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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    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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    Thanks to its dedicated volunteers, U.S. Pain Foundation’s 2019 Pain Awareness Month campaign, #LetsTalkAboutPain, was the most robust yet. All of the month’s activities—from educational events to the daily social media challenge—were possible through the generosity of Thrive Tape, makers of a far-infrared kinesiology tape.

    “We chose the theme because we believe that speaking up about personal experiences is the first step to creating awareness and change,” says Interim CEO Nicole Hemmenway. “We are incredibly grateful to our supportive, passionate community for bringing pain to the forefront throughout September, and to Thrive Tape for providing the funding to support these efforts.”

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    The final online event in our Pain Awareness Month series will explore the ways in which patient advocacy–at both the state and federal levels–centers on sharing your personal pain story. The event will take place Wednesday, Sept. 25, from 11:30 AM – 12:30 pm EST.

    U.S. Pain Interim CEO Nicole Hemmenway will moderate a panel discussion with Cindy Steinberg, U.S. Pain National Director of Policy and Advocacy, Shaina Smith, U.S. Pain Director of State Advocacy and Alliance Development, and special guest Rhode Island State Rep. Patricia Serpa.

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    Too often, due to broad misconceptions and a lack of understanding about pain, pain warriors are afraid or ashamed to speak up about their stories.

    But the only way we can create change is if we start talking–to loved ones, coworkers, neighbors, clinicians, and even policymakers.

    That’s why our theme for Pain Awareness Month 2019, which begins September 1, is “Let’s Talk about Pain.” We’ll be hosting numerous events, campaigns, and activities that center around this idea. In order to truly get the word out, though, we need your help.

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    Voices from the Hill

    By Jorie Logan-Morris and Jeannette Rotondi

    Every year in February, advocates for migraine and headache disease come together in Washington, D.C., for an event known as Headache on the Hill (HOH). HOH is organized by the Alliance for Headache Disorders Advocacy (AHDA) and has been running now for 12 years.

    During HOH, advocates of all kinds — migraine and headache patients, caregivers, doctors and specialists, and more — work together to lobby and meet with Congress, presenting important legislation and “asks” related to migraine and headache disease in hopes that lawmakers will support our requests. This in turn helps bring more national awareness to migraine and headache disease and ultimately further supports the millions who suffer all across the country.

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    U.S. Pain’s Director of State Advocacy and Alliance Development Shaina Smith was among the speakers at the Biotechnology Innovation Organization’s (BIO) Patient and Health Advocacy Summit held Oct. 25 and 26 in Washington, D.C. The annual event brings together patient advocacy organizations, academia, regulators, biotechnology industry, and other stakeholders to discuss timely policy issues and share best practices. This year, attendees were treated to a surprise appearance from U.S. Secretary of Health and Human Services Alex Azar.

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    Volunteers who have signed up to join the Advocacy Network joined an invitation-only training webinar to learn about an issue impacting families and individuals across the country: surprise bills.

    The presentation was the first of a series of advocacy training webinars scheduled for the upcoming year, according to Director of State Advocacy and Alliance Development, Shaina Smith. “We’re really trying to develop and offer resources that will improve the lives of people with chronic illness through education,” Smith explains. “The more we learn as a community, the greater chance we will have at successfully moving patient-friendly policies forward.”

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    Policymakers across both aisles have had mixed viewpoints when it comes to cultivating cannabis, not in the literal sense, but as it relates to bills that would permit individuals to access medical cannabis. Several states, however, are expanding or considering expanding their medical cannabis programs, including Illinois, New York, and New Jersey. In addition, some federal institutions have taken steps to improve access: the Food and Drug Administration (FDA), the Drug Enforcement Administration (DEA), and Congress.

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