IDF Health Insurance Toolkit

2012

forPatients with Primary Immunodeficiency Diseases and Their Families

September 2012

IDF Health Insurance Toolkit

for Patients with Primary Immunodeficiency Diseases and Their Families

Having the tools you need to select the right healthcare plan for you and your family is very important. As the U.S. healthcare system undergoes changes, one important change is that individuals and small businesses will be able to shop for and purchase health insurance through a state insurance exchange. Those affected by primary immunodeficiency diseases (PIDD), as well as other rare disorders, need to make educated decisions on their coverage options. The Immune Deficiency Foundation’s (IDF)Health Insurance Toolkit provides you with the information and resources to make the best possible choice in selecting a private health insurance plan.

This toolkit reflects rules and protections already in place under the Affordable Care Act, including no cost-sharing for certain preventive services and a ban on lifetime limits on benefits. Changes that take effect in 2014 will be reflected in the next, updated edition of the Health Insurance Toolkit and will include a ban on annual limits on benefits, the essential health benefits and standardized levels of coverage.

It is essential to understand your family’s current utilization of healthcare and learn to evaluate and compare medical insurance plans available in your area. The selection of an appropriate insurance plan can affect the health and finances of both the patient with primary immunodeficiency disease and family members. IDF is proud to offer this toolkit to provide you with information, facts, resources and worksheets to help you choose the best possible options for you and your family.

About the Immune Deficiency Foundation

The Immune Deficiency Foundation (IDF) is the national non-profit patient organization dedicated to improving the diagnosis, treatment and quality of life of persons with primary immunodeficiency diseases through advocacy, education and research. IDF was founded in 1980 by parents of children with primary immunodeficiencies and their physicians. At that time, there were few treatments for primary immunodeficiency diseases, almost no educational materials for patients, no public advocacy initiatives, and little research being done. In the past thirty years, IDF has pursued an aggressive agenda to remediate these problems and has made tremendous strides in the following areas:

Helping the patient and professional communities gain a broader understanding of primary immunodeficiency diseases through comprehensive education and outreach efforts;
Promoting, participating in, funding and supporting research that has helped characterize primary immunodeficiency diseases and given healthcare providers substantially improved treatment options for the care of patients with primary immunodeficiency diseases;
Addressing patient needs through public policy programs on local, national and international levels by focusing on issues such as insurance reimbursement, patient confidentiality, SCID newborn screening, preventing genetic discrimination, ensuring the safety and availability of immunoglobulin therapy, and maintaining and enhancing patient access to a full range of treatment options;
Establishing supportive networks of patients and professionals to ensure that the needs of patients with primary immunodeficiency diseases are recognized and addressed.

In the United States, approximately 250,000 people are diagnosed with a primary immunodeficiency disease, and many more go undetected. Representing a group of more than 150 different rare disorders, primary immunodeficiencies are often difficult to diagnose. While not contagious, these diseases are caused by hereditary or genetic defects, in which part of the body’s immune system is missing or functions improperly.These individuals live throughout the country and experience a number of problems which have been documented by IDF. These patient problems include:

Difficulty in finding specialized healthcare by immunologists or care providers knowledgeable about immunodeficiency
An inordinate delay in reaching proper diagnoses
Problems with availability of appropriate treatment
Difficulties financing healthcare and treatment
Finding instructional materials about the specific diseases
Educating the community and those with whom they come in contact about their disease and particular needs
Lack of peer support and connection to others with whom they can share experiences

The goal of IDF is to address these issues and help affected individuals to overcome these difficulties, thereby enabling them to live healthy and productive lives.

For more information, contact IDF: 800.296.4433 or

Table of Contents

Private Health Insurance Toolkit………………………………………………………………………….5

Provides a general overview of the toolkit

Getting Started………………………….……………………………………………………………………6

Identifieswhat materials you need to complete the Health Plan Cost Comparison Worksheet

Personal Health Experience Status Sheet………………………………………………………………7

Allows you to summarize your healthcare utilization in order tounderstand your needs in choosing a new healthcare plan

Health Plan Cost Comparison Worksheet …………………………..………….………………………8

Helps you record and compare healthcareplans’ cost and benefits

FACT SHEETS

Summary of Benefits and Coverage (SBC) and Uniform Glossary……………………………….12

Standard forms that must be used by all health insurance companies to summarize benefits and coverage.

Prior Authorizations…………………………………………………………………………………….....13

Information about prior authorizations required for certain procedures and medications

Appeals & Grievances………………………………………………...…………………………………..14

If you are denied coverage of healthcare claims, this section will help you understand the appeals process.

