musculoskeletal Pain in Adults to updating the basic asset requirements for people on Supplemental Security Income or SSI, which provides monthly payments to low-income people with disabilities and older adults, to urging the census bureau not to change the definition of disability for federal census proposes, among many others.
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NPAC ADVOCATES: Other Advocacy Victories
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The Board of Pharmacy Specialties Creates a New Specialty in Pain Management Pharmacy
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This fall, the Board of Pharmacy Specialties voted to create a new specialty in pain management pharmacy. NPAC had advocated in support of this effort. We argued that the recognition and promotion of specialized training and skills in pain management is of utmost importance given the current needs in the United States, where chronic pain is the most pervasive chronic health condition, with fifty million Americans, or 1 in 6, in daily or near-daily pain, and almost 20 million in pain severe enough that it regularly prevents them from engaging in basic life activities and work. We also pointed out that the co-occurring drug overdose crisis and the shortage of specialists in pain management have left too many people living with pain with impeded access to appropriate pharmacotherapy services.
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Advancing Pain at NIH through the National Advisory Neurological Disorders and Stroke Council
Kate Nicholson, our Executive Director, was asked to become a member of the National Advisory Neurological Disorders and Stroke (NANDS) Council, the advisory council for the National Institute of Neurological Disorders and Stroke (NINDS) at the National Institutes of Health pending formal appointment by the Secretary of the Department of Health and Human Services. Kate will participate in meetings without voting until the Secretary acts in this year’s slate of candidates.
Because there is no National Institute for Pain at NIH, pain lives within the NINDS. The advisory council advises on research funding and grants. NINDS may only award a grant if it has been recommended by the advisory council. In addition, the council assists with program planning, concept clearance for NINDS initiatives, review of the Board of Scientific Counselor reports on intramural research programs, and review of objectives, priorities, and accomplishments of the Institute's extramural program.
Nicholson was also provisionally tasked with serving on the Multidisciplinary Working Group that allocates funding under the NIH HEAL Initiative. This initiative is funded by Congress to focus on research for pain and addiction. Learn more at heal.nih.gov.
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Building the pain workforce through the NIH PURPOSE Network
Kate also joined the governing board of a new initiative at NIH to build the pain workforce. Known as the PURPOSE Network, this initiative connects researchers from all disciplines and career stages across the pain continuum, providing a centralized hub that aggregates opportunities, enables collaboration, and offers ongoing webinars, training opportunities, and an annual in-person meeting for pain research.
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Advancing Pain Research and Federal Coordination through the Interagency Pain Research Coordinating Committee (IPRCC)
Also, this fall, NPAC Science and Policy Advisors Tamara Baker and Monica Mallampalli and our Executive Director, Kate Nicholson, participated in their first official meeting as appointees of the Interagency Pain Research Coordinating Committee. The IPRCC is a Federal advisory committee that was created by the Department of Health and Human Services to enhance pain research efforts and promote collaboration across the government, with the ultimate goal of advancing the fundamental understanding of pain and improving pain-related treatment strategies. Learn more at iprcc.nih.gov.
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NPAC TALKS: Speaking and Publications
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We’re constantly on the road speaking about pain. Here are a couple of key highlights.
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European Pain Federation (EFIC)’s 13th World Congress on Pain
Kate Nicholson, our Executive Director, spoke at the largest global Congress on pain in 2023 – the EFIC World Congress in Budapest. She joined speakers from the National Institutes of Health and the IMI-Pain Care in the European Union to talk about developing core outcome domains for acute, chronic, and recurrent pain and the transition from acute to chronic pain. Core outcomes are the basic outcomes that should be measured in all research regarding pain: things like pain intensity and interference, the impact on quality of life and function, etc. Core outcome sets have been developed for many health conditions and even some specific conditions that cause pain, but none existed that spanned the continuum of pain.
One of the things that made this process different – and the reason Kate was involved and spoke about it –was the deep involvement of people with lived experience of pain at every step of the process. It matters to have those who live with the condition say what outcomes impact them the most.
NPAC was able to help engage a diverse group of people with lived experience throughout the process. The process of developing consensus was called a Delphi process used often in research, which typically involves two or three rounds of voting as voters tighten the list of outcomes. The project was called Integrate-Pain Delphi. You can read more about the voting process here. We recently published a piece in the scientific literature about Integrate-Pain, which you can read here.
What was so critical and unique about this project is that people with lived experience were not just part of the advisory council – the votes of people with lived experience were given equal weight to those of researchers and scientists in determining the core outcomes.
NPAC is run by and for people with lived experience of pain. Our Board is primarily comprised of people with lived experience, and we have been working vigorously to engage people with lived experience at higher levels in all pain research. We believe in a core adage of the disability rights movement, “Nothing about us, without us.”
