Poor access to care among AYA patients is not only evident in low clinical trial enrollment. The struggle to access much-needed care continues when treatment concludes. Most AYA cancer survivors must learn to navigate follow-up medical care on their own.
Advancements in the clinical care of children diagnosed with cancer have led to tremendously improved outcomes in recent years. Researchers estimate that more than 80 percent of current pediatric patients will become long-term childhood cancer survivors.1,2 This improvement is largely attributable to patient participation in clinical trials.
However, unlike the dramatic improvements in survival noted in young children and the elderly in recent years, survival rates among adolescent and young adult (AYA) patients with cancer (i.e., people who are diagnosed between the ages of 15 to 39 years) have plateaued. Contributing factors to this lack of progress include lower rates of AYA enrollment in clinical trials, differences in disease biology, different responses to the current standards of therapy, insurance lapses/lack of access to care, lack of screening, low suspicion for cancer, side effects and dose reductions in chemotherapy, adherence/compliance issues, and psychosocial barriers that are specific to this group of patients.3
Large national research studies have largely been unsuccessful in recruiting AYA patients with cancer, especially those from communities of color. By developing sustainable clinical trial recruitment and retention interventions for AYA patients and survivors, we can help ensure communities of color benefit equally from the treatment progress we make. Taking into account observed disparities when developing interventions to improve outcomes in at-risk subgroups is essential. For example, focusing on the disparities brought on by late-stage disease at diagnosis and by the paucity in clinical trial enrollment among AYA patients may open potential avenues for targeted interventions.
Disparities in Survivor Access to Care
Poor access to care among AYA patients is not only evident in low clinical trial enrollment. The struggle to access much-needed care continues when treatment concludes. Most AYA cancer survivors must learn to navigate follow-up medical care on their own—most likely at a time when education, employment, and familial independence are top of mind. A recent nationwide survey of cancer survivors revealed that younger and minority survivors were more likely to express concern about and had a greater number of unmet needs regarding their physical health, financial/insurance issues, and emotional/lifestyle issues.4 Non-engagement or disengagement with healthcare is especially high among marginalized groups, individuals in low socioeconomic strata, ethno-cultural racial minorities, and individuals with limited technological proficiency.5
Additional health disparities emerge for racial and ethnic minorities related to patient factors, such as misconceptions and preferences related to cancer treatment, systemic factors such as access to care, physician-patient communication and not feeling heard by care providers, and physician or systemic beliefs and biases. These factors result in higher rates of negative health outcomes for some AYA patients.
How Community-Based Organizations Help
Researchers within the cancer survivor community have suggested that interventions to remedy barriers to clinical trial enrollment and access to quality care among communities of color should include advocacy, education, and empowerment training.6 Developing clinical trial interventions through partnerships with community-based organizations (CBOs) and other groups that serve underrepresented communities may be another effective way of approaching the problem.
CBOs have demonstrated that they can play a critical role in addressing both educational and practical treatment barriers for individuals affected by a given disease.6 CBOs have a strong cultural understanding of the clients they serve, from which they can develop effective, targeted methods of communicating important health information. CBOs can also offer culturally acceptable support for the unmet psychosocial or financial needs of a given patient population.6 Exploring the role of community partners in bridging treatment gaps can be an effective way of increasing the clinical trial recruitment and retention of AYA patients in communities of color.
Numerous clinical, community, state, and federal organizations exist for childhood cancer survivors, including the CHOC Children’s After Cancer Treatment Survivorship program (ACTS), Cancer Kinships, Mental Health Services Oversight and Accountability Commission (MHSOAC), California Department of Education, and the Workforce Innovation and Opportunity Act (WIOA). These organizations help childhood and AYA cancer survivors access a wide variety of educational, clinical, and social support services regarding the long-term effects of cancer. For example, because of the WIOA, both federal and state governments fund local agencies to provide programs such as vocational rehabilitation, which provides counseling, guidance, training, job placement, and services to support job retention. Organizations such as the Public Law Center and Legal Aids of Orange County provide free legal services to low socioeconomic and marginalized groups.
