U.S. Pain Foundation’s involvement with various diseases and causes takes its staff members all over the country, and this month was no exception. Representatives gave talks, led sessions, hosted tables and participated in panels at two conferences this month: the HealthyWomen Chronic Pain Summit and the 35th Annual Marfan Foundation Conference.
HealthyWomen Chronic Pain Summit: Fighting for change for the pain community
On July 17 and 18, U.S. Pain’s National Director of Policy and Advocacy Cindy Steinberg attended the first HealthyWomen summit on chronic pain in Ellicott City, MD. The summit addressed the challenges in treating and managing chronic pain in women and encouraged greater focus on the effect that chronic pain has on women’s health. HealthyWomen is a nonprofit that offers independent health information for women.
Steinberg spoke on a panel entitled “Bringing about Change through Policy,” delving into the complexities of pain-related policy in the United States. She covered a brief history of the topic and discussed the different authorities and jurisdictions involved. Fellow panelists Alicia Richmond Scott from the Department of Health and Human Services and Ellen Blackwell from the Center for Medicare and Medicaid Services rounded out the discussion of the role of federal policy change in bringing about improvements in pain care.
With so many authorities and stakeholders, how does a person working for change know where to start? Steinberg explained that in order to make a meaningful difference, advocates must determine the locus of control and the process for making change for each issue and engage in that process.
“I applaud HealthyWomen for sharpening our focus on the unique issues of women and chronic pain and encourage those who did not attend their terrific conference to check out conference clips on the HealthyWomen.org website, when they become available,” she said.
Marfan Conference: Cognitive Behavioral Therapy and Support
U.S. Pain’s Gwenn Herman, LCSW, DCSW, Clinical Director of Pain Connection, and Malcolm Herman, Director of the National Coalition of Chronic Pain Providers and Professionals, travelled to Houston, TX, from July 11-14 for the 35th Annual Marfan Conference. The conference, presented in association with Texas Children’s Hospital, provided attendees an opportunity to learn about Marfan syndrome and related conditions, hear about the latest research, and connect with other patients and clinicians in the field. Marfan syndrome is a genetic condition that affects the body’s connective tissue.
“The conference was filled with the latest scientific and medical treatments– but also lots of love and happiness,” said Gwenn. “Different age tracks allowed young people to feel unjudged, have fun, and make new friends that either look like them or have been through similar experiences.”
Gwenn and Malcolm hosted an information table together and each gave a presentation at the conference. Gwenn’s speech was focused on the possibilities for “Managing pain with cognitive behavioral therapy (CBT)” by helping participants become aware of their unintentional negative self-talk, teaching them how to reframe thoughts with neutral and/or positive statements. Studies have shown that this can have an effect on both pain levels and mental health.
Meanwhile, Malcolm led a support group for fathers learning to cope with Marfan or related conditions in a family member.
“It was great to lead the Fathers’ Support Group and to observe how those dealing with Marfan and related conditions in their family for many years were eager to provide counsel and support to younger fathers with newly diagnosed children,” he said. “The entire conference was outstanding for its spirit of cooperation. I am also pleased that at the U.S. Pain Foundation table we were able to provide important information and materials to participants on their significant and undertreated chronic pain issues.”