On March 4th, 2020, the Cancer Support Community will bring together a group of dedicated and passionate advocates from around the country to meet with their elected officials and staff on Capitol Hill for Advocacy Day. One advocate is Kelly Hendershot, a caregiver to her husband who died of brain cancer at the age of 30 and the Program Director of Gilda’s Club Quad Cities. She is traveling all the way from Iowa to be part of this day of action to help ensure that the patient remains at the center of all policies and regulations related to health care.
We had the chance to catch up with Kelly before she started her journey to Washington, DC
Why is it important for you to participate in Advocacy Day?
My first Advocacy Day was in 2019, and it was very much an inspirational experience for me. I had the opportunity to meet with Iowa representatives to share our Clubhouse’s story and begin a narrative around the importance of distress screening for those participating in clinical trials. It was a wonderful eye-opening experience that I look very much forward to repeating. If our elected officials are fortunate enough to have not yet had a personal connection to cancer – as either the one diagnosed or the caregiver, then it’s important for them to hear the stories of members throughout the Cancer Support Community’s affiliate network to make cancer-related ills and endorsements real to them.
What motivates your advocacy work?
I was first motivated to advocate for those impacted by cancer when my husband of three months was diagnosed with terminal brain cancer in 2007. After his death at the age of 30 in 2009, I wanted to give a voice to the issues faced by young adults living with a cancer diagnosis – financial toxicity, fertility preservation and the need for psychosocial support. Once I started working at Gilda’s Club Quad Cities in 2015, policy and advocacy became much more real to me. Day in and out I see the struggles of our members who need either a voice or help finding their own voice. Advocacy is a wonderful way to grow and challenge yourself, while advancing the needs of others by giving those needs a voice.
What is the message that you want to share with people impacted by a cancer diagnosis?
In the US, over 15.5 million people are living with a cancer diagnosis. As cancer continues to make a shift to a chronic disease, that number is expected to reach 20 million in the next 10 years. Evidence tells us that these survivors, and their family members, will see increases in quality of life and reductions in emotional distress when psychosocial care and screening are part of the standard of care. Despite my own husband only surviving his brain cancer 19-months from diagnosis to death, his quality of life during that time was greatly improved when we made attending the psychosocial support program offered by our local Cancer Support Community affiliate. While we don’t yet have the ability to cure every cancer, we do have it in our power to ensure that everyone diagnosed with cancer has the opportunity to receive psychosocial health services.
What is your goal in meeting with your elected officials?
My number one goal in meeting with my elected officials is to share the stories of our members – their constituents. Our members, after all, are the experts in living with cancer – whether they’re newly diagnosed, survivors or caregivers. They are the ones who live moment-to-moment the whirlwind that a cancer diagnosis can be. For instance, the growth, comfort and increased quality of life they find by taking part in the psychosocial services offered through our affiliate network is a story that needs to be shared to make the need for including psychosocial care in the Food and Drug Administration Reauthorization Act of 2017 more impactful. I also plan to invite my elected officials to the Gilda’s Club Quad Cities affiliate in Davenport, Iowa so they can see firsthand the services offered to patients, caregivers, loved ones and children.
If you are interested in learning more about how you can participate in Virtual Advocacy Day and other ways to get involved to help raise patients voices, sign up today to be a part of the Grassroots Network!
To find out more about Kelly and her commitment to advocacy, read the Advocate Spotlight in which she is featured.