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:
“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.”
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’ 13th 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.
On April 27, 2021, NNCCF helped make a difference in childhood cancer funding and research by participating in the virtual 2021 Childhood Cancer Action Day with the Alliance for Childhood Cancer. We joined more than 250 advocates from 37 states to ask Congress to fully fund the STAR Act, the most comprehensive childhood cancer bill in history, for the fourth straight year.
Due to our collective efforts and advocacy, the House Appropriations Committee set aside $80 million for childhood cancer research programs in 2022 which fully funds the STAR Act. It is a huge step in the federal funding process and we will continue to make childhood cancer a national priority.
NNCCF staff and families virtually met with members and staffers in the healthcare jurisdiction to urge this support. In attendance were NNCCF survivor Kalia and her mom Jenna, survivor Landen and his parents Debbie and Craig, Tiffany, a mother of survivor Felina, and survivor Katie and her mother Lynn. NNCCF was able to meet with Rep. Amode staff, Rep. Lee, Sen. Cortez Masto and Sen. Rosen staff.
During the meetings, Debbie, Landen’s mother, urged representatives to continue support, “Please help us fight this plague that is cancer and give our children promise for a better life; allow them to grow and fulfill their dreams,” she said.
Landen was diagnosed with and aggressive bone and soft tissue tumor in February 2020. During ten months of intense treatment a small list of what he endured included 34 weeks of chemotherapy, 28 radiation treatments, more than 12 blood transfusions, five surgeries, five months with an open wound on his shoulder and four emergency trips to the E.R.
“Landen is a fighter. He is the epitome of grace, strength, and courage, he is our hero. And he, like all other children impacted by this horrible disease, deserves a future,” said Debbie.
1 out of 264 children will be diagnosed with childhood cancer in the United States, before the age of 20, and because of the treatments they received, by age 50, more than 99% of childhood cancer survivors have a chronic health problem and 96% have severe or life-threatening conditions.
“We cringe every time Landen’s oncologist reminds us that due to his treatment Landen at 16-years-old has the heart of a 35 to 40 year old,” said Debbie. “Federal funding for databases and research is so important for these children with these rare diseases. Without this funding doctors will continue to simply prescribe the same toxic treatment that fails to save enough children and leaves those that do survive with lasting effects.”
On June 5, 2018, the STAR Act, was signed into law. In the last three years, Congress provided $30 million each year to fund the programs created by the STAR Act. The STAR Act stands for: Childhood Cancer Survivorship, Treatment, Access and Research. “It expands opportunities for childhood cancer research, improves efforts to identify and track childhood cancer incidences, and enhances the quality of life for childhood cancer survivors,” said the Alliance for Childhood Cancer.
NNCCF recognized the need for more advocacy and research to find a cure and has advocated at each Childhood Cancer Action Day on Capitol Hill since 2006.
During the month of June, our Executive Director here at NNCCF, Debbie Strickland, and some members of NNCCF families traveled to Washington D.C. for the Childhood Cancer Action Days. Here is why they went and what Debbie had to say about the trip:
What happens on Childhood Cancer Action Days?
“Each year we advocate for research appropriations, we need money,” Debbie said. “We always bring a family, we talk about how access to health is difficult, we talk about treatment, we talk about research.” Debbie also said that bringing a NNCCF family to Washington D.C. helps get the attention of politicians by “shaking their core” and reminding the politicians that childhood cancer affects real people and real families.
What is the #StepUp initiative?
As stepupforchildhoodcancer.com states, the social media hashtag “#StepUp” encourages all kinds of people, from those involved with cancer organizations to community members, to advocate for more childhood cancer research funding. In particular, organizations like NNCCF are asking for people to “step up” and put support behind the STAR Act.
What is the STAR Act?
Survival, Treatment, Access,and Research is what “STAR” stands for. The Act has yet to be formally introduced pending strong bipartisan support in the House and Senate to ensure that it will be in the strongest position to be voted into law.
