Emerging Infectious Diseases: Review of State and Federal Disease
Surveillance Efforts (30-SEP-04, GAO-04-877).			 
                                                                 
The threat posed by infectious diseases has grown. New diseases, 
unknown in the United States just a decade ago, such as West Nile
virus and severe acute respiratory syndrome (SARS), have emerged.
To detect cases of infectious diseases, especially before they	 
develop into widespread outbreaks, local, state, and federal	 
public health officials as well as international organizations	 
conduct disease surveillance. Disease surveillance is the process
of reporting, collecting, analyzing, and exchanging information  
related to cases of infectious diseases. In this report GAO was  
asked to examine disease surveillance efforts in the United	 
States. Specifically, GAO described (1) how state and federal	 
public health officials conduct surveillance for infectious	 
diseases and (2) initiatives intended to enhance disease	 
surveillance. GAO reviewed documents, such as policy manuals and 
reports related to disease surveillance, and interviewed	 
officials from selected federal departments and agencies,	 
including the Departments of Defense (DOD), Agriculture (USDA),  
and Homeland Security (DHS) as well as the Food and Drug	 
Administration (FDA), and the Centers for Disease Control and	 
Prevention (CDC). GAO conducted structured interviews of state	 
public health officials from 11 states. 			 
-------------------------Indexing Terms------------------------- 
REPORTNUM:   GAO-04-877 					        
    ACCNO:   A11187						        
  TITLE:     Emerging Infectious Diseases: Review of State and Federal
Disease Surveillance Efforts					 
     DATE:   09/30/2004 
  SUBJECT:   Disease detection or diagnosis			 
	     Infectious diseases				 
	     Medical information systems			 
	     Public health research				 
	     Reporting requirements				 
	     Intergovernmental relations			 
	     Data collection					 
	     Disease surveillance				 

******************************************************************
** This file contains an ASCII representation of the text of a  **
** GAO Product.                                                 **
**                                                              **
** No attempt has been made to display graphic images, although **
** figure captions are reproduced.  Tables are included, but    **
** may not resemble those in the printed version.               **
**                                                              **
** Please see the PDF (Portable Document Format) file, when     **
** available, for a complete electronic file of the printed     **
** document's contents.                                         **
**                                                              **
******************************************************************
GAO-04-877

United States Government Accountability Office

GAO 	Report to the Chairman, Permanent Subcommittee on Investigations, Committee
                      on Governmental Affairs, U.S. Senate

September 2004

EMERGING INFECTIOUS DISEASES

            Review of State and Federal Disease Surveillance Efforts

GAO-04-877

Highlights of GAO-04-877, a report to the Chairman, Permanent Subcommittee
on Investigations, Committee on Governmental Affairs, U.S. Senate

The threat posed by infectious diseases has grown. New diseases, unknown
in the United States just a decade ago, such as West Nile virus and severe
acute respiratory syndrome (SARS), have emerged. To detect cases of
infectious diseases, especially before they develop into widespread
outbreaks, local, state, and federal public health officials as well as
international organizations conduct disease surveillance. Disease
surveillance is the process of reporting, collecting, analyzing, and
exchanging information related to cases of infectious diseases.

In this report GAO was asked to examine disease surveillance efforts in
the United States. Specifically, GAO described (1) how state and federal
public health officials conduct surveillance for infectious diseases and
(2) initiatives intended to enhance disease surveillance.

GAO reviewed documents, such as policy manuals and reports related to
disease surveillance, and interviewed officials from selected federal
departments and agencies, including the Departments of Defense (DOD),
Agriculture (USDA), and Homeland Security (DHS) as well as the Food and
Drug Administration (FDA), and the Centers for Disease Control and
Prevention (CDC). GAO conducted structured interviews of state public
health officials from 11 states.

September 2004

EMERGING INFECTIOUS DISEASES

Review of State and Federal Disease Surveillance Efforts

Surveillance for infectious diseases in the United States comprises a
variety of efforts at the state and federal levels. At the state level,
state health departments collect and analyze data on cases of infectious
diseases. These data are required to be reported by health care providers
and others to the state. State public health departments verify reported
cases of diseases, monitor disease incidence, identify possible outbreaks
within their state, and report this information to CDC. At the federal
level, agencies and departments collect and analyze disease surveillance
data and maintain disease surveillance systems. For example, CDC uses the
reports of diseases from the states to monitor national health trends,
formulate and implement prevention strategies, and evaluate state and
federal disease prevention efforts. FDA analyzes information on outbreaks
of infectious diseases that originate from foods that the agency
regulates. Some federal agencies and departments also fund and operate
their own disease surveillance systems and laboratory networks and have
several means of sharing surveillance information with local, state, and
international public health partners.

