Introduction
One in every 28 infants born in the United States is born
with some type of birth defect -approximately 150,000 babies
each year. Birth defects are abnormalities in structure,
function, or metabolism at birth that can result in physical
or mental disabilities and which can sometimes be fatal.(1)
Because some are less visibly noticeable than others, research
that enables early detection and treatment of birth defects
is critical to providing viable care and a healthy future
for these children. The Trust for America’s Health,
a Washington, D.C.-based advocacy group, notes that, “[b]ecause
the causes of about 70% of all birth defects are unknown,
the public continues to be anxious about whether environmental
pollutants cause birth defects, developmental disabilities,
or other adverse reproductive outcomes.” Data collected
through comprehensive registries can be used to help researchers
understand and potentially mitigate contributing health
and environmental factors.(2)
Birth defects registries aim to study the prevalence and
types of infant defects with the ultimate goal of prevention
and effective treatment. Because many birth defects necessitate
long-term care, they can place a great burden on state health
and welfare programs; registries are an effective way to
help reduce this burden. Today, at least 45 states, the
District of Columbia, and Puerto Rico either have or are
developing registries, which vary by what types of defects
they track, how such defects are detected, and how the information
is used.(3) That number is up
significantly since 1999, when the Pew Environmental Health
Commission issued a report that gave one-third of the states
a failing grade for birth defects tracking because they
lacked any reporting requirements whatsoever. The Pew report
also gave mediocre grades for 25 other states that had registries
in need of serious improvements.(4)
In 2002, the Trust for America’s Health released a
study called “Birth Defects Tracking and Prevention:
Too Many States are Not Making the Grade,” which gave
failing grades to more than half of registries in place
at the time. Thanks to the publicity caused by these reports,
a number of states have taken steps to improve their registries
based on the recommendations provided, raising awareness
about the need for such registries nationwide.(2)(5)
Cancer, which accounted for nearly 23% of all deaths in
the U.S. in 2001 and constituted the second highest cause
of death the same year, is another disease that is often
undetectable in early stages.(6)
Prevention, detection, and treatment can be greatly informed
by accurate, uniform, and reliable data collection. All
50 states in the U.S. currently have or are developing cancer
registries. Most are funded by the National Program of Cancer
Registries (NPCR), established in 1992 by Congressional
mandate and reauthorized in 1998. The Congressional mandate
authorized the NPCR to fund existing and future state registries.
Today, only South Dakota and Tennessee lack existing registries,
but both states began funding and planning for a registry
in the late 1990s.(7) Data collected
by these registries are crucial to learning more about the
causes and effects of different types of cancers and the
risk factors, including environmental factors, associated
with them. Such information can be used to help communities
and workers know their cancer risks and possibly take steps
to reduce those risks, and to help cancer treatment providers
know where to focus their resources.(8)
State birth defects and cancer registries are funded by
appropriations from state legislatures, and may be supported
through private or federal government funds, as in the case
of state cancer registries funded by NPCR. The National
Center on Birth Defects and Developmental Disabilities (NCBDDD),
a division of the Centers for Disease Control and Prevention,
has provided funds for a number of state registries. The
NCBDDD has established Centers for Birth Defects Research
and Prevention in Arkansas, California, Iowa, Massachusetts,
New Jersey, New York, Texas, and Georgia for the purpose
of assimilating research information from multiple states.(9)
Although most states have established such registries through
legislative action, it is not always required and some states
may be able to establish a registry through rulemaking,
generally by adding birth defects to a list of information
that the state health department tracks. The information
below provides more information on state methods of establishing
effective registries.
Effective State Registries
Comprehensive reviews of state birth defects registries
were conducted, in 1999, by the Pew Environmental Health
Commission and, in 2002, by the Trust for America’s
Health. In both studies, only eight states, Arkansas, California,
Georgia, Hawaii, Iowa, Massachusetts, Oklahoma, and Texas,
received an “A” grade for their birth defects
information systems. These top-ranking registries tracked
defects from both stillbirths and live births through at
least 12 months, and had research capacity to track prevalence
trends and potential risk factors.(10)
Some of these notable state registries are highlighted below.
In addition, 45 state cancer registries receive federal
funding by the National Program of Cancer Registries (NPCR),
established in 1992 by Congressional mandate and reauthorized
in 1998. The five states funded through the National Cancer
Institute’s Surveillance, Epidemiology and End Results
(SEER) Program are Connecticut, Hawaii, Iowa, New Mexico,
and Utah. South Dakota and Tennessee are still in the process
of developing cancer registries.
