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About
Primary Immune Deficiency
IDF PATIENT/FAMILY HANDBOOK | CHAPTER XXII
Health Insurance for Primary Immune Deficiency: Taking Control
As we are all aware, having a chronic condition, like a primary
immune deficiency, can be financially taxing. If therapy is not administered
on a regular basis, the cost of complications and subsequent hospitalizations
is burdensome.
 Having the diagnosis of a chronic condition, like
a primary immunodeficiency, can be financially
taxing. If diagnostic services are limited and
therapy is not administered on a regular basis,
the cost of complications and subsequent
hospitalizations is burdensome.
Most individuals with primary immunodeficiency
rely on private third party payers to assist them
with these expenses. Unfortunately, people are
often frustrated when faced with the overwhelming
task of paperwork, phone calls and other issues
simply to justify the use of a diagnostic procedure
or therapy prescribed by their physician.
Looking for health insurance and understanding the
maze of issues involved can be an overwhelming
process that often leads to feelings of isolation and
helplessness. While not designed to solve each and
every health insurance problem, this chapter will
provide you with some of the information to prepare
you to be your own best advocate.
Most of the information is practical. First, there
is a description of the various payers, what
they cover and whom they serve. Next, there is
information about what to look for when changing
insurance coverage, a very important issue
when a chronic condition is involved. The Health
Insurance Portability and Accountability Act of
1996 (HIPAA). HIPAA is then reviewed. It is one
of the most important federal laws enacted within
the past decade regarding protection for you and
your family's health insurance coverage when
faced with life events. Other features that you
should have a general working knowledge of are
explained, such as COBRA, a name for extended
benefits.
Other hands-on information follows with how to
prepare yourself to face your insurer confidently
with questions about your coverage. And last,
but not least, as in every profession these days,
health insurance has its own "language." There is
a glossary of insurance terms so that you will feel
confidently "bilingual."
When it comes to your health coverage, never
hesitate to ask lots of questions and search for as
many resources as possible. Your well-being and
that of your family relies on it.
Who Are the "Payer Players"?
To best prepare for working with your health
insurer, you must understand who the various
"payer players" are in the scheme of things.
Group Health Insurance
Group health insurance coverage is a policy that
is purchased by an employer and is offered to
eligible employees of the company (and often
to the employees' family members) as a benefit
of working for that company. The majority of
Americans have group health insurance coverage
through their employer or the employer of a family
member. Many people don't realize that health
insurance is issued differently for different types
of employers, and that, because insurance is
regulated at the state level of government, the
laws regarding health insurance offered by the
different types of employers can vary significantly
from state to state. Millions of Americans work
for small employers, which for health insurance
purposes are generally those with 50 employees
or less. Millions of other Americans get their health
insurance coverage through large employers.
Generally, those are business with more than 50
employees. The laws about how coverage can
be issued to large groups are different than those
for small groups, and premium rates are also
determined differently. Federal law mandates that
no matter what pre-existing health conditions
small employer group members may have, no
small employer or an individual employee can
be turned down by an insurance company for
group coverage. This requirement is known in the
insurance industry as "guaranteed issue."
COBRA
Most people who are able to continue their group
health insurance benefits are eligible to do so
according to federal law called the Consolidated
Omnibus Budget Reconciliation Act of 1985
(COBRA). However, COBRA does not apply to
all employers; so many states have developed
other continuation-of-coverage options for people
who are not covered by COBRA. Also, many people leaving group insurance to buy individual
health insurance privately have portability benefits
required by another federal law.
You are responsible for paying the premium,
which is usually kept at 102% of what your
employer was paying on your behalf. (The 2% is
for administrative fees). For job termination or a
reduction in hours, COBRA's duration is normally
18 months. In the case of a divorce, separation
or death of a spouse, COBRA may be available
for up to 36 months. In the case of a dependent
child ceasing to be a dependent child under the
parent's employer plan, may be entitled up to 36
months. If you are deemed disabled by Social
Security within 60 days of your termination of
employment or reduction in hours of employment,
you are able to extend the COBRA continuation
period from 18 months to 29 months. This
extension is granted under the HIPAA federal
legislation discussed earlier. The extended period
of time offered is designed to protect you until
you become eligible for Medicare, since there is a
29 month waiting period before you can receive
Medicare benefits.
