|
Greetings and welcome to our Late Spring/Summer 2024 Newsletter! As always, we’ve been busy advocating for the health and human rights of people living with pain.
|
|
|
I’ve just returned from the 50th World Congress on Pain in Amsterdam, where NPAC offered two Topic Workshops. The first involved getting pain on the policy agenda globally, and the second dealt with integrating people with lived experience in all aspects of pain research, from priority setting through translation.
NPAC continues to focus on pain policy nationally and internationally, but we are also working to train and expand the network of pain advocates to include more scientists, researchers, clinicians, and people with lived experience of pain. Read on to learn more about our recent activities.
September is Pain Awareness Month, and NPAC’s Community Leadership Council will again host #RealPainStories—stories about pain from people who live with it as told through a diversity of voices. Learn how you can participate below.
|
|
NPAC ADVOCATES: International
|
|
NPAC Supports the Developing Global Resolution “Health Care for All Means Pain Care for All”
|
|
|
On May 28, NPAC’s Executive Director Kate Nicholson was one of ten speakers at a side event hosted during the 77th World Health Assembly in Geneva.
|
|
|
This side event was jointly sponsored by the International Association for the Study of Pain (IASP) and the World Federation of Societies of Anesthesiologists. The World Health Assembly is the World Health Organization's decision-making body, and all nation-state members attend the meeting.
The event aimed to develop principles that would inform a global resolution on pain at the next World Health Assembly. Nicholson is a member of the Global Advocacy Working Group (GAWG) for IASP, which has been working to ensure that pain care is featured in the World Health Organization and World Health Assembly’s agenda regarding health care for all.
The principles addressed include the ethical duty of health care professionals to alleviate pain and suffering, the need for countries to recognize pain care as an essential component of health systems plans and to ensure that healthcare workers are trained in the assessment and management of pain, and the right of people in every country to have access to analgesic medications.
Nicholson recorded two presentations: an introduction welcoming the people to the meeting, and a presentation of stories of barriers to pain care experienced by actual, diverse individuals living with pain.
|
|
NPAC Meets with Canadian Minister on Advancing Pain Policy in Canada
|
|
|
During the Canadian Pain Society’s Annual Scientific Conference in Ottawa in April, the Canadian Pain Society and the Canadian government jointly hosted Canada’s first National Congress on Pain. Following the Congress, NPAC’s Science and Policy Advisor and the current President of the Canadian Pain Society, Dr. Hance Clarke, and NPAC’s Executive Director, Kate Nicholson, headed over to Parliament for a meeting with the Honourable Minister Ya'ara Saks, the Associate Minister of Health and Minister of Mental Health. Also in attendance were Maria Hudspith of Pain Canada and Pain BC, Dr. John Pereira, the outgoing President of the Canadian Pain Society, Dr. Tania DiRenna, the President-elect of the Canadian Pain Society, Dr. Norman Buckey, and lived experience advocates, Virginia McIntyre and Jennifer Daly-Cyr. It was a productive meeting on moving the agenda forward for pain care in Canada.
|
|
NPAC Sponsors Long COVID Research Moonshot Act of 2024
|
|
|
On August 2, NPAC became one of 48 organizations endorsing The Long COVID Research Moonshot Act of 2024, legislation introduced by Sen. Bernie Sanders, Chairman of the Senate Committee on Health, Education, Labor, and Pensions (HELP) and co-sponsored by Sens. Tammy Duckworth, Tim Kaine, Ed Markey, Tina Smith, and Peter Welch.
Pain is a frequent feature of long COVID, and people with existing pain conditions too often experience lasting complications from COVID exposure. Members of NPAC's Board and Community Leadership Council have suffered from long COVID. Long COVID affects more than 22 million adults and 1 million children across the U.S. Given its impact as a public health issue and the fact that (like people with pain) many with long COVID experience dismissal and barriers in the healthcare system, NPAC was delighted to support this legislation.
This bill provides $1 billion in mandatory funding per year for 10 years to the National Institutes of Health (NIH) to support long COVID research, the urgent pursuit of treatments, and the expansion of care for patients nationwide.
Read more about the bill here.
Read the op-ed written by its sponsor, Sen. Bernie Sanders, here.
|
|
Department of Health and Human Services Publishes Updated Regulation on Discrimination on the Basis of Disability
On May 1, 2024, the Department of Health and Human Services issued the final implementing regulation for Section 504 of the Rehabilitation Act of 1973, which covers nondiscrimination in healthcare in federally funded or federally conducted programs. Pain is a chief cause of disability, and three laws govern disability rights: Section 504, the Americans with Disabilities Act, and Section 1552 of the Affordable Care Act. The regulations for each law are often relied upon in interpreting the other laws.
This is the first update of the Section 504 regulation in forty years. Among the additions is an expanded section relating to access to medical care, which NPAC commented on during the rulemaking process. We are confident that the update will support the health rights of people with pain.
