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Young Adult Cancer Survivors Need Special Support

Jean Rowe, Young Survival Coalition

Jean Rowe, Associate Director of Support Services, Young Survival Coalition

Young adults are at a certain stage of life development when diagnosed with cancer. They may be thinking about career decisions (i.e. do I stay in this job, go back to school or seek something new), where they want to live (e.g. hometown or move to another city), independently living on their own, and deciding what kind of mate they desire. They are not thinking about their lives being turned upside down by a cancer diagnosis.

All too often young adults are told “you’re too young” to have cancer when a concern is raised. This can result in late diagnoses and more advanced disease stage.

Young adults diagnosed with cancer experience interrupted lives. Their careers may be put on hold. They may have to take significant time away from work, which may or may not place their positions in jeopardy. They may have to move back home with their parents, which may involve having to move across the country. They often do not have financial resources (e.g. savings, 401(k)) to address the magnitude of cancer costs. While their peers are going through normal life steps (i.e. going to college, dating, or getting married and having children), young adults with cancer often isolate themselves and feel alone, thinking that their friends and family cannot understand what they are going through.

Anxiety and depression are not uncommon side effects of a cancer diagnosis. Chemotherapy can induce early menopause, a life and health change young women are not meant to experience for another 20 to 30 years. Early menopause impacts sexual libido and causes vaginal dryness. While in treatment and, potentially, for years to come, physical concerns like bone density and cardiac toxicity must be monitored. This could include taking preventative medication post-treatment (e.g. for osteoarthritis).

All of this impacts the young adult’s identity and life as he or she knew it. These side effects can last well past treatment when a young adult “looks fine” to the outside world while, “inside,” he or she is struggling emotionally, physically and existentially. They need and deserve support.

Celebrating its 20th year, the Young Survival Coalition (YSC) is the premier organization dedicated to the critical issues unique to young women diagnosed with breast cancer. YSC offers resources, connections and outreach so women feel supported, empowered and hopeful.

We offer a multitude of wonderful ways to connect and a wealth of resources. A young survivor can connect 1:1, in person and online (both in support group format and through social media). Our national Summit typically hosts 600 young survivors and their loved ones each year. Our educational materials are available for free to download or order in hard copy through our website. Our support and resources are there so that every young woman diagnosed with breast cancer knows that she is not alone at any stage and at any point in her journey. This includes resources for metastatic young survivors whose concerns and needs deserve attention and support.

YSC also supports Co-Survivors (e.g. spouse/partner, family member and friend). Co-Survivors may instinctively place their survivor’s needs before their own. That can come at a cost; their health could be impacted as well. YSC offers support and resources to our Co-Survivor population.

We want to make sure no young adult and their co-survivors face breast cancer alone. YSC is here to help. Please reach out!

About the Author

Jean Rowe is Associate Director of Support Services, Young Survival Coalition (YSC). She joined YSC in 2011 with a background in clinical oncology social work. She is a licensed clinical social worker, a certified oncology social worker and a certified journal therapist. Her focus includes the crafting, piloting and implementing of supportive and educational programming for young breast cancer survivors, co-survivors and health care providers. As a certified journal therapist, Jean crafted an original program addressing re-establishing intimacy after breast cancer as well as continuing education journal writing programs for mental health and nursing professionals regarding compassion, fatigue, and self-care. She holds a master of social work from the University of Georgia and a bachelor of arts from the University of South Carolina. 

Suggested Reading:

Acquati C., Zebrack B.J., Faul A.C., Embry, L, Aguilar, C., Block, R.,…Cole, S. (2017). Sexual functioning among young adult cancer patients: A 2-year longitudinal study. Cancer, 124(2), 398-405.

Adams, E., McCann, L., Armes, J., Richardson, A., Starck, D., Watson, E., & Hubbard, G., (2010). The experiences, needs and concerns of younger women with breast cancer: A meta-ethnography. Psycho-Oncology, 20, 851-861.

Cheung, C.K. & Zebrack, B. (2017). What do adolescents and young adults want from cancer resources? Insights from a Delphi panel of AYA patients. Support Care Cancer, 25(1), 119-126.

D’Agostino, N.M., & Edelstein, K. (2013). Psychosocial challenges and resource needs of young adult cancer survivors: Implications for program development. J Psychosoc Oncol, 31, 585-600.

Zebrack, B.J., Kent, E.E., Keegan, T.H., Kato, I., & Smith, A.W. (2014). Cancer sucks and other ponderings by adolescent and young adult cancer survivors. J Psychosoc Oncol, 32, 1-15.

A Message from Our Sponsor

As the founding sponsor of Real World Health Care, the HealthWell Foundation is committed to helping patients get the medical treatments they need, regardless of their ability to pay. We’ve seen first-hand how financial distress can impact the health and lives of individuals and families. Cancer patients with behavioral health conditions are particularly hard hit; according to the American Society of Clinical Oncology (ASCO), patients with some forms of cancer incur $8,000 more per year in health care costs than cancer patients without behavioral health conditions.

