In honor of Pain Awareness Month, the U.S. Pain Foundation and the Alliance to Advance Comprehensive Integrative Pain Management (AACIPM) are co-hosting a virtual symposium on equity in pain care on Sept. 24 from 11 am to 3:30 pm ET. The event, “Equity in Access to Comprehensive Integrative Pain Management for People with Chronic Pain” will bring together stakeholders working to improve pain care. It is free and open to all to attend; advance registration is required.

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Advocacy round-up

What better way to honor Pain Awareness Month than taking action at the federal level? Here are a few opportunities to engage this month, along with some advocacy updates.

Ways to engage

  • The Center for Medicare and Medicaid Services (CMS) is accepting public comments on whether oxygen should be covered for patients with cluster headache, a rare and debilitating neurological disease. The deadline to comment is Sept. 16. Get tips and help with commenting from the Alliance for Headache Advocacy here.
  • The Alliance for Aging Research is looking for older adults with chronic pain and/or their caregivers to join their #TalkNerdytoMe training series! You’ll receive a $400 stipend and learn how to help advance patient-centered research. Learn more.
  • The Department of Defense is recruiting individuals with chronic pain to participate on panels as “consumer reviewers” of biomedical research.  Interested individuals must be nominated and sponsored by a chronic pain-related advocacy organization and must be able to represent all types of chronic pain, not just the specific condition they live with. Reviewers will receive an honorarium for participating. For more information, contact Melanie Monts de Oca at Melanie.Montsdeoca@gdit.com.
  • The House of Representatives is set to vote this month on the Marijuana Opportunity Reinvestment and Expungement (MORE) Act. Currently, cannabis is categorized as a schedule I drug, meaning it has a high potential for abuse, no medical value and is illegal at the federal level. The MORE Act would deschedule cannabis and decriminalize its use at the federal level, which, from the patient perspective, would be an important step forward in improving access to medical cannabis and enabling more clinical research. Currently, 32 states as well as the District of Columbia offer medical cannabis programs. Help us urge legislators to pass the MORE Act here.
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    The U.S. Pain Foundation recently has been participating in the Collaborative for CBD Science & Safety (CCSS), created to provide a forum to exchange information and resources and respond to policies and practices affecting cannabidiol (CBD) research, safety, and quality.

    “It is important to the U.S. Pain Foundation that people have access to purchasing safe and high-quality CBD,” says Ellen Lenox Smith, Medical Cannabis Advocacy Co-Director, who participates in the coalition. “Presently, people truly have few guidelines to go by and are paying exorbitant amounts of money and many times not getting the product or results being claimed on the packaging.”

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    Your advocacy has made an impact.

    Congress has directed the Department of Health and Human Services to disseminate the Pain Management Best Practices Report to providers and create a public awareness campaign about pain via the House Labor, Health and Human Services, and Education Committee Report accompanying the FY 2021 Budget Bill!

    The report includes language we requested in our official appropriations submissions. (The language, with key sections underlined, is below.) Also included is our request to collect and report data on the prevalence of pain and various pain syndromes annually.

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    A sign created by pain warrior Sherrie Johnson.

    Last month, the U.S. Pain Foundation rallied a total of 761 pain warriors nationwide to urge Congress to allocate funding for the Pain Management Best Practices Interagency Task Force report, a federal blueprint for improving pain care. Cindy Steinberg, National Director of Advocacy and Policy, served on the task force that developed the report.

    Through U.S. Pain’s action campaign, 738 individuals sent 2,452 emails to Congress, and 71 individuals made 167 calls. Meanwhile, the hashtag #aplanforpain was tweeted out roughly 1,000 times across social media platforms. People from across 49 states and D.C. participated (if you live in South Dakota, or know someone who does, please join the campaign!).

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    While most in-person conferences and meetings have been canceled or postponed as a result of the pandemic, U.S. Pain Foundation staff were able to participate in three important virtual events recently.

    IPRCC meeting

    On June 16, Gwenn Herman, LCSW, DCSW, Clinical Director of Pain Connection, joined a videoconference meeting of the Interagency Pain Research Coordinating Committee (IPRCC), the highest-ranking permanent pain policy committee in the United States. The IPRCC heard from representatives across various federal agencies and programs.

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    Thank you. You created the groundswell we needed to start getting Congress to pay attention to the “Pain Management Best Practices” report.

    During our Virtual Advocacy campaign, 595 pain warriors sent 1,944 emails to Congress. 60 pain warriors made 144 calls to Congress. And #aplanforpain was tweeted out at least 500 times, reaching thousands of people, including federal legislators.

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    We’re dedicating today, June 11, to flooding policymakers with our request that they allocate funding for key recommendations in the “Pain Management Best Practices” report–a roadmap for improving pain care nationwide.

    At U.S. Pain Foundation, we believe this report has the power to revolutionize pain care in the United States. But nothing will change for pain warriors unless Congress hears from YOU. Taking action is fast, fun, and incredibly important to improving the lives of the 50 million Americans with chronic pain.

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    On April 17, the Centers for Disease and Control and Prevention (CDC) opened an official docket requesting comments from patients living with acute and chronic pain about their perspective on the benefits and harms of opioid use as well as their experiences with nonopioid medications and nonpharmacological treatments for pain. The CDC is also interested in the perspective of caregivers, family members, and health care providers of patients living with pain.

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