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Cost of fetal alcohol spectrum disorders.

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American Journal of Medical Genetics Part C (Semin. Med. Genet.) 127C:42 –50 (2004)
A R T I C L E
Cost of Fetal Alcohol Spectrum Disorders
CHUCK LUPTON,* LARRY BURD, AND RICK HARWOOD
Fetal alcohol syndrome (FAS) is a common identifiable teratogenic cause of mental retardation, neurological
deficit, mental disorders, and developmental disabilities. Accurate estimates of the cost of care for persons with
FAS are essential for appropriate funding of health care, developmental disabilities services, special education,
and other service systems, as well as prioritizing funding of public health prevention efforts. The cost of care for
individuals with FAS can be conceptualized as the annual cost of care for one person or a population, or as the
lifetime cost of care for an individual. Annual cost estimates for the United States range from $75 million in 1984
to $4.0 billion in 1998. Estimates of lifetime cost vary from $596,000 in 1980 to $1.4 million in 1988. After
adjustments for changes in inflation and population, 2002 estimates of total annual cost and lifetime cost are
higher. FAS is increasingly being recognized as a large public health problem with high potential for
the prevention of future cases and for the prevention of excess disability and premature mortality in persons who
are affected. Each day, from 6–22 infants with FAS are born in the United States, and as many as 87–103 more
are born with other impairments resulting from prenatal alcohol exposure. Updated and improved cost data on
FAS should be a research priority. ß 2004 Wiley-Liss, Inc.
KEY WORDS: fetal alcohol syndrome; cost; annual cost of care; lifetime cost of care; prevention
INTRODUCTION
In this paper we provide an overview of
fetal alcohol spectrum disorders
(FASDs), of which fetal alcohol syndrome (FAS) is the most well-known
consequence, and issues pertinent to the
estimation of costs. Since cost information only exists for FAS, our review
presents data on FAS for the annual cost
of care for a population, the lifetime cost
of care per case, and the annual cost of
care per case. We conclude with sugges-
Mr. Lupton is the Deputy Project Director
for Operations of the Substance Abuse and
Mental Health Services Administration
(SAMHSA) Fetal Alcohol Spectrum Disorders
(FASD) Center for Excellence, Rockville,
Maryland.
Dr. Burd is the Director of the North
Dakota Fetal Alcohol Syndrome Center at
the University of North Dakota School of
Medicine and Health Sciences, Grand Forks,
North Dakota.
Mr. Harwood is Vice President, The Lewin
Group, Falls Church, Virginia.
Sponsor: SAMHSA FASD Center for Excellence, U.S. Department of Health and Human
Services; Contract number: 277-01-6068.
*Correspondence to: Chuck Lupton, Deputy Project Director for Operations, SAMHSA
FASD Center for Excellence, 1700 Research
Blvd., Suite 400, Rockville, MD 20850.
E-mail: chuck.lupton@ngc.com
DOI 10.1002/ajmg.c.30015
ß 2004 Wiley-Liss, Inc.
tions for further research on the costs for
all FASDs.
Each year, more than 500,000 fetuses
(about 13% of all births) in the United
States are exposed to alcohol during
pregnancy, most at very low levels and
only early in pregnancy [Centers for
Disease Control, 2002]. The prevalence
of alcohol use decreases during pregnancy
[Stratton et al., 1996; Morse et al., 1997].
However, 3.3% of women continue
to drink throughout their pregnancy on
either a frequent(sevenor more drinksper
week) or binge-drinking (five or more
drinks on any occasion) basis. Annually,
about 130,000 pregnant women in the
United States expose their fetuses to high
levels of alcohol and thus put them at
risk for FAS or other impairments resulting from prenatal alcohol exposure
Annually, about 130,000
pregnant women in the United
States expose their fetuses to
high levels of alcohol and thus
put them at risk for FAS or
other impairments resulting
from prenatal alcohol exposure.
(i.e., fetal alcohol effects (FAE)). Many
of these women also smoke heavily,
creating additional risks for their fetuses
[Stratton et al., 1996; Abel, 1998].