Arkansas
Arkansas’ birth defects registry, the Arkansas
Center for Birth Defects Research and Prevention, was
made official by legislation in 1985, making it one of the
nation’s oldest. The program offers birth defects
prevention and education programs and conducts outbreak
monitoring and cluster investigations. In addition, it collaborates
and shares data with agencies both inside and outside the
state. The Arkansas program has consistently received high
praise; its most common criticisms are that the information
it gathers is not updated quickly enough and the program
does not offer intervention services. The Center is a collaborative
effort between the University of Arkansas for Medical Sciences,
the Arkansas Department of Health, the Arkansas Reproductive
Health Monitoring System, and the Arkansas Children’s
Hospital Research Institute.
The Arkansas
Central Cancer Registry, located within the state Department
of Health’s Division of Chronic Disease, has received
praise and criticism similar to the birth defects registry.
California
California’s original Birth
Defects Monitoring Program was created in 1983 and has
consistently earned high grades in evaluation reports and
studies. The most frequent criticism of the program is that
it uses data from particular counties in order to get a
representative sample of the state rather than collecting
data statewide. The program is administered, funded, and
operated jointly by the California Department of Health
Services and the March of Dimes. Changes to the state’s
Health and Safety Code in 1985 required the implementation
of a population-based cancer reporting system, which has
been in place ever since.
Like its birth defects registry, the California
Cancer Registry has earned high grades. The cancer registry
is a collaborative effort between the State Department of
Health Services, ten regional hospitals, cancer researchers
nationwide, and the Public Health Institute.
In addition, on October 4, 2001, California enacted SB
702, which declared legislative intent to establish
an Environmental Health Surveillance System for tracking
environmental exposures and chronic diseases. The new law
will help California’s registries collect more comprehensive
and useful data regarding connections between health problems
and environmental risks.
Hawaii
The Hawaii
Birth Defects Program (HBDP) was created in 1988 as
an active, population-based system for tracking all major
structural birth defects in babies from birth to age one.
The program is comprehensive and includes data analysis,
extensive reporting, environmental exposure studies, prevention
research, and cluster investigations. The program is operated
jointly by the Hawaii State Department of Health (Family
Health Services Division, Children With Special Needs Branch)
and the Cancer Research Center of Hawaii; in addition, the
Research Corporation of the University of Hawaii works with
the program on research, personnel, and fiscal management
issues.
Hawaii has also maintained a cancer registry, the Hawaii
Tumor Registry, since 1960. The tumor registry collects
data on the entire population. Because of the island’s
diverse population, both registries in Hawaii are an invaluable
resource for information on the history and incidence of
health problems and birth defects in non-white populations.
This information is used nationwide to study how and why
risk factors and survival rates vary between different populations.
The program is administered jointly by the Cancer Research
Center of Hawaii and the Department of Health.
Texas
The Texas
Birth Defect Monitoring Division was created in 1994
under the state Department of Health, Bureau of Epidemiology.
Like other high-ranking registries, the program is population-based
and active, and collects information on birth defects statewide.
In addition to collecting information on all defects from
birth to age one, the program also monitors fetal alcohol
syndrome from birth to age six.
The Texas
Cancer Registry is also administered by the Department
of Health. The registry is operated in a two-tier system
comprised of a central office and four regional registries.
Recently Enacted / Pending Legislation
California
SB
1446, introduced 2/19/04, would require the establishment
of the Interagency Office of Environmental Health Tracking
within the State Department of Health Services’ Division
of Environmental and Occupational Disease Control for the
purpose of implementing the health tracking program, and
set forth the duties of the office.
Status: Re-refered to Senate Appropriations Committee, 5/12/04.
SB
1168, introduced 2/3/04, requires the Division of Environmental
and Occupational Disease Control to establish the Healthy
Californians Biomonitoring Program to assess a fee on a
manufacturer or person who produces toxic chemicals; lists
toxic chemicals subject to this regulation; and, provides
for the establishment of advisory program.
Status: Placed on Senate Appropriations Committee’s
suspense file, 5/10/04.
On September 16, 2003, the California Health Tracking Act
(California
Health and Safe Code, Division 103, Part 1, Chapter 8, Section
104324.25) was enacted. The bill requires the Department
of Health Services, the Environmental Protection Agency,
and the University of California to develop and sign a memorandum
of understanding accessing the feasibility of integrating
existing environmental hazard, exposure, and health outcome
data, and describing how the data correspond to specified
recommendations of a certain working group of technical
experts.
