1. Patient Advocacy: Issues & Answers for CF © Presented by This Web cast is supported by an unrestricted educational grant from Genentech, Inc.

2. Patient Advocacy: Issues & Answers for CF © Beth Sufian, J.D. Sufian & Passamano, L.L.P. & Suzanne Cumming, R.N., B.S.N. Baylor Adult CF Care Center Houston, Texas

3. If You Do Not Know Your Legal Rights... Can limit access to care which Impacts health

4. Health Insurance Available at CF Care Center or www.cff.org www.cff.org

5. Health Insurance Coverage Best way is as a benefit of employment 85% of people in the U.S. have health insurance through work Employer-based policy cannot exclude person because of health Low wage jobs often offer insurance Federal government

6. Key Insurance Issues Health Insurance Portability Accountability Act (HIPAA)  Applies to group policies  Time limit on pre-existing condition  Creditable Coverage  No pre-existing condition wait if there has been less than a 63 day break in coverage

7. HIPAA - Group Coverage Group policy for businesses of 2-50 employees regardless of health Must be a legitimate business Employees can be related If a person has a medical condition insurance company can charge higher premiums Can raise rates on second and following years

8. Private Health Insurance Know your policy  Highlight CF related sections, e.g., prescription drug coverage Policy may change each year Keep good records, e.g., clinic visits, treatments, drugs  Keep and review bills & forms  Keep notes of conversations with insurance company

9. Appeal A Denial of Coverage Timely appeal  Find out why coverage denied  Find out how to appeal Documentation from CF doctor of medical necessity Pick battles Usually have two chances

10. COBRA - Consolidated Omnibus Budget Reconciliation Act Extension of health insurance  Job termination or layoff - 18 months  Death of covered employee – 36 months  Divorce or separation - 36 months  Become eligible for SSDI (Social Security Disability Insurance) - 29 months  Child reaches limiting age - 36 months

11. COBRA Application Employers with 20 or more employees Former employee required to pay full monthly premium plus 2% Save money for COBRA If employer cancels insurance for all employees, then COBRA coverage ends

12. Transition to Adulthood Changes from dependent on parent’s policy to having own insurance Dependents will reach limiting age on policy  Limiting age – age on policy when coverage of dependent ends COBRA extension for 36 months when child reaches limiting age

13. Continuation of Coverage – State Law Requires continuation of dependants insurance after reaching a policy’s limiting age Child must be incapable of self-support due to a physical or mental condition Have form completed by CF doctor

14. Continuation of Coverage Assess ability to self support before end coverage on parents’ policy It may be better to start by working part-time to see if can work AND maintain health CANNOT go back on parents’ health insurance if young adult discovers he/she is unable to support self

15. Continuation of Coverage States that do not have a law for continuation of coverage:  Alabama  Alaska  DC  Kansas  Maine  Oklahoma  Oregon

16. CF Care Center Help Tell your CF center if you are having trouble with insurance May know of other programs Can provide...  Information for continuation of coverage  Statements of medical necessity for coverage of medical treatments and drugs

17. Government Programs

18. May be programs that provide benefits to people with CF Having a diagnosis of CF does NOT automatically qualify a person for benefits

19. SSI - Supplemental Security Income Must meet both low income and medical requirements Receive monthly benefit  Some states add money to federal benefit so amounts may differ by state Eligible for Medicaid coverage upon approval of application

20. Low Income Requirements Low Income Requirements Under age 18...  Parents must meet low income guidelines Over age 18...  If living with someone (e.g., parent) household income of everyone will be considered UNLESS there is a written agreement for SSI recipient to pay their portion of household expenses

21. SSDI - Social Security Disability Income Work requirements  Employed & paid Social Security taxes Medical requirements Monthly benefit based on amount of Social Security taxes paid Qualify for Medicare coverage 29 months after considered disabled Need COBRA to extend coverage

22. Medical Requirements – within Last 12 Months Low pulmonary function (PFT)  FEV 1 based on height Hospitalizations - 3 in last 12 months Treatment of respiratory infections - IV or Inhaled antibiotics – at least once every 6 months with in the last year