See our comment here.
Read more and find a link to the regulation here.
|
|
New Medicaid Regulations Seek to Improve Access to Care and Better Address Health Equity
|
|
In July, new regulations issued by the Center for Medicare and Medicaid Services (CMS) went into effect. These regulations take a comprehensive approach to improving access to care, quality and health outcomes, and health equity in Medicaid. The regulations address Medicaid fee-for-service, managed care delivery systems, and home and community-based services.
Read the rule here.
|
|
NPAC Responds to NIH HEAL Initiative Request for Information on How to Better Address the Unmet Needs of People with Pain
|
|
|
On July 31, NPAC filed an extensive response to a Request for Information (RFI) issued by the National Institutes of Health HEAL Initiative. The HEAL Initiative is an NIH-wide effort for scientific solutions to the public health crises of pain and addiction. The initiative began in 2018 and is a substantial funding source from Congress for pain research. The pain part of HEAL was just moved into the National Institute for Neurological Disorders and Stroke, and the Initiative is undergoing strategic planning to reset priorities. This RFI is the first step in that process.
|
|
|
|
NPAC provided ten specific recommendations that will better enable the Initiative to address the unmet needs of people living with pain. Read our response here.
|
|
NPAC Responds to NIH ENGAGE RFI on How to Open Research to the Public
|
|
|
On August 13, NPAC filed its response to a Request for Information (RFI) from the National Institutes of Health on its NIH Engage Initiative, an NIH-wide effort to increase public engagement in clinical research and to promote accountability, transparency, and responsiveness to community needs.
Currently, research is undergoing a paradigm shift in which people with lived experience of studied diseases are no longer merely subjects but partners in all aspects of research, from priority setting to research design, analysis, implementation, and translation. Capacity building for this transformation is sorely needed. NPAC responded to this RFI with substantive suggestions, which you can read here.
|
|
|
In April, NPAC’s Executive Director Kate Nicholson and Science and Policy Advisor Dr. Hance Clarke delivered a symposium at the Canadian Pain Society’s annual scientific meeting in Ottawa entitled Shaping the Conversation: Translating Your Message to the Media, Policymakers, and Other General Audiences.
|
|
|
|
This year, NPAC has focused on training and working with researchers, clinicians, and people with lived experience to effectively share their stories and knowledge with a general audience. Changing the narrative on pain and transforming pain policy requires this kind of broad translation.
In May, Nicholson presented a similar talk to investigators and clinicians at the second NIH PURPOSE meeting, How to Present Your Work to Policymakers. Nicholson also presented on a panel with Dr. Jianguo Cheng, Dr. Allan Basbaum, and Penny Cowan on emerging issues in pain research and presented awards to emerging investigators.
|
|
In May, NPAC Community Leadership Council members Charis Hill and Sonya Huber presented at the 2024 NIH Pain Consortium Symposium on Advances in Pain Research. This year’s meeting topic was Gender and Sex Differences in the Neurobiology of Pain, its Experience, and Management.
Huber presented her lived experience as a woman in pain, which included bias and stigma in interactions with healthcare providers. Hill presented their experience of pain, pain management, bias, and stigma as a transgender person with pain.
Learn more here.
|
|
|
|
Dr. Katie Suda, Dr. Daniel Hartung, Dr. Ishani Ganguli, and Dr. Juan Hincapie-Castillo
|
|
|
In May, NPAC’s Board President Juan Hincapie-Castillo presented at the 3rd Annual Pharmacoequity Conference, hosted by the Center for Pharmaceutical Policy and Prescribing at the University of Pittsburgh. Pharmacoequity refers to ensuring equitable access to medication.
|
|
|
Hincapie-Castillo moderated a session and presented his research, which examines how laws and policies impact medication prescribing and patient outcomes.
Hincapie-Castillo also presented at the International Society for Pharmacoepidemiology’s 2024 meeting in Berlin. Pharmacoepidemiology evaluates the use, benefits, and risks of medical products and interventions in human populations.
|
|
|
|
NPAC’s Executive Director and outgoing IASP President, Dr. Catherine Bushnell
|
|
In August, NPAC’s Executive Director, Kate Nicholson, moderated and presented at two symposiums for the International Association for the Study of Pain (IASP)’s 50th World Congress on Pain.
On August 7, Nicholson moderated Getting Pain on the Policy Agenda: Perspectives from Canada, the U.S., Thailand, and the World Health Organization. The session first provided an overview of pain policy reform in each country and globally and then addressed how to advocate for policy change.
On August 8, Nicholson moderated Patient Partner Inclusion: The Present and Future of Pain Research. The panel took an international approach to the topic, with speakers representing the U.S., the U.K., the EU, Canada, and Australia addressing global efforts to engage diverse patient populations in pain research.
|
|
NPAC Appointments and Related Meetings
|
|
NPAC’s Science and Policy Advisor, Dr. Hance Clarke, was sworn in as the President of the Canadian Pain Society.