Alcohol use during pregnancy can
have adverse effects on fetal development [Burd and Martsolf, 1989; Abel,
1998]. Severe outcomes include mortality and FAS. The diagnosis of FAS and
some related conditions requires a documented history of prenatal alcohol
exposure. Yet, there are no conclusive
data on the dose, timing, or duration of
exposure that is likely or necessary to
cause FAS or other related impairments
[Abel, 1984; Day et al., 2002; Olney
et al., 2002]. The outcome of exposure
has been difficult to assess due in part to
difficulty in sorting out the respective
contributions of the exposure parameters of dose and timing, genetic
factors influencing susceptibility, protective factors, and lack of agreement on
diagnostic criteria [Stratton et al., 1996;
Abel, 1998; Day et al., 2002; Olney et al.,
2002]. Prenatal alcohol exposure is a
necessary cause of FAS and FAE, but by
itself is not always sufficient to cause FAS
[Burd and Martsolf, 1989; Burd and
Wentz, 1997; Abel, 1998]. Theoretical
models of adverse behaviors and factors
contributing to FAS have been
ARTICLE
described as a multielement causal chain
of interacting factors [Burd and Wentz,
1997; Abel, 1998; Burd et al., 2003].
Risk factors commonly, but not invariably, include smoking, poor diet, heavy
drinking, binge alcohol use, unmarried
status, physical abuse, increased maternal
age, and increased parity [Burd et al.,
1996b, 2003; Abel, 1998].
Prevalence of FAS
FAS was first named in 1973, and
the disorder came to be accepted by
the mid-1980s as the leading identifiable
cause of mental retardation and neurologic deficit in the Western world [Abel
and Sokol, 1986]. A recent review of the
FAS literature concludes that about 10 in
1,000 births (or about 40,000 births per
year) have adverse effects due to maternal alcohol use, of whom 0.5–2 per
1,000 (from 2,000–8,000) per year have
FAS [May and Gossage, 2001]. FAS
prevalence rates have been found to vary
widely in some minority populations
[Burd and Moffatt, 1994; Famy
et al., 1998; May and Gossage, 2001].
When all FASDs (FAS and FAE) are
combined, the prevalence rate has
been estimated to be in the range of
9–10 cases per 1,000 live births
When all FASDs (FAS and
FAE) are combined, the
prevalence rate has been
estimated to be in the range of
9–10 cases per 1,000 live births.
[Sampson et al., 1997; May and Gossage,
2001; Astley, 2002]. These prevalence
rates may be conservative since they
have generally been based on passive,
rather than active, surveillance.
The Phenotype of FAS
The diagnosis of FAS is most easily made
between 4 and 14 years of age, when
the diagnostic signs are most evident.
Attempts to identify FAS in the new-
AMERICAN JOURNAL OF MEDICAL GENETICS (SEMIN. MED. GENET.)
born period have been problematic
[Little et al., 1990]. Many of the
dysmorphic signs of FAS (e.g., short
palpebral fissures, thin upper lip, absent/
indistinct philtrum) may become less
distinct or disappear in late adolescence
and adult life [Streissguth et al., 1991;
Spohr and Steinhausen, 1996]. Thus, in
adolescents or adults, the diagnosis of
FAS can be difficult when it is based on a
physical examination without supporting history, childhood pictures, or other
developmental information. The difficulty of diagnostic certainty reduces the
accuracy of prevalence estimates, and
FAS and FAE may be underdiagnosed
because of concerns about stigma for the
mother.
The Cognitive, Neurologic,
and Behavioral Manifestations
of FAS and FAE
The delineation of FAS and FAE has
been especially problematic [Abel and
Sokol, 1986; Burd and Martsolf, 1989;
Streissguth et al., 1991; Steinhausen
et al., 1994; Sampson et al., 1997; Famy
et al., 1998; Burd et al., 2003]. An
important area of current emphasis is to
determine if prenatal alcohol exposure
results in a unique or clearly definable
behavioral or cognitive pattern of manifestations, which may result in a distinctive behavioral phenotype. Several
neurocognitive features frequently associated with FAS and FAE are learning
disabilities, speech and language delays,
problems with reasoning and judgment,
impairments in abstract thinking,
diminished impulse control, volatile
emotions, poor social skills, and vulnerability to peer pressure.
Increasing attention is also being
given to the role of prenatal alcohol
exposure as an etiologic factor in a
number of other developmental disorders and mental illnesses [Streissguth
et al., 1991; Burd et al., 1996a, 2003;
Famy et al., 1998]. Previous research has
found that over 90% of persons with
FAS have mental health problems and
other indicators of poor fit with societal
expectations [Streissguth et al., 1991].
