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Greetings! We hope the new year is off to a healthy and positive start for you. Rather than adding to the flood of year-end emails, we waited to share this recap of our Fall/Winter 2024 activities. We're thrilled to update you on our recent progress and what's ahead!
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With chronic pain growing in the U.S., advocacy is more critical than ever. The Centers for Disease Control and Prevention’s latest data show that nearly one in four U.S. adults have chronic pain, and more than 22 million have high-impact pain that regularly interferes with work and life activities.
One focus of NPAC’s year-end advocacy was our work assisting the National Institutes of Health with strategic planning for the HEAL Initiative. HEAL implements the money allocated by Congress for research on pain and substance use disorders. Learn more about it below.
We welcomed former Colorado Senator Joann Ginal to the NPAC Board in December. A scientist and the lead sponsor of SB-144, the bill we spearheaded in Colorado, Senator Ginal championed public health and patient rights during her eleven-year legislative career. Tragically, we also lost a member of NPAC. Beloved Community Leader Tinu Abayomi-Paul passed away from complications related to cancer and long-COVID in late September. Read on to learn more about Tinu, Senator Ginal, and our work to advance the health and human rights of people with pain.
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New CDC data shows rising chronic pain
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In November, the Centers for Disease Control and Prevention published the results of its 2023 survey, “Chronic Pain and High-impact Chronic Pain in U.S. Adults," 2023, finding that nearly 1 in 4 American adults experience chronic pain and more than 22 million have “high impact” chronic pain, or pain that regularly prevents people from engaging in work and daily life activities.
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These numbers mark a significant increase in the prevalence of chronic and high-impact chronic pain. Previous studies published by the National Institutes of Health found that the incidence of chronic pain was growing, with new cases of chronic pain increasing at a rate seven times higher than diabetes and three times higher than depression.
CDC data also found that chronic and high-impact chronic pain is higher in women and persons living in non-urban areas, increases with age, and reflects racial and ethnic disparities, with the highest rates among American Indians and Native Alaskans. NPAC Advisor Dr. Sean Mackey offered his thoughts about the new numbers in an article for MedPage Today,
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HHS and DEA extend telemedicine prescribing for another year
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In November, the Drug Enforcement Administration and the Department of Health and Human Services filed a third extension of COVID-19 telemedicine flexibilities for prescribing controlled medication. Prescribing of controlled medications through telemedicine is now extended through December 31, 2025. In 2023, the DEA issued two proposed rules cutting back on telemedicine prescribing of controlled medications and received more than 38,000 comments in response. NPAC provided extensive, substantive comments on both rules. We also drafted talking points for mission-aligned harm reduction groups, published an op-ed in the Los Angeles Times, and delivered invited testimony. Even though the extension is temporary, we are pleased that individuals living with pain will have access to telemedicine prescribing for another year. The DEA released proposed rules in late January, governing telemedicine. NPAC plans to comment on these proposals.
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Department of Transportation acts to improve accessibility in the skies
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In December, the Department of Transportation (DOT) issued new regulations protecting the rights of airline travelers with disabilities. Travelers with disabilities, and especially wheelchair users, have faced delays, denials, injuries, and damage to wheelchairs during air travel. Airline travel is not covered by the Americans with Disabilities Act but by an older law called the Air Carriers Access Act. Individuals cannot bring cases to adjudicate their rights under this law; only the DOT can act. In October, the DOT issued an unprecedented $50 million penalty against American Airlines. The new DOT rule is a sign that agency priorities are changing. The rule requires airlines to meet more rigorous standards for accommodating disabled passengers.
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NPAC Members Appointed to NIH HEAL Strategic Planning Committees
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Several members of NPAC were invited to join the strategic planning subcommittees to set research priorities for the NIH HEAL Initiative, the money allocated by Congress for pain and substance use disorders. NPAC’s Science and Policy Advisor, Dr. Tamara Baker, was appointed to the Executive Committee. Dr. Baker co-chaired the Health Equity and Pain Across the Life Course Subcommittee.
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Community Leadership Council Member Quána Madison was appointed to serve on the health equity subcommittee. NPAC’s Executive Director, Kate Nicholson, was appointed to the Implementation and Health Services Subcommittee.
Ensuring that scientific discoveries are implemented into healthcare and that pain is treated fairly and effectively are priorities of NPAC’s advocacy efforts. Evidence indicates that only about 14% of novel medical interventions emerging from research are ever implemented into clinical care, leaving people living with pain unable to benefit from advancements that could improve their quality of life.
The final priorities from strategic planning related to pain research will be presented at the February National Advisory Neurological Disorders and Stroke Council meeting and finalized later this spring. We recognize that some of these priorities may shift due to recent actions of the Trump Administration.
