Patient Advocacy: Issues & Answers for CF © Presented by This Web cast is supported by an...

Patient Advocacy:Issues & Answers for CF©

Presented by

This Web cast is supported by an unrestricted educational grant from Genentech, Inc.

Patient Advocacy: Patient Advocacy: Issues & Answers for CFIssues & Answers for CF©©

Beth Sufian, J.D.Beth Sufian, J.D.

Sufian & Passamano, L.L.P.Sufian & Passamano, L.L.P.

&&

Suzanne Cumming, R.N., B.S.N.Suzanne Cumming, R.N., B.S.N.

Baylor Adult CF Care CenterBaylor Adult CF Care Center

Houston, TexasHouston, Texas

If You Do Not Know Your If You Do Not Know Your Legal Rights. . .Legal Rights. . .

Can limit access to care whichImpacts health

Health Health InsuranceInsurance

Available at Available at CF Care Center or CF Care Center or

www.cff.orgwww.cff.org

http://www.cff.org/

Health Insurance CoverageHealth 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 insuranceFederal government

Key Insurance IssuesKey Insurance IssuesHealth Insurance Portability

Accountability Act (HIPAA) Applies to group policiesTime limit on pre-existing conditionCreditable Coverage

No pre-existing condition wait if there has been less than a 63 day break in coverage

HIPAA - HIPAA - Group CoverageGroup CoverageGroup policy for businesses of 2-50

employees regardless of healthMust be a legitimate businessEmployees can be relatedIf a person has a medical condition

insurance company can charge higher premiums

Can raise rates on second and following years

Private Health Insurance Private Health Insurance

Know your policyHighlight CF related sections, e.g.,

prescription drug coverage

Policy may change each yearKeep good records, e.g., clinic visits,

treatments, drugs Keep and review bills & formsKeep notes of conversations

with insurance company

Appeal A Denial of CoverageAppeal A Denial of Coverage

Timely appeal Find out why coverage deniedFind out how to appeal

Documentation from CF doctor of medical necessity

Pick battlesUsually have two chances

COBRA - COBRA - Consolidated Omnibus Consolidated Omnibus Budget Reconciliation ActBudget Reconciliation Act

Extension of health insurance Job termination or layoff - 18 months Death of covered employee – 36 monthsDivorce or separation - 36 monthsBecome eligible for SSDI (Social Security

Disability Insurance) - 29 monthsChild reaches limiting age - 36 months

COBRA ApplicationCOBRA Application

Employers with 20 or more employeesFormer employee required to pay full

monthly premium plus 2%Save money for COBRAIf employer cancels insurance for all

employees, then COBRA coverage ends

Transition to AdulthoodTransition to Adulthood

Changes from dependent on parent’s policy to having own insurance

Dependents will reach limiting age on policyLimiting age – age on policy when

coverage of dependent ends

COBRA extension for 36 months when child reaches limiting age

Continuation of Coverage – Continuation of Coverage – State LawState LawRequires 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

Continuation of CoverageContinuation 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

Continuation of CoverageContinuation of CoverageStates that do not have a law for

continuation of coverage:AlabamaAlaskaDCKansasMaineOklahomaOregon

CF Care Center HelpCF Care Center Help

Tell your CF center if you are having trouble with insurance

May know of other programsCan provide. . .

Information for continuationof coverage

Statements of medical necessity for coverage of medical treatments and drugs

Government Government ProgramsPrograms

Government ProgramsGovernment Programs

May be programs that provide benefits to people with CF

Having a diagnosis of CF does NOT automatically qualify a person for benefits

SSI - SSI - Supplemental Security IncomeSupplemental Security Income

Must meet both low income and medical requirements

Receive monthly benefitSome states add money to federal

benefit so amounts may differ by state

Eligible for Medicaid coverage upon approval of application

Low Income RequirementsLow 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

SSDI - SSDI - Social Security Disability Social Security Disability IncomeIncome

Work requirementsEmployed & paid Social Security taxes

Medical requirementsMonthly benefit based on amount of

Social Security taxes paid Qualify for Medicare coverage 29

months after considered disabledNeed COBRA to extend coverage

Medical Requirements – Medical Requirements – within Last 12 Monthswithin Last 12 Months