High rates of mental health problems
have been reported in a sample of
43
affected children and adolescents from
Germany [Steinhausen et al., 1994]. In
this sample the prevalence of these
problems seemed to increase with age.
In a study of 78 patients with FAS or
FAE, 92% received an Axis I diagnosis of
drug or alcohol dependence [Famy et al.,
1998]. Forty-four percent had depression, 20% had bipolar disorder, and 40%
reported other psychiatric symptoms
[Famy et al., 1998]. Individuals with
FAS and FAE frequently have inattention, hyperactivity, and/or impulsivity
problems that are often diagnosed as
attention-deficit/hyperactivity disorder
(ADHD). Vision, hearing, and speech/
language issues are other common
problems for children with FAS.
METHODS AND RESULTS
What Is Known about the Cost
of FASD?
We reviewed the literature to determine
the major elements of cost for individuals with FAS. Published studies using
well-documented approaches fall into
two categories: the total annual cost of
FAS to the nation, and the lifetime cost
of caring for each child born with FAS.
Several studies have been done at the
state level, however, and no estimates
were found for countries other than the
United States.
Annual U.S. Cost Estimates
Over the past 18 years, four welldocumented studies to estimate the
annual cost of FAS in the United States
have been published. They identify costs
by category, such as health care costs,
residential and support services, and
productivity losses.
All three of the lower cost estimates
were done by Abel and Sokol. The
lowest estimate by Abel and Sokol
[1991a] was $75 million for 1984. This
was based on the lowest prevalence
rate of all the studies: 0.33 babies per
1,000 live births. This estimate included
medical treatment for children with FAS
up to age 21 and residential care due
to mental retardation up to age 21.
44
AMERICAN JOURNAL OF MEDICAL GENETICS (SEMIN. MED. GENET.)
Residential care accounted for 77% of
the total cost.
Two other studies by Abel and
Sokol [1987, 1991b] used a prevalence
rate of 1.9 cases per 1,000 live births. In
their second study, they estimated the
total cost to the United States to be $321
million in 1984 for medical treatment
and residential care, with much of the
difference being related to the use of a
prevalence rate six times larger. In their
third study, they estimated the total 1987
annual cost at $250 million. Abel and
Sokol’s third study included corrections
for background rates of low birth weight
and costs normally incurred for housing
and food, regardless of whether an
individual required institutionalization.
None of the studies by Abel and
Sokol included costs of lost productivity,
semi-independent support services (e.g.,
persons living in community settings
with ambulatory care and special education services), or residential services due
to mental retardation after age 21.
The higher range of cost estimates
came from studies by Rice et al. [1990],
Rice [1993], Harwood et al. [1984,
1998], and Harwood [2000]. Rice et al.
estimated 1985 annual costs to be $1.6
billion, using a prevalence rate of 1.9 per
1,000 live births. This cost included neonatal intensive care services and other
treatment and care services up to age 21.
The estimate was based on the Abel
and Sokol approach used for their $321
million estimate. The 1985 estimate by
Rice et al. also included residential care
for mental retardation for persons over
age 21, which accounted for 80% of the
total annual costs. Later, Rice projected
that the total 1990 cost had risen to
$2.1 billion, based on growth in population and increases in health care costs
between 1985 and 1990.
Another estimate comes from a
National Institute on Drug Abuse
(NIDA) and National Institute on Alcohol Abuse and Alcoholism (NIAAA)
study by Harwood et al., who estimated
the 1992 annual cost to be $2.9 billion,
based on the basic approach used by
Harwood and Napolitano [1985], but
using more current data to develop improved estimates [Harwood et al., 1984,
1998; Harwood, 2000]. This study used
a prevalence rate of 2.0 cases per 1,000
live births for recent birth cohorts and a
rate of 1.0 for earlier birth cohorts. It
included treatment and care services to
age 21, home and residential care
services for moderate and severe cases
of mental retardation to age 65, special
education services, and lost productivity.
A projection by Harwood [2000]
from the NIDA/NIAAA study estimated that costs had risen to $4.0 billion
by 1998. This updated estimate adjusted
for the change in national health care
expenditures and the consumer price
index for medical services. It also
adjusted for changes in the adult population in the United States and in the
hourly compensation index for lost
productivity. No adjustment was made
for FAS-specific trends.