Unfortunately, communities of color and low-income AYA cancer survivors consistently under-utilize these resources compared to their white and high-income counterparts, further driving health disparities. A good example of this racial divide is evident in the current COVID-19 pandemic, during which cross-cultural barriers have prevented full access to mental health and other services among minority populations, as has been historically highlighted in the literature.7,8 People do not access these programs because they are not aware of them, and the organizations that operate them often do not have the means to reach their intended audience. Nonprofit community-based organizations rely on health fairs and organizational partners to spread the news about their services in their communities. The pandemic has exposed the inherent flaws of this outreach methodology, which has left many organizations requesting no-cost extensions for many of their grants due to their inability to reach their communities.
From clinical trials to survivorship care, enabling equal access to these resources for all patients is crucial for them to receive the very best care and support. Approaching these goals through a new paradigm of healthcare through community collaborations can give AYA patients a better shot at obtaining good outcomes and quality post-treatment care.
References
1. Howlader N, Ries LA, Mariotto AB, Reichman ME, et al. Improved estimates of cancer-specific survival rates from population-based data. J Natl Cancer Inst. 2010;102(20):1584-1598.
2. Pew Research Center. Asian Americans: A Diverse and Growing Population. Available online at: https://www.pewresearch.org/topics/asian-americans/. Last accessed March 31, 2021.
3. Moke DJ, Tsai K, Hamilton AS, Hwang A, et al. Emerging cancer survival trends, disparities, and priorities in adolescents and young adults: A California cancer registry-based study. JNCI Cancer Spectrum. 2019;3(2):pkz031.
4. Ford JS, Tonorezos ES, Mertens AC, Hudson MM, et al. Barriers and facilitators of risk-based health care for adult survivors of childhood cancer: A report from the Childhood Cancer Survivor Study. 2020;126(3):619-627.
5. Barakat LP, Schwartz LA, Szabo MM, Hussey HM, et al. Factors that contribute to post-treatment follow-up care for survivors of childhood cancer. J Cancer Surviv. 2012;6(2):155-162.
6. Casillas J, Goyal A, Bryman J, Alquaddoomi F, et al. Development of a text messaging system to improve receipt of
survivorship care in adolescent and young adult survivors of childhood cancer. J Cancer Surviv. 2017;11(4):505-516.
7. Leong FTL, Kalibatseva Z. Cross-cultural barriers to mental health services in the United States. Cerebrum. 2011:5.
8. Herrick CA, Brown HN. The underutilization of mental health services by Asian-Americans residing in the United States. Issues Ment Health Nurs. 1998;19(3):225-240.
Lilibeth Torno, MD, is a children’s specialist in pediatric oncology at the Children’s Hospital of Orange County (CHOC) and the clinical director of the After Cancer Treatment Survivorship (ACTS) Program and outpatient services at the Hyundai Cancer Institute at CHOC Children’s. Dr. Torno is involved in a number of research projects in association with the Children’s Oncology Group (COG), and she is the clinical investigator in several COG bone and soft tissue cancer treatment studies. Dr. Torno is also involved in researching cancer survivorship and educating cancer survivors about the long-term impact of their cancers and treatments. To further this interest, Dr. Torno is involved in the Childhood Cancer Survivorship Study. In this multi-center study, Dr. Torno and others are looking at long-term health and quality of life in childhood cancer survivors. Dr. Torno is also in the process of developing an educational curriculum for survivors ages 15 and older. In the future, she hopes to create a curriculum for younger children.
At the 2026 ASCO Annual Meeting, the Louisiana Oncology Society received the ASCO Jeffrey C Ward Affiliate Advocacy Award for advancing critical advocacy priorities that have translated into meaningful legislative victories. The Iowa Oncology Society and Washington State Medical Oncology Society were also recognized for their advocacy efforts in 2025 at the meeting, receiving second place awards.