Low pulmonary function (PFT)FEV1 based on height

Hospitalizations - 3 in last 12 monthsTreatment of respiratory infections -

IV or Inhaled antibiotics – at least once every 6 months with in the last year

Medical Records EvidenceMedical Records Evidence

12 month records of. . .PFT reports (lung function)Sputum culture reportsClinic notesLetter from doctorDischarge summaries

if hospitalized

Social Security ApplicationSocial Security Application

On-line or phone – www.ssa.org or 800-772-1213

Letter from doctorKeep copies of records & applicationHave 60 days from receipt of denial

to appeal

http://www.ssa.org/


Give accurate information about your health status. . .Medical record MUST reflect health status

Center assistance. . . How to get startedAssessment of meeting

medical requirementsGetting medical record copiesLetter from doctor

EducationEducation



http://www.cff.org/

EducationEducation

Key to future employment opportunities

Important regardless of disease severity

Laws to help child get appropriate education without jeopardizing health

IDEA - IDEA - Individuals with Individuals with Disabilities Education ActDisabilities 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 studentParent can request assessment

IEP - IEP - Individual Education PlanIndividual Education Plan

Letter from doctor explaining CF and medical needs

Right to have a mediation or fair hearing if requests are denied

IEP - CF IssuesIEP - CF Issues

Potential changes to include in plan, e.g., modifications. . .Taking medications at schoolProviding school work &/or

possible instructionArriving later than others Doing treatments during school dayNot being outdoors in extreme heat

or cold

Rehabilitation Act of 1973, Rehabilitation Act of 1973, Section 504Section 504

Students attending any school that receives federal funds are protected from discrimination

Requires plan for modificationsGives same protections as IDEA

Vocational Rehabilitation ActVocational Rehabilitation Act

Assists with job placementMay provide funding for state or

community college/university Can appeal if denied servicesVocational Rehab services in

major cities


CF center can. . .Provide documentation of student’s needsEducate schools &/or vocational rehab

services about CFSpeak with school about CF

and importance of modificationsProvide letter addressing

medical necessity of modifications

EmploymentEmployment



http://www.cff.org/

Employment Laws Protecting Employment Laws Protecting Employees with DisabilitiesEmployees 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

Protections Under ADAProtections Under ADA

No pre-employment medical questionsTelling CF diagnosis is optionalCannot be fired simply for having CFReasonable accommodations

e.g., later start time, no smoking, eating at desk, etc.

Family & Medical Leave Act Family & Medical Leave Act (FMLA)(FMLA)

Employer has 50 or more employees 12 weeks unpaid leave to care for

self, child, parents or spouse Must have worked for 1 yearMust have worked a minimum of

1250 hours in last 12 months

Employment ChoicesEmployment Choices

Guiding principals for employment:Protect access to health insurance

through employment Chose employers covered by civil

rights and employment laws

Employment ChoicesEmployment Choices

Guiding principals for career or employment:Physical activity requirementsRisk of infectionWork time, flex vs. structuredLocation of work,

i.e. indoors vs. outdoorsFlexible to working at home or going

part-time


Discuss with CF care team. . .Career optionsPotential employment opportunitiesPossible health concerns related to job Discuss issues related to ability to work

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Questions & Answers

ResourcesResourcesCF Care CenterCF Legal Information Hotline –

800-622-0385 800-622-0385 oror [email protected] [email protected] Foundation – www.cff.org or

800 FIGHT CFCF Services Pharmacy, Inc. –

www.cfservicespharmacy.com or 800-541-4959

http://www.cff.org/

http://www.cfservicespharmacy.com/

ResourcesResourcesFederal Government - www.firstgov.gov

or 1-800-FED-INFO Social SecurityMedicareCOBRAHIPAAAmericans with Disabilities ActU.S. Department of EducationState insurance commissioners

http://www.firstgov.gov/

CF Legal CF Legal Information Hotline Information Hotline

800-622-0385 or 800-622-0385 or [email protected]@cfserv.com

Beth Sufian, J.D.Beth Sufian, J.D.

Sponsored by CF Services Sponsored by CF Services Pharmacy, Inc.Pharmacy, Inc.

www.cfservicespharmacy.comwww.cfservicespharmacy.com

http://www.cfservicespharmacy.com/

Learn More – www.cff.orgLearn More – www.cff.org

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