Harwood and Napolitano [1985]
estimated 1980 annual costs at $3.2
billion, using a prevalence rate of 1.67
cases per 1,000 live births [see also
Harwood et al., 1984]. Their estimate
included the cost of medical treatment,
home and residential care, special education services, and lost productivity for all
ages.
Table I summarizes the estimates of
annual costs, ranging from $75 million at
the low end to $4.0 billion at the high
end. These diverse estimates reflect the
effect of very different assumptions
about prevalence rates of FAS, application of FAS prevalence rates to recent
and older birth cohorts, and included
cost components. This table also provides adjusted 2002 estimates of the
annual cost based on changes in population growth and inflation in the cost of
medical care services, and exclusion of
lost productivity costs. Even with these
adjustments, great variation in estimates
persists, ranging from $0.2 billion to
$9.3 billion. Finally, adjustments are
made for prevalence rates and residential
care over age 21, with the result being a
much smaller difference among studies.
These final adjustments show that five of
the six studies have estimated costs from
$2.3 billion to $6.0 billion for the year
2002, with only the earliest study being
significantly higher than the others. The
median of these adjusted cost estimates is
$3.6 billion.
ARTICLE
The median of the adjusted cost
estimates is $3.6 billion.
Variance in annual cost estimates
Six major factors account for the
variances in annual cost estimates:
1. Prevalence rates substantially affect
overall costs when costs are based on a
fixed cost per subject. Cost estimates
based on low prevalence rates, such
as Abel and Sokol’s [1991a] 0.33 cases
per 1,000 live births, will be proportionately less than estimates based on
prevalence rates of 1.9–2 cases per
1,000. A key factor is both a description of the inclusion criteria for cases
and how comorbidity is included in
the cost estimates.
2. Differences exist in the estimates of
the types, utilization rates, and costs of
medical care, residential services, and
other services used by individuals
with FAS.
3. Studies that estimate residential and
support services for affected individuals with mental retardation to age
65 reflect much higher costs than
studies that estimate such costs only to
age 21.
4. Inflation accounts for some differences among estimates, although we
have attempted to adjust for this.
5. The knowledge base for developing
cost estimates rapidly increased over
time. Thus, we believe the more
recent estimates should be given more
weight since they have learned from
and built on prior estimates.
6. Estimates including the cost of lost
productivity typically exceed estimates that do not include productivity
costs.
What Is the Total Lifetime
Cost of FAS?
The literature contains only two welldocumented estimates of the total lifetime cost for a person with FAS
(Table II). Harwood and Napolitano
ARTICLE
AMERICAN JOURNAL OF MEDICAL GENETICS (SEMIN. MED. GENET.)
45
TABLE I. Original and Adjusted Estimates of the Total U.S. Annual Cost of Fetal Alcohol Syndrome in Billions of Dollars
Ranked by Prevalence Rate per Thousand*
Original annual
cost estimate
2002 estimate adjusted for
population and inflation
with productivity losses
excludeda
2002 estimate adjusted for
prevalence rate and
residential care over age
21 with productivity
losses excludeda
Source of estimate
Year
Prevalence rate
per thousand
live births
Abel and Sokol
[Abel and Sokol, 1991a]
Harwood and Napolitano
[Harwood et al., 1984]
Abel and Sokol
[Abel and Sokol, 1987]
Abel and Sokol [Abel and
Sokol, 1991b]
Rice et al.
[Rice et al., 1990]
Rice; update of 1985
study [Rice, 1993]
Harwood et al. [Harwood
et al., 1998]
Harwood; update of 1992
study [Harwood, 2000]
1984
0.33
$0.075
$0.18
$4.75
1980
1.67
$3.235
$9.26
$11.09
1984
1.9
$0.321
$0.85
$3.57
1987
1.9
$0.250
$0.55
$2.34
1985
1.9
$1.611
$3.42
$3.60
1990
1.9
$2.089
Not calculated
Not calculated
1992
2.0/1.0b
$2.934
$2.97
$5.95
1998
2.0/1.0b
$4.022
Not calculated
Not calculated
*Source: SAMHSA FASD Center for Excellence, 2003.
a
These columns exclude costs associated with productivity losses for comparison purposes. The far right column shows the results from
adjusting the prevalence rate for all estimates to 2 per 1,000 live births, and adjusting the Abel and Sokol estimates to include residential care
for persons over the age of 21.
b
The first value was used for population cohorts since 1971, and the second value was used for cohorts born prior to that date. This
rudimentary adjustment was due to the increase in drinking by females during the last 75 years.