In keeping with our mission, we are now accepting applications for our Cancer-Related Behavioral Health (CRBH) Fund, specifically for treatment-related behavioral health issues in cancer. The Fund provides financial assistance to individuals with a diagnosis of cancer to help with cost-shares (deductibles, coinsurances and copayments) for covered services rendered by behavioral health providers (psychiatrists, psychologists, clinical counselors, and licensed social workers).

We invite readers of Real World Health Care to learn more about our CBRH Fund and how you can support it by visiting www.HealthWellFoundation.org.

Cognitive Behavior Therapy for Teens and Young Adults with Cancer

This week, Real World Health Care focuses on the special behavioral health issues that can impact teens and young adults with cancer. We are delighted to share information on this topic from the Association for Behavioral and Cognitive Therapies, and to feature insights from Tammy A. Schuler, PhD, a Licensed Clinical Psychologist and Director of Outreach and Partnerships for ABCT.

ABCT is a multidisciplinary organization committed to the enhancement of health and well-being by advancing the scientific understanding, assessment, prevention, and treatment of human problems through the global application of behavioral, cognitive and biological evidence-based principles. It seeks to decrease human suffering using science.

Supporting the Cancer Community

Real World Health Care: How does ABCT address the special needs of adolescents and young adults with cancer?

Tammy Schuler

Tammy Schuler, PhD, Director of Outreach and Partnerships, Association for Behavioral and Cognitive Therapies

Tammy Schuler: Adolescents and young adults (AYAs) and their families coping with cancer have a lot to deal with. The AYAs are dealing with a major, life-changing circumstance during a period of their life when they are also dealing with other huge changes and developmental milestones. ABCT provides a variety of information to this patient community on treatment for depression, anxiety, sleep, insomnia and other areas that AYAs may struggle with. We also offer a clinical directory in which people looking for cognitive behavioral treatment can find providers in their area. Some of these providers specialize in working with people and their families who are coping with cancer, and some of them specialize in working with young people coping with a range of concerns.

Reaching Out for Help

RWHC: What advice would you give an AYA or family member who may feel uncomfortable or unsure about reaching out to a cognitive behavior therapist for help?

TS: Normalizing it is important. Many AYAs dealing with cancer experience some sort of cancer-related behavioral health issue. Issues may not happen right away. They may come up at some point during treatment or when they’re recovering from cancer treatment and trying to get back to their lives, and even beyond. In fact, a lot of AYAs report that they experience struggles after cancer treatment is over.

It’s also normal for family members – especially caregivers – to experience a behavioral health concern, at any point after the AYA’s cancer diagnosis.

Behavioral health concerns can range from having more difficulty adjusting to or coping with the cancer than one might expect, to ongoing feelings of sadness, anxiety, worry, panic attacks, persistent insomnia, increased substance use, and other symptoms. If a distressing behavioral health symptom sets in and doesn’t let up, if a behavioral health symptom becomes really disruptive to day-to-day life, or if a person starts worrying that they might hurt or kill themselves, those are signs to reach out to a qualified therapist for help.

It’s perfectly okay to reach out to people who can help, including cognitive behavior therapists, no matter what. Cognitive behavioral therapists are used to working with people dealing with these kinds of concerns; and the sooner someone reaches out, the sooner a plan can be developed to help the person feel better. Be sure to carefully check the credentials of the therapist. They should be licensed to practice in the patient’s state and should be listed as members of professional organizations, such as ABCT or the American Psychological Association.

HealthWell’s Cancer-Related Behavioral Health Fund is a wonderful initiative for insured people who want to reach out to a cognitive behavioral therapist, but who are struggling with finances.

Fast Facts: Adolescents and Young Adults with Cancer

The following information has been excerpted from the full ABCT fact sheet, written by Glynnis McDonnell, Doctoral Candidate in Clinical Psychology at St. John’s University and a Psychology Intern with the University of Tennessee Health Sciences Center & St. Jude Children’s Research Hospital.

A cancer diagnosis can be upsetting for individuals of any age; however, the effects of a cancer diagnosis and treatment may be especially upsetting for people diagnosed as adolescents and young adults (AYAs). This period involves rapid physical and psychosocial development, and a cancer diagnosis can interrupt these developmental processes:

  • Treatment often leads AYAs to take a large amount of time off from school or work, affecting career and education plans.
  • Treatment can make the formation of romantic relationships difficult due to factors such as body image concerns, limitations placed on one’s activities, etc.
  • Treatment can lead to infertility, interfering with the ability to start biological families.
  • A potentially life-threatening illness can be especially startling for AYAs:
    • AYAs likely have a better understanding of the seriousness of their illness than child patients but are often unprepared to process the meaning of a serious disease as effectively as older patients.
    • AYAs are still in the process of developing a stable sense of self. Therefore, diagnosis and treatment of a serious illness during this period could have a different psychological impact than it does for older adults.

