Every year, NPAF brings about 35 advocates and volunteers from all over the country to Washington, DC. The group comes together to learn about current health care related issues, participate in advocacy training and to connect with each other and the NPAF staff.
This year, Patient Congress added a new feature, a Story Slam. Each person attending the conference had the opportunity to share one story from their experience as a patient, caregiver or provider. Training both before the conference and during it focused on how to tell those stories more effectively and include them in advocacy activities. The Story Slam took place in the Rayburn Building on Capitol Hill, providing a powerful testament to the issues that people face when they experience serious illnesses, and the reasons they choose to become advocates.
The advocates participated in briefing sessions on key issues, including protecting pre-existing conditions in insurance coverage and pushing the Palliative Care and Hospice Education and Training Act (PCHETA) over the finish line in Congress. Following the Story Slam, participants headed for the Hill to meet with their representatives, advocating for legislative action and for assuring that everyone has access to high quality, affordable health care.
“People don’t realize how great the financial impact of having a serious disease can be, and how much it can affect their lives. I’ll work with a patient who is a husband and provider and he’ll start missing work or building up debt and it changes everything for the entire family. The stories I heard in the Story Slam are the ones that I live everyday when people come to me for help.”
Lisa’s advocacy became more personal in 2014 when she was diagnosed with a brain tumor. After surgery, her doctor ordered a MRI to assess whether the tumor had removed entirely–but the insurance company refused to authorize it. She was and continues to be left with the choice of paying for the procedure out of pocket or not getting it at all.
Videos
Becoming an Advocate–Gwen Darien, NPAF executive vice president for patient advocacy, talks about her own transformation from cancer patient to advocate. To learn more, see the Patient Perspective Gwen wrote for the National Academy at http://nam.edu/transformation-my-experience-as-a-patient-and-advocate-in-three-chapters/
“Be Your Own Best Advocate” Joan Powell, who lives with myelodysplastic syndrome, explains how she turned fear and depression in determination to become an effective advocate for herself and others.
A Window on Caregiving–Wy Harris retired from her nursing career to care for her husband after he had a heart attack. She talks about how she thinks of her role as opening windows to make sure his voices, and hers, are heard.
Why Your Story Matters: Tom McCoy, who works to advance health care policy and legislation, talks about the importance and power of stories in advancing key issues at the public level.
Your Illness and Your Job, Monica Grandovic, who has MS, discusses how illness can negatively affect your job and financial status, and why becoming your own best advocate is so critical.