[1985] estimated lifetime cost at
$596,000 in 1980. If this estimate is
adjusted based on the change in the cost
of medical care services and lost productivity, accounting for inflation, the
adjusted 2002 cost becomes $2.0 million
for each individual with FAS. This is an
average for all persons with FAS; persons
with profound mental retardation have
much higher costs than those who do
not. This $2 million figure is made up of
$1.6 million of medical care services and
$0.4 million for productivity losses.
Figure 1 shows how cumulative lifetime
costs of $2 million for one case of FAS
are spread out over the person’s lifetime.
One prevented case of FAS saves almost
$130,000 in the first 5 years, $360,000 in
10 years, $587,000 in 15 years, and more
than $1 million in 30 years.
In February 1989, the Senate Advisory Council of the Alaska State Legislature estimated the 1988 lifetime cost of
each baby born with FAS at $1.4 million
TABLE II. Original and Adjusted Estimates of the Total U.S. Lifetime Cost for Each Child Born
With Fetal Alcohol Syndrome (FAS*)
Source of estimate
Date
Original estimate of total
U.S. lifetime cost of child
born with FAS
Harwood and Napolitano
[Harwood et al., 1985]
Alaska State Legislature
[Weeks, 1989]
1980
$596,000
$2,010,000
$931,742
1988
$1,373,836
$2,909,785
$1,466,875
*Source: SAMHSA FASD Center for Excellence, 2003.
Adjusted 2002 estimate
of total U.S. lifetime cost
based on inflation
Discounted estimate of total
2002 U.S. lifetime costs after
adjustment for inflation
46
AMERICAN JOURNAL OF MEDICAL GENETICS (SEMIN. MED. GENET.)
Figure 1.
[Weeks, 1989]. This estimate adapted
the general approach used by Harwood
and Napolitano [1985] and based medical care costs on studies by Abel and
Sokol [1991a] and Harwood and Napolitano [1985]. It also included services for
affected children (e.g., developmental
disability services), special education,
social service costs, adult vocational
services, and institutional care for mental
retardation to age 65. The lifetime cost
estimate from Alaska is higher than the
Harwood and Napolitano estimate for at
least three reasons: inflation in the cost of
medical care services from 1980–1988,
the much higher costs for medical care
services in Alaska, and the inclusion of
additional service categories, e.g., child
and youth services, developmental disability services, and adult vocational
services. The cost estimation formula
for Alaska was considered conservative
because of excluded costs: some medical
care and physician services up to age 1,
welfare payments, mental health services,
criminal justice costs, services for mild
physical problems and learning disabilities, or lost productivityof caregivers and
persons with FAS. Because costs in Alaska
are generally higher than national costs,
ARTICLE
Cumulative cost for one case of FAS to age 65.
this estimate is not appropriate for use as a
reliable national figure.
When updated based on the medical services price index, the adjusted
2002 total cost per individual is $2.9
million.
When updated based on the
medical services price index, the
adjusted 2002 total cost per
individual is $2.9 million.
Is State Cost Information
Available?
Limited cost information is available at
the state level. However, four states have
made estimates of the cost of FAS, which
are described below.
South Dakota. The South Dakota
Department of Health estimated that
the yearly cost of taking care of an
individual with FAS ranged from
$10,000 to $30,000 [Stanage et al.,
1983] in 1982. Using incidence rates of
1 and 2 cases of FAS per 1,000 live births
and 12,839 births per year, the 1982
annual cost was estimated to range from
$120,000 to $360,000 (at 1 case per
1,000 ¼ 12 persons) to $240,000 to
$720,000 (at 2 cases per 1,000 ¼ 24
persons). These costs include expenses
only for children born with full FAS.
Based on a 60-year life expectancy, the
estimated costs for FAS range from $7.2
to $43.2 million for each year’s birth
cohort. For instance, if the cost per year
is $10,000 and life expectancy is 60 years,
the lifetime cost per person is $600,000.