State and federal public health officials have implemented a number of
initiatives intended to enhance disease surveillance, but challenges
remain. For example, officials have implemented and expanded syndromic
surveillance systems, which monitor the frequency and distribution of
health-related symptoms among people within a specific geographic area.
Although syndromic surveillance systems are used by federal agencies and
departments and in all of the states whose officials GAO interviewed,
concerns have been raised about this approach to surveillance.
Specifically, syndromic surveillance systems are relatively costly to
maintain compared to other types of surveillance and are still largely
untested. Public health officials are also implementing initiatives
designed to enhance public health communications and disease reporting.
For example, CDC is working to increase the number of participants using
its public health communication systems. In addition, state public health
departments and CDC are implementing an initiative designed to make
electronic disease reporting more timely, accurate, and complete. However,
the implementation of this initiative is incomplete. Finally, federal
public health officials have enhanced federal coordination on disease
surveillance and expanded training programs for epidemiologists and other
public health experts.

In commenting on a draft of this report, the Department of Health and
Human Services (HHS) said the report captures many important issues in
surveillance. HHS also provided suggestions to clarify the discussion.

www.gao.gov/cgi-bin/getrpt?GAO-04-877.

To view the full product, including the scope and methodology, click on
the link above. For more information, contact Majorie Kanof at (202)
512-7119.

Contents

  Letter

Results in Brief
Background
Disease Surveillance Comprises a Variety of Efforts at the State

and Federal Levels
Public Health Officials Have Implemented Initiatives Intended to

Enhance Disease Surveillance, but Challenges Remain
Concluding Observations
Agency Comments and Our Evaluation

                                       1

                                      3 4

12

27 36 36

Appendix I Scope and Methodology

Appendix II 	Information on Nationally Notifiable Infectious
Diseases and Selected Worldwide Emerging
Infectious Diseases 41

Description of U.S. List of Nationally Notifiable Infectious
Diseases, 2004 41
Selected Worldwide Emerging Infectious Diseases 51

  Appendix III 	Selected List of Systems and Networks Engaged in
  Disease Surveillance 54

BioSense 54
Electronic Laboratory Exchange Network (eLEXNET) 54
Electronic Surveillance System for the Early Notification of

Community-based Epidemics (ESSENCE) 54
Epidemic Information Exchange (Epi-X) 55
Foodborne Disease Active Surveillance Network (FoodNet) 55
Global Outbreak Alert and Response Network (GOARN) 55
Global Public Health Intelligence Network (GPHIN) 55
Health Alert Network (HAN) 56
Infectious Diseases Society of America Emerging Infections

Network (IDSA-EIN) 56
Laboratory Response Network (LRN) 56
National Animal Health Reporting System (NAHRS) 56
National Electronic Disease Surveillance System (NEDSS) 57
National Electronic Telecommunications System for Surveillance

(NETSS) 57
National Retail Data Monitor (NRDM) 57

National Veterinary Services Laboratories (NVSL) 58
PulseNet 58
Real-time Outbreak and Disease Surveillance (RODS) 58
Sexually Transmitted Disease Management Information System

(STD*MIS) 58
Systematic Tracking of Elevated Lead Levels & Remediation
(STELLAR) 58

Appendix IV 	Comments from the Department of Health and Human Services

Appendix V GAO Contacts and Staff Acknowledgments 62

GAO Contacts 62
Acknowledgments 62

Related GAO Products

  Table

Table 1: U.S. List of Nationally Notifiable Infectious Diseases, 2004

  Figure

Figure 1: Selected Emerging Infectious Diseases, 1996-2004

Abbreviations

AIDS acquired immunodeficiency syndrome
BSE bovine spongiform encephalopathy
CDC Centers for Disease Control and Prevention
CSTE Council of State and Territorial Epidemiologists
DHS Department of Homeland Security
DOD Department of Defense
EIP Emerging Infections Program
EIS Epidemic Intelligence Service
ELC Epidemiology and Laboratory Capacity
eLEXNET Electronic Laboratory Exchange Network
Epi-X Epidemic Information Exchange
ESSENCE Electronic Surveillance System for the Early Notification of

Community-based Epidemics FDA Food and Drug Administration FELTP Field
Epidemiology and Laboratory Training Program

FETP Field Epidemiology Training Program
FoodNet Foodborne Disease Active Surveillance Network
GAS group A streptococcus
GOARN Global Outbreak Alert and Response Network
GPHIN Global Public Health Intelligence Network
HAN Health Alert Network
HIV human immunodeficiency virus
HHS Department of Health and Human Services
IDSA-EIN Infectious Diseases Society of America Emerging Infections

