Advocates highlight importance of caregiver voice in cancer fight

Hundreds of cancer survivors, caregivers and providers from across the country traveled to Washington, D.C., to attend the 2023 American Cancer Society Cancer Action Network Leadership Summit and Lobby Day in September.

Due to unexpected health-related circumstances, Delaware’s representative Donna Holland was unable to make the trip; nevertheless, Holland was still able to promote the stories of and elevate the issues impacting the estimated 7,240 Delawareans who will be diagnosed with cancer in 2023.

The summit and lobby day provides advocates from across the country the opportunity to connect with lawmakers and discuss the importance of key proposals to benefit the cancer community, including funding for cancer research, measures expanding access to quality, affordable healthcare, and evidence-based policies to limit tobacco use and uptake. This year, advocates urged lawmakers to support an increase in federal funding for cancer research through the National Institutes of Health as well as two pieces of legislation. The first of these would waive out-of-pocket costs for individuals with the highest risk of prostate cancer, including Black men and those with a family history of the disease; the second would create a pathway for Medicare to cover new multi-cancer early detection tests once they are approved by the Food and Drug Administration and proven effective.

The three-day summit also included a light display at the Constitution Gardens where ACS CAN and its advocates placed lit paper bags decorated with the names of those lost to cancer, those fighting the disease and the caregivers by their side. Known as ACS CAN’s Lights of Hope, the Capitol exhibit is the culmination of countless displays that have been organized by volunteers across the country over the last several months.

Holland’s work during the event lead-up included fundraising for Lights of Hope and keeping Rep. Lisa Blunt Rochester and Sens. Tom Carper and Chris Coons informed on key proposals, thus helping ensure that Delaware was duly represented.

Holland’s advocacy journey started in 2020, when she lost her sister Barbara to lung cancer after acting as her caregiver for more than a year. Holland had also cared for her daughter when she was diagnosed with Wilms tumor at the age of 5, and her niece amid her battle with lung cancer, as well as her sister-in-law and dear friend Ted throughout their cancer journeys.

In the years following her sister’s death, Holland wanted to do more to help fight this disease. She was living in Rhode Island at the time and got involved with ACS CAN’s team there. With her help, ACS CAN RI was able to secure both state and federal bills expanding Rhode Islanders’ access to care and critical tobacco resources, and increase support among Rhode Island’s members of Congress for critical cancer-related legislation. Holland recently retired to Rehoboth Beach and is proud to honor her sister’s memory in her new home state. “It’s like I got to bring a piece of her with me,” she said.

Everyone touched by cancer realizes the disease knows no limits. Holland is eager to continue the fight against cancer in Delaware, celebrating her sister’s legacy along with the estimated 2,230 Delawareans who will die from cancer in 2023. Delaware is in need of volunteers, and Holland is determined to build out a team of advocates who can join her at next year’s summit and lobby day, and support Lights of Hope. In doing so, she aims to ensure that the voices of the cancer community and their caregivers are heard loud and clear in the halls of government.

“By working together, we volunteers can endeavor to secure research dollars and expand access to prevention, early detection and quality treatment, saving countless lives in the process. I am proud to advocate on behalf of cancer patients and their caregivers, and grateful to the members of my community, especially Jack Lingo Realtor and Beebe Healthcare, who have sponsored our advocacy work with generous donations,” said Holland. “Over the last 40 years, I have had the honor of acting as a caregiver to my daughter, sister, niece, sister-in-law and friend. Standing beside someone through their cancer diagnosis and treatment – and, in some cases, their death – leaves an imprint on your heart, which motivates me to pursue cancer-focused policies as a volunteer with ACS CAN.”

Delawareans impacted by cancer and wishing to get involved with ACS CAN should go to fightcancer.org or contact Casey O’Neill at casey.oneill@cancer.org.