When these situations, known as "qualifying
events" occur, it is your responsibility, as the
employee, to notify the human resources
department of your employer (that person or
group responsible for medical insurance) within 60
days or you lose the option.
For further information on COBRA coverage and
your rights under COBRA law, you should contact
the human resource department or the benefits
manager within your organization or call your local
Department of Labor.
Individual Health Insurance
Individual health insurance is coverage that a
person buys independently. It can be for an
individual, a parent and dependent children, or a
family. The majority of Americans get their health
insurance coverage through an employer or
through a government program, but five percent of
the population purchases private health coverage
on an individual basis. Each state separately
regulates how individual policies may be marketed
and sold.
Individual health insurance is very different than
group health insurance, which is the type of
insurance that is offered through an employer.
Since laws mandating what types of services
must be included in individual policies are often
different than those dictating what must be
included in group policies, benefits are generally
less extensive than what most people would
receive through coverage they have through
work. Individual consumers may be surprised to
learn that some benefits that may be considered
"standard" in a group policy, may not be included
in an individual plan.
Individual health insurance companies are much
more limited than group insurance companies in
their ability to spread risk, so the laws concerning
individual health insurance are different in most
states. This means that applicants for individual
insurance will need to complete a medical
questionnaire when applying for benefits and,
unlike a group insurance policy, in most states
a company can decide not to cover people with
very serious medical conditions (e.g., primary
immunodeficiency), deeming them "uninsurable."
The Uninsurable
In most states you can be turned down
for individual coverage if you have a very
serious medical condition (e.g., primary
immunodeficiency). Most states have developed
some way to provide uninsurable people with
access to individual health insurance coverage.
Thirty-three states provide coverage to medically
uninsurable people through high-risk pools. Twelve
states use other means of providing uninsurable
people with access to individual coverage (e.g.,
requiring that all individual health insurance
companies issue individual policies regardless
of health status, coverage through a designated
health insurance company of last resort, etc.)
There are five states that still have no means of
providing individual health insurance access to
people with catastrophic medical conditions. To
find out what your state's options are for medically
uninsurable individuals, check with your local
Insurance Commissioner's Office.
High Risk Pools
At the time of the writing of this handbook,
thirty-three states provide coverage to medically
uninsurable people through high-risk pools.
High-risk pools are private, self-funded health
insurance plans organized by states to serve
high-risk individuals who meet enrollment criteria
and do not have access to group insurance.
In most states, they are independent entities
governed by their own boards and administrators,
but in other states, they function as part of the state's department of insurance. You generally
have a choice of health plan options and will
receive enrollment cards and other information
just like any other health plan. High-risk pools
normally contract with a health insurance carrier or
third-party administrator to administer paperwork
and claims, so your enrollment card and other
paperwork may not even appear to be produced
by the high-risk pool. Once enrolled, you use your
benefits just like any other consumer of private
insurance coverage.
Coverage options are very similar to traditional
individual health insurance offerings. It is generally
a comprehensive major medical plan with a range
of deductible options. The most common riskpool
option is a PPO plan, but many states also
offer indemnity coverage and some states have
HMO and/or HSA options available to consumers.
Risk pool health insurance is more expensive than
traditional individual insurance.
Medicare
Medicare is a federal health insurance program
which provides coverage for people over the age
of 65, blind, disabled individuals, and people
with permanent kidney failure or end-stage renal
disease. The Medicare program is administered
by the Centers for Medicare and Medicaid
Services (CMS) and pays only for medical services
and procedures that have been determined as
"reasonable and necessary." Medicare is divided
into three parts–Parts A, B, and D.
Part A covers inpatient hospital services and
certain follow-up care. This includes the cost of lab
tests, x-rays, nursing services, meals, semi-private
rooms, medical supplies, medications, necessary
appliances, and operating and recovery rooms.