Network IEIP International Emerging Infections Program IOM Institute of
Medicine LRN Laboratory Response Network NAHRS National Animal Health
Reporting System NBS NEDSS-Base system NEDSS National Electronic Disease
Surveillance System NETSS National Electronic Telecommunications System
for

Surveillance NRDM National Retail Data Monitor NVSL National Veterinary
Services Laboratories PHIN Public Health Information Network RODS
Real-time Outbreak and Disease Surveillance SARS severe acute respiratory
syndrome STD sexually transmitted disease STD*MIS Sexually Transmitted
Disease Management Information

System STELLAR Systematic Tracking of Elevated Lead Levels &

Remediation STSS streptococcal toxic shock syndrome USAMRIID U.S. Army
Medical Research Institute of Infectious

Diseases USDA U.S. Department of Agriculture vCJD variant
Creutzfeldt-Jakob disease WHO World Health Organization

This is a work of the U.S. government and is not subject to copyright
protection in the United States. It may be reproduced and distributed in
its entirety without further permission from GAO. However, because this
work may contain copyrighted images or other material, permission from the
copyright holder may be necessary if you wish to reproduce this material
separately.

United States Government Accountability Office Washington, DC 20548

September 30, 2004

The Honorable Norm Coleman
Chairman
Permanent Subcommittee on Investigations
Committee on Governmental Affairs
United States Senate

Dear Mr. Chairman:

Infectious diseases account for millions of deaths every year. Although
the
great majority of these deaths occur in developing countries, infectious
diseases are not confined by international borders and therefore present a
substantial threat to populations in all parts of the world, including the
United States. In recent years, the threat posed by infectious diseases
has
grown. New diseases, unknown in the United States just a decade ago,
such as West Nile virus and severe acute respiratory syndrome (SARS),
have emerged, and known infectious diseases once considered in decline
have reappeared with increased frequency. Furthermore, there is always
the potential for an infectious disease to develop into a widespread
outbreak-which could have significant consequences. The Centers for
Disease Control and Prevention (CDC) estimates that if an influenza
pandemic1 were to occur in the United States, it could cause an estimated
314,000 to 734,000 hospitalizations and 89,000 to 207,000 deaths, with
associated costs ranging from $71 to $167 billion.2 In addition to
naturally
occurring infectious disease outbreaks, there is also the threat posed by
the deployment of infectious disease pathogens3 as weapons of war or
instruments of terror.

To detect cases of infectious diseases, especially before they develop
into
widespread outbreaks, local, state, and federal public health officials as

1Pandemics are worldwide epidemics. Influenza pandemics can have
successive "waves" of disease and last for up to 3 years. Three pandemics
occurred in the 20th century: the "Spanish Flu" of 1918 which killed at
least 20 million people worldwide; the "Asian flu" of 1957; and the "Hong
Kong flu" of 1968.

2See Centers for Disease Control and Prevention, Fiscal Year 2005
Justification of Estimates for Appropriations Committees, 172.

3Pathogens are bacteria, viruses, parasites, or fungi that have the
capability to cause disease in humans.

well as international organizations conduct disease surveillance. Disease
surveillance is the process of reporting, collecting, analyzing, and
exchanging information related to cases of infectious diseases. Disease
surveillance provides national and international public health authorities
with information for planning and managing efforts to control these
diseases. In the mid-1990s, public health experts in the United States and
abroad determined that infectious disease surveillance was inadequate
worldwide, and both the World Health Assembly and the President of the
United States called for concerted action to develop effective disease
surveillance and response capabilities.4 In 2003, the Institute of
Medicine (IOM) of the National Academies published a report that
acknowledged that the United States has taken some important steps over
the past decade to improve its disease surveillance and response
capabilities, but also emphasized the need for continued action.5

You asked us to examine disease surveillance efforts in the United States.
Specifically, we describe (1) how state and federal public health
officials conduct surveillance for infectious diseases and (2) initiatives
intended to enhance disease surveillance.

To describe how state and federal public health officials conduct disease
surveillance, we reviewed reports, state policy manuals, journal articles,
and various documents related to disease surveillance. We conducted
structured interviews of state public health officials from 11 states;
interviewed representatives from professional associations representing
state and local public health officials, such as the Association of State
and Territorial Health Officials; and interviewed officials from selected
federal agencies and departments-CDC, the Department of Defense (DOD), the
Food and Drug Administration (FDA), the U.S. Department of Agriculture
(USDA), and the Department of Homeland Security (DHS). To identify
initiatives intended to enhance disease surveillance, we reviewed and

4See World Health Assembly Resolution 48.13m, Communicable Disease
Prevention and
Control: New Emerging and Re-Emerging Infectious Diseases (Geneva,
Switzerland:
May 12, 1995); Emerging Infections: Microbial Threats to Health in the
United States,
Institute of Medicine (Washington, D.C.: 1992); Infectious Disease-A
Global Health
Threat, Report of the National Science and Technology Council, Committee
on
International Science, Engineering, and Technology, Working Group on
Emerging and Re
emerging Infectious Diseases (Washington, D.C.: Sept. 1995); and
Presidential Decision
Directive, Addressing the Threat of Emerging Infectious Diseases (PDD,
NSTC-7: June
1996).