If there are 12 births during the year, the
total lifetime cost for this birth cohort
becomes $7.2 million. Other expected
lifetime cost combinations (undiscounted) of prevalence rates and cost
per year are shown below. These cost
combinations do not include costs for
FAS births from prior years.
Prevalence Rate
Cost of care/
person
One case/
thousand
Two cases/
thousand
$10,000/year $7.2 million $14.4 million
$30,000/year $21.6 million $43.2 million
ARTICLE
Alaska. Alaska estimated its cost of
FAS in 1999. The research team started
with a 1995 estimate of $1.4 million
lifetime cost per child with FAS from the
Federal Health Professions Education
Partnership Act of 1998; with adjustments for inflation, the 1999 lifetime
cost was estimated at $1.5 million
[Advisory Board of Alcoholism and
Drug Abuse, 2001]. Based on prevalence
rates of 1.4–2.8 per 1,000 live births,
Alaska’s costs are estimated to range from
$21 million to $42 million for one year’s
birth cohort. These undiscounted lifetime cost estimates include medical
costs, behavior management, and residential services. Residential services
include special education, home care,
speech therapy, and institutional care.
Minnesota. The cost of FAS in
Minnesota was estimated by taking the
state’s proportion of 1985 national costs
($1.6 billion) as estimated by Rice et al.
[1990] and then adjusting it for inflation
of health care costs to 1991. Population
data were used to prorate costs. The
overall annual cost of treating persons
with full FAS in Minnesota was estimated to be $45 million in 1991
[Minnesota Department of Health,
1995]. This annual cost estimate for the
state includes medical treatment and
residential services for persons with
mental retardation. It does not include
social support and education, foster care,
nonsurgical and nonintensive medical
care, juvenile and criminal justice, lost
productivity, and caregiver costs.
AMERICAN JOURNAL OF MEDICAL GENETICS (SEMIN. MED. GENET.)
North Dakota. In North Dakota,
Klug and Burd [2003] used a health
claims database to estimate annual cost
of health care for people from birth
through 21 years of age with FAS in
North Dakota. All private and public
payers in North Dakota supply this
information to the Health Department
Claims Database. Information is not
available on persons who are uninsured
or on some persons served by the Indian
Health Service, which covers about 3%
of North Dakota residents.
Children were classified as having
FAS if they had an International Classification of Diseases, 9th edition (ICD-9)
code of 760.71 [Practice Management
Information Corporation, 1996]. Annual costs of health care by diagnosis
were calculated by averaging the total
yearly cost of all cases over the two-year
period (Table III). Diagnosis-specific
annual costs were calculated by subtracting the average yearly cost of children
without FAS from the cost of children
with FAS. Cumulative cost savings were
defined as a series of costs summed over
consecutive years. The mean annual cost
of health care was $2,842 (n ¼ 45),
which was $2,342 per capita more than
the annual average cost of care for
children in North Dakota (n ¼ 98,991)
who did not have FAS ($500 per
year). Since this cost includes only
medical costs, it is much lower than
other estimates that include special
education and housing costs, which
make up a large percentage of most
other cost estimates.
If one new case of FAS is prevented
each year, $2,342 in health care costs
would be saved the first year [Klug and
Burd, 2003]. If the program continues
for a second year, the cost savings is now
$4,684 (for two years that one child does
not have FAS) plus $2,342 for a new
child. If the program continues for
10 years, the undiscounted cost saving
accumulates to $128,810 (10 years of
cost savings plus 9 years of cost savings
plus 8 years of cost savings, etc.). After
20 years, the cost savings for preventing
one case of FAS each year is nearly half a
million dollars (Table III). Prevention
programs can also reduce the occurrence
of comorbid conditions associated with
FAS. Table III also shows the undiscounted cost savings at 1, 10, and 20
years for five common comorbid conditions. Cost savings are greatest from
preventing cases of developmental disability or seizures in children with FAS.
FAS Prevalence
and Cost Calculator
Cost estimates for other states can
be determined by using the FAS Prevalence and Cost Calculator available
online (http://www.online-clinic.com;
select ‘‘fetal alcohol syndrome’’). This
calculator allows states and provinces to
estimate their prevalence of FAS, FAE,
and alcohol-related birth defects
(ARBDs) and associated costs. This tool
uses current published prevalence estimates for FAS, FAE, and comorbid
conditions (ADHD, heart defects, etc.).