Part B covers physician's services and other
medical expenses. Medicare Part B will cover both
the IVIG product and administration when provided
in a physician's office or in the hospital outpatient
setting. The coverage determination for IVIG is
reviewed by each Medicare regional carrier through
their medical policy department. Each carrier will
issue their own local coverage determination (LCD),
which outlines the specific coverage guidelines
for the use of IVIG therapy. Since January 1,
2004, the Medicare Part B program only allows
coverage in the home setting. It is important to
note that the home coverage provision is ONLY for
primary immunodeficiencies, and the coverage and
reimbursement is only intended for the IVIG drug
itself. Ancillary charges that may accompany the
IVIG infusion are not covered under this provision.
Beneficiaries must pay a monthly premium and a
small deductible each year for all approved services
covered under Part B.
Part D The new Medicare Prescription Coverage
program (Medicare Part D) went into effect on
January 1, 2006. Anyone who has Medicare
coverage can choose the new prescription
coverage benefit. The new prescription
benefit coverage was passed by Congress to
give Medicare beneficiaries more options for
prescription drug coverage that had never before
been covered under the Medicare program. As
it relates to coverage of IVIG, the new Medicare
Part D program DOES NOT cover IVIG in the
home setting for those who have a primary
immunodeficiency. However, Medicare Part D may
cover IVIG in the home for other disease states.
CMS administers the Part D program through
contracts with commercial and private payers
referred to as Medicare Prescription Drug Plans
(PDPs). To learn more about the new prescription
drug coverage go to www.medicare.gov, or call
1-800-MEDICARE.
For most of these services, Medicare pays 80%
of the bill and the beneficiary pays the 20%
coinsurance. You must first have Part A before
receiving Part B. If you apply for Social Security
disability, you will receive Medicare benefits after
being on disability for two years.
In many states, people covered under Medicare
have the option of choosing between managed
care and fee-for-service plans.
Individuals may also consider purchasing a
Medigap (supplemental insurance) policy. Medigap
policies help pay some of the health care costs
that your original Medicare plan will not cover.
For instance, there are 12 different standardized
Medigap policies (Plans A through L). Some of
these plans will help pay for the 20% coinsurance
under the Medicare Part B program. To learn
more about the various plans and coverage
guidelines go to www.medicare.gov/medigap,
or call 1-800-MEDICARE.
Medicaid
Medicaid is a welfare program sponsored by
both the federal and state governments, which is
administered by the individual states. Coverage
varies from state to state although each of the state
programs adheres to certain federal guidelines.
Medicaid enrollment criteria also varies from state
to state, but coverage is usually available only to
those who are not eligible for any other type of
health insurance and meet poverty guidelines.
Each state has a predetermined income level that
an individual or family must meet to qualify for
Medicaid benefits. The local office of the State
Department of Social Services is responsible for
reviewing applications and managing eligibility
requirements. Some states require Medicaid
beneficiaries to join managed care plans.
Medicaid programs may require prior authorization
for certain forms of treatment or prescription drugs.
This means that your physician must contact
Medicaid to obtain approval for reimbursement of
the treatment before you receive it.
State Assistance Programs
Your state may have a special assistance program
for particular chronic conditions. Most of these
programs are funded by state and local budgets
and are designed to meet the needs of adults
and/or children who are not eligible for any other
medical coverage.
They may also serve as a secondary or
supplemental coverage to Medicaid. The level of
coverage available will change according to such
variables as state needs and available funding.
These programs may be identified under such
names as Children with Special Health Care
Needs, Crippled Children's Services, or Children's
Medical Services.
Coverage for children with primary
immunodeficiencies may be severely restricted
or not available at all. It is best to check with
your local sources of information for eligibility
information before considering this as a coverage
option. SSI, or Supplemental Security Income,
makes monthly payments to aged, disabled, and
blind people with limited income and resources.
