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Last week, the Consumer Pain Advocacy Task Force (CPATF)–a coalition of pain patient-related nonprofits, including U.S. Pain Foundation–submitted a letter to Department of Health and Human Services (HHS) Secretary Alex Azar regarding the draft report on pain released by the HHS Pain Management Best Practices Inter-Agency Task Force.

The CPATF also plans to submit a longer letter to the federal docket with more specific feedback by April 1.

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U.S. Pain Foundation has partnered on a survey with Tamadé, a Virtual Reality (VR) company that has developed a program for chronic pain, to learn more about how pain impacts your life and how VR might help.

The survey takes approximately 20 minutes to complete. Everyone who takes it will be entered to win one of 30 $10 gift cards to Amazon. (Remember to use Amazon Smile, which automatically donates 0.5% to a charity of your choice, if you win!)

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Did you know that pain is the leading cause of long-term disability in America? During a webinar on March 19, we’ll be talking about the challenges of working with chronic pain and considerations for applying for Social Security Disability Insurance (SSDI). Our featured speaker is Rebecca Ray of Allsup, one of the leading national providers of SSDI representation.

Through the webinar, you’ll learn about:

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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.”

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From Feb. 10 through 13, representatives from U.S. Pain Foundation proudly participated in Headache on the Hill (HOH) in Washington, DC, for the second year in a row. Organized by the Alliance for Headache Advocacy, HOH is an event that bring together patients, caregivers, and providers to advocate for people with headache, migraine, and cluster diseases at the federal level.

This year, a total 160 advocates attended, including 23 individuals–a combination of staff, volunteers, INvisible Project participants and individuals from Chronic Migraine Awareness–sponsored by U.S. Pain Foundation.

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Photo courtesy of HELP committee

On Feb. 12, for the first time in years, Congress held a hearing on chronic pain. We were proud to have Cindy Steinberg, National Director of Policy and Advocacy, as one of the four selected witnesses who gave testimony. As a reminder, you can watch a recording of the hearing here.

Hearing makes headlines

The hearing–and Steinberg’s remarks in particular–received a multitude of coverage at the national and local level. Here are some of those articles.

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Even though the draft report from the Pain Management Best Practices Inter-Agency Task Force is vitally important, it’s understandable that people with pain may not have the time or energy for reading a 91-page report. With that in mind, we have pulled together some excerpts from the report to help the pain community understand its key tenets.

To read the full report or learn more about how to submit comment, click here.

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Through Pain Connection, U.S. Pain Foundation offers a network of support groups across the country. These support groups are led by people with pain who have received special training via Pain Connection’s Clinical Director, Gwenn Herman, LCSW, DCSW, a licensed social worker and person with pain.

We are currently looking to expand our support group offerings to even more states through our next training on March 16 & 17 in San Francisco, CA, at the Hilton Garden Inn San Francisco Airport/Burlingame.

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Pain patients need and deserve a seat at the table (even if it means bringing in a cot!). On Feb. 12, they finally got one.

“We are incredibly grateful to the Senate Committee on Health, Education, Labor, and Pensions (HELP) for including Cindy Steinberg, National Director of Policy and Advocacy for U.S. Pain, during its hearing on ‘Managing Pain During the Opioid Crisis,'” says Interim CEO Nicole Hemmenway. “We are even more grateful to Cindy for bravely sharing her story and perspective.”

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We are delighted to share the dates and location of the next Pediatric Pain Warrior weekend retreat: May 24-26 at Morgan’s Wonderland in San Antonio, TX.

Morgan’s Wonderland is an ultra-accessible family fun park with rides and activities for kids of all ages and abilities. Like with the inaugural 2018 retreat, the weekend will bring together children with pain and their families for a weekend of education, support, and fun.

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