Adopting core outcome domains in research and clinical practice is important because it will make it possible to compare different conditions across the world and across pain studies. The data are important to the allocation of resources, the discovery of new treatments, and the improvement of pain care globally.
While in Europe, Kate also met with representatives from the International Association for the Study of Pain (IASP) to collaborate on ideas for workshops of importance to people with lived experience of pain for its 50th Anniversary World Congress on Pain in Amsterdam in 2024.
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Mayday Pain and Society Fellows Keynote
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For the second year, our Executive Director keynoted the final dinner of the Mayday Pain & Society Fellows in Washington, DC to talk about how they can engage in advocacy.
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Kate was a 2019-2020 Mayday Pain and Society Fellow and several members of NPAC, including Dr. Samina Ali, Dr. Tamara Baker, Dr. Hance Clarke, Dr. Daniel Goldberg, and Dr. Sean Mackey, are all former Mayday Fellows. NPAC President, Juan Hincapie-Castillo, was a Mayday Fellow this year.
Kate spoke about her work at NPAC, and she spoke broadly about advocacy, coalition building, working with policymakers and legislators, and working with members of the media to change the narrative about pain.
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USASP Symposium Proposal on Advocacy Accepted
We recently received notice that our proposal for the U.S. Association for the Study of Pain (USASP)’s Annual Scientific Meeting in Seattle in 2024 was accepted. We will present a Symposium on “Getting Pain on the Policy Agenda: Recent Policy Advancements, Why Advocacy’s Important, and How to Do It." Speakers include Maria Hudspith, co-chair of the Canadian Pain Task Force and co-author of the Canadian Action Plan on Pain, who will discuss what’s happening in Canada and Kate Nicholson, who will discuss policy progress in the U.S. Rounding out the discussion will be a junior and senior researcher talking about why advocacy is important for scientists and practitioners, NPAC President, Juan Hincapie-Castillo, and Dr. Carmen Green, both of whom will also focus on equity and pain. The session will be moderated by law Professor Diane Hoffmann.
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NPAC OPPORTUNITIES: Participate in Clinical Trials
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Have you lost someone with pain to suicide, or do you know someone who has?
A new research study seeks to interview people who have lost a friend or family member to suicide in the time following a taper or stoppage of opioid pain medication. So far, there has been no effort to understand these losses in depth. That makes it hard to prevent these tragedies.
The study team is led by Dr. Stefan Kertesz at University of Alabama at Birmingham. Dr. Kertesz serves on NPAC's Science and Policy Advisory Council. He has also spoken out on behalf of people with both disability and pain. Pain News Network published Dr. Kertesz's description of this study with the headline "Why We Need to Study Suicides After Opioid Tapering" which you can read here.
Interested people should review the online screening survey at go.uab.edu/csiopioids or they can call 1-866-283-7223. People who qualify under the screening survey will be asked to consider whether they would like to do a longer interview. All information is kept entirely confidential. General information about the study is at csiopioids.org.
This study is approved by the Institutional Review Boards at the University of Alabama at Birmingham and the US Department of Veterans Affairs.
For anyone thinking about suicide, please contact the 988 Suicide & Crisis Lifeline, available online, via chat, or by dialing “988.”
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NPAC IN-DEPTH: Introducing Mara Baer
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Introducing Mara Baer: The newest member of our Science and Policy Council
Tell us about yourself, and your personal and professional background related to health and pain.
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I have been working in health care for over 25 years, largely in health care policy at both the state and federal levels. My expertise is in Medicaid and Affordable Care Act coverage policy and in navigating complex legislative and regulatory environments. I own a health consulting firm called AgoHealth, which provides policy analysis, facilitation, and strategic advisory supports for organizations navigating today’s healthcare environment.
On the personal side, I have Thoracic Outlet Syndrome (TOS), a nerve condition that causes nerve entrapment and related pain. As a person living in pain for nearly 10 years, I wanted to bring my personal and professional experiences together to activate change for pain sufferers, so I’ve recently increased focus on chronic pain policy, advocacy, and education.
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Maia Szalavitz recently wrote an extremely thoughtful piece for the New York Times, How We’re Thinking About Pain All Wrong, quoting our Executive Director as well as Science and Policy Advisor, Daniel Goldberg.
Our Executive Director, Kate Nicholson, penned The Final Word for the fall issue of Colorado Medicine.
Read the scholarly article in eClinical Medicine, part of THE LANCET Discovery Science, about the INTEGRATE-Pain study in which patient advocates participated in establishing core research domains for pain.
NPAC members are busy advocating on many fronts and thriving. Read these two pieces from the Washington Post. One features NPAC Board Member, Julie Reiskin, regarding a recent case before the U.S. Supreme Court on accessibility in hotels. Another talks about gardening while disabled, featuring NPAC Community Leadership Council Member, Charis Hill. You can learn more about Charis’s story in this video.
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