23. Medical Records Evidence 12 month records of...  PFT reports (lung function)  Sputum culture reports  Clinic notes  Letter from doctor  Discharge summaries if hospitalized

24. Social Security Application On-line or phone – www.ssa.org or 800-772-1213www.ssa.org Letter from doctor Keep copies of records & application Have 60 days from receipt of denial to appeal

25. CF Care Center Help Give accurate information about your health status...  Medical record MUST reflect health status Center assistance...  How to get started  Assessment of meeting medical requirements  Getting medical record copies  Letter from doctor

26. Education Available at CF Care Center or www.cff.org www.cff.org

27. Education Key to future employment opportunities Important regardless of disease severity Laws to help child get appropriate education without jeopardizing health

28. IDEA - Individuals with Disabilities Education Act Applies to public primary and secondary schools All children have the right to an appropriate education School must identify special educational needs of student  Parent can request assessment

29. IEP - Individual Education Plan Letter from doctor explaining CF and medical needs Right to have a mediation or fair hearing if requests are denied

30. IEP - CF Issues Potential changes to include in plan, e.g., modifications...  Taking medications at school  Providing school work &/or possible instruction  Arriving later than others  Doing treatments during school day  Not being outdoors in extreme heat or cold

31. Rehabilitation Act of 1973, Section 504 Students attending any school that receives federal funds are protected from discrimination Requires plan for modifications Gives same protections as IDEA

32. Vocational Rehabilitation Act Assists with job placement May provide funding for state or community college/university Can appeal if denied services Vocational Rehab services in major cities

33. CF Care Center Help CF center can...  Provide documentation of student’s needs  Educate schools &/or vocational rehab services about CF  Speak with school about CF and importance of modifications  Provide letter addressing medical necessity of modifications

34. Employment Available at CF Care Center or www.cff.org www.cff.org

35. Employment Laws Protecting Employees with Disabilities Rehabilitation Act of 1973 – applies to federal employees or employers who receive federal funds Americans with Disabilities Act (ADA) – applies to employers with 15 or more employees

36. Protections Under ADA No pre-employment medical questions Telling CF diagnosis is optional Cannot be fired simply for having CF Reasonable accommodations e.g., later start time, no smoking, eating at desk, etc.

37. Family & Medical Leave Act (FMLA) Employer has 50 or more employees 12 weeks unpaid leave to care for self, child, parents or spouse Must have worked for 1 year Must have worked a minimum of 1250 hours in last 12 months

38. Employment Choices Guiding principals for employment:  Protect access to health insurance through employment  Chose employers covered by civil rights and employment laws

39. Employment Choices Guiding principals for career or employment:  Physical activity requirements  Risk of infection  Work time, flex vs. structured  Location of work, i.e. indoors vs. outdoors  Flexible to working at home or going part-time

40. CF Care Center Help Discuss with CF care team...  Career options  Potential employment opportunities  Possible health concerns related to job  Discuss issues related to ability to work

41. Presented by This Web cast is supported by an unrestricted educational grant from Genentech, Inc. Patient Advocacy: Issues & Answers for CF © Questions & Answers

42. Resources CF Care Center 800-622-0385 or CFLegal@cfserv.com CF Legal Information Hotline – 800-622-0385 or CFLegal@cfserv.com CF Foundation – www.cff.org or 800 FIGHT CFwww.cff.org CF Services Pharmacy, Inc. – www.cfservicespharmacy.com or 800-541-4959 www.cfservicespharmacy.com

43. Resources Federal Government - www.firstgov.gov or 1-800-FED-INFOwww.firstgov.gov  Social Security  Medicare  COBRA  HIPAA  Americans with Disabilities Act  U.S. Department of Education  State insurance commissioners

44. CF Legal Information Hotline 800-622-0385 or CFLegal@cfserv.com Beth Sufian, J.D. Sponsored by CF Services Pharmacy, Inc. www.cfservicespharmacy.com

45. Learn More – www.cff.org

47. Presented by This Web cast is supported by an unrestricted educational grant from Genentech, Inc. Patient Advocacy: Issues & Answers for CF © Thank You