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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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Now, more than ever, it is important for people with pain need to support each other, uniting to bring awareness and understanding. Throughout September, U.S. Pain will be providing numerous opportunities for you to join us in making a positive change for pain warriors. Take a look at some of U.S. Pain’s upcoming activities and events so that you can help honor Pain Awareness Month. It’s never too late to get involved, and there’s something for everyone, no matter what your abilities or interests.

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California has long been a harbinger of medical cannabis access. In 1996, it approved medical cannabis for patients with a physician’s recommendation, and in 2016, it legalized marijuana for all residents. Continuing to lead the way on this therapeutic treatment option, lawmakers are considering Assembly Bill 1996, which would establish a research program on the medical use of cannabis. It would be the first of its kind in the country.

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Whether cancer or arthritis, there are thousands of chronic conditions and health issues that can affect a person during their lifetime. What do all of these conditions have in common? They cause pain.

In honor of Pain Awareness Month, which begins Sept. 1, U.S. Pain Foundation is hosting a number of events and activities that aim to bring together people with pain and create more understanding about the challenges people with pain face. The theme for the 2018 campaign is #PainWarriorsUnite.

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While National Migraine and Headache Awareness Month (MHAM) wrapped up in June, U.S. Pain Foundation is continuing to raise awareness through its traveling display of the INvisible Project: Migraine second edition. Below is a photo recap of June and the ongoing efforts to bring about change for people living with headache and migraine disease.

End of May
The INvisible Project: Migraine second edition was released in time for MHAM.

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The rising costs of prescription medications is one of the most pressing issues in health care today. This spring, the Department of Health and Human Services (HHS) released a 44-page plan to tackle the issue, called “American Patients First.”

U.S. Pain Foundation was one of hundreds of patient organizations to weigh in on the plan in advance of a July 16 public comment deadline. U.S. Pain signed on to several group letters, including letters from the “I am essential” coalition, the Alliance for Transparent and Affordable Prescriptions, and the Part B Access for Seniors and Physicians Coalition.“To ensure individuals living with chronic pain are given the chance to receive quality health insurance coverage at an affordable rate, it’s imperative that we take these opportunities to represent the patient voice,” says Shaina Smith, Director of State Advocacy and Alliance Development. “Letters that we have signed on to focus on the significant need to access prescription therapies without passing the buck to those with chronic illness.”

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