Illinois
SB
2770, introduced 2/5/04, would require the Department
of Public Health, in cooperation with the Illinois Environmental
Protection Agency, to examine whether and to what extend
past environmental exposures might increase the risk of
several chronic diseases, including birth defects, heart
disease, cancer, asthma and other respiratory conditions,
and Parkinson’s Disease.
Status: Referred to Senate Rules Committee, 2/5/04.
Iowa
On April 2, 2004, the Iowa governor signed HF
2362, which expands the state’s birth defects
program to include information on stillbirths (as opposed
to only live births) and directs the program to study and
monitor congenital and inherited disorders.
Kansas
On April 8, 2004, the Kansas governor signed SB
418, establishing a statewide birth defects information
system. Although it had been collecting annual data on the
number of babies born with birth defects, as shown on birth
certificates since 1985, this system did not detect all
incidents of birth defects or collect research data on risk
factors, etc. The newly enacted bill will hopefully enable
the state to monitor infant health more carefully by establishing
an official information tracking system.
Louisiana
On May 31, 2001, the Louisiana governor signed Act
No. 194, which creates the Louisiana Birth Defects Surveillance
System. A birth defects registry was meant to go into effect
August 15, 2001, but, as of 2002, still had not received
funding.
Minnesota
HF
1658 (SF 1575), introduced 5/19/03, would incorporate
additional guidelines into both the state’s cancer
and birth defects registries. The new rule would enable
the parents of a child diagnosed with a cancer or birth
defect to speak with a nurse, who would question them and
provide information regarding possible environmental risk
factors particular to their situation. Interview information
would be used to help the family avoid high-risk practices
and to help the state understand the environmental risk
factors associated with different defects and cancers with
the goal of prevention.
Status: To House Committee on Health and Human Services
Policy, 5/19/03.
Montana
On March 30, 2001, HB
582 was passed. The bill requires the Department of
Public Health and Human Services to provide a feasibility
report to the legislature on the development of a chronic
disease registry.
New Jersey
S
289 / A 1293, introduced 1/13/04, would require the
state to maintain an autism registry in addition to its
current birth defects and cancer registries.
Status: Introduced in the Senate, Referred to Senate Health,
Human Services and Senior Citizens Committee, 1/13/04.
Rhode Island
In July 2003, the Rhode Island governor signed H
5389 and S
105, which provide for the creation of a birth defects
surveillance and information system. Rhode Island has had
a passive birth defects surveillance system in place since
2000 that has been criticized for its collection of information
only on live births.
South Carolina
Passed on 5/11/04, H
4115 enacts the South Carolina Birth Defects Act, which
establishes a birth defects program within the Department
of Health and Environmental Control to promote increased
understanding and the prevention and reduction of birth
defects; provides information and referral services; establishes
the Birth Defects Advisory Council and provides for its
members, powers, and duties; requires the program to conduct
surveillance and monitoring of birth defects and maintain
a central database of this information; requires various
health care providers to provide access to birth defect
information; provides procedures for disclosure of information;
and, provides immunity and confidentiality provisions and
penalties for violations. South Carolina’s Birth Defects
Surveillance and Prevention Program has been in operation
since 1992 and has earned good grades from Pew and the Trust
for America’s Health.
Tennessee
SB
1617 / HB 197, introduced 2/13/03, would create the
Tennessee Birth Defects Registry. Although the state has
passively monitored birth defects information from some
hospitals since 2000, this bill would make the information
more complete and compatible with national standards for
collecting, analyzing, and maintaining birth defects records.
Status: To Senate Committee on General Welfare, Health and
Human Resources, 2/19/03.
Washington
SB
5495, introduced 1/28/03, would establish an environmental
health tracking system that would include tracking birth
defects cases. Washington’s registry has been in effect
since 2000, and received a “D” grade in the
Trust for America’s Health 2002 report. This bill
would require the data collected from existing registries
(cancer and birth defects) to be monitored and used to evaluate
environmental risks and encourage risk prevention practices.
Status: Referred to Senate Committee on Health and Long-Term
Care, 1/28/03.
West Virginia
HB
3181, introduced 1/14/04, would provide for a more effective
and efficient operation of the state’s vital statistics
system, making the system more consistent with national
model legislation. West Virginia has had a passive monitoring
system in place since 1989; this bill would standardize
and improve the program.
Status: To House Committee on Government Organizatio, 1/14/04. |