Medicare.……………………………………………………………………………………………………16

Summary of how Medicare eligibility affects those with private insurance coverage

Acronyms and Glossary………..……………………………………..………………………………….20

This publication will be updated periodically. Please visit the Immune Deficiency Foundation website for updated versions at

Private Health Insurance Toolkit

Whether it is an individual or family policy offered through your employer (a group health plan) or one you acquired as an individual, there are many things to consider when reviewing your options. These considerations usually fall under one of two categories: cost or benefits. Typically most people look at the cost of the plan when making a decision – our goal is to help you evaluate the benefits you receive in relation to the cost of the plan you select. Questions to ask may include:

What is the monthly/annual premium for the plan?
In a given year, what might be the sum total of my out-of-pocket costs, including medical and prescription co-pays, deductibles and/or co-insurance?
Will the policy cover all the services I need?
Are my physicians covered or are they out-of-network?
Are there annual limits? If so, is it a maximum annual benefit limit based on dollars or on number of visits or both? For example, home healthcare coverage is usually limited to a certain number of nursing visits per year.
Are out-of-network benefits available? If so, what percentage of cost will be my responsibility if I receive out-of-network benefits?
Am I covered if I get sick while out of state? Out of the country?

For those affected by primary immunodeficiency disease, there are often additional, more specific, questions you must ask that relate to what benefits are covered and how, such as:

Is immunoglobulin (Ig)therapy covered? If so, is it a part of major medical or a pharmacy benefit?
Do I have a choice of site of care (hospital, home infusion, physician’s office)?
Do I have a choice of administration of therapy, i.e. subcutaneous (SCIG)or intravenous (IVIG)?
What is my out-of-pocket cost for my Ig therapy?
Are supplies and nursing services covered?
Do I need a referral to see a specialist?
What services require prior authorization?
Is Ig therapy subject to a restrictive formulary?
Will I be required to switch from my current Ig product to another product?
Does the plan provide a case manager to assist me with navigating my benefits?

Answers for many of the questions above, both relative to cost and benefits, can be found by reviewing your plan’s summary of benefits, drug formulary list and provider network directory. While this is often viewed as a tedious process, it is one of the most important steps you can take to insure that a plan meets your needs.

It is important to remember that …Once you choose a plan, you cannot change
until the next open enrollment period.

In many instances, you may find that you have the option to choose between multiple plan types and designs: HMO, PPO, POS, EPO, etc. The “Health Plan Cost Comparison Worksheet” (page 8)is a tool designed to assist you in performing a side-by-side comparison of your plan options by helping to identify coverage benefits and out-of-pocket costs associated with each. The Worksheet can be used in two ways: as a tool to make general comparisons between health plans or as a customized tool designed to highlight the costs and benefits specific to your individual needs.

Getting Started

Step 1
Prepare the “Personal Health Experience” status sheet (page 7).

Step 2

Collect from your Human Resources representative, case manager or navigator thefollowing documents foreach health plan being presented.Alternatively, if you are purchasing individual insurance, ask for the plan documents from the insurance company or insurance broker.(Please notethat often you will be provided with a link tothis information on the carrier’s website.)

Benefit Summary - A benefit summary gives an overview of the benefits provided by health insurance plans and does not include all requirements or qualifications of each benefit. It shows current rates for all benefit programs including health, dental and life insurance. It is only a document given for informational purposes and does not constitute an agreement.

Drug Formulary - Health insurance companies maintain a formulary, which is a list of prescription drugs, both generic and brand name that are available through your health plan. A formulary classifies drugs into different cost tiers—categories that define the plan member’s co-payment or co-insurance levels. Prescription drug plans financially reward patients for using generic and lower-tier formulary drugs by requiring the patient to pay progressively higher co-payments or co-insurance for drugs on higher tiers.

Provider Network Booklet - A provider network is a group of providers (such as physicians, pharmacies, hospitals and others) who are contracted to provide healthcare services to plan members. These providers have agreed to see members under certain rules, including billing at contracted rates. To get that price, a patient must be covered by a particular health plan that uses that network. A patient has less or no insurance coverage if they see a provider who is out of their network with some health plans.

