Insurance Challenges
and
Ways to Succeed
Beth Rader
Sean Corry
www.npkua.org
Improving the lives of individuals with PKU and pursuing a cure
Introductions
• Beth Rader, Independent Consultant
o San Francisco
• Sean Corry, Insurance Broker, PKU Dad
o Seattle
www.npkua.org
Improving the lives of individuals with PKU and pursuing a cure
Here’s What We’ll Talk About
• Today we’ll talk about insurance coverage:
o Different types of coverage
o Tips, skills, and strategies to address challenges
o Where you might find some help
www.npkua.org
Improving the lives of individuals with PKU and pursuing a cure
When Coverage Works…
1. Covered
Benefit?
2. Medically
Necessary?
3. Processed
Correctly?
Paid!
But when coverage doesn’t work,
the answer lies in one of these areas
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Improving the lives of individuals with PKU and pursuing a cure

Do You Have Coverage For
Medical Foods?
1. Covered
Benefit?
2. Medically
Necessary?
3. Processed
Correctly?
Key Questions:
• What kind of insurance do you have?
• Does your insurance policy cover medical foods?
• How does the insurance policy cover medical foods?
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Improving the lives of individuals with PKU and pursuing a cure
Paid!
Covered Benefit
Just Like a Snowflake…
No Two Issues are the Same
• Laws differ from state to state
• Coverage differs from state to state
• Sometimes only Federal laws applies
• The insurance companies handle PKU
coverage in different ways
• Insurance coverage can be complicated!
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Improving the lives of individuals with PKU and pursuing a cure
Covered Benefit
Types of Coverage
• Government
• Private Insurance
o Individual or family plans
• Includes “High Risk Pools”
o Group Coverage (Employer-based)
• Insured Plans, regulated by the states
• Self-Insured Employers - Also called “self-funded” or
“ERISA plans”
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Improving the lives of individuals with PKU and pursuing a cure
Covered Benefit
Does Your Insurance Plan Include
Medical Food as a Covered Benefit?
It depends on your plan, but rule of thumb:
• Government
•
- except for Medicare, chances are
good that medical food is covered
Private insurance
o Varies widely
o Depends on state and the specific insurance
• We’ll explain how to find whether your
plan must cover medical foods
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Improving the lives of individuals with PKU and pursuing a cure
Covered Benefit
Deciding About Coverage:
Sometimes You Have Choices
• When can you evaluate your options?
o When individual coverage is available to you
o When you get a new job with benefits
o During “Open Enrollment” at work
More options should be available in 2014
when federal
Health Reform really kicks in!
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Improving the lives of individuals with PKU and pursuing a cure
Covered Benefit
Evaluating Insurance Options
• Does the plan have the coverage you need?
o Medical services, like clinic visits and blood draws
o Formula only?
o Low-protein foods?
• Ask about PKU coverage before you take a job
• Find out how medical foods covered
o As a medical service?
o As a pharmacy benefit?
o Are only specific brands covered?
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Improving the lives of individuals with PKU and pursuing a cure
Covered Benefit
Evaluating Potential Coverage
• Find out what your cost-sharing will be
o Deductibles
o Benefit Caps (you pay everything after cap is hit)
o $ Copayments or % Coinsurance
• Caution with individual health plans
o Rx may be an optional benefit
o Rx may have coverage limitations
• (Remember, Kuvan is a prescription drug)
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Improving the lives of individuals with PKU and pursuing a cure
Where Can We Read
About PKU Coverage?
Covered Benefit
• The “Summary of Benefits”
o Only a few pages long
o Offers only the plan highlights
o Will probably NOT tell you what you need to know
“This is only a brief summary of the major
benefits provided by our plans. For information
and details, please refer to the Benefit Booklet
or the Insurance Contract.”
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Improving the lives of individuals with PKU and pursuing a cure
Digging Deeper
for Coverage Information
Covered Benefit
• The Benefits Booklet
o Sometimes called an “Insurance Certificate” or
“Evidence of Coverage”
o Usually not given to you for many weeks AFTER
coverage begins
o Many pages long
o Should give at least a brief description of
coverage for PKU formula and/or medical foods
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Improving the lives of individuals with PKU and pursuing a cure
Covered Benefit
Benefit Booklet Example
Page 21 of a “Benefits Booklet”
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Improving the lives of individuals with PKU and pursuing a cure
Covered Benefit
Might There Be Even MORE Detail?
