Steinberg testifies
Steinberg testifies.

On Dec. 19, Cindy Steinberg, U.S. Pain’s National Director of Policy and Advocacy, testified at the Massachusetts State House in support of a bill to require pain be assessed and managed in all types of healthcare facilities statewide.

Steinberg was one of three patients who testified, along with two pain clinicians. The bill, “An Act Requiring Pain Assessment and Management in Healthcare Facilities,” (House Bill 1181 and Senate Bill 1183) was authored as a collaboration between U.S. Pain Foundation and the Massachusetts Pain Initiative. It is being sponsored by Rep. Jay Kaufman and Sen. Julian Cyr.

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U.S. Pain is pleased to announce it will be sponsoring an exciting new film project, “Becoming Incurable.” The film explores the stories of three patients living with incurable diseases: dystonia, ankylosing spondylitis, and lyme disease.

Victoria Suan, the film director, says the first iteration of the film, “Inside Incurable Lives,” was, in part, inspired by U.S. Pain.

“When I found out U.S. Pain Foundation wanted to sponsor my film, I couldn’t have been more thrilled,” says Suan. “Not only did this mean the film would be exposed to the chronic illness community at large, but that I could also hire an editor to begin post-production.”

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On Nov. 4, CrossFit Los Altos and Focused Individual Trainers hosted its annual Fight Gone Bad fundraiser workout to support the efforts of U.S. Pain Foundation. The event was a huge success with more than 50 athletes participating and nearly 140 donors raising over $17,700 for U.S. Pain’s flagship program, the INvisible Project.

Director of CrossFit Los Altos, Rick Dyer, shared why this fundraiser is so important to him: his wife, Nicole Hemmenway — vice president of U.S. Pain Foundation — lives with complex regional sympathetic disorder, a chronic condition that causes pain. “U.S. Pain Foundation is a one-of-a-kind organization that is truly patient-focused,” says Dyers. “The work they do to share patient stories, advocate for proper treatment, and empower those living with pain is remarkable. I am thankful to our CrossFit community and gym who rallied around this cause, making the event possible.”

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U.S. Pain Foundation takes the opioid crisis very seriously and is doing its part to help reduce overdoses and addiction. However, as a result of some extreme reforms, many pain patients are being unfairly penalized and are experiencing huge obstacles in obtaining pain management.

To help members facing problems with treatment access, the organization has created a three-page resource with suggestions on how to stay safe in these situations while also advocating for oneself. Titled  “What to Do if You’ve Been Denied Appropriate Pain Management,” the online document includes the following sections: “Addressing Unfair Restrictions,” “Managing Possible Withdrawal,” “Managing Increased Pain,” and “Filing Complaints.”

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U.S. Pain and 31 patient and professional groups have submitted a letter to Congress urging it not to repeal the Ensuring Patient Access and Effective Drug Enforcement Act of 2016, which would upend essential protections for some of the most vulnerable patients in the country. The law aims to prevent the Drug Enforcement Agency (DEA) from limiting controlled substance pain medication distribution in a that way lacked transparency, due process, or safety.

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Some states are taking a proactive approach to curbing and managing substance abuse disorders, aiming to provide nonpharmacological care for underlying pain problems.

Rhode Island’s Gov.Gina Raimondo signed legislation that requires insurers to cover chiropractic treatment for pain for individuals with substance use disorders. Under the new law, patients who seek such care must have insurance and the therapy must be medically necessary for licensed chiropractors to receive reimbursement.

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With all the confusion surrounding health care this past year, U.S. Pain wants to remind members that the Affordable Care Act (ACA), also known as Obamacare, is still in place and enrollment for 2018 is ending soon, on Dec. 15, 2017.

Whether you need to enroll for the first time or re-enroll for the same coverage, Dec. 15, 2017 is the final date you can enroll for coverage beginning on Jan. 1, 2018.

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How does the healthcare system provide value to people with chronic conditions? It’s a question that has puzzled experts for years, prompting research, systematic reviews and assessments. Existing models tend to measure values held by healthcare professionals, rather than relevant outcomes for patients.

The Innovation and Value Initiative (IVI) is a new collaboration of healthcare stakeholders whose goal is to promote the development and use of high-value interventions that advance health from a patient perspective and to change the way value is measured and rewarded. U.S. Pain Foundation is assisting in the cause through information sharing, brainstorming concepts with IVI’s leadership, and providing the viewpoint and voice of those individuals living with chronic conditions.

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City & state: Warwick, Rhode Island

Age: 39

Pain warrior role: U.S. Pain advocate since year 2012

What type of health conditions you live with: Ehlers-Danlos syndrome, Chiari malformation, tethered cord syndrome, and arthritis

Favorite tip for others with chronic pain: “Get up and get out! Whatever it takes for me to get out of the house, wheelchair, walker, cane, or bracing, I know I do better when I stay active, even if ‘active’ means I’m encased in blankets in my wheelchair, at least I am out living life.”

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Amazon Smile provides a great excuse to treat yourself and loved ones–for a good cause–this holiday season. If you shop using and select U.S. Pain Foundation as your designated charity, Amazon will donate 0.5 percent of your purchase to U.S. Pain.

The prices and products on Amazon Smile are exactly the same as Amazon; there is no additional cost to you.

“It’s an easy, free way to support a nonprofit like U.S. Pain,” says Casey Cashman, director of fundraising. “As people with pain, shopping online is so convenient; now there’s an even better reason to do it.

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