Health Savings Account or Flexible Spending Account - If your employer provides eitherof these programs, printed copies of the details will be helpful. A Health Savings Account is a medical savings account available to individuals enrolled in a high-deductible health plan that meets certain federal rules for out-of-pocket costs. The funds contributed to an account are not subject to federal income tax at the time of deposit. Healthcare Flexible Spending Accounts are employer-established benefit plans that reimburse employees for specified medical expenses as they are incurred. The employee contributes funds to the account through a salary reduction agreement and is able to withdraw the funds set aside to pay for medical bills.

Step 3
Begin using your “Health Plan Cost Comparison Worksheet” by using theinformation from your benefits summary and drug formulary to fill in each sectionthat applies to your insurance needs on the worksheet. You could use a pencil tomake changes or make a photo copy of the worksheet. If the data you need is notavailable in the information provided to you, call your Human Resources, BenefitsAdministrator,case manager, navigator or insurance representative.

Personal Health Experience Status Sheet

Choosing a healthcare plan can be very confusing. There are many things to consider, however, two of the most important are cost and benefit design. When trying to determine your potential out-of-pocket costs, it is important to determine which benefits you (and your family, if you are all on the same policy) typically use and how often you use them. This will help you project your out-of-pocket costs for the upcoming benefit year.The easiest way to do this is to ask yourself the following questions:

“In the past 12 months I have…”

Visited my primary care physician_____times

Spent $_____in out of pocket costs (OOP)

·Spouse has visited his/her primary care physician _____ times

Spent $ _____OOP

·Child(ren) have visited their primary care physician _____ times
Spent $ _____OOP

Been seen by a specialist _____ times

Spent $ _____OOP

·Spouse _____ times
Spent $ _____OOP

·Child(ren) _____times
Spent $ _____OOP

Visited an ER or urgent care center _____times.

Spent $ _____OOP

·Spouse_____times
Spent $ _____OOP

·Child(ren) _____ times
Spent $ _____OOP

Purchased _____ number of prescriptions (including for my family) at my local pharmacy. Spent $ _____OOP

Been admitted to a hospital for an overnight stay_____ times.

·Spouse_____ times

·Child(ren)_____times

Number of immunoglobulin therapy treatments _____

Spent $ _____OOP

This edition of the toolkit reflects rules and protections already in place under the Affordable Care Act, including no cost-sharing for certain preventive services and a ban on lifetime limits on benefits. Changes that take effect in 2014 will be reflected in the next, updatedIDF Health Insurance Toolkit publication and include a ban on annual limits on benefits, the essential health benefits, and standardized levels of coverage. For any unfamiliar acronyms or terms, see the Acronyms and Glossary section that begins on page20.

Health Plan Cost Comparison Worksheet

Healthcare Plans (put name of each plan offered in separate column)
Name of plan / 1) / 2) / 3)
Plan Type (EPO, HMO, PPO, POS)
Does plan require you to choose primary care physician / Yes / □ / Yes / □ / Yes / □
(PCP)? / No / □ / No / □ / No / □
If so, is your current primary care physician in network? / □ / □ / □
Yes / Yes / Yes
No / □ / No / □ / No / □
Premium (this can be monthly, annually or per pay period)
$ / $ / $
Financial (deductable/coinsurance/annual limits)Note: Some services are covered before deductible is met
Deductible: / $ / $ / $
Individual
Family / $ / $ / $
Maximum out-of-pocket / $ / $ / $
Individual
$ / $ / $
Family
Co-Insurance – out-of-pocket (i.e. 90/10, 80/20, 70/30) / / / / / /
Is the deductible included in the out-of-pocket? / Yes □ / No □ / Yes □ / No □ / Yes □ / No □
Does the plan have annual max? (for all group plans andnew individual policies issued after 3/23/2010, the ACA restrictsand phases out annual limits; the limit for 2012 is $1.25 million,unless the plan received a waiver) / Yes / □ / Yes / □ / Yes / □
No / □ / No / □ / No / □
If so, what is the limit? / $ / $ / $
Does the plan have life time max? / Yes / □ / Yes / □ / Yes / □
(no plan may impose a lifetime maximum on benefits that
are considered essential) / No / □ / No / □ / No / □
If so, what is the limit? / $ / $ / $

(Worksheet continued on next page)

