Childhood Cancer Action Days 2019

On March 26, 2019, Ivy, a 14-year-old childhood cancer survivor, walked on the steps of Capitol Hill embarking on a two-day advocacy effort with a group of representatives from the Northern Nevada Children’s Cancer Foundation (NNCCF). NNCCF travels each year to the Hill because advocating is critical for research funding to improve treatments and find a cure. It is a big step towards establishing childhood cancer as a national priority.

Ivy was diagnosed at the age of 5 with acute lymphoblastic leukemia (ALL) and completed treatment in May of 2012. She was diagnosed with the most common type of childhood cancer but had the least common journey with treatment. Ivy is part of the 1% of children worldwide who experience an adverse effect from the therapy – she lost the use of her legs and was told she would never walk again.

In January of 2013, Ivy had surgery on her legs and her family made additional efforts for her health. After three years of requiring a wheelchair, surgery, other efforts and therapies, she regained her strength and was able to walk again.

Ivy motivated representatives and legislators during Childhood Cancer Action Days as she stood alongside them advocating for other children like her, “It felt amazing to meet our state legislators on Capitol Hill,” said Ivy. “It also felt incredible to tell my story to them, so that I could help so many kids just like me!”

“It was inspiring to watch our 14-year-old advocate, Ivy, bravely share her story of surviving treatment and side effects. She is a wonderfully healthy young woman with a bright future,” said Shirley Folkins-Roberts, NNCCF executive director. “Watching her and her older sister, Keely, passionately advocate for better treatment for children was magical.”

Keely not only joined the efforts on Capitol Hill as a sibling of a child with cancer, but she also joined as an intern at NNCCF, “Through my sister’s treatment and this internship, I have been able to meet hundreds of kids and families affected by childhood cancer. I kept them in mind all throughout the day, and when it was appropriate I shared my experiences,” she said.

Keely explained to lawmakers how a childhood cancer diagnosis can affect the whole family, “I shared what it was like to be a sibling of a child with cancer, and how difficult it was to have one parent living at the hospital with my sister.” She described that there are “many other kids out there whose childhood experience is severely affected by their sibling’s cancer diagnosis.”

Since 2006, NNCCF has traveled to Washington D.C. close to 20 times to lead the charge in bringing awareness to underfunded research. In the last couple of years, NNCCF has joined the ranks of the Alliance for Childhood Cancer to urge Congress to appropriate more funding for pediatric cancer research.

The Alliance for Childhood Cancer urged three requests for Congress to support:

1. $41.6 billion in funding for the National Institutes of Health (NIH) which would include $6.5 billion for the National Cancer Institute (NCI) and would fully fund the President’s childhood cancer initiative announced in his State of the Union address.

“Tonight, I am also asking you to join me in another fight that all Americans can get behind: the fight against childhood cancer. Many childhood cancers have not seen new therapies in decades,” said President Trump. “My budget will ask the Congress for $500 million over the next 10 years to fund this critical life-saving research.”

2. Annual budget funding for the STAR Act in 2020 to be kept at the same level, $30 million in funding, like last year.
   In 2019, the STAR Act, the most comprehensive childhood cancer bill in history, was signed into law and Congress provided $30 million to fund its programs for the current fiscal year.
3. Palliative Care and Hospice Education and Training Act (PCHETA) to establish Palliative Care and Hospice Education Centers to improve the training of health professionals, establishes a national campaign to inform patients, families and health professionals about the benefits of palliative care and the services, and directs expanded NIH funds to improve the delivery of palliative care to patients with serious illnesses.

NNCCF’s representatives this year included siblings Ivy and Keely, Shirley Folkins-Roberts, the executive director of NNCCF, Shaemus McCrory, the president of the NNCCF board of directors, and Carol Truman, an NNCCF board member and grandmother of childhood cancer angel, Pierce Phillips. The trip was graciously funded by the Heath Foundation, a long-standing supporter of NNCCF’s programs and advocacy efforts.

Childhood Cancer Action Days 2019 was Folkins-Roberts’ 13^th trip to Washington D.C. as an advocate for children with cancer. Over the years she has seen growing Congressional support for childhood cancer research.

“Our efforts have helped legislators realize the importance of exciting research and have moved funding up on their list of priorities,” said Folkins-Roberts. “I feel that the legislators and staff truly listened to our request to fund the STAR Act again in the 2020 budget, and it is vital that our community continues to communicate this priority.”

In the past weeks since NNCCF visited the Hill, House and Senate leaders of both Republican and Democratic parties have pledged to provide increases in funding for both the National Institutes of Health (NIH) and the National Cancer Institute (NCI). There are 35 Senators that signed the appropriation letter seeking support for the STAR Act asking the Senate Appropriations Committee to provide $30 million in funding.

According to the Alliance for Childhood Cancer, “Our feedback from the Hill is proving that our message was heard and that Congress is already working to make Childhood Cancer funding a top national priority.” The last step to reinforce support is to thank legislators and encourage them to continue helping children with cancer.