• The Insurance Contract
o This is for insured plans, either individual or
group
• The “Plan Document”
o This is for self-insured (ERISA) plans
• These are usually big documents, and spell
out almost all the details of coverage
• Can you get a copy? From where?
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Improving the lives of individuals with PKU and pursuing a cure
Covered Benefit
Claims With Employers That
Manage Their Own Medical Plan*
• The “Plan Document” determines coverage
• Many plan trustees have never heard of PKU
or dealt with a claim for medical foods
o “Trustees” are the ones running the plan
• If they do not cover PKU medical foods, you
might be able to change their minds!
* Self-Insured Employers? See appendix slides for more details
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Improving the lives of individuals with PKU and pursuing a cure
Covered Benefit
Convincing Employers*
• Ask them to reconsider. Tell them:
o PKU is very rare.
• If they provide coverage, their costs will be limited
because they probably don’t have other PKUers
o Being off diet leads to severe, progressive mental
retardation, depression, impulse control disorder,
phobias, epilepsy, tremors, and other disorders
o Diet is the only sure treatment!
* Self-Insured Employers? See appendix slides for more details
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Improving the lives of individuals with PKU and pursuing a cure
Covered Benefit
More Reasons for Employers*
• Also tell them:
o A treated person with PKU lives a normal,
productive life
o It is less costly to cover medical foods than to
cover the illnesses that come from being off diet
o It is the right thing to do!
* Self-Insured Employers? See appendix slides for more details
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Improving the lives of individuals with PKU and pursuing a cure
Covered Benefit
Could We Get National Coverage?
• NPKUA is working on this!
• Some of you may have participated in the
Regional HHS meetings last summer
• Your support and effort may play a key role
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Improving the lives of individuals with PKU and pursuing a cure
Covered Benefit
NPKUA Efforts For National Coverage
• Legislation: Medical Foods Equity Act
• Conversations at Regional HHS meetings
o Washington, Atlanta, Chicago, Denver
• Working with lobbying firm to meet with
National HHS
• Advocacy table at NPKUA Conference
o What does access to medical food mean to you?
www.npkua.org
Improving the lives of individuals with PKU and pursuing a cure
Medical Necessity
Is Your Prescription Medically Necessary?
1. Covered
Benefit? 
2. Medically
Necessary?
3. Processed
Correctly?
Paid!
Key Questions:
• Do you have a prescription?
• What are your plan’s rules for assuring coverage?
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Improving the lives of individuals with PKU and pursuing a cure
Medical Necessity
Why Wouldn’t Medical
Food Be “Medically Necessary?”
• The plan may have specific criteria that
hasn’t been met
• Diagnosis issues
• Age and gender restrictions
• Particular items not on the plan’s formulary
• We will discuss how to appeal
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Improving the lives of individuals with PKU and pursuing a cure
Process Issues
Coverage Process
1. Covered
Benefit?

www.npkua.org
2. Medically
Necessary?

3. Processed
Correctly?
Improving the lives of individuals with PKU and pursuing a cure
Paid!
Process Issues
Claims Processing Issues
Issues with claims processing could include:
• Incomplete claim form
• Coding error
• Missing documentation attached to claim
• Medical food is mis-categorized (food
supplement, diet aid)
• Other misunderstandings
What can you do?
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Improving the lives of individuals with PKU and pursuing a cure
Tools to Use
Be Prepared
• It is common for a claim to go wrong
• Know your coverage, and get everyone on
board – Talk with:
o The insurance company
o Your clinic professionals
o Your pharmacist, etc.
o The company (or companies) providing the
medical foods
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Improving the lives of individuals with PKU and pursuing a cure
Tools to Use
Keep Copies of Everything
• Get a written prescription for formula/food
o Keep a copy for yourself, in case the original gets
lost
o May need to get your Rx “renewed” occasionally
• Copy the label of your medical food
product
• Copy your invoice
o This can help solve billing and coding issues
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Improving the lives of individuals with PKU and pursuing a cure
Claims Denials
Claims Denials
• Even if you have coverage, a claim may be
denied due to medical necessity or
processing issues!