There is growing evidence that cognitive behavior therapy (CBT) is an effective treatment for many of the psychological difficulties faced by AYAs. CBT is a form of psychotherapy that draws upon the connections among one’s thoughts, behaviors and emotions. It cannot change the fact that this young person has had to cope with a difficult diagnosis, but it can help ease the related difficult feelings, including worry, sadness and guilt related to the cancer experience. It can also help the AYA process traumatic aspects of the cancer experience.

A Message from Our Sponsor

As the founding sponsor of Real World Health Care, the HealthWell Foundation is committed to helping patients get the medical treatments they need, regardless of their ability to pay. We’ve seen first-hand how financial distress can impact the health and lives of individuals and families. Cancer patients with behavioral health conditions are particularly hard hit; according to the American Society of Clinical Oncology (ASCO), patients with some forms of cancer incur $8,000 more per year in health care costs than cancer patients without behavioral health conditions.

In keeping with our mission, we are now accepting applications for our recently launched Cancer-Related Behavioral Health (CRBH) Fund, specifically for treatment-related behavioral health issues in cancer. The Fund provides financial assistance to individuals with a diagnosis of cancer to help with cost-shares (deductibles, coinsurances and copayments) for covered services rendered by behavioral health providers (psychiatrists, psychologists, clinical counselors, and licensed social workers).

We invite readers of Real World Health Care to learn more about our CRBH Fund and how you can support it by visiting www.HealthWellFoundation.org.

 

 

Implementation of Health Care Law Expanding Coverage to More Young Adults

LJB head shot 03

Linda Barlow

For the first time in nearly a decade, the number of 19-25 year-olds gaining access to health insurance is on the rise, according to the Commonwealth Fund 2012 Biennial Health Insurance Survey. Researchers point to a provision in the 2010 Patient Protection and Affordable Care Act (PPACA or ACA), which allows young adults to stay on their parents’ health insurance until age 26, as a likely cause of this groundbreaking trend.

“The early provisions of the Affordable Care Act are helping young adults gain coverage and improving the affordability of health care during difficult economic times for American families,” said Sara Collins, Ph.D., a Commonwealth Fund vice president and lead author of the Biennial Survey’s report, Insuring the Future: Current Trends in Health Coverage and the Effects of Implementing the Affordable Care Act.

The improvements in young adult health coverage are significant, according to the Biennial Survey:

  • Nearly eight in 10 (79 percent) of Americans ages 19-25 reported that they were insured at the time of the survey in 2012, up from 69 percent in 2010, or a gain in health insurance coverage for an estimated 3.4 million young adults.
  • The share of young adults in this same age group who were uninsured for any time during the year prior to the survey fell from 48 percent in 2010 to 41 percent in 2012 – an estimated decline of 1.9 million, from 13.6 million uninsured young adults in 2010 to 11.7 million in 2012.

Of the estimated 3.1 million young adults who are now covered through the ACA, 60 percent are leveraging it for mental health, substance abuse, or pregnancy treatment, according to a study from the Employee Benefits Research Institute (EBRI). For one large, national employer profiled in the study, the newly-covered young adults used about $2 million in health care services in 2011 – about 0.2 percent of the employer’s total health spending.

Access is a major barrier to care for young adults, who were previously terminated from their parents’ plans when they turned 19. According to the Henry J. Kaiser Family Foundation (KFF), young adults typically face difficulties obtaining their own coverage because they work in entry-level, low-wage or temporary jobs that are less likely to provide health insurance. Lack of insurance makes it harder for young adults to receive adequate medical care –  a problem that plagued one in five young adults before the ACA began to take effect.

“Young adult women have additional health needs and are particularly vulnerable when they are uninsured, as they are at an age when they require reproductive health services,” noted Karyn Schwartz and Tanya Schwartz, authors of KFF’s Issue Paper, How Will Health Reform Impact Young Adults? “Having health insurance and consistent access to the medical system may increase the likelihood that they receive timely pre-natal care if they become pregnant.”

Meanwhile, some skeptics are expressing concerns about key aspects and implications of the Act, from objecting to young single males being required to purchase a plan including maternity benefits and well-baby coverage – to others saying that full implementation of the ACA in 2014 will mean much higher premiums for young adults. Many have challenged these assertions, however, noting that the ACA’s age-based pricing requirements are largely in line with premiums individuals are paying now.

Although the news for young adults is mostly good, the survey also found that 84 million people – nearly half of all working age U.S. adults – went without health insurance in 2012, or faced out-of-pocket costs that were so high relative to their income that they were considered “underinsured.”

The survey did indicate that 87 percent of the 55 million uninsured Americans in 2012 are eligible for subsidized health insurance through the insurance marketplaces or expanded Medicaid under the ACA. Up to 85 percent of the 30 million uninsured adults also might be eligible for either Medicaid or subsidized health insurance plans with reduced out-of-pocket costs.

Click here to learn more about pricing options for young adults seeking health insurance coverage.

Now it’s your turn. Does rollout of the ACA mean more accessible and affordable health insurance coverage, or will it drive up costs, particularly for younger Americans? Get the conversation started.

Categories: Access to Care