5Institute of Medicine, Microbial Threats to Health: Emergence, Detection
and Response (Washington, D.C.: 2003).

analyzed documents, such as journal articles on states' innovative
approaches to enhancing disease surveillance. We also interviewed state
public health officials from the 11 states about their assessment of
enhancements and continuing weaknesses in disease surveillance efforts. We
also reviewed and analyzed related federal documents, such as policy
directives and annual reports, and we interviewed relevant federal health
officials. We focused our review of initiatives intended to enhance
surveillance on those currently under way or implemented since 2001.
Appendix I contains more details about our scope and methodology. We
conducted our work from October 2003 through July 2004 in accordance with
generally accepted government auditing standards.

                                Results in Brief

Surveillance for infectious diseases in the United States comprises a
variety of efforts at the state and federal levels. At the state level,
state health departments collect and analyze data on cases of infectious
diseases. These data are required to be reported by health care providers
and others to the state. The diseases that must be reported vary by state.
State public health departments verify reported cases of diseases, monitor
disease incidence, identify possible outbreaks within their state, and
report this information to CDC. At the federal level, agencies and
departments collect and analyze disease surveillance data and maintain
disease surveillance systems. For example, CDC uses the reports of
diseases from the states to monitor national health trends, formulate and
implement prevention strategies, and evaluate state and federal disease
prevention efforts. FDA analyzes information on outbreaks of infectious
diseases that originate from foods that the agency regulates. Some federal
agencies and departments also conduct disease surveillance using disease
surveillance systems that they operate or fund. For example, DOD has a
syndromic surveillance system called the Electronic Surveillance System
for the Early Notification of Community-based Epidemics (ESSENCE). ESSENCE
and other syndromic surveillance systems gather data on patient symptoms
looking for anomalous increases in the frequency of these symptoms that
may indicate the presence of an infectious disease outbreak. CDC, FDA,
USDA, and DOD also support networks of laboratories that test specimens
and develop diagnostic tests for identifying infectious diseases and
biological or chemical agents. As part of their role in national disease
surveillance efforts, some federal agencies and departments also share
information with local, state, and international partners through
different means such as from public Web sites or secure Web-based
communication systems. Finally, some federal agencies and departments
provide training, technical assistance, and funding to support state and
international disease surveillance efforts.

State and federal public health officials have implemented a number of
initiatives intended to enhance disease surveillance, but challenges
remain. For example, officials have implemented and expanded syndromic
surveillance systems, such as the Real-time Outbreak and Disease
Surveillance (RODS) system. RODS is used by officials from four of the
state health departments we interviewed and automatically gathers data on
patient symptoms from hospital emergency room visits. Although syndromic
surveillance systems are used by federal agencies and departments and by
all of the states we interviewed, concerns have been raised about this
approach to surveillance. Specifically, syndromic surveillance systems are
relatively costly to maintain compared to other types of disease
surveillance and are still largely untested. Public health officials have
also implemented initiatives designed to enhance public health
communications and disease reporting. For example, CDC is working to
increase the number of participants using its public health communication
systems. In addition, state public health departments and CDC have taken
steps intended to enhance the information technology used for disease
reporting. CDC introduced the National Electronic Disease Surveillance
System (NEDSS), which is designed to make electronic disease reporting
more timely, accurate, and complete, in part, by consolidating the 60-100
different systems used by state health departments to report disease data
to CDC. However, initiatives designed to enhance public health
communications and disease reporting are incomplete. Finally, federal
public health officials have enhanced federal coordination on disease
surveillance and expanded training programs for epidemiologists and other
public health experts.

In commenting on a draft of this report, the Department of Health and
Human Services (HHS) said the report captures many important issues in
surveillance. HHS also provided suggestions to clarify the discussion or
incorporate additional information. HHS's comments are reprinted in
appendix IV. In providing oral comments on a draft of this report, DOD
said it concurred and did not have any substantive comments. USDA said it
had no comments on the draft report. HHS and USDA provided technical
comments that we incorporated where appropriate.

