1. Health Care Self-Management (Provider Version) Late Effects of Treatment for Childhood, Adolescent and Young Adult (AYA) Cancers Supported by a grant from the American Society of Hematology.

2. Learning Objectives Models of survivorship care Importance of health care transition for AYA survivors Role of primary care providers INTERMISSION Explore the economics of AYA health care Review health insurance options Know laws and resources Discover websites and other resources

3. Case A 19 year old young lady with a history of leukemia has been off treatment for 5 years and feels that she is doing very well. She has not seen a doctor aside from her pediatric oncologist since her original diagnosis many years ago. She lives by herself, two hours away from the center where she was treated. She receives little financial support from her parents. She wants to go back to college but is worried that without a job she will have no insurance or income. She is sexually active and a smoker. She wants to have children someday, just not now, but doesn’t know if she can get pregnant.

4. Outline The importance of health care transition Models of health care delivery What AYA survivors need to know Role of different health care providers Barriers to health care Resources References

5. Transition of Care Parent-directed care  self-directed care Pediatric-based health care  adult-based health care Patient “Activation” Important for patients starting out in the adult health care system, too

6. AYA Cancer Survivors: The Scope > 10,000 children/adolescents diagnosed with cancer / year > 21,000 adolescents/young adults with new diagnoses / year Cure rate for AYA cancer survivors > 70% > 330,000 cancer survivors in the United States The population of survivors is growing!

7. Barriers to health management Developmental challenges Psychological challenges Practical challenges Structural challenges

8. Models of health care delivery Comfort Model Other models Integrated approaches: community or academic based Goals: increased self-management, improved survivorship health care delivery, enhanced quality of life

10. Roles of different providers Yearly or every other year visits Survivors (Late Effects) clinics Referrals to subspecialists, prn Routine maintenance and preventive care Screening Counseling about high risk behaviors

11. Roles of different providers (2) Obtain treatment summaries Review and update summaries Discuss test results and recommendations Plan future visits Communicate with other providers Clinic contact information

12. The importance of health literacy General literacy and health literacy Try not to make assumptions Offer information in other languages Make use of interpreters Review prescriptions and ask to see medication bottles Encourage patients to learn how to read and write English

13. Financial Literacy: general principles Financial health impacts general health Keeping careful records Securely storing credit cards and contact numbers Understanding expenses (direct and indirect) Knowing sources of income Opening savings and checking bank accounts What does insurance cover?

14. Financial health in the clinic Using the clinic appropriately Understanding clinic visit costs Appointments that don’t conflict with school or work Generic prescriptions Charity care Reimbursement denials

15. Intermission

16. Insurance for AYA survivors Private insurance –Individual plans –Employee group plans Public insurance –State based medical assistance Self-pay: a red flag Understanding legal rights

17. Private Insurance Individual policy: –Through college or graduate school –Through work COBRA

18. Public Insurance Options North Carolina State Insurance: CONSUMER HOTLINE: 1-800-546-5664 ; h ttp://www.ncdoi.com/ER/ConsumerInfo/er_consumer_counseling.a sp CONSUMER HOTLINE Medical Assistance Changing by the day!

19. What is “COBRA”? COBRA: The Consolidated Omnibus Budget Reconciliation Act Protection of employees who have been let go Costs similar to employees’ group premium Must notify within 60 days Ways that AYA cancer survivors can obtain COBRA insurance

20. HIPAA and other resources HIPAA: The Health Insurance Portability and Accountability Act Comprehensive coverage for preexisting conditions Group health plans cannot charge more The public insurance option Other resources for survivors with insurance issues

21. Importance of Life Transitions Starting school again Looking for or starting a new job Moving to a different state Getting married Having children or other dependents Renting or buying a new home Going to a new doctor, dentist or clinic

22. www.curesearch.org –The Children’s Oncology Group Long Term Follow-up Guidelines include a section entitled “Educational Issues Following Treatment for Childhood Cancer” www.nccanceradvisory.com –The North Carolina Cancer Advisory Commission answers questions on line and by phone. www.curetoday.com –This website, in association with the American Cancer Society, offers an annual update of resources for patients at various stages of the cancer journey, including survivorship. gpm@rivnet.net, (800) 998-9938gpm@rivnet.net –The Children’s Cancer Ombudsman Program (Grace Monaco) answers questions by phone or email about a range of issues including finances faced by childhood and adult cancer survivors. Other Resources