Approximately 5,400 individuals and organizations responded to the Centers for Disease Control and Prevention (CDC)’s call for public comment on acute and chronic pain management and whether the CDC should update and expand its 2016 Guideline for Prescribing Opioids for Chronic Pain. Cindy Steinberg, National Director of Policy and Advocacy, submitted a five-page comment on behalf of the U.S. Pain Foundation, which you can read here.

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U.S. Pain is pleased to share that Louisiana Governor John Bel Edwards has signed into law House Bill 819, which expands the discretion of physicians so that they can recommend cannabis therapy for “any condition” that they consider “debilitating to an individual patient and is qualified through his [or her] medical education and training to treat.” Currently, doctors in Lousiana may only recommend medical cannabis products to those patients with a limited number of select conditions, such as HIV and cancer, leaving out many with other chronic illnesses.

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Throughout June as National Headache and Migraine Awareness Month (MHAM), the U.S. Pain Foundation and fellow patient organizations focused their efforts on educating patients and the public about the realities of life with headache diseases. (And even though it’s July, there are still a few opportunities to learn and take action!)

Launch of the INvisible Project: Migraine & Headache 4th Edition

The month kicked off with multiple launch parties for the newest edition of the INvisible Project, which highlights 10 patients and families coping with varying types of headache diseases ranging from cluster headache to new daily persistent headache. You can download the full PDF of the magazine or order print copies, free of charge, by visiting the INvisible Project website.

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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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According to Tufts University, 37 percent of research sites do not meet their enrollment goals for scientific studies. But enrollment is critical to clinical research and uncovering potential treatment advances.

Jennie Latson, a 39-year-old from Houston, TX, has battled the pain and burden of migraine for more than 25 years. Her relentless quest to find relief led her to a clinical trial in August 2018, which changed her life.

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June is Migraine and Headache Awareness Month (#MHAM)! A large percentage of our community lives with migraine and headache diseases, whether as the primary cause of their pain or a comorbidity.

Nationwide, headache and migraine diseases affect 47 million Americans. Despite their huge impact, these conditions are often overlooked and downplayed as “It’s just a headache.”

But we know it is far more than simply head pain. Headache and migraine diseases are complex, debilitating, and symptoms can affect your entire body.

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How the buzzword “catastrophizing” stigmatizes people with chronic pain

By Gwenn Herman, LCSW, DCSW

The first time I heard the word “catastrophizing” being used to describe the pain experience on a national level was at a chronic pain lecture at the National Institutes of Health. It sent shivers through my body.

After 25 years of living with chronic pain and 20 years working with the pain community as a clinical social worker, I have become an expert in the field and what it takes to fight to take back your life from intolerable, daily pain while creating a quality of life. I was horrified at the use of this pejorative word and voiced my reaction.

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In honor of Migraine and Headache Awareness Month, on June 24, Jaime Michele Sanders (aka The Migraine Diva) will lead a diverse panel of fellow INvisible Project participants in tackling the issue of health care disparities. Nim Lalvani (Executive Director of American Migraine Foundation), Isiah Lineberry (health policy exert and a caregiver for his wife and two daughters, who live with migraine), and LaQuinda Mccoy (a patient advocate for migraine and other diseases, and a former nurse) will share how discrimination and implicit bias has negatively impacted their access to appropriate medical treatment.

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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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