TABLE III. Costs of Health Care for FAS and Related Comorbid Conditions for North Dakota Children From Birth
Through Age 21
Condition
Fetal alcohol syndrome
Attention deficit/hyperactivity disorder
Learning disabilities
Developmental disabilities
Oppositional defiant disorder
Seizures
Source: Klug and Burd, 2003.
47
Cumulative cost savings from
preventing one case per year
Average yearly cost
Extra yearly cost versus child
without the condition
After 10 years
After 20 years
$2,842
$649
$1,302
$2,286
$1,377
$2,181
$2,342
$154
$806
$1,797
$883
$1,689
$128,810
$8,470
$44,330
$98,835
$48,565
$92,895
$491,820
$32,340
$169,260
$377,370
$185,430
$354,690
48
AMERICAN JOURNAL OF MEDICAL GENETICS (SEMIN. MED. GENET.)
The costs utilized in the calculator are
based on North Dakota studies of
the cost of special education, juvenile
justice services, health care costs, adult
corrections, and other service delivery
systems (e.g., foster care and residential
care).
What are the Public
Policy Perspectives?
In discussing the costs of FAS, Harwood
and Napolitano [1985] indicate that
estimation of lifetime costs is central to
the evaluation of the benefits to society
of prevention programs. Bloss [1994]
notes that annual costs are helpful to
describe the extent of the problem.
However, lifetime costs are more useful
from a public policy perspective.
Further, Harwood and Napolitano, as
well as Bloss, note that it is important to
calculate the present discounted value
(PDV) of the stream of lifetime costs
in order to have an appropriate dollar
figure when making public policy decisions about whether to expand prevention services. The PDV can be
viewed as the amount of funds that need
to be deposited today at a given interest
rate (exactly equal to the discount rate)
so that principal and interest will cover
the expected stream of costs over time.
A higher discount rate produces a lower
PDV and vice versa. Thus, a PDV
calculation converts estimated lifetime
cost into a present dollar amount needed
at the time of the child’s birth.
Using the 1980 estimated lifetime
cost of $596,000 per child with FAS and
applying a discount rate of 6%, Harwood
and Napolitano [1985] determined that
the PDV lifetime cost of FAS is
$163,000. Bloss [1994] noted that if the
cost to prevent a birth with FAS was less
than the PDV lifetime cost for that birth,
then expanding prevention services
yielded a net economic gain. However,
the most widely used and recommended
discount rate is now 3% [Gold et al.,
1996]. Based on a 3% discount rate and
the 2002 inflation-adjusted lifetime cost
of $2 million, the PDV lifetime cost is
$932,000. Both of these calculations
demonstrate that programs to prevent
births of children with FAS can be
justified since the cost savings from
prevention are much higher than originally estimated.
Based on a 3% discount rate and
the 2002 inflation-adjusted
lifetime cost of $2 million, the
PDV lifetime cost is $932,000.
Both of these calculations
demonstrate that programs to
prevent births of children with
FAS can be justified since the
cost savings from prevention are
much higher than originally
estimated.
What are the Gaps in Knowledge
About the Costs of FAS?
Much of the work to estimate the costs
of FAS recognizes that full FAS is simply
the one disorder in a group of conditions
caused by prenatal alcohol exposure. It
represents the tip of the iceberg. Other
babies born with other FASD conditions
make up a much larger group, accounting for as many as five times the number
of FAS cases [Astley, 2002]. A recent
review and synthesis of the FAS literature by May and Gossage [2001] estimated that births with FAS may account
for 0.5–2 cases per 1,000 live births,
while all alcohol-affected births are
estimated to be 10 cases per 1,000
[Streissguth et al., 1991]. Sokol et al.
[1980] estimated that the number of
babies born with FAE could be 15 times
the number of babies born with FAS.
However, costs for these FAE individuals have not been included in the cost
estimates reviewed, in part because there
have been little firm data on prevalence
of FAE or its impacts/disabilities, much
less the required services and costs. Thus,
a major need is to determine the costs
associated with this larger group of
alcohol-affected individuals.
