Closing the Gaps: Progress in the Care of Adolescents and Young Adults With Cancer

Fifteen years have passed since a glaring spotlight was shone on the limited attention given to studying cancer in adolescents and young adults (AYA). Although many working in the AYA field were acutely aware of the need for prioritization, a 2006 Report from the Adolescent and Young Adult Oncology Progress Review Group drew more widespread attention after submission to the National Cancer Institute Advisory Committee. This report stated, “Relatively little is known about biologic, genetic, epidemiologic, therapeutic, psychosocial and economic factors that affect the incidence, disease, outcomes and quality of life of AYA diagnosed with cancer.”¹

In 2020, there were an estimated 89,500 new cancer diagnoses in AYAs in the United States, with important differences in the distribution of cancer types, intrinsic and extrinsic risk factors, tumor biology, and prognosis and survivorship.² Although much work remains to be done, in the 15 years since the Advisory Committee Report was published, there have been clear and measurable successes in the AYA oncology space including fertility preservation options and insurance coverage, cooperative group clinical trials, insurance coverage, and overall cancer mortality, to name a few.

Using population-based cancer incidence data in the United States from the National Cancer Institute's SEER program and the Centers for Disease Control and Prevention's National Program of Cancer Registries, overall cancer incidence increased in all AYA age groups from 2007 to 2016 compared with previous decades, whereas overall cancer mortality declined during 2008-2017 by 1% annually across age and sex groups.² Increased incidence rates were largely driven by a 3%-4% increase in thyroid cancer diagnoses.² Of note, women age 30-39 years did not see a decline in overall cancer mortality, which might have been affected by a stabilization in breast cancer mortality rates following significant declines. Additionally, overall mortality rates may reflect the rising incidence of colorectal and uterine cancer in AYAs.²

Following an oncologic diagnosis, 71% of women and 68% of men report that their diagnosis did not change their desire for children.^3,4 Since the term oncofertility was coined by Woodruff⁵ in 2006 to describe the intersection of two disciplines—oncology and fertility—the oncofertility space has changed vastly over the past 15 years. In 2006, fertility preservation was mostly limited to sperm cryopreservation in males. However, in 2012, the Practice Committees of the American Society for Reproductive Medicine and the Society for Assisted Reproductive Technology published a practice update removing the investigational label from oocyte cryopreservation, which leads to its widespread adoption by clinics across the country.⁶ More recently, in 2019, the Practice Committee of the American Society for Reproductive Medicine published a practice update stating that ovarian tissue banking is an acceptable fertility preservation technique and is no longer considered experimental for patients undergoing gonadotoxic therapy or gonadectomy.⁷ These technologies have opened up family building options for AYAs with cancer who previously had none. In addition to these advances in reproductive technology, there have been important steps forward in legislation at the state level. Since 2017, 24 States and the District of Colombia have introduced fertility preservation bills and 10 states have enacted fertility preservation coverage (Fig 1). These laws now provide fertility preservation coverage for more than 31 million individuals in the United States. Additionally, in 2021, fertility preservation was added to the Federal Employees Health Benefits coverage. Today, both male and female AYAs with cancer can look forward to a potentially fertile future that was not possible in previous years.

FIG 1.

2017-2021 fertility preservation legislative summary. Updated March 21, 2021.

Insurance coverage for the AYA population has also been a long-standing barrier to accessing affordable medical care. According to the Centers for Medicare & Medicaid services, before the Patient Protection and Affordable Care Act (ACA), approximately 30% of young adults were uninsured, a rate higher than any other age group and three times higher than the uninsured rate among children.⁸ Additionally, young adults had the lowest rate of access to employer-based insurance, placing the health and finances of young adults at risk. Since the implementation of the ACA in September 2010, literature has demonstrated an increase in the number of AYAs with insurance and cancer diagnosis at an early stage.⁹ There is also evidence of the ACA's positive impact on initiation and completion of human papillomavirus vaccination, which is known to cause cervical, vagina, and vulvar cancers in women, penial cancers in men, anal and oropharyngeal cancers in both men and women.¹⁰ Access to affordable medical care is important not only for preventative care and the early detection and treatment of cancer but also for adherence to recommended cancer surveillance and survivorship care plans.

Increased collaboration between pediatric and medical oncology cooperative groups across the NCI Clinical Trials Network (NCTN) has allowed for substantial progress in addressing disparities in care and outcomes for AYAs with cancer. The focus on more expansive partnerships has led to a record number of cross-network AYA trials open across the NCTN. Currently, there are six active Children's Oncology Group–led AYA trials and four active adult research based–led AYA trials active within the NCTN. For the first time, cross-network AYA supportive care trials are being developed, with new concepts focused on fertility preservation and the prevention of treatment-induced liver toxicity in patients with acute lymphoblastic leukemia. The pediatric and medical oncology cooperative groups' development of collaborative trials for therapeutic and supportive care AYA will almost certainly transform the future of AYA cancer care.

Although there has been clear and measurable progress over the past 15 years, the needs of AYAs with cancer are ever-changing and expanding and demand specialized attention. Ongoing efforts must be made to increase therapeutic and supportive care clinical trial enrollment. Processes must be directed toward creating equitable access to care, which is imperative in the reduction of cancer morbidity and mortality in AYAs. Additionally, there is a critical need to advocate for insurance coverage, comprehensive fertility preservation bills, preventative and survivorship care, adequate psychosocial resources, and clinical trial funding. Despite the vast multidisciplinary challenges that lie ahead, we should acknowledge the already impactful work of a dedicated community of patients, family members, researchers, advocates, legislators, and medical providers, aimed at improving the lives and outcomes of those affected by cancer in AYAs.

AUTHOR'S DISCLOSURES OF POTENTIAL CONFLICTS OF INTEREST

Closing the Gaps: Progress in the Care of Adolescents and Young Adults With Cancer

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