Disabled children, as well as adults, may qualify
for SSI payments. Eligibility and benefits vary by
state, but more information can be obtained by
contacting your local Social Security Office listed
in the White Pages of the phone book.
State Children's Health
Insurance Program (Schip)
As part of the Balanced Budget Act of 1997,
Title XXI (or SCHIP) of the Social Security Act
was passed in late 1997. The State Children's
Health Insurance Program gives grants to states
to provide health insurance coverage to uninsured
children up to 200% of the federal poverty level
(FPL). States may provide this coverage by
expanding Medicaid or by expanding and creating
a separate state children's health insurance
program. The program's primary purpose is to
help children in working families with incomes too
high to qualify for Medicaid but too low to afford
private family coverage. Although benefits vary
from state to state, children generally are eligible
for regular check-ups, immunizations, eyeglasses,
doctor visits, prescription drug coverage, and
hospital care. Based on income levels, states
can impose premiums, deductibles, or fees for
some services. Since coverage and benefits do
vary, it is important that families investigate the
options available in their respective state. For more
information regarding eligibility and coverage, call
1-877-Kids-NOW (1-877-543-7669).
The Abc's of Health Plans
Most health insurance companies offer several
types of programs with many variations in
deductibles, copayments and covered services.
Review the details of any specific plan very
carefully before purchasing to ensure it will meet
you and your family's specific needs. Below is a
description of the different types of plans offered
through insurance companies, starting with the
most restrictive, least expensive plan.
HMO is a Health Maintenance Organization. As
a member of an HMO, you select a primary care
physician from a list of doctors in that HMO's
network. Your primary care physician will be the
first medical provider you call or see for a medical
condition. He or she will make any needed
referrals to a medical specialist. Typically, these
specialists will be part of the HMO network. If you
obtain care without your primary care physician's
referral or obtain care from a non-network
member, you will be responsible for paying the
entire bill (with exceptions for emergency care).
Normally HMOs have a copayment for the visit or
service. This is the most restrictive type of plan.
POS is a Point-of-Service Plan. It is a type of
managed care plan that is an HMO with an outof-
network option. You can decide whether to go
to a network provider and pay a flat dollar or to
an out-of-network provider and pay a deductible
and/or a coinsurance charge.
PPO is a Preferred Provider Organization. As a
member of a PPO, you can use the doctors and
hospitals within the PPO network or go outside of
the network for care. You do not need a referral to
see a specialist. If you obtain care from a medical
provider outside of the PPO network, you will
pay more for the service. For example, a PPO
might pay 90 percent of the cost for a visit with
an in-network doctor but only 70 percent of the
cost for a visit to a non-network doctor. You will
typically pay a copayment for each office visit. You
will usually be responsible for paying an annual
deductible.
Indemnity plan is commonly known as a fee
for service or traditional plan. If you select an
Indemnity plan you have the freedom to visit any
medical provider. You do not need referrals or
authorizations; however, some plans may require
you to precertify for certain procedures. Most
indemnity plans require you to pay a deductible.
After you have paid your deductible, indemnity
policies typically pay a percentage of "usual and
customary" charges for covered services; often
the insurance company pays 80% and you pay
20%. Most plans have an annual out of pocket
maximum and once you've reached this they will
pay 100% of all "usual and customary" charges
for covered services. Many health insurance
companies have moved away from indemnity
plans. This is the least restrictive, therefore the
most expensive type of health plan.
Health Insurance Portability
And Accountability Act of 1996
(HIPPA)
Probably one of the most important and
encompassing federal laws affecting the health
insurance industry was the passage of HIPAA.
We all are susceptible to a variety of events in
life, which may affect health insurance coverage.
Situations such as the onset of a chronic illness
or disabling disease, changing jobs or a business
closing can have adverse consequences when
locating or attempting to keep your health
insurance coverage. HIPAA protects health
insurance coverage for workers' families when
they change or lose their jobs. Due to the fact that
the HIPAA law is very complex and contains many
more provisions than indicated in this writing, we
recommend that you contact your employer's
benefits administrator or your State Insurance
Commissioners office for further information on
how HIPAA can affect you or your family.