This act is asking for all of the currently “fragmented” data about childhood cancer to be put together, to be compiled nationally. Data is available for all different kinds of childhood cancers like brain tumors, leukemia, and others, but the data has not been assessed as a whole. Specifically, baselines need to be set and understood for things like overall childhood cancer survival rates and how different childhood cancers compare to each other. This will help researchers and those wanting to create legislation better understand how the nation needs to fight childhood cancer. Once this happens, asking for research funding will be more efficient and more compelling than asking for money is right now, with research statistics and data scattered in different states and with different organizations. In essence, creating one, unified data and research effort will help to further the research cause for all types of childhood cancer.
What is the reason people lack awareness and education about the need for childhood cancer research?
Debbie answered, “If you’re looking at numbers in comparison to adult cancers, it’s a small percentage.”
With this in mind, Debbie believes that the government will hear out the largest entity, which, in this case, is adult cancer research. For groups like us, this is an important obstacle. As Debbie said, “Our numbers are small, but we don’t want our voice to go away.” For this reason, having a presence each year in Washington D.C. is important. Meeting with politicians is vital to display the passion and support that back the childhood cancer cause.
What can people do to improve awareness and education about childhood cancer research?
Debbie said, “It’s a beautiful thing that we’re in our state with a lot of our representatives. If you’re down in Carson City eating at a local restaurant, it’s likely that one of our senators is going to be sitting next to you.” Because of this proximity to our legislators, Debbie stressed the importance of letting those politicians know that groups like NNCCF have an impact in our community. If you see a politician. Don’t hesitate to bring up issues like the STAR Act, childhood cancer, or even NNCCF. It is important to let those politicians know that childhood cancer matters in the Northern Nevada community.
NNCCF would like to thank Barrick GOld for making this Washington D.C. trip possible.
As the Northern Nevada Children’s Cancer Foundation prepares to attend the 2014 Childhood Cancer Action Days on Capitol Hill, we look back at how far we have come in just a year. With the help of a generous donation to NNCCF, we are proud to announce that we are expanding our program to include support for adolescents diagnosed with childhood cancer before their 21st birthday and through treatment until their 23rd birthday, a group often referred to as Adolescents and Young Adults (AYA). Being able to serve this age group helps to align NNCCF with other national organizations, brings NNCCF to a whole new level of care and allows help to extend to a greater number of people. Previously NNCCF was only able to help those diagnosed before their 18th birthday.
In addition to the program expansion, Nevada has passed the Oral Chemotherapy Parity Law. NNCCF is relieved to see the shift in legislation now allowing families to receive oral chemotherapy without the burden of extremely high co-pays. According to the International Myeloma Foundation, traditionally, IV chemotherapy treatments are covered under a health plan’s medical benefit where the patient is required to pay an office visit copay, usually between $20 and $30. Conversely, oral anticancer medications are covered under a health plan’s prescription benefit and, many times, patients are responsible for extremely high and unmanageable copays, creating an enormous barrier for patients to access orally administered drugs. According to a recent study published in the Journal of Oncology Practice and American Journal of Managed Care, 10% of cancer patients failed to fill their initial prescriptions for oral anticancer medications due to high out-of-pocket costs.
In an effort to remove barriers to accessing life-saving treatments for cancer patients, Nevada implemented legislation for health policies issued or renewed on or after January 1, 2015. This law requires health policies that provide coverage for the treatment of cancer through chemotherapy must not require a co-payment, co-insurance or deductible of more than $100 per prescription for orally administered anticancer treatment. Additionally, plans may not increase the out-of-pocket cost to patients to achieve compliance.
What Does This Mean for Patients?
If a patient is privately insured (the law does not apply to Medicare or Medicare supplemental plans), and their plan covers chemotherapy, an FDA-approved, orally administered drug should have a maximum of $100 co-payment per prescription.
Along with all of these positive changes, the Nevada Cancer Coalition is currently in the process of re-writing the strategic plan for the state. Moving forward, NNCCF will have a voice in this plan and the NNCCF team is excited to see what Childhood Cancer Action Days will bring at the end of June.
On April 23, the Northern Nevada Children’s Cancer Foundation (NNCCF) represented the state of Nevada on Capitol Hill in support of the STAR Act. NNCCF childhood cancer survivor, Johnny Hartman, lead the team and shared his story with legislators. In 2016, Johnny was diagnosed with Stage IV non-Hodgkin lymphoma and completed treatment in May of 2017. We asked him about his trip and how advocating for childhood cancer inspired him.
