Why SeventyK?
There are over 70,000 people aged 15-39 diagnosed with cancer in the U.S. per year. For over two decades there has been little or no improvement in survival in this specific age group.
“Nearly 68,000 people aged 15 to 39 years were diagnosed with cancer in 2002, approximately 8 times more than children under age 15.”1
“…Little or no progress has been seen in the AYA population…among those aged 25 to 35 years, survival has not improved in more than two decades…15-39 year-olds diagnosed with cancer in 1975-1980 had dramatically better survival than most other age groups; however, survival rates for this population have stagnated while survival improvements achieved in younger and older age groups have now-or will soon-eclipse AYAs’ previously superior survival rates.”1
The right to be taken seriously when seeking medical attention to avoid late diagnosis or misdiagnosis, and entitlement to separate and confidential discussions regarding our own care.
Adolescents and young adults may have a higher risk for delay in diagnosis or misdiagnosis, which can affect survival outcomes.
“Because of psychological and social factors in adolescents and young adults, patients in this age range may be at a higher risk for delay in diagnosis, which in turn may impact cancer survival.”2
“Among the variety of explanations for young adults delaying to seek medical care and obtain a correct diagnosis are their sense of invincibility, lack of routine medical care, physicians poorly trained or unwilling to care for adolescents, under-recognition by medical professionals of cancer or its symptoms and signs in the age group, and lack of health insurance.”2
“…AYA cancer survivors who describe misdiagnosis of their cancer symptoms and the months-in some cases years-that elapsed before a correct diagnosis of cancer was made…Both provider and patient factors may contribute to late diagnosis. Health care provider’s level of suspicion of cancer as a cause of symptoms in this population generally is low, contributing to delayed diagnosis of primary cancers, second cancers, and late effects due to cancer treatment. American and Canadian studies of pediatric and adolescent cancer patients have shown that the number of days from symptom onset to diagnosis increases with patient age, as much as double the number of days for older adolescents compared with patients 14 and under.”2
The right to affordable health insurance, as well as early detection tests unhindered by insurance or socioeconomic status.
The lack of insurance within the adolescent and young adult population can influence preventative interventions and quality of care.
“…Data from the University of Texas MD Anderson Cancer Center indicate that among 15-to-29-year-olds with newly diagnosed, previously untreated cancer, the lag time to diagnosis was correlated with the quality of health insurance. Those with public or no health insurance had statistically longer lag times in most of the cancers evaluated.”
“Young adults have the highest percentage of uninsured or underinsured individuals of any age group. In 2004, 13.7 million young adults aged 19 to 29 lacked coverage, an increase of 2.5 million since 2000. Lack of insurance is a major cause of access limitations in this population.” 1
“Unless disabled, young adults are rarely covered by their parent’s insurance policies after age 23, and many policies cease covering dependents at age 19 of when they are no longer-full time students. Medicaid and its state child health insurance component, SCHIP, also cease coverage at age 19. Many of the jobs held by AYAs offer either limited of no health benefits….Even those with relatively comprehensive insurance may be liable for substantial out-of-pocket treatment and non-treatment costs and may forgo recommended follow-up testing due to cost.” 1
“Where as many cancers that develop later on in life are due to health risk behaviors (tobacco use, poor diet and physical inactivity leading to obesity, sexually transmitted infections, etc.) and environmental carcinogens, cancer that arise in young adults are rarely preventable. Screening and the earliest possible detection of cancer in young adults are, therefore, critical.” 2
The right to be offered fertility preservation as well as current information and research regarding ongoing and potentially lifelong effects of cancer treatment that would affect our fertility.
Fertility is an important issue often times over looked by health care providers and thus can affect psychosocial aspects of adolescent and young adult lives.