Preventive Care Co-Pay (For a complete list of preventive services for which there is no co-pay allowed under the ACA, go to
Physical exam / $ / $ / $
Routine pediatric care / $ / $ / $
Immunizations (the ACA bans co-pays for recommended / $ / $ / $
vaccines for children up to age 18 and adults)
Osteoporosis screening (the ACA bans co-pays for / $ / $ / $
women over 60 depending on risk factors)
Gynecological exams / $ / $ / $
Prostate screening / $ / $ / $
Mammograms (the ACA bans co-pays for exams every 1
to 2 years for women over 40) / $ / $ / $
Colorectal Cancer screening (the ACA bans co-pays for
adults over 50) / $ / $ / $
Major Medical
(Do you have a copy of the plan's provider list?) / Yes / □ / Yes / □ / Yes / □
No / □ / No / □ / No / □
Out of Network Co-Insurance
Please note cost shares may vary with using out-of-network providers. Indicate plan’s percentage of cost share. / % / % / %
Outpatient Care Co-Pay (ongoing co-pays after deductible is met)
Physician office / $ / $ / $
Specialist / $ / $ / $
Surgery / $ / $ / $
Laboratory services / $ / $ / $
Immunoglobulin (Ig) infusions / $ / $ / $
Nursing visit ____ visits allowed per calendar year / $ / $ / $
Hospital Care (Inpatient services)
Physician's and surgeon's services / $ / $ / $
Private room and board / $ / $ / $
Semi-private room and board / $ / $ / $
All drugs & medications / $ / $ / $

(Worksheet continued on next page)

Emergency Care Per Visit Co-Pay (for group plans and individual policies created or issued after
3/23/2010, the ACA bans higher co-pays or co-insurance for out-of-network ER services)
Emergency room / $ / $ / $
Urgent care center / $ / $ / $
Maternity Care
Pre-natal and post-natal care / $ / $ / $
Hospital services (mother and child) / $ / $ / $
How many post delivery recovery days available
Substance Abuse Co-Pay
Inpatient ___ visits allowed per calendar year / $ / $ / $
Outpatient ___ visits allowed per calendar year / $ / $ / $
MentalHealth Co-Pay(TheMentalHealthParity and AddictionEquityActprohibits plans fromimposing higherdeductibles orco-paysortighter limitsonvisits thanareallowedformedicalservices intheplan)
Inpatient _visitsallowedper calendaryear / $ / $ / $
Outpatient visits allowedper calendaryear / $ / $ / $
PharmacyBenefitsCo-Pay
(doyouhavea copyof theplan's drugformularylist?) / Yes□
No□ / Yes□
No□ / Yes□
No□
Yearlydeductible Individual
YearlydeductibleFamily / $
$ / $
$ / $
$
Co-payTier 1(generics) / $ / $ / $
Co-payTier 2(Formulary/brand) / $ / $ / $
Co-payTier 3(Non-Formulary) / $ / $ / $
Co-insuranceTier 4(SpecialtyTier)- %costshareor co- pay / $or% / $or% / $or%
Ifyour planhasaspecialtytierwithco-insuranceisthere amaximumperprescription? / Yes □
No □ / Yes □
No □ / Yes □
No □
Isthereanannual pharmacymaximumout-of-pocket? / Yes □
No □ / Yes □
No □ / Yes □
No □
Isimmunoglobulintherapycoveredunder thepharmacy benefit? / Yes □
No □ / Yes □
No □ / Yes □
No □
Doyouhavemorethanonechoiceof ‘specialty’
pharmacyprovider? / Yes □
No □ / Yes □
No □ / Yes □
No □
Isthereapreferredspecialtypharmacy? / Yes □
No □ / Yes □
No □ / Yes □
No □

(Worksheet continued on next page)

Other (if offered)(ongoingco-paysafter deductible ismet)
Chiropractic visits allowedper calendaryear / $ / $ / $
Shorttermrehabilitation–inpatient / $ / $ / $
Shorttermrehabilitation–outpatient _visits allowed per calendaryear / $ / $ / $
Skillednursingfacility(SNF) / $ / $ / $
Homehealthcare visits allowedpercalendaryear / $ / $ / $
Hospicecare–Inpatient / $ / $ / $
Hospicecare–outpatient visits allowedper calendaryear / $ / $ / $
Palliativecare visits allowedpercalendaryear / $ / $ / $
TotalEstimateof Cost

Summary of Benefits and Coverage (SBC)
and Uniform Glossary

Whether comparing health plan options from your employer or shopping for health coverage on your own, benefit summaries will be easier to read and use in choosing or renewing a plan beginning September 23, 2012. Under the Affordable Care Act (ACA), all health insurance companies and employers offering coverage will have to use the same standard form to summarize the benefits and coverage offered under the plan. With each insurance company and employer using the same form, consumers can more clearly compare plans and choose one, and can better understand the benefits and costs they have under the plan in which they are enrolled.