Q: How was training and the whole run-down on day one?
A: I thoroughly enjoyed training day. The informational sessions made me incredibly excited as I learned how extensive this bill is and how it will be beneficial to so many children and their families. Learning of the new, less-toxic treatment plans researchers are trying to perfect for all pediatric cancers made me excited for the future of immunotherapy and the extinction of chemotherapy.
Q: What was the experience like, meeting legislators on the Hill on day two?
A: The training day was fun, but meeting the legislators was something I will take with me for the rest of my life. First off, it was an honor being given the opportunity to be the voice of pediatric cancer patients across Northern Nevada, but it was profound to also express the importance of the STAR Act by letting our representatives know how essential this bill is for so many families.
Q: Who did you meet with on Capitol Hill?
A: I met with Senator Dean Heller and Senator Catherine Cortez-Masto along with their staffers. I also had the chance to meet staffers from the offices of Representative Mark Amodei and Representative Dina Titus.
Q: Who did you meet from other childhood cancer organizations and what inspiring things did you hear?
A: The training day session was not only a time for soaking up all the information of the STAR Act but also a networking opportunity. I met with other advocates from other states and got to hear of some incredibly empowering stories of other survivors as well as parents of children who have fought, fighting, or are just beginning their cancer journey. Listening to the stories of relapse, children battling cancer even before starting kindergarten, and discovering similarities of common chemotherapy drugs during each other’s treatments all made for profound connections.
Q: How was your experience seeing Capitol Hill and Washington D.C. as a whole?
A: As a person who lives to travel, it was also another gift being able to travel to the most important city in the United States. The history, architecture, and culture of Washington, D.C. is so polarizing to that of the west coast. It was fun being immersed in a society that is a little out of my comfort zone.
Q: What was the most empowering part of the trip?
A: Ultimately, overall, being part of something that could potentially change the future of cancer care was easily the most empowering aspect of the trip.
The Northern Nevada Children’s Cancer Foundation will be advocating for important childhood cancer issues before Congress this Tuesday, April 24. NNCCF Executive Director, Mary Powell, and childhood cancer survivor, Johnny Hartman, will meet with Nevada state legislators on Capitol Hill to advocate for research dollars designated to childhood cancer.
“It is important our representatives are in touch with the needs of families in our community experiencing childhood cancer,” said Powell. “Access to better healthcare, improved treatments, and the hope for a cure are all issues we encounter in the work we do in northern Nevada.”
From the moment Hartman completed treatment and was considered “cancer free” he wanted to be an advocate for the cause. Sharing his story in Washington D.C. helps remind politicians that childhood cancer isn’t just a statistic on paper, but it affects real, living and breathing, standing-in-front-of-you kids.
“I am passionate about being an advocate for childhood cancer because I want to do everything in my power to make sure children do not have to go through what I faced during my treatment,” said Hartman. “I feel honored to be a part of an organization that devotes their energy to help pediatric cancer patients and their brave families.”
This year, communities from across the United States come together in one unified voice to support the STAR Act. “The Childhood Cancer Survivorship, Treatment, Access, and Research (STAR) Act is the most comprehensive childhood cancer bill ever taken up by Congress. It would expand opportunities for childhood cancer research, improve efforts to identify and track childhood cancer incidences and enhance the quality of life for childhood cancer survivors.” – AllianceForChildhoodCancer.org
The main focus of Childhood Cancer Action Days is having the STAR Act passed by the House of Representatives and have a proper appropriation of funding.
“I am most looking forward to bringing awareness to our country’s lawmakers and hopefully making a difference in the lives of young cancer warriors all over the United States by getting important and helpful legislation passed,” said Hartman.
Powell and Hartman are prepared and ready to show members of Congress that childhood cancer needs immediate attention for research and funding. Although the Northern Nevada Children’s Cancer Foundation is not a state or federally funded nonprofit, advocating for awareness and research is part of the foundation’s mission.