{Background & Statistics}

In 2006, for the first time in recorded history, the number of annual cancer deaths in the United States decreased. Death rates from cancer have been declining since 1993, but this is the first decline in the actual number of cancer deaths in over 70 years.

The Journal of the National Cancer Institute credits progress in prevention, early detection, and treatment for the declines in death rates.  However, it is critical to note that not all segments of the U.S. population have benefited equally from these advances. The President’s Cancer Panel reports that adolescents and young adults have been studied far less than younger and older age groups, and their healthcare and survivorship needs are poorly understood and poorly served.

Each year, more than 70,000 young adults are diagnosed with cancer in the United States. In fact, a cancer diagnosis between the ages of 15 and 40 is nearly eight times more common than such a diagnosis during the first 15 years of life (Figure 1).

 As mentioned above, not all population segments have seen improvements in survival rates over time. Young adults are one of the segments that encounter an unequal burden of cancer in spite of advances in treatment, detection, and prevention.

The strides that have served to make cancer a chronic disease for many have generally bypassed young adults. Today, cancer is the leading disease killer among 20- to 39-year olds. While both younger and older patients are seeing improvements in survival rates, the rates for young adults have improved far less, and the gap is worsening. As a result of this lack of progress in survival improvement since 1975, young adults diagnosed with cancer today have a worse prognosis than those diagnosed 25 years ago (Figure 2).

Several clinical and social factors contribute to this lack of progress.

• Delayed diagnosis. This is a result of a combination of factors, including low clinical suspicion among medical professionals, feelings of invincibility among young adults, and unreliable access to medical care.
   
• Lack of (adequate) health insurance. Young adults are the highest uninsured and underinsured in the U.S. (Figure 3). In a 2006 cover story, New York Magazine reported on these data, noting that young adults are the fastest-growing segment of America’s uninsured population. They attributed this lack of coverage to the fact that employer health coverage is not necessarily standard practice in modern times and that “For the young who don’t luck into a job that offers coverage, a certain outlook becomes inevitable: Premiums are a fortune, you can barely pay your rent, you rarely need a doctor, you decide to gamble.”  This lack of adequate coverage may result in lost lives, decreased economic productivity, underutilization of essential services, and inefficient and poorly coordinated care.  As a result of being uninsured, young adults may not feel empowered to seek care, may not be financially capable of paying the bills that may be incurred through medical care, and may not have regular access to a general practitioner. All of this contributes to the staggering rates of delayed diagnosis in this population.
   
• Clinical trial participation. Young adults have the lowest participation rate in clinical trials of any age group (Figure 4).  In addition to contributing to medical research, participants in clinical trials gain access to new research treatments before they are widely available and are eligible to obtain expert medical care at leading healthcare facilities during the trial.
   
• Biological differences. Cancer in young adults often presents quite differently than in other age groups. It is suspected that the distinctive biology of this age group results in unique histological subtypes and rare hereditary tumors, in addition to the role hormonal differences may play in tumor development and biology. In addition, exposure to environmental risks, like sun and the Human Papilloma Virus (HPV), are particularly prevalent in this age group.
   
• Treatment. There remains an uncertainty about where to treat young adults—pediatric or adult units? No medical profession owns this issue, and that results in a lack of professional mentors and an official discipline. This is one of the greatest contributing factors to young adults falling through the cracks in the system. Additionally, there are no established treatment protocols for this age group and a lot of mystery still surrounds issues such as toxicity tolerance and how that impacts treatment for this population.
   
• Historically decentralized advocacy efforts. There are a handful of advocacy organizations that are dedicated to the cause of supporting and connecting young adults affected by cancer. However, until recently, advocacy efforts existed largely in silos and no single organization had the momentum to affect the change that is necessary.

Cancer among young adults is an important problem that has long gone unrecognized and understudied. This lack of support and medical and scientific focus has had severe consequences.

{Advancing Change}

The UCF is part of a cohesive effort by interested parties nationwide to address the medical and psychosocial needs of young adults with cancer. This effort could make up for lost ground by raising awareness of a group that deserves a chance at the progress achieved for their older and younger counterparts.

To address the cancer disparities that exist among this population, the National Cancer Institute (NCI) and the Lance Armstrong Foundation’s (LAF) LIVESTRONG™ Young Adult Alliance (LSYAA) partnered to establish the Adolescent and Young Adult Oncology (AYAO) Progress Review Group (PRG).

The National Cancer Institute is a component of the National Institutes of Health (NIH), one of eight agencies that compose the Public Health Service (PHS) in the Department of Health and Human Services (DHHS). The NCI, established under the National Cancer Institute Act of 1937, is the Federal Government's principal agency for cancer research and training. The National Cancer Institute coordinates the National Cancer Program, which conducts and supports research, training, health information dissemination, and other programs with respect to the cause, diagnosis, prevention, and treatment of cancer, rehabilitation from cancer, and the continuing care of cancer patients and the families of cancer patients.

The PRG process is considered to be the “gold standard” for Federal scientific strategic planning. PRGs have three phases (Recommendation, Implementation, and Reporting) and are used to assess the state of the science for particular diseases or populations, identify gaps and resource needs, and generate recommendations for future research programs and policies. 

The first phase of the AYAO PRG resulted in five comprehensive recommendations that established the scientific foundation to support changes in policies and research that impact adolescents and young adults with cancer. The Implementation phase resulted in the development of an Implementation Plan that provides detailed, actionable strategies for achieving the AYAO PRG consensus recommendations. This plan provides a review of recent, relevant scientific research for each PRG recommendation; for each related strategy, the plan lists the potential partners, resources, and timeline for implementation. The strategies described in this report suggest a concrete plan with true potential to improve outcomes for adolescents and young adults with cancer. 

The Ulman Cancer Fund for Young Adults has been a vital part of the PRG process. Doug Ulman served on the leadership team of the PRG and Brock Yetso is a member of the AYAO PRG. Both attended and participated in the Recommendation Roundtable Meeting in Denver, Colorado, in 2006. Elizabeth Saylor joined Doug and Brock at the Implementation Meeting in Austin, Texas, later that year. During the Implementation Meeting, Brock Yetso co-chaired the Patient Navigation/Health Coaches Breakout Group. Additionally, Brock, Doug, and Elizabeth are all involved in implementing the strategies developed at that meeting through their participation in the LIVESTRONG Young Adult Alliance.

The LIVESTRONG Young Adult Alliance is a program of the Lance Armstrong Foundation, which believes that unity is strength, knowledge is power, and attitude is everything, and is leading a coordinated national effort to address the factors that contribute to the unequal burden of cancer experienced by young adults.