Key Provisions
Group Health Insurance – Employees can credit
time spent under their previous employer's plan
satisfying a preexisting exclusion towards the new
employer's plan, as long as they do not have more
than a 63 day break between coverage.
Moving from Group Health to an Individual
Health Plan – If you are no longer eligible for Group
coverage, you are able to obtain coverage with an
Individual health plan, which includes HMO's if:
- You have an aggregate 18 months or more
of previous coverage under a group health,
government or church plan.
- You have had no lapse in coverage longer than
63 days.
- You are not eligible under another group plan,
Medicare or Medicaid.
- You do not have any other health insurance
coverage.
- You have elected and exhausted any eligible
COBRA coverage.
- You were not terminated from your most
recent prior coverage due to non-payment of
premiums or fraud.
Be aware that your state law may provide for
greater protection than HIPAA, but not less than the
minimum requirement mandated by the HIPAA law.
Comparing Plans
It is important to consider specific issues when
deciding on a health insurance policy. You should
compare: the cost of premium, coinsurance,
copayments, deductibles, lifetime maximums, and
the prescription coverage.
Your lifetime maximum (LTM) will differ according
to your health coverage plan. Most LTMs will
range from $250,000 to $1 million. Once you
have exhausted your LTM, you no longer have
health coverage, so it is wise to keep a running
total of the major expenses that affect it such as hospitalizations, surgeries, annual cost of drug
therapy, etc. Also, know the difference between
elective and required procedures and plan
accordingly, as these costs most likely will go
against your lifetime maximum.
Ask such questions as: How are chronic
conditions like primary immunodeficiency
covered within the plan? What about referrals to
specialists? What are the procedures? Do they
have restrictions on prescription drugs?
Words to the Wise
It cannot be emphasized enough that it is critical
for you to be your own best advocate when
dealing with your health plan. First, read your
policy and then ask your personnel department,
the Immune Deficiency Foundation (IDF), and any
other resource you can find, lots of questions. Try
to keep current information concerning the new
rules affecting your policy.
Review your medical bills to check for mistakes;
billing errors occur more often than you might
think. Keep important information such as your
policy number, your ID number, insurer's address
and phone number, and doctor's address and
phone number in one place to refer to whenever
you communicate with your insurer. If there's a
possibility you might reach your lifetime maximum,
please explore the alternatives before your
maximum runs out.
Many employers offer open enrollment once a year
when you may change your coverage to another
plan offered by your employer. Ask your employer
if and when an open enrollment period is offered.
If you have difficulty getting benefits through your
employer, consider coverage through associations,
schools, professional groups, farm groups, or
local chambers of commerce. You may qualify for
individual or group benefits. Document each time you contact your insurer. Get the full name and title
of each person you talk with whenever you contact
your insurer. This information will be important if you
experience difficulties with your coverage and need
to document your situation in writing.
If your problem becomes more complicated, don't
panic. You, and/or your physician, may appeal to
the medical director of the insurance company
and may need to work with the provider to submit
additional justification of your claim. Often, in the
case of primary immunodeficiencies, insurers need
to be educated as to what the condition is and
what the approved forms of treatment are. Most of
the manufacturers of intravenous immune globulin
(IVIG) offer reimbursement support services for
their products and should be an excellent source
of information.
The IDF can refer you to these sources. There
may come a time when an insurance company
terminates your policy. If it does so for any other
reason than bankruptcy, they are required by
state and federal law to find you new coverage.
Enforcing this law is up to the State Insurance
Commissioner. You should contact them especially
if you feel your cancellation is due to a pre-existing
condition. Arbitrary cancellation is illegal.
Conclusion
You could spend a major portion of every waking
day working on insurance issues for yourself or
your family. Some of you are fortunate enough
to never experience problems. Others of you are
in an endless search for insurance coverage or adequate reimbursement. Never hesitate to seek
assistance from resources. There is no such thing
as a stupid question when it comes to you or your
family's well being.
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