Background 	IOM defines an emerging infectious disease as either a newly
recognized, clinically distinct infectious disease or a known infectious
disease whose reported incidence is increasing in a given place or among a
specific population. More than 36 newly emerging infectious diseases were
identified between 1973 and 2003, and new emerging infectious diseases
continue to be identified. Figure 1 provides information on selected

emerging infectious diseases compiled by the World Health Organization
(WHO) and CDC.

Figure 1: Selected Emerging Infectious Diseases, 1996-2004

According to CDC, nearly 70 percent of emerging infectious disease
episodes during the past 10 years have been zoonotic diseases, which are
diseases transmitted from animals to humans. The West Nile virus, which
was first diagnosed in the United States in 1999, is an example of a
zoonotic disease. The West Nile virus can cause encephalitis, or
inflammation of the brain. Mosquitoes become infected with West Nile virus
when they feed on infected birds, and infected mosquitoes transmit the
virus to humans and animals by biting them. Other zoonotic diseases
include SARS, avian influenza, human monkeypox, and variant
Creutzfeldt-Jakob disease (vCJD), which scientists believe is linked to
eating beef from cattle infected with bovine spongiform encephalopathy
(BSE) and is also called mad cow disease. Surveillance for zoonotic
diseases requires collaboration between animal and human disease
specialists.6

Disease surveillance provides information for action against infectious
disease threats. Basic infectious disease surveillance activities include
detecting and reporting cases of disease, analyzing and confirming this
information to identify possible outbreaks or longer-term trends, and
applying the information to inform public health decision-making. When
effective, surveillance can facilitate (1) timely action to control
outbreaks, (2) informed allocation of resources to meet changing disease
conditions and other public health threats, and (3) adjustment of disease
control programs to make them more effective.

Responsibilities for In the United States, responsibility for disease
surveillance is shared- Disease Surveillance involving health care
providers;7 more than 3,000 local health departments

6The initial outbreak of the West Nile virus in the United States in 1999
demonstrated this need. An infectious disease specialist first reported
two cases of an unusual neurological disease, which she initially
suspected to be botulism, to the New York City Department of Health.
Further investigation and tests suggested that her patients had a type of
viral encephalitis that might have been transmitted by an insect. The
Department of Health subsequently consulted with experts at CDC and an
entomologist from the American Museum of Natural History in New York and
initially misdiagnosed the disease as St. Louis encephalitis. More than a
month after the initial outbreak, the disease was correctly diagnosed as
West Nile virus when it was discovered that a biologist at the New York
State Department of Environmental Conservation and a veterinary
pathologist at the Bronx Zoo had found several dead birds that had died of
viral encephalitis.

7For this report, the term "health care providers" includes all health
care professionals, such as physicians and nurses, as well as health care
institutions, such as hospitals and clinics.

Health Care Providers

State and Local Health Departments

including county, city, and tribal health departments; 59 state and
territorial health departments; more than 180,000 public and private
laboratories; and public health officials from four federal departments.
Although state health departments have primary responsibility for disease
surveillance in the United States, health care providers, local health
departments, and certain federal departments and agencies share this
responsibility. In addition, the United States is a member of WHO, which
is responsible for coordinating international disease surveillance and
response efforts.

Health care providers are responsible for the medical diagnosis and
treatment of their individual patients, and they also have a
responsibility to protect public health-a responsibility that includes
helping to identify and prevent the spread of infectious diseases. Because
health care providers are typically the first health officials to
encounter cases of infectious diseases-and have the opportunity to
diagnose them-these professionals play an important role in disease
surveillance. Generally, state laws or regulations require health care
providers to report confirmed or suspected cases of notifiable diseases to
their local and/or state health department. A notifiable disease is an
infectious disease for which regular, frequent, and timely information on
individual cases is considered necessary for the prevention and control of
the disease. States publish a list of the diseases they consider
notifiable and therefore subject to reporting requirements. According to
IOM, most states also require health care providers to report any unusual
illnesses or deaths-especially those for which a cause cannot be readily
established.8

States, through the use of their state and local health departments, have
principal responsibility for protecting the public's health and therefore
take the lead in conducting disease surveillance and supporting response
efforts. Generally, local health departments are responsible for
conducting initial investigations into reports of infectious diseases.
They employ epidemiologists,9 physicians, nurses, and other professionals.
Local health

8The requirement to report the clinically anomalous is particularly
important for the detection of emerging infectious diseases, many of which
may be unfamiliar to health care providers.

9Epidemiologists are specialists who study how diseases are distributed
and transmitted in populations and the factors that influence or determine
this distribution and transmission. Epidemiologists at state health
departments are often responsible for analyzing data collected through
disease reporting systems, conducting outbreak investigations, and
designing and evaluating disease prevention and control efforts.