NPAC’s President, Juan Hincapie-Castillo, was elected to the International Society for Pharmacoepidemiology's Board of Directors.
NPAC’s Executive Director, Kate Nicholson, participated in a governing Board meeting for NIH PURPOSE in Washington, D.C., as well a meeting of the National Advisory Neurological Orders and Stroke Council Meeting in Bethesda, Maryland, and a meeting of the IASP Global Advocacy Working Group in Amsterdam.
|
|
Join NPAC’s #RealPainStories Campaign for Pain Awareness Month in September
|
|
Once again, during Pain Awareness Month in September, NPAC is launching a #RealPainStories campaign across digital media channels. We need your help to make pain visible by bringing the impact of living with pain to light for those who may not understand its implications. Our stories are resilience stories. Every story is unique and every story matters. We’d love to see yours featured.
Please join NPAC’s Community Leadership Council in sharing #RealPainStories. Just use the hashtag #RealPainStories and tag @national_pain when sharing on your preferred social media platform.
But FIRST – before you do – it’s important to ask yourself a few questions…
Before Sharing a Story:
It is essential that you feel comfortable with the information that you share on #RealPainStories. After all, these are public platforms. Please don’t share private medical information, such as the details of your prescription medications. Ask yourself how you would feel if your employer read or heard what you shared. What about your family members or close friends?
Whether it’s just a few sentences or more, we look forward to hearing your stories – however you want to tell them, with what you feel best sharing!
Prompts and Ideas to Get You Started:
Here are some prompts to help you get started.
Do you have a picture that represents your life before you were in pain? What's different now? Or do you have an object (cane, etc.) that represents your life in pain or shows how you cope with pain?
What has been a challenging moment this week/month/year because of pain?
Write a list of things you do or must consider during an average day to deal with your pain.
Describe your "professional/advocate/public" self, and then describe what people don't see about your pain.
If you have experienced a particular challenge or life-changing moment that connects with your pain, can you describe it in three "scenes" (before, during, and after)? Each "scene" can be as short as a sentence; providing detail to let people see or imagine the moments is helpful. For example, if you remember the onset, you could describe what that was like as one of these.
What are you now an expert in after dealing with your pain? For example, maybe it’s mastering gluten-free baking or mindfulness.
If you’re feeling ambitious, you might consider telling your story through a storyboard. This process includes thinking about the main idea you want to share and gathering details, such as pictures, words, text, music, or video. This can help you lay out the entire story from start to finish. Just google “storyboard” to learn more.
You could tell your story through a photo with one line or a thread like Chris did in the post below.
|
|
|
|
A post from NPAC Community Leadership Council Member, Chris Freeman, during last year’s #RealPainStories Campaign
|
|
NPAC Community Leadership Council member Quána Madison discusses her wellness-based art and fashion with Denver News 7. https://www.youtube.com/watch?v=Fzk_QFNDvYM
NPAC Science and Policy Advisor Dr. Sean Mackey talks about chronic pain, including describing how patients are often dismissed and how pain disparately affects women, on a podcast for The Good Life Project,https://www.goodlifeproject.com/podcast/understanding-your-unique-experience-of-pain-a-neuroscientists-approach-sean-mackey/
NPAC Science and Policy Advisor Dr. Stefan Kertesz spoke with STAT News about how little the upending of the Purdue Pharma bankruptcy settlement will affect the opioid crisis today, https://tinyurl.com/zpa46arz
NPAC’s Executive Director Kate Nicholson was interviewed by the Philadelphia affiliate of NPR and PBS about a recent legal case alleging that providers put patients through unnecessary tests and procedures, https://whyy.org/articles/federal-lawsuit-interventional-pain-spine-treatment-illegal/
NPAC’s Executive Director Kate Nicholson was quoted in an article in the Associated Press on women's pain and new CDC guidelines on pain management for IUD placement and other reproductive care, https://apnews.com/article/iud-pain-lidocaine-gynecologist-f25a198bada157a53514e84dbf57c5a7
NPAC Science and Policy Advisor Dr. Hance Clarke gave an interview to CBC Canada on the increasing use of cannabis by Seniors,
https://www.cbc.ca/listen/live-radio/1-63-the-current/clip/16069590-seniors-using-cannabis-ending-er
NPAC Science and Policy Advisor Professor Daniel Goldberg has been working on integrating public health, policymaking, and law. See his written work on public health and policymaking, https://tinyurl.com/4ck7x9a3 and a collaboration on integrating a legal curriculum into public health coursework, https://www.healthaffairs.org/content/forefront/centering-law-public-health-education
|
|
|
|
|
|
|