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Charis Hill Appointed to Inaugural Panel of the Arthritis Research Program
NPAC Community Leadership Council member Charis Hill was appointed to the inaugural panel of the Arthritis Research Program, or ATRP, managed by the Congressionally Directed Medical Research Programs (CDMRP). The CDMRP was established in 1992 through a congressional appropriation to foster novel approaches to biomedical research, focusing on paradigm-shifting research. The Consolidated Appropriations Act of 2024 allocated $10 million to launch this new panel and peer-reviewed Arthritis Research Program.
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NPAC Members Appointed to Planning Committee for National Academies Effort
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Dr. Tamara Baker, Dr. Juan Hincapie-Castillo, and Dr. Sean Mackey were appointed to the planning committee for an upcoming National Academies of Sciences, Engineering, and Medicine public workshop focused on the Treatment and Management of Chronic Pain. The workshop, which will be followed by a publication, is sponsored by the Social Security Administration.
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Strategies for treating and measuring pain and navigating the healthcare and Social Security Administration benefit system as a person living with pain are among the key topics to be addressed.
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NPAC Executive Director honored by Southern Pain Society
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In September, NPAC’s Executive Director, Kate Nicholson, was presented with the President’s Distinguished Service Award for outstanding service to the pain community at the Southern Pain Society annual meeting.
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Meetings Related to Ongoing Appointments
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NPAC’s Executive Director attended the National Advisory Neurological Disorders and Stroke Council fall meeting in Bethesda, Maryland.
Dr. Monica Mallampalli, Dr. Tamara Baker, and Kate Nicholson attended the winter meeting of the Interagency Pain Research Coordinating Committee.
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In September, NPAC’s Executive Director spoke at the Southern Pain Society’s annual scientific meeting in New Orleans during a special session on legal and compliance issues. Nicholson addressed legal and policy advocacy for systems change and suggested ways in which SPS members could be involved in effective pain advocacy.
In October, NPAC’s Executive Director addressed equity issues at the first annual hybrid meeting of the Pain Collaborative, a new, multistakeholder initiative to advance equitable, value-based solutions to achieving effective pain care. The meeting was held at the Southern California University of Health Sciences in Whittier, California.
In October, NPAC Science and Policy Advisory Council member Mara Baer presented on a panel titled Invisible Disabilities at Work hosted by Premier, Inc. Topics included how invisible disabilities affect workers and how employers can better foster inclusion and avoid the common ways individuals with disabilities are excluded or not accommodated. Mara highlighted the hidden nature of chronic pain, the prevalence of such pain in the workforce, and how workplace stigma remains a significant challenge.
In November, NPAC’s Executive Director spoke about her experience of chronic pain, including two decades when she was significantly limited in her ability to sit, stand, or walk, at the Ulrich Museum in response to an exhibition entitled RE/POSE about how artists from marginalized groups are reclaiming the tradition of repose in art. Nicholson considered who has the right to repose and addressed the importance of representation of disability and illness (which were absent from the exhibition) in culture and art.
In December, several NPAC members spoke during consecutive half-day workshops hosted by the NIH HEAL Pain Research Priorities Subcommittees related to HEAL strategic planning:
- Dr. Sean Mackey presented during the meeting on Biomarkers and Predictors
- Dr. Tamara Baker, Quána Madison, and Kate Nicholson presented during the meeting on Health Equity Over the Life Course
- Kate Nicholson presented during the meeting on Implementation and Health Services
Also, in December, NPAC’s Executive Director spoke at the winter meeting of the Interagency Pain Research Coordinating Council about the need to expand the pain workforce and workforce training. In addition, Nicholson spoke on a panel at the CATO Institute titled Pain Refugees: Collateral Damage of the War on Drugs hosted by Dr. Jeffrey Singer.
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NPAC Advocates to Support and Promote Effective Pain Research
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Much of NPAC’s year-end advocacy involved supporting and promoting pain research. Through HEAL strategic planning, we helped set the agenda for the future of pain research. As partners on HEAL Connections, we translated and disseminated research, helping to turn science into action. We continued our efforts to get people with lived experience of pain nominated to leadership positions in research. As part of that effort, NPAC members attended meetings related to several studies, including a national study on pain funded by Cornell Weil, the CSI: Opioids Study on suicide and pain, and a PCORI study regarding pain management in older adults.
NPAC’s Executive Director attended the fall governing board meeting for the NIH PURPOSE program, which focuses on building pain research and developing the workforce. Both are currently significantly insufficient to meet the needs of one in four Americans with chronic pain.
