AYA Cancer Research Funding at Risk as Senate Drops Important Language in Bill

Adolescents and young adults (AYAs) with cancer face unique challenges that affect their treatment and survival, but a lack of research and funding presents barriers to proper treatment and supportive care. With budget appropriations under discussion in Congress right now, the only government funding currently designated to investigating the unique challenges faced by this group overall is at risk.

A Few Little Words

In 2017, the Department of Defense Appropriations Act earmarked the first-ever funding for cancer research in young adults as a group (not tied to cancer type), and it was extended in 2018. But though the version of the Act proposed by the House of Representatives for 2019 funding includes this language, the Senate version does not.

The bill passed recently by the House, H.R.6157, proposed that $80 million should be appropriated for peer-reviewed cancer research programs studying specific cancers as well as “cancer in children, adolescents, and young adults.” The Senate markup, which has not yet come to a vote, omits this language. If the Senate’s version is signed into law, young adults could lose millions of dollars of support for AYA-specific research.

“By cutting this lifeline to specific research, the Senate will have once again ignored the needs of this critical population that represent our future,” said Simon Davies, Executive Director of Teen Cancer America, the adolescent and young adult cancer charity.

The bills set forth funding amounts specifically for federal military activities, including the Defense Health Program.

Kate Houghton, President and CEO of Critical Mass: The Young Adult Cancer Alliance, explained that AYA needs are particularly relevant within the military’s health system, TRICARE, because it provides care not just to servicemembers but also to their families. “Nearly 90% of active-duty servicemembers, their spouses, and their children are under the age of 40,” she explained. According to the National Cancer Institute, a young adult is defined as someone between 15 and 39 years of age. Thus, the military community is a uniquely targeted population.

“There is no other dedicated funding source for researchers to study and understand both the unique biology of cancers that appear in adolescents and young adults as well as the unique needs of this patient population,” Houghton said. “This is one of many reasons why young adult survival rates have seen little to no improvement since the War on Cancer began more than four decades ago.”

Recognition of the special needs of AYA cancer patients is slim, Houghton said. She pointed out that in the 2018 Annual Report on the Status of Cancer to the Nation, there was no mention of adolescents or young adults. “There was mention of pediatric patients 14 and younger, there was breakdown by race, ethnicity, socioeconomics, there were definitely improvements, but young adults didn't even get a footnote,” she said.

AYAs with Cancer Get Short Shrift

One factor that causes AYA research and treatment to lag behind is that clinical trials are often focused on either children or adults. In addition, some cancer types are categorized as “pediatric” or “adult.” Young adults may not receive the appropriate care because there is not enough information available to inform proper treatment for their age and stage.

Davies noted that the cancers that affect AYAs are mostly rare and difficult, and that treatment is often further complicated by the development of early-onset adult cancers by pediatric patients and of late-onset pediatric cancers by young adults.

“These institutional barriers are really what's impacting the care, treatment, and survival of young adult patients,” Houghton said.

“It is essential that we study areas such as genetic sequencing, immunotherapy, toxicity, late effects and co-morbidities, secondary cancers and palliative care—to name but a few—in the young developing body and not just in children and older people,” Davies added. “Young people's metabolisms are significantly different.”

In addition, the psychological development of AYAs is at a fragile stage in its evolution. Teenagers and young adults develop their identities during this crucial period in their lives, and being treated among patients who are not their peers can affect their emotional health.

“I have heard stories of 25-year-olds that are being treated in a bed in a room next to a 2-yr-old,” Houghton said. “The type of psychosocial impact that makes on a young adult's life—there's no way to quantify what that feels like.”

Other challenges relate to the vulnerable social and economic stage of life into which AYAs fall. Young adulthood is a time when individuals are encouraged to take personal and professional risks and make investments, both in their lives and with their finances, that will pay off later. Many young people do not have much of a safety net. “College, your first job—this is the most vulnerable you will be as an individual,” Houghton said.

Houghton was 27 years old when she was diagnosed 6 years ago with acute myeloid leukemia, so she has an intimate understanding of the experience of a young person in the United States with cancer.

“I was only working for the Democratic National Committee for 10 months when I was diagnosed with cancer, which means I didn't qualify for [the Family and Medical Leave Act]. And that's something that a lot of people don't think about. As a young adult, you have no access to capital, no access to credit. The little capital I had built I had just sunk into a brand-new house. I had bought my first house 6 weeks before I was diagnosed.”

Houghton is dedicated to shining a light on the challenges faced by AYAs, and helping to inspire meaningful change in the way public policy affects them. At Critical Mass, she’s a liaison to the federal government on issues involving the interests of the US AYA cancer community.

Giving AYAs a Voice

Critical Mass works with AYA organizations across the US and even some international organizations to help public policymakers understand the special needs of young people who have cancer.

Davies applauds the work of Critical Mass, stating that supporting its public policy work is vitally important to improving treatment for AYA patients with cancer. “As members, we [Teen Cancer America and other advocacy organizations] contribute collectively to help define the most important issues in their strategy and then support them in any way we can. Critical Mass has sophisticated online mechanisms for influencing politicians at a local and national level…. They also provide training and support to individual members and member organizations,” he said.

Critical Mass’s website offers a tool to help individuals write letters to their congressional representatives convincing them to prevent cuts to AYA cancer research. Houghton stresses that contacting lawmakers and educating them on the issues is the best thing advocates can do to help.