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Attendees Sharon Rose, Heidi Brehm, and Ryan Drozd at the summit. View a slideshow of the weekend here.

Despite challenges often faced when traveling with a chronic pain condition, 19 advocates and a handful of caregivers rallied together in Dallas, TX, for a U.S. Pain Foundation Advocacy Summit. The goal was to help people with pain understand how they can take action at the state and federal level and influence positive change for the pain community. Participants were selected to attend because of their exceptional efforts to engage and speak out about pain in the past.

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Yesterday, Cindy Steinberg, National Director of Policy and Advocacy, and two fellow advocates who live with pain, Debbie and Scott, testified at the Massachusetts State House at a hearing on Senate Bill 1262. The bill would amend the state’s existing Patient Rights Law to require the assessment and management of pain in health care facilities.

Pain assessment and management in a health care setting should be a basic right of all citizens without discrimination. Currently, 19 states have this right in statute.

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The panel.

On July 10, U.S. Pain Foundation took its INvisible Project: Migraine Edition displays to Sacramento, CA, for an educational event at the state capitol building. The INvisible Project is a print magazine and traveling display that highlights the stories of real pain warriors. By bringing these stories to state capitols, the hope is to educate lawmakers about the challenges of living with chronic pain. Prior to California, the tour visited Providence, RI; more locations will be announced soon.

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An increasing number of states offer medical cannabis programs. In most cases, to be eligible, patients must be diagnosed with a specific condition listed by the state. Unfortunately, the list of qualifying conditions can be very limited, meaning a large number of people with chronic pain are left without access.

On July 17, the Hartford Courant published an op-ed by Ellen Lenox Smith–U.S. Pain Foundation board member and Medical Cannabis Co-Director–about Connecticut’s recent refusal to add chronic pain as a qualifying condition for medical cannabis.

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You are invited to connect with legislators and fellow pain warriors–and help create awareness around the issue of chronic pain, especially migraine disease–during our July 10 INvisible Project event at the California state house!

The INvisible Project is a print magazine and traveling display that highlights the stories of real people with pain. This year, we’re bringing the displays from our most recent edition on migraine disease to state houses across the country.

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Patient and provider groups are celebrating the introduction of the “Safe Step Act,” a federal bill aimed at lessening treatment delays and barriers to the access of prescription therapies. Filed by Representatives Raul Ruiz (D-CA) and Brad Wenstrup (R-OH), HR 2279 would reform the potentially harmful insurer practice known as step therapy, which allows insurers to force patients to try and fail on a series of insurer-preferred medications before offering coverage for the originally prescribed option. This is the second time a bill to limit step therapy has been introduced at the national level.

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On Jan. 31, U.S. Pain Foundation’s Advocacy Network will host a free training session for existing advocates and interested volunteers to learn what it means to be a patient advocate.

Attendees will learn about issues impacting Americans with chronic pain and what patient advocacy really means.

Those who register will also learn about:

  • How decisions are made at the state and federal level
  • Building relationships with lawmakers
  • Various ways to advocate
  • Why sharing patient stories matter

To register, click here.

Learn more by watching a video here.

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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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