“Partner relationships are tested by the strain of the cancer diagnosis and its therapy. Whether a partner stays in the relationship is challenged by fear of relapse or infertility and may be influenced unduly in either direction by guilt or sympathy.” 2
“Those contemplating having children may fear passing on a genetic predisposition to cancer.” 2
“Fertility is a primary concern to many adolescent and young adult cancer survivors. Yet, most young adult cancer survivors do not recall an adequate discussion with their physician at the initiation of therapy of the risks of infertility or methods to decrease the risks.” 2
“Options for preservation of fertility should be routinely discussed with patients prior to initiating any treatment. For males, sperm banking is the main method for preservation of fertility and should be done prior to the initiation of treatment. Fertility preservation for females is not as straightforward and needs to be customized based on the anticipated treatments. Keys to successful preservation of fertility are to mitigate the risks whenever possible and to initiate planning for fertility treatments as soon as possible in order to prevent unnecessary delays in cancer treatment.” 4
The right to be informed about available clinical trials and given reasonable access to them.
"We've known for several years that older adolescents and young adults don't have the same clinical trial rate as younger patients but didn't know all of the reasons why.” -Peter Shaw, Director of the Adolescent and Young Adult Oncology Program at Children's Hospital of Pittsburgh
“Cancer patients between age 15 to 35 years have had the lowest proportion of patients accrued to clinical trials (figure 5).” “…90% of children younger than age 15 years with cancer are managed at institutions that participate in NCI-sponsored clinical trials, and most are entered onto clinical trials.” “In contrast, only 20% to 35% of 15-to-19-year olds with cancer are seen at such institutions, and only approximately 10% are entered into a clinical trial. Among 20-to-29-year-olds, the particiapation rate is even lower, with fewer than 10% being seen at member institutions of the cooperative groups, and only approximately 1%...entering clinical trials of the pediatric or adult cooperative groups. Among older patients, the trial-participation rate is higher, estimated between 3% to 5%. The reasons for the gap include lack of available trials, lack of informing the young adult population about clinical trials, inability or reluctance of the patient to participate in the trial, and financial limitations be both the patient/family and care provider.” 2
“Once diagnosed with cancer, suggest that young adults ask about clinical trials. If none are available on site, help them find centers that participate in clinical trials suitable for their age.” 2
“One enrolled on a clinical trials, the adolescent and young adult cancer patient needs understanding and support in order to best adhere to the trial’s requisites.” 2
“The NCI-sponsored pediatric and adult cooperative groups have launched a national initiative to improve the accrual of adolescents and young adults with cancer into clinical trials.” 2
The right to untethered access to adolescent and young adult cancer specialists and, when requested, a second opinion regardless of insurance or geographic location.
The etiology of cancer in adolescent and young adults are not fully understood, as a result, there should be an open access to physicians who are the most familiar with AYA cancer.
“Encourage and assist young adults to seek care at a comprehensive health care center.” 2
“AYAs with first symptoms of cancer may see a variety of health care providers…As a result, referral patterns for AYAs with suspected or diagnosed cancers vary widely. AYAs with cancer too frequently fall into a “no man’s land” between pediatric and adult oncology.” 1
“Practical and financial barriers include lack of adequate insurance decreases therapeutic options for patients, e.g. second opinions, choice of specialists, access to expensive treatments and medication.” 1
“As the age group most likely to be uninsured or underinsured, the lack of or insufficient medical coverage is a significant impediment to AYAs developing a primary care relationship, obtaining appropriated referrals and second opinions, and receiving the best possible care.” 1
The right to access a social worker or caseworker who is well-versed in adolescent and young adult cancer specifics.
The spectrum of adolescent and young adult cancer is a unique and difficult process to navigate through and professional assistance throughout is extremely crucial.
“Medical professionals are often poorly equipped to deal with the psychosocial challenges within the age group and are often stymied by the need in these patients to increase compliance, reduce stress, and improve the quality of life during cancer therapy.” 2
“Financial assistance for the AYA cancer survivors needs to be integrated into a survivorship plan. Securing resources for health care funding, insurance, debt relief, and disability income for this patient population requires a coordinated effort from social workers to help survivors navigate the maze of paperwork and regulations they face.” 4
“Core competency curricula must be developed and incorporated into appropriate initial training and continuing education programs to ensure that all providers who work with adolescents and young adults…have the requisite understanding of characteristics unique to or of particular importance to AYAs.” 1
The right to “generationally applicable” psychosocial support.
Psychosocial needs of adolescent and young adults are unique and often times misunderstood in comparison to other age groups.