A number of specific cost categories
have not been included in annual and
ARTICLE
lifetime costs in the past due to the absence of good data; more recent research
appears to provide a better foundation
for developing such estimates now.
Inclusion of these costs would provide
a more accurate picture. Examples include better information on the costs of
special education and inclusion of costs
for juvenile and criminal justice, substance abuse treatment, mental health
care, and vocational services.
For example, individuals with FAS
often become involved with the juvenile
and criminal justice systems. A recent
study found that 60% of subjects with
FAS or FAE had been in trouble with
the authorities, charged with a crime, or
convicted of a crime [Streissguth et al.,
1996]. However, most cost estimates do
not include law enforcement costs.
National data indicate that the criminal
justice system spent $146 billion in 1999
[U.S. Department of Justice, 1999]:
$65 billion for police/law enforcement,
almost $50 billion for corrections, and
$31 billion for judicial services.
Information on the costs of the
juvenile and criminal justice system of
police, court, juvenile detention, prison,
and parole/probation services for individuals with FAS/FAE are not available.
Costs cannot be estimated because there
are no widely used screening and diagnostic tools to identify the number of
affected persons within these systems.
Yet the costs associated with law enforcement are significant: it can cost almost
$30,000 per year to house an inmate in
federal prison [Hawk, 1995]; some state
prisons spend even more [Keaton, 2001].
Many individuals with FAS also
have substance abuse problems of their
own. Individuals with FAS and FAE
need and use special education and
vocational support services. Thus, future
studies are expected to show higher costs
when these cost categories are included.
Finally, the annual and lifetime cost
estimates are based on national statistics
about the incidence and prevalence of
FAS. Costs may be more variable in
some racial and ethnic groups, with wide
variation in prevalence.
The difficulty in estimating the cost
of services for individuals with FAS is
further compounded by two situations.
ARTICLE
First, in many communities, these individuals do not get appropriate services
and thus cycle through service systems
and incur more costs than necessary in
service systems, including criminal justice, mental health, and physical health
systems. In other cases, they do not
receive needed services, such as special
education and vocational services. Thus,
they do not incur costs of service provision, but constitute a major burden on
the justice and social welfare systems.
In either case, calculating true costs
becomes difficult.
FAS appears to be a predisposing,
if not causal, agent for mental illness
[Steinhausen et al., 1994; Spohr and
Steinhausen, 1996; Stratton et al., 1996;
Burd et al., 1996a, 2003; Abel, 1998].
Caregiver burden/costs are also quite
large. In a North Dakota study of children with severe emotional disorders,
some of whom had FAS, Burd et al.
[2001] reported that the unreimbursed
cost for families was more than $17,000
per year per child. This is a largely
unstudied cost, but the magnitude
describes the severe adverse effects on
families. In future studies of costs of FAS,
this important cost variable should be
included.
DISCUSSION
By most measures, the costs of FAS to
society and for each alcohol-affected
individual are very high. The most
recent estimate from NIAAA is that
FAS cost the United States more than
$4 billion in 1998. The lifetime cost
for each child with FAS is $2 million.
The most recent estimate from
NIAAA is that FAS cost the
United States more than $4
billion in 1998. The lifetime
cost for each child with FAS is
$2 million.
The extremely high costs justify major
prevention efforts that have demon-
AMERICAN JOURNAL OF MEDICAL GENETICS (SEMIN. MED. GENET.)
strated their effectiveness. When the
costs associated with individuals with
FAE are included, the wisdom of
investing in prevention efforts will be
even clearer.
Future studies of the cost of FAS and
related conditions should:
1. Determine the number of children
born with FAE as a ratio to those born
with FAS so that the magnitude of the
problem can be better understood.
Develop better cost estimates of both
FAS and FAE so the entire scope of
the problem can be better understood
and described.
2. Update or identify the cost of each
service system element used by individuals with FAS and other alcoholaffected conditions and ensure that
costs are representative of the United
States. Improve the FAS cost estimates
and develop the first cost estimates of
FAE. Address other issues, such as
epidemiology, phenotype definition,
health economics, necessary services
for individuals who are affected,
whether mortality rates are different
for persons with FAS, and unreimbursed costs of parents or other
caregivers.
More details on the published cost
studies referenced in this article and
numerous unpublished cost estimates
can be found at the website of the FASD
Center for Excellence (http://fascenter.
samhsa.gov).
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