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Patient Congress 2018

Story Telling, Palliative Care and Protecting People with Pre-existing Conditions

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.

“These stories are so powerful, they tell us so much about the individual experience of illness and the health care system more broadly. It was amazing to participate in this Patient Congress, to hear these stories and to see how they brought people together.”

- Gwen Darien, Executive Vice President for Patient Advocacy

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.

“PCHETA is groundbreaking legislation, a major step forward in assuring that patients have access to palliative care and end of life care, and that providers have the training needed to deliver these critical services,”

- Rebecca Kirch, Executive Vice President for Health Care Quality and Value

NPAF Honors Lisa Miller for her Advocacy

Every year, NPAF honors one of its wonderful volunteer advocates. This year it was Lisa Miller, who works as a patient advocate for a hematology/oncology practice in Columbus, Ohio. “I was meant to do patient advocacy,” she says. “Through my job, I see how much people need an advocate, someone who makes sure that you understand your care, that you are taken care of, that there’s someone to go to bat for you.” Lisa has been doing this job for almost 17 years and seen both a growing awareness of the importance of patient advocacy and increasing need for it. Her focus is on helping people deal with the financial impact of their 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.

“It’s scary. Your doctor says you need this, and you want to know if you are okay, but they deny it. That changed my perspective. I fight even harder for my patients. I just don’t take no for an answer--and I keep asking, how can I change this so people don’t go through this.”

Lisa is preparing to go back to school, beginning in January to take her skills, career and advocacy to the next level. “That’s scary, too, starting school at this age, but my girls keep telling me I can do it. I think being a patient advocate has been good preparation for this next challenge.”

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.

View all 8 videos from the 2018 patient Congress

“At the end, I finally got brave and totaled up the bills, just the medical bills, not the pharmaceutical ones and it totaled $172,000. With our insurance and without the help we got, we would have been left with a debt of $147,000. These skinny insurance plans scare me because people don’t understand. I don’t want this to happen to anyone else."

- Judy Hodges, Virginia


“This happened to us and we didn’t see it coming. Medical debt destroys lives, changes outcomes, causes more stress in people’s lives….I will continue to work to eliminate medical debt until the day I drop.”

- Big John Thompson, Louisiana

“My patient understood the risks she was taking by going back to work and not wearing her life vest to prevent a deadly heart rhythm, but she said, it was either that or feeding my babies. Now what?”

- Tammy Taylor, Mississippi

“We call these people the working sick. We have to look at medical debt in great detail because what’s happening in this country is unacceptable….I hope we can all work together and figure out how to fix this. People are trying to keep their homes. They are trying to keep their lives together. They are trying to keep their communities together.”

- Susan Brown, Maryland

“It’s so important to learn, to ask what are our options because our loved ones don’t want to die and the system is forcing them to die. I am standing here as a nurse, as an advocate for the aging population, and I fight for them.”

- Hilda Reyes, Massachusetts


“Palliative care allowed us to enjoy the last days of my aunt’s life, not running around trying to figure out to coordinate care or pick her up off the ground. The team that came in provided the support not only for my aunt but for her primary caregivers.”

- Sa’Brina Davis, North Carolina

Volunteer for NPAF