• Remember, PKU claims are not common
• May be an annoying administrative error
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Improving the lives of individuals with PKU and pursuing a cure
Claims Denials
Claims Denials
• Claims mistakes can be corrected!
o Simply denied in error
o Coding problems
o Mistaken for “Food Supplement”
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Improving the lives of individuals with PKU and pursuing a cure
How to Interact With
Your Insurance Company
Claims Denials
• Be able to explain PKU & dietary treatment
• Be able to explain what “medical food” is
o Not a “food supplement!”
o It is “prescribed” by your doctor or clinic
o It’s covered by the plan! (Show them where)
• If transferred to another person, be prepared
to start again start at the beginning
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Improving the lives of individuals with PKU and pursuing a cure
Claims Denials
Claims Denials: First Steps
• Read your policy (again)
o What’s covered, what’s not
o How to file an appeal
• Call “member services”
o Ask them to walk you through your coverage
o Ask for an explanation of the denial
o Determine if a “phone appeal” can be started
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Improving the lives of individuals with PKU and pursuing a cure
Claims Denials
Claims Denials: First Steps
• Does your insurer need more information?
o Ask what information you should collect
o Ask what information your providers should
submit:
• Health history?
• A treatment plan?
• Other details?
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Improving the lives of individuals with PKU and pursuing a cure
Claims Denials
Put It In Writing
• A clear statement why the denial should be
reversed
• Be thorough - cover all the bases
• Make it factual, not emotional
o State law apply?
o Error regarding medical necessity?
o Cannot tolerate “that” formula; need to switch
to another
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Improving the lives of individuals with PKU and pursuing a cure
Claims Denials
Organization and Details Count
• Make copies
• Ask for written confirmation of phone calls
• Keep a notebook names, dates of calls, etc.
• Verify their promises to follow-up
o If they don’t call you when promised, call them!
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Improving the lives of individuals with PKU and pursuing a cure
Claims Denials
Possible Second Appeals
• 41states plus the District of Columbia have
set up independent review boards to handle
appeals
• It is not uncommon for state appeals to
overturn insurance company denials
• Same rules for you – keep good records, be
persistent
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Improving the lives of individuals with PKU and pursuing a cure
Claims Denials
You Are Not Alone
• Your clinic
• The human resources department
• Your health insurance broker
• State Insurance Commissioner
• The medical food or pharmaceutical company
• NPKUA
o Tools on the website
o New Insurance Coach
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Improving the lives of individuals with PKU and pursuing a cure
Resources
The New NPKUA Insurance Coaches
• Goal: Insurance Coaches in Every State or Region
• Timing: Starting Fall 2012, as Coaches are on board and
go through orientation
• What you can expect if you sign up:
o Orientation and training
o Resources to help (sample letters, information about the law)
• Call NPKUA to see if there is a Coach in your state
www.npkua.org
Improving the lives of individuals with PKU and pursuing a cure
Resources
Resources For Patients
Organization
Category
Reimbursement Contact
NPKUA
Patient Advocacy for PKU
www.npkua.org
Call: 1-715-437-0477
Patient Advocacy Foundation
Patient Advocacy General
www.patientadvocate.org
Call:1-800-532-5274
Abbott
Medical Food Products
http://www.abbottpatientassistancefoundation.org/medical_n
utritionals.asp
Applied Nutrition
Medical Food Products
Call: 1-800-605-0410
Email: Coverage@medicalfood.com
Website: www.medicalfood.com/coverage.php
Cambrooke Foods
Medical Food Products
Call 1-866-4-LOW-PRO
Mead Johnson Nutrition
Medical Food Products
Nutricia
Medical Food Products
Call: 1-800-356-7354, ext. 1200
Vitaflo
Medical Food Products
Call: 1-888-VITAFLO
BioMarin
Pharmaceutical
http://www.kuvan.com/patients/parent-caregivers-patientsupport-a-assistance-programs.html
Call: 1-877-MY-KUVAN
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Improving the lives of individuals with PKU and pursuing a cure
Coverage Process Roadmap
Yes
Covered
Benefit?
Yes
Medically
Necessary?
Processed
Correctly?
Yes

No - Deny
No - Deny
No - Deny
We want to help you get there!
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Improving the lives of individuals with PKU and pursuing a cure
We’ll Stop Here,
But More in the Appendix
• The slides in the appendix provide a high
level look at:
o Types of coverage
• Government, Group, Individual
• Insured and Self-funded
o State Mandated Benefits
o Self-Insured Employers
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Improving the lives of individuals with PKU and pursuing a cure
Questions?
