Cancer Survivors' Use of Fertility Preservation.

BACKGROUND: Some cancer diagnoses and treatments can place patients at risk for infertility. The American Society of Clinical Oncology recommends that health care providers address the possibility of infertility with cancer patients who are treated during their reproductive years; however, research suggests that many providers do not disclose the risk of infertility to their patients. This study examines adolescent/young adult (AYA) cancer survivors' use of and costs for fertility preservation (FP) over time. METHODS: The study included 550 AYA cancer survivors diagnosed at the ages of 15 and 39 years between 2006 and 2012. Logistic regression analyses and chi-squared tests were conducted to identify factors associated with FP use, barriers, and expenses. RESULTS: One hundred eighty two (33%) of the AYA survivors took steps to preserve their fertility. Men, survivors who did not have children, those who received chemotherapy, and those who lived in the Northeast (vs. the South) were more likely to have FP. The majority of men using FP used sperm banking (99%), whereas women used egg preservation (40%), embryo preservation (40%), and other methods (37%). On average, women paid more for FP than men (p < 0.001); however, costs for women significantly declined over time (p = 0.021). CONCLUSIONS: The study points to other areas for research in women's health, including the development of educational interventions with patients and providers to reduce gender disparities in FP and ensure timely patient-provider discussions related to fertility issues.

International Framework for Cancer Patient Advocacy: Empowering Organizations and Patients to Create a National Call to Action on Cancer.

PURPOSE: With the rate of cancer and other noncommunicable diseases (NCDs) growing globally, cancer prevention and control efforts are critical internationally. Moreover, since the 2011 United Nations High-Level Meeting on NCDs, the international health and development community has shifted its awareness to include NCDs as a global health priority, especially in developing countries where mortality rates are disproportionately high. Simultaneously, with the dissemination of the World Cancer Declaration and the evolution of cancer control policies, the international cancer community has recognized the value of engaging patients in reducing the global cancer burden. Cancer advocacy programs that involve patients, survivors, and nongovernmental organizations (NGOs) have increasing opportunities for global impact. METHODS: We developed a framework over 4 years through implementation of two pilot projects. We created a series of trainings and tools to build the capacity of local NGOs and patients to plan and implement a forum for patients with cancer and to create and disseminate a national call to action. The framework was piloted in South Africa from 2009 to 2011 and Japan from 2012 to 2014, and results were measured through postproject surveys completed by members of the collaborative working group and interviews with the in-country partner. RESULTS: The framework is globally relevant and could be adapted and implemented in low- and middle-income countries to amplify patient voices in the policymaking process, increase grassroots mobilization, and improve health systems and infrastructure through addressing patient needs. CONCLUSION: With the dominant paradigm of global health in developing countries-which has previously focused on HIV/AIDS, maternal and child health, tuberculosis, and malaria-shifting to adapt to the burgeoning NCD burden, effective patient-centered advocacy frameworks are critical to the success of NCD control.

Awareness and advocacy for adolescents and young adults with cancer.

Increasing the awareness of the clinical and psychosocial needs that are particular to adolescents and young adults (AYA) was a top priority, as was strengthening advocacy efforts to empower and support this group. To date, AYA advocates had some success in generating public awareness and building a solid clinical justification for increased focus on this population. It had been established that the economic burden of their mortality was significant, their cancers were unusual, their medical care was often inadequate, and their outcomes for many cancers had not improved in the past 3 decades. As the awareness and advocacy campaign continued to grow and evolve across the globe, it was an important goal to integrate the efforts of all stakeholders to ensure that it progressed with a single, consensual, focused message identifying a common priority for action. By coordinating the efforts of the scientific, medical, and advocacy communities, it was possible to amplify their separate efforts and activities and more efficiently achieve large-scale change in the world of AYA oncology.

The International Charter of Rights for Young People with Cancer.

The International Charter of Rights for Young People with Cancer is a global internet-based initiative set up by five charities from across the world. They are calling on the international community to recognize that access to quality cancer care is a right, not a privilege, and to improve the services and support that young people diagnosed with cancer receive, regardless of geographical location.

Advocacy and adolescent/young adult cancer survivors.

Strong advocacy efforts are vital to ensuring that the unique medical, psychosocial, support and educational needs of teenagers/adolescents and young adults living with cancer are met. Advocacy groups can help bring individuals interested in change together, and provide coordinated education and support services as well as policy analysis and response. Recent improvements in services and treatment indicate the success of organised and professional advocacy in addressing the needs of teenage/adolescent and young adult survivors. The advocacy community can continue to make great advances by joining together to support worldwide recognition of the unique needs of this population, the development of specialist facilities for teenagers/adolescents and young adults, increased awareness of cancer in this population to combat delayed diagnosis and improve access and quality of care, and alleviating the challenges of working with a multidisciplinary health care team.