Stancliff on Rare Diseases Day

Location: Baltimore, MD

Age: 37 years old

Pain Warrior Role: Advocate and ambassador since 2014

Conditions: Melker-Rosenthal Syndrome, Ramsay-Hunt Syndrome, lymphadnopothy, fibromyalgia, Non-Specific Brain T-2 flair lesions, degenerative disc disease, retinal inflammatory lesions, neuropathy, and demyelination of the facial nerve

Fun Fact: When feeling up to it, Stancliff uses what she learned at The School of Fine Arts & Photography to be creative. She enjoys playing with art of all kinds, including professional photography, sewing, and painting.

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As a leading expert on various pain conditions, U.S. Pain Foundation recently relaunched its initiative, Learn about your Pain, to provide complete and timely information on hundreds of pain disorders. Learn about your Pain is a comprehensive website and educational tool for anyone wanting to learn more about specific diseases and disorders that are associated with chronic pain.

“We are really excited about this relaunch,” says Director of Learn about your Pain Michaela O’Connor. “Many people live with multiple pain conditions, so it’s nice to have all the information in one place. It’s also great to have information that comes from people who understand what it’s like to live with pain.”

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Nonmedical switching advocacy had some major developments in April, as many state legislative sessions began to wrap up. Nonmedical switching occurs when insurers force patients off medications for financial reasons instead of medical ones. U.S. Pain is among many patient groups who oppose nonmedical switching; studies show it is bad for patients’ health and can be costlier in the long run. While U.S. Pain is involved in related efforts in multiple states, the below updates relate to those states where the organization is most actively involved.

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U.S. Pain submitted letters on three key federal topic this month: a proposed measure for tracking opioid abuse across health plans; the reauthorization of an act on the drug evaluation process; and whether manufacturers should be allowed to communicate about off-label uses of medications.

NCQA proposed measure changes

Last month, U.S. Pain submitted comments to the National Committee for Quality Assurance (NCQA) on a proposal for tracking opioid abuse through the Healthcare Effectiveness Data and Information Set (HEDIS) 2018. HEDIS is a tool used by more than 90 percent of America’s health plans to measure performance in areas of care and service.

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On April 5, U.S. Pain Foundation’s Senior State Advocate, Wendy Foster, flew to D.C. for the joint meeting of the Anesthetics and Analgesic Drug Products Advisory Committee and Drug Safety and Risk Management at the Food and Drug Administration (FDA). The meeting was held to determine if a new drug met the parameters to be considered an abuse-deterrent formula (ADF).  ADFs are a special type of pain medications that cannot be crushed, snorted, or otherwise manipulated, making them difficult to abuse.

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U.S. Pain urges its members to participate in livestreams of two major events about pain policy at the federal level happening this May. The first is a meeting at the U.S. Department of Health and Human Services entitled, “Implementation of the National Pain Strategy (NPS) Listening Session,” that will take place May 11 from 8:30 am to 4:30 pm EST.

The event, which is being hosted by the Office of the Assistant Secretary for Health and the National Institutes of Health (NIH), will provide an update on efforts to implement the NPS, the nation’s first strategic plan for advancing pain management, and improving the quality of life for all 100 million Americans living with pain. While the NPS itself has been finalized with input from patient groups, including U.S. Pain Foundation, the next crucial step is obtaining funding from Congress to implement it. Advance registration for this event is required by May 5. To register, click here.

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Volunteers at an Alex and Ani fundraising event.

As a nonprofit, U.S. Pain Foundation runs solely on contributions from corporate sponsors as well as private donors. The organization is encouraging members to consider hosting fundraising events to help support its mission and services.

“We rely on individual generosity to be able to offer our many programs free of charge, whether Take Control of Your Pain events, the People with Pain Matter campaign, or Pain Connection services,” says Nicole Hemenway, vice president of U.S. Pain. “Even if you are unable to give financially, you can still help out by coordinating a local fundraiser. Most people get scared of the word fundraiser, but it’s really very easy and fun. We also have a lot of different ways to fundraise, so you can pick something that best suits your interests and abilities.”

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Currently, 36 million Americans are living with migraine disease; four million of them have chronic migraine, meaning they have 15 or more attack days per month. There are many different ways you can help spread awareness and stop the stigma of living with migraine disease during Migraine & Headache Awareness Month this June.

“By getting involved in June, you can help so many people dealing with this misunderstood, debilitating condition,” says Katie Golden, a California pain ambassador who has migraine disease. “Every little bit helps.”

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The National Council on Patient Information and Education (NCPIE) recently announced that the U.S. Pain Foundation is among eight patient groups selected in the “consumer organization” board of directors category. U.S. Pain will serve on the board through 2019.

Founded in 1982, NCPIE is a nonprofit coalition representing nearly 100 organizations. NCPIE’s mission is to develop and improve communication and information about the appropriate use of medicines by creating programs, educational resources, and other services for patients and clinicians.

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Medical cannabis activists had an exciting month in April: on April 19, West Virginia became the 29th state to legalize medical marijuana, and, from April 7 to 11, many activists attended the largest conference dedicated to improving access to medical cannabis: the Americans for Safe Access (ASA) Unity Conference. Ellen Lenox Smith, U.S. Pain’s advocacy director of Medical Cannabis, was among the presenters at the four-day event, which was held in Washington, D.C.

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