Federal Agencies and Departments

departments are also responsible for sharing information they obtain from
providers or other sources with their state department of health. State
health departments are responsible for collecting surveillance information
from across their state, coordinating investigations and response efforts,
and voluntarily sharing surveillance data with CDC and others.

Several federal agencies and departments are involved in disease
surveillance. For example,

o  	CDC, an agency in HHS, is charged with protecting the nation's public
health by directing efforts to prevent and control diseases and responding
to public health emergencies. It has primary responsibility for conducting
national disease surveillance and developing epidemiological and
laboratory tools to enhance disease surveillance. CDC also provides an
array of technical and financial support for state infectious disease
surveillance efforts.

o  	FDA, which is also a part of HHS, is responsible for protecting the
public health by ensuring that domestic and imported food products (except
meat, poultry, and certain processed egg products) are safe and properly
labeled. It is also responsible for ensuring that all drugs and feeds used
in animals are safe, effective, and properly labeled and produce no health
hazards when used in animals that produce foods for humans. FDA enforces
food safety laws by inspecting food production establishments and
warehouses and collecting and analyzing food samples for microbial
contamination that could lead to foodborne illnesses.

o  	USDA is responsible for protecting and improving the health and
marketability of animals and animal products in the United States by
preventing, controlling, and eliminating animal diseases. USDA is also
responsible for regulating veterinary vaccines and other similar products.
USDA undertakes disease surveillance and response activities to protect
U.S. livestock, ensure the safety of international trade, and contribute
to the national zoonotic disease surveillance effort. In addition, USDA is
responsible for ensuring that meat, poultry, eggs, and certain processed
egg products are safe and properly labeled and packaged. USDA establishes
quality standards and conducts inspections of processing facilities in
order to safeguard certain animal food products against infectious
diseases that pose a risk to humans.

o  	DOD, while primarily responsible for the health and protection of its
service members, contributes to global disease surveillance, training,
research, and response to emerging infectious disease threats.

o

                           World Health Organization

DHS's mission involves, among other things, protecting the United States
against terrorist attacks. One activity undertaken by DHS is to coordinate
the surveillance activities of federal agencies and departments related to
national security.10

While national governments have primary responsibility for disease
surveillance and response within their country, WHO plays a central role
in coordinating international surveillance and response efforts. An agency
of the United Nations, WHO administers the International Health
Regulations, which outline WHO's role and the responsibility of member
states in preventing the global spread of infectious diseases. Adopted in
1951 and last modified in 1981, the International Health Regulations
require, among other things, that WHO member states report the incidence
of three diseases within their borders-cholera, plague, and yellow fever.
There are currently proposed revisions to these regulations that will
expand the scope of reporting beyond the current three diseases to include
all events potentially constituting a public health emergency of
international concern.11 WHO is the agency that serves as the focal point
for international information on these diseases as well as others, and the
agency also helps marshal resources from member states to control
outbreaks within individual countries or regions. In addition, WHO works
with national governments to improve their surveillance capacities
through-for example-assessing and redesigning national surveillance
strategies, offering training in epidemiologic and laboratory techniques,
and emphasizing more efficient communication systems.

10DHS officials told us it is only beginning these efforts and therefore
its roles and responsibilities for the coordination of surveillance
activities related to national security are still evolving.

11Efforts to revise the International Health Regulations began in 1995,
and the revised regulations are scheduled to be ready for submission to
the World Health Assembly, the governing body of WHO, in May 2005. As part
of the revision process, WHO is considering criteria to determine whether
an outbreak is serious, unexpected, and likely to spread internationally.
Furthermore, the draft regulations would broaden the definition of a
reportable disease to include significant illness caused by biological,
chemical, or radionuclear sources.

  Disease Surveillance Comprises a Variety of Efforts at the State and Federal
  Levels

Disease surveillance comprises a variety of efforts at the state and
federal levels. At the state level, state health departments collect and
analyze data on notifiable diseases submitted by health care providers and
others, although the diseases considered notifiable and the requirements
for reporting them vary by state. State-run laboratories conduct testing
of samples for clinical diagnosis and participate in special clinical or
epidemiologic studies. State public health departments verify cases of
notifiable diseases, monitor disease incidence, and identify possible
outbreaks within their state. At the federal level, agencies and
departments collect and analyze surveillance data gathered from the states
and from international sources. Some federal agencies and departments also
support their own national surveillance systems and laboratory networks
and have several means of sharing surveillance information with local,
state, and international public health partners. Finally, some federal
agencies and departments support state and international surveillance
efforts by providing training and technical expertise.