Nicholson also joined three Interagency Pain Research Coordinating Council subcommittees: Implementation Science, Workforce Training and Development, and Resilience and Pain Prevention.
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NPAC Collaborates on Training Scientists and Clinicians in Pain Advocacy
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NPAC continues to build coalitions and collaborate on advocacy within the pain space. Our President and Executive Director recently participated in a meeting for the US Association for the Study of Pain Advocacy Committee, where we are helping to organize a three-hour session at the next USASP scientific meeting on training scientists and clinicians in advocacy.
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In September, we lost a beloved member of our Community Leadership Council, Tinu Abayomi-Paul, to complications from cancer and long-COVID. From NPAC’s inception, Tinu made an indelible imprint on our organization. She helped frame NPAC’s priorities, policies, and advocacy strategies. She taught our community how to use social media effectively by developing a curriculum on leveraging social media, knowing what to include (and what not to share) when telling personal pain stories, and responding to negative feedback.
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Most recently, Tinu and Charis Hill co-lead our #RealPainStories campaign for pain awareness month in September. Unfortunately, Tinu passed away before the month drew to a close.
Tinu will always be part of NPAC. Her bio remains on our website, along with a note acknowledging her passing. We continue to feel her presence, guiding us to do better.
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NPAC frequently engages with policymakers, so it felt essential that we identify one to be part of our team. one on our team. We were delighted when Senator Joann Ginal agreed to join our Board of Directors in December.
Kate Nicholson sat down with Senator Ginal to discuss her career and what she’d like to achieve in pain policy. We hope you'll enjoy their conversation below.
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Why did you decide to join the NPAC Board?
I was honored to be asked to become part of the Board of the National Pain Advocacy Center.
I realized that, in our focus on the opioid crisis, there was a population of people who were not considered in the laws that passed. These unintended consequences and the fact that there was a group of people living with pain whose voices needed to be heard are why I brought forward Senate Bill 144 (SB23-144), Prescription Drugs for Chronic Pain, which protects people who use opioids to manage pain from discrimination in care. I wanted to ensure people who rely on opioid medications for everyday life can stay on them.
What are some of your proudest achievements as an elected representative?
My legislative accomplishments in the Colorado Senate and House are many. Many of the bills I brought enabled people without a voice to get the help they needed. Most are in the areas of health and public safety. I brought legislation to increase the transparency of prescription drug costs and bills creating uniform standards for prior authorization of prescription medication that reduced consumer costs. In 2015, I brought the first state-wide bill for telehealth, helping patients see their healthcare providers faster and more conveniently, which was especially needed in rural and underserved urban areas. I was a primary sponsor for the End-of-Life Options Act, providing medical assistance in dying to terminally ill persons who wished to end their lives, which went to the ballot and won overwhelmingly. I also passed a law enabling terminally ill patients to participate in clinical trials or use investigational drugs (also known as the “Dallas Buyer’s Club” bill). Colorado was the first in the nation to pass such a law, which 36 other states have passed since 2014.
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Dr. Sean Mackey offers likely reasons for the rising number of Americans in chronic pain in MedPage Today, https://tinyurl.com/5e25j9ac
Dr. Mackey also co-published a paper in Pain suggesting ways to address barriers related to opioid stigma, https://journals.lww.com/pain/fulltext/9900/breaking_barriers__addressing_opioid_stigma_in.770.aspx
Mara Baer addressed ways to advance pain care in her piece, Four Ways to Advance Accountable Chronic Pain Care for Health Affairs, https://www.healthaffairs.org/content/forefront/four-ways-advance-accountable-chronic-pain-care
Dr. Samina Ali penned an opinion piece on how to help children handle visits to the ER,
https://www.healthing.ca/wellness/opinion/opinion-how-to-help-your-child-handle-a-visit-to-the-emergency-department
Dr. Sally Satel wrote a piece on expanding reciprocity for psychiatrists, making it easier for them to serve in healthcare deserts. Half of all counties in the U.S. lack a licensed psychiatrist. https://www.city-journal.org/article/expanding-reciprocity
Dr. Stefan Kertesz interviewed Dr. John Lawrence, Past President of U.S. Doctors Without Borders, on medical service for his podcast, On Becoming A Healer, https://pod.link/healer
ICYMI, there was an excellent piece in the New York Times Magazine, a first-person account by journalist Jennifer Kahn that reviews current scientific advancements and quotes many of the scientists NPAC collaborates with, https://www.nytimes.com/2025/01/12/magazine/chronic-pain.html?unlocked_article_code=1.ok4.mMNb.4lv2okbIwQhN&smid=url-share
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