“Perhaps the greatest difference between patients in the adolescent/early adulthood range and other ages is in supportive care, particularly psychosocial care. Adolescents and young adults have special needs that are unique, broader in scope, and often more intense than those at any other time in life.” 2
“Cancer therapy causes practical problems in social arenas. The dependence of adolescents and young adult patients on peer-group approval poses greater challenges when confronted with a diagnosis of cancer. Self-image, a critical determinant during this phase of life, is comprised by many of the adverse effects of therapy, such as alopecia, weight gain or loss…susceptibility to infection and need for isolation, impaired sexuality…and mutilating surgery.” 2
The right to have our insurance and position as a student or employee protected by law while dealing with our cancer in order to minimize discrimination.
The diagnosis of cancer is not avoidable. Adolescents and young adults should be able to maintain the social aspects of their lives while dealing with their cancer in order to keep health insurance provided as well as their psychological bearings.
“The dependence of adolescents and young adult patients on peer-group approval poses greater challenges when confronted with a diagnosis of cancer…Other challenges include the loss of time from school, work, and community and the financial hardships that occur at an age when economic independence from family is an objective.” 2
“AYA’s represent a particularly vulnerable segment of the population with regard to the financial ramifications of a cancer diagnosis. AYA patients, especially the young adult segment are more likely than adult patients to be uninsured, or they may be in a state of transition between their parent’s insurance coverage and their own. It can be a challenge for young adult cancer survivors to find health insurance as they are typically considered high-risk candidates.” 4
“Obtaining insurance is more difficult for those whose cancer diagnosis was more recent because of their potentially higher risk of recurrence. They many not be able to absorb the high costs of treatment since many are transitioning off their parent’s health insurance and may not have adequate student health or work insurance in place at the time of diagnosis. Young adults who are the primary wage earners in a family without adequate disability coverage face the prospect of bankruptcy due to medical costs and lost income.” 4
The right to clear explanations regarding the long-term side effects of our disease and its treatment, and to be offered all available and applicable physical reconstruction and rehabilitation options.
A through understanding of side effects and rehabilitation options available play an important role in psychosocial issues that face the adolescent and young adult population.
“Significant advances have been made in the use of combined-modality treatment for limb=sparing approaches in extremity sarcomas. While amputation was the only option in the past, many patients are now able to retain their affected limbs. Limb-sparing surgery offers a better cosmetic and functional outcome without compromising survival. However, both short- and long-term sequelae warrant surveillance.” 4
“Management…long-term effects requires a multidisciplinary approach to maximize functional ability and address the psychosocial problems…Continued physical and occupational therapy is important to assist survivors with functional limitations. Continued assessment is required as their physical statures or activities change over time.” 4
The right to have all of our treatment options explained to us in full detail, to have our questions answered, and to receive clarification when requested so that we can be an active part of our own care.
The highest quality of care results from a strong relationship and mutual respect between physicians and patients.
“The current limited research suggests that, among US populations, the primary barriers to communication include physician knowledge and attitudes about fertility preservation, physician skill related to discussing psychosocial issues about cancer survivorship and financial constraints.” 3
“Health care requires planning and organization, as well as trust in confidentiality. Trust is essential in being able to negotiate the system and being able to achieve the best care. If young adults don’t trust the health care system, they will be less likely to learn how to navigate the system.” 2
Links and References
1. Adolescent and Young Adult Oncology Progress Review Group. Closing the Gap: Research and Care Imperatives for Adolescents and Young Adults with Cancer. Department of Health and Human Services, National Institutes of Health, National Cancer Institute, and the LiveStrong Young Adult Alliance. Available at: (link). Accessed January 3, 2008.
2. Bleyer A. Young Adult Oncology: The Patients and Their Survival Challenges. CA Cancer J Clin. 2007; 57: 242-255. (link)
3. Quinn G, Vadaparampil S, et al. Patient-physician communication barriers regarding fertility preservation among newly diagnosed cancer patients. Social Science & Medicine 2007; 66:784-789. (link)
4. Soliman H, V.Agresta S, Current Issues in Adolescent and Young Adult Cancer Survivorship. Cancer Control 2008; 15:55-62. (link)