    States Collect and Report Data on Notifiable Diseases, Although the Diseases
    Considered Notifiable and the Reporting Requirements Vary by State

To conduct disease surveillance at the state level, state public health
officials collect reports on cases of notifiable diseases from health care
providers and others. Both the diseases considered notifiable and the
requirements for reporting them vary by state. Most states have their list
of notifiable diseases approximate a national list of notifiable diseases
maintained and revised by the Council of State and Territorial
Epidemiologists (CSTE) in collaboration with CDC.12 (See table 1 for the
2004 national list of notifiable diseases maintained by CSTE.) This
national list is reviewed annually and revised periodically.13 State lists
of notifiable diseases generally include cholera, plague, and yellow
fever-consistent with WHO's International Health Regulations. On the other
hand, according to state and federal health officials, states modify their
list of notifiable diseases to reflect the public health needs of their
region. States may include diseases on their state list that impact their
state but do not appear on the national list. For example, one border
state includes the gastrointestinal disease amebiasis-a disease most often
found in the United States among immigrants from developing countries-in
its state list of notifiable diseases. However, amebiasis is not included
on the

12CSTE is a professional organization of public health epidemiologists
from every U.S. state and territory, as well as Canada and Great Britain.

13For example, a disease might be added to the list as a new pathogen
emerges, or a disease might be deleted as its incidence declines.

current national list of notifiable diseases. Conversely, states may
exclude diseases that are on the national list but have little relevance
for their state. For example, although Rocky Mountain spotted fever is
listed on the national list of notifiable diseases, it was excluded from
one state's list we reviewed because relatively few cases of this disease
are reported in that area. Appendix II provides a description of diseases
on the national notifiable disease list and other selected emerging
infectious diseases.

Table 1: U.S. List of Nationally Notifiable Infectious Diseases, 2004

Acquired immunodeficiency syndrome (AIDS) Lyme disease

Anthrax Malaria

Botulism Measles

o  Botulism, foodborne Meningococcal disease

o  Botulism, infant Mumps

o  Botulism, other (wound & unspecified) Pertussis

Brucellosis Plague

Chancroid Poliomyelitis, paralytic

Chlamydia trachomatis, genital infections Psittacosis

Cholera Q Fever

Coccidioidomycosis Rabies

Cryptosporidiosis  o  Rabies, animal

Cyclosporiasis  o  Rabies, human

Diphtheria Rocky Mountain spotted fever

Ehrlichiosis Rubella

o  Ehrlichiosis, human granulocytic Rubella, congenital syndrome

o  Ehrlichiosis, human monocytic Salmonellosis

o  Ehrlichiosis, human, other, or unspecified agent Severe acute
respiratory syndrome-associated

Encephalitis/meningitis, Arboviral coronavirus (SARS-CoV) disease

o  	Encephalitis/meningitis, California Shigellosis serogroup viral
Smallpox

o  Encephalitis/meningitis, eastern equine Streptococcal disease,
invasive, Group A

o  Encephalitis/meningitis, Powassan Streptococcal toxic-shock syndrome

o  Encephalitis/meningitis, St. Louis Streptococcus pneumoniae, drug
resistant,

o  Encephalitis/meningitis, western equine invasive disease

o  Encephalitis/meningitis, West Nile Streptococcus pneumoniae, invasive
in children Enterohemorrhagic Escherichia coli <5 years

o  Enterohemorrhagic Escherichia coli, O157:H7 Syphilis

o  	Enterohemorrhagic Escherichia coli, shiga  o  Syphilis, primary toxin
positive, serogroup non-O157  o  Syphilis, secondary

o  Enterohemorrhagic Escherichia coli, shiga  o  Syphilis, latent

toxin + (not serogrouped)  o  Syphilis, early latent Giardiasis  o 
Syphilis, late latent Gonorrhea  o  Syphilis, latent unknown duration

Haemophilus influenzae, invasive disease  o  Neurosyphilis Hansen disease
(leprosy)  o  Syphilis, late, non-neurological

Hantavirus pulmonary syndrome Syphilis, congenital

Hemolytic uremic syndrome, post-diarrheal  o  Syphilitic Stillbirth

Hepatitis, viral, acute Tetanus

o  Hepatitis A, acute Toxic-shock syndrome

o  Hepatitis B, acute Trichinosis

o  Hepatitis B virus, perinatal infection Tuberculosis

o  Hepatitis C, acute Tularemia

Hepatitis, viral, chronic Typhoid fever

o  Chronic Hepatitis B Vancomycin-intermediate Staphylococcus

o  Hepatitis C virus infection (past or present) aureus (VISA)

            HIV infection Vancomycin-resistant Staphylococcus aureus

o  HIV infection, adult (>=13 years) (VRSA)

o  HIV infection, pediatric (<13 years) Varicella (morbidity)

Legionellosis Varicella (deaths only)

Listeriosis Yellow fever

Source: Council of State and Territorial Epidemiologists and Centers for
Disease Control and Prevention.

