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.
As part of our Pain Awareness Month Storyathon, we’re collecting 3-5 minute video stories from real people with pain, talking about their personal experiences–from how they were diagnosed to how pain affects their daily life. We’ll be selecting a handful of videos to share throughout September on social media.
Remember: talking about pain is the only way we can create understanding, awareness, and most importantly: change.
In late December, a high-ranking federal task force released a draft report with recommendations for improving the management of chronic and acute pain nationwide. The landmark report will be finalized and submitted to Congress at the end of May. The pain community is being asked to give feedback on the report by April 1–less than a month away.
“It is vital that people with pain weigh in,” says Cindy Steinberg, National Director of Policy and Advocacy, who was the only patient and patient advocacy representative on the task force. “This report could change people with pain’s lives for the better. It promotes a multidisciplinary, multimodal approach to pain care and addresses barriers to accessing effective treatment. It says that treatment decisions should be made on a case-by-case basis that considers the unique situation of each patient. It addresses the stigma around chronic pain and lack of public, provider and patient education on pain management. It provides a comprehensive view of the gaps in pain care in the United States today and detailed recommendations on how to ameliorate them.”
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.
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.”
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.
It’s that time of year! Nominations are now open and being accepted now through Nov. 30 for the 2018 Joselynn Badman Ambassador of the Year Award. Do you know someone who has gone above and beyond in spreading pain awareness this year? Help U.S. Pain recognize pain warriors who actively spread awareness while inspiring others to educate and empower their pain community.
Nominees must be a pain ambassador or advocate with U.S. Pain. In addition, nominations must be made by someone other than the nominee; self-nominations will not be accepted.
Chronic pain comes in many shades. The descriptions alone can be colorful: throbbing, shooting, aching, burning, freezing, and so many more. Pain patients rarely describe their pain by using only one of these vivid explanations. Just as there are innumerable ways to describe pain, there are countless conditions that can cause or contribute to chronic pain; each condition is represented by its own awareness ribbon color.
On May 15, U.S. Pain’s bimonthly webinar featured Jenni Grover, also known as ChronicBabe, who has dealt with fibromyalgia and other health issues for over 20 years. Through ChronicBabe.com, she has helped thousands of women cope with their own chronic pain. (Grover is also an editorial consultant with U.S. Pain’s INvisible project and a longtime patient advocate.)
Her recent book, “Chronic Babe 101: How to Craft an Incredible Life Beyond Illness,” is a collection of resources about “how to kick butt despite chronic pain.” In the webinar she spoke specifically about a chapter on acceptance, part of the “grieving process” that is hard to get past when dealing with chronic health issues. Acceptance isn’t a loss or defeat, she explained, and viewing it as a war to be won means seeing your body as the enemy.