Time For More Discussion
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Improving the lives of individuals with PKU and pursuing a cure
Appendix
Why is insurance coverage
so complicated?
www.npkua.org
Improving the lives of individuals with PKU and pursuing a cure
Types of Coverage
• Government
o Medicaid and Medicare
o Title V: Children with Special
• Individual or family plans
o Includes “High Risk Pools”
• Group Coverage (Employer-based)
o Insured Plans, regulated by the states
o Self-Insured Employers
• Also called “self-funded” or “ERISA plans”
www.npkua.org
Improving the lives of individuals with PKU and pursuing a cure
Government Insurance - Types
• Low Income Help: Medicaid, WIC, Title 5
o Health coverage for lower-income individuals and
families
o Coverage varies by state, can be very complicated
• Medicare
o Health coverage for people 65 or older, people
under 65 with certain conditions or disabilities
• Federal/Military employees and retirees
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Improving the lives of individuals with PKU and pursuing a cure
Government PKU Coverage
• Medicare
o Medical Food generally not covered except in
rare circumstances
• Medicaid – rules vary state by state
• Plans for federal employees
o Regulated by Congressional law or administrative
policies
• It is very complicated and mysterious!
www.npkua.org
Improving the lives of individuals with PKU and pursuing a cure
Private Insurance:
Individual (or Family) Coverage
• Buy directly from an insurance company
o Coverage for PKU may be required
• More limited benefits
o Compared to group coverage
• Currently, most people have to pass a health
screen to get individual coverage
• An alternative: A state “high risk pool”
o Guaranteed coverage but may be expensive!
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Improving the lives of individuals with PKU and pursuing a cure
Employer-Based or Group Coverage
• Many people have health insurance coverage
through their employer’s plan
• Generally, two types of employer plans:
o An INSURED plan, subject to state “insurance
mandates”
o A SELF-FUNDED plan, not subject to state
“insurance mandates”
• Also called “Self-insured” or “ERISA plans”
www.npkua.org
Improving the lives of individuals with PKU and pursuing a cure
What’s an Insurance Mandate?
• It is a law that requires insurance coverage for
treatment of a specific health condition
• Most benefit mandates come from state law
o PKU medical food is an example in many states
• Some mandates come from federal law
o E.g., equal coverage for mental health
o There is no federal mandate for PKU coverage
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Improving the lives of individuals with PKU and pursuing a cure
State Insurance Mandates
• The apply only to “insured plans,” when an employer
buys coverage from an insurance company
• To be insured plan:
o For a specific monthly premium,
o The insurance company promises to cover all the medical
claims, whatever they may be.
o This means that the insurance company is assuming this
claims risk. This is regulated by state laws
• Sometimes mandates apply to individual coverage,
group coverage, or both
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Improving the lives of individuals with PKU and pursuing a cure
Why Were PKU Mandates Needed?
• PKU is rare and not well understood
• Formula (and now medical foods) are the
only treatment
• They are not “prescription drugs”
o As a category, prescription drugs are almost
always covered
(This is why Kuvan coverage is generally available)
www.npkua.org
Improving the lives of individuals with PKU and pursuing a cure
State Insurance Mandates for PKU





 

  
Yellow: Formula only
 : No Mandate
www.npkua.org
Blue:
Formula and low-pro foods
Pink:
Low-pro foods only!
Improving the lives of individuals with PKU and pursuing a cure
Self-Insurance is Different
• Some employers “self-insure.” They don’t
buy “insurance” from an insurance company
o Design their own medical plan
o Assume the claims risk themselves
o They “self-insure”
• They are subject only to federal law
• They are NOT subject to state mandates
www.npkua.org
Improving the lives of individuals with PKU and pursuing a cure
Self-Insured Employers
• The employer decides what will be covered,
and what will not
• Some self-insured plans cover PKU medical
foods
• Many do not cover PKU medical foods
o Sometime on purpose
o Sometimes they’ve never heard of PKU
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Improving the lives of individuals with PKU and pursuing a cure
Which Employers Self-Insure?
• Generally, it is the larger employers:
o 82.1% of employers with 500 + employees
o 25.7% of employers with 100 to 499 employees
o 13% of employers with fewer than 100 employees
also self-insure
• Nearly 60% of all U.S. employees are covered
by self-insured plans!
• Remember – not subject to state mandates
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Improving the lives of individuals with PKU and pursuing a cure