The National Children’s Cancer Society
The National Children’s Cancer Society Highlights Long-Term Health Care Needs for National Cancer Survivors Day
To highlight National Cancer Survivors Day coming up on June 5, NCCS is calling attention to a critical issue facing survivors of childhood cancers: the importance of taking over the management of their healthcare as they move into adulthood.
For young adults whose parents have overseen every aspect of their pediatric cancer treatment and recovery during childhood, finding doctors to properly care for their ongoing health needs as they move on to college and beyond is challenging.
“We frequently talk with pediatric cancer survivors who ask us for help finding doctors who understand their needs and can properly manage their ongoing health care issues,” said Pam Gabris, director of the Beyond The Cure program at the NCCS. Beyond the Cure prepares survivors and their families for life after cancer by educating survivors through an extensive web-based information center, conferences and free publications so they can gain a better understanding of the late effects of their treatment.
“Survivors of childhood cancer have very specific needs,” added Gabris. “Most survivors have a high risk of medical late effects following cancer treatment, yet many do not receive screenings for late effects or long-term follow-up care. And those who do often struggle to identify the best place to get that care.” The NCCS offers a Late Effects After Treatment Tool that give survivors a personalized assessment of their potential late effects based on their diagnosis and treatment. Because it is challenging to find doctors who understand late effects, this is valuable information so survivors can advocate for optimum care.
Pediatric cancer survivors also are at higher risk for second cancers, heart disease, body weight issues and psychosocial disorders, further necessitating the need for regular screenings and health monitoring.
National Cancer Survivors Day is an annual celebration that is held in hundreds of communities nationwide and around the world on the first Sunday in June. It is designated to celebrate those who have survived, inspire individuals recently diagnosed, provide support for families and outreach to the community. The day provides an opportunity for all people living with a history of cancer – including America’s more than 14.5 million cancer survivors – to connect with each other, celebrate milestones and recognize those who have supported them. It also is a day to draw attention to the ongoing challenges of cancer survivorship in order to promote more resources, research, and survivor-friendly legislation to improve cancer survivors’ quality of life.
The National Cancer Survivors Day Foundation, Inc., identifies a number of challenges that cancer survivors may face numerous during and after treatment:
- Limited access to cancer specialists and promising new treatments
- Denial of health insurance and life insurance coverage
- Difficulty finding jobs
- Economic burdens due to mounting medical expenses, lost wages, and reduced productivity
Children’s oncology hospitals now routinely educate families about late effects, a term used for the long-term medical, emotional and cognitive problems faced by many childhood cancer survivors. Some health centers are now going beyond education to also create survivor clinics specifically to help young adults keep careful records and manage their regular screenings once they are out from under their parents’ protective wings. One of those is Children’s Healthcare of Atlanta.
“We expect 80 percent of children are going to be long-term survivors, so we hope 80 percent of the kids will eventually come to the survivor clinic,” reported Dr. Lillian Meacham, a pediatric endocrinologist, professor of pediatrics at Emory University, and chair of the Survivor Program at the Aflac Cancer and Blood Disorder Center at Children’s Healthcare.
Nonprofits also are continually improving services to survivors, said Gabris. The NCCS, for example, not only provides one-on-one support for survivors but also maintains a list of long-term follow-up clinics and offers free publications about surviving childhood cancer. Survivors also can find information about employment and health insurance on the NCCS website.
The ultimate goal, said Gabris, is for everyone who works with childhood cancer patients and survivors to provide a nationwide network of survivor care professionals. “We want all survivors to have easy access to appropriate long-term healthcare for their specific post-cancer needs.”
The mission of The National Children’s Cancer Society is to provide emotional, financial and educational support to children with cancer, their families and survivors. To learn more about the NCCS and its support services, visit https://thenccs.org/. The National Children’s Cancer Society is a 501C(3) organization that has provided more than $62 million in direct financial assistance to more than 38,000 children with cancer. To contact the NCCS, call (314) 241-1600. You can also visit the NCCS on Facebook at https://www.facebook.com/thenccs.