States also vary in their requirements for who should report notifiable
diseases, and the deadlines for reporting these diseases after they have
been diagnosed vary by disease. Officials from the 11 states we
interviewed told us that, in addition to health care providers, they
require clinical laboratories to report notifiable diseases. On the other
hand, some-but not all-of the11 states have expanded the responsibility
for reporting suspected notifiable diseases. Depending on the state, those
required to report suspected notifiable diseases can include
veterinarians, day care centers, hotels, and food service establishments.
Penalties for not reporting a notifiable disease vary by state. For
example, failing to report a notifiable disease in one state is a
misdemeanor, and upon conviction, violators may be fined from $50 to
$1,000 and/or may be imprisoned for up to 90 days. In another state, the
penalty ranges from $25 to $300. Depending on the contagiousness or
virulence of the disease, some diseases have to be reported more quickly
than others. For example, in one state, botulism must be reported
immediately after a case or suspected case is identified, while chronic
hepatitis B must be reported within one month of its identification.14
Similarly, in another state, Q fever

14Botulism is a bacterial disease that is spread through the ingestion of
contaminated food. It is a muscle-paralyzing disease that can cause a
person to stop breathing and may result in death. In contrast, chronic
hepatitis B is a viral disease affecting the liver that is transmitted
through contact with blood or body fluids.

must be reported within one working day, while gonorrhea must be reported
within one week.15

Health care providers rely on a variety of public and private laboratories
to help them diagnose cases of notifiable diseases. In some cases only
laboratory results can definitively identify pathogens. Every state has at
least one state public health laboratory to support its infectious
diseases surveillance activities and other public health programs. State
laboratories conduct testing for routine surveillance or as part of
clinical or epidemiologic studies. For rare or unusual pathogens, these
laboratories provide diagnostic tests that are not always available in
commercial laboratories. For more common pathogens, these laboratories
provide testing using new technologies that still need controlled
evaluation. State public health laboratories also provide specialized
testing for lowincidence, high-risk diseases, such as tuberculosis and
botulism. Results from state public health laboratories are used by
epidemiologists to document trends and identify events that may indicate
an emerging problem.

Upon diagnosing a case involving a notifiable disease, local health
providers and others who report notifiable diseases are required to send
the reports to state health departments16 through a variety of state and
local disease reporting systems, which range from paper-based reporting to
secure, Internet-based systems. Our interviews of public health officials
in 11 states found that about half of these states have systems that allow
public health care providers to submit reports of notifiable diseases to
their state health department over the Internet. For example, state
officials in one state we interviewed said their public health department
has supported a state-wide Internet-based electronic communicable disease
reporting and outbreak alert system since 1995. Officials in another state

15Q fever is a zoonotic disease that became a notifiable disease in 1999.
Infection of humans usually occurs through inhalation of the
disease-causing bacteria. Q fever is difficult to diagnose and this highly
infectious agent is resistant to heat and drying. This agent could be
developed for use in biological warfare and is considered a potential
terrorist threat. In contrast, gonorrhea is a sexually transmitted disease
with symptoms that can usually be treated with a single dose of
antibiotics.

16In some cases, depending on state law, providers and others report first
to local health departments, which report the disease information to the
state health department. Local health departments may also conduct their
own follow-up investigations into reports of notifiable diseases.

told us that since 2002, the state has had a secure statewide Web-based
hospital, laboratory, and physician disease-reporting system.

State health officials conduct their own analysis of disease data to
verify cases, monitor the incidence of diseases, and identify possible
outbreaks. States voluntarily report their notifiable disease data to CDC,
using multiple and sometimes duplicative systems. For example, state
officials currently report information on gonorrhea to CDC through two CDC
systems: the Sexually Transmitted Disease Management Information System
(STD*MIS) and the National Electronic Telecommunications System for
Surveillance (NETSS). STD*MIS is a national electronic surveillance system
that tracks sexually transmitted diseases, including gonorrhea throughout
the United States. NETSS is a computerized public health information
system used for tracking notifiable diseases. Although states are not
legally required to report information on notifiable diseases to CDC, CDC
officials explained the agency makes such reporting from the states a
prerequisite for receiving certain types of CDC funding. Appendix III
provides additional information on NETSS and other types of systems used
for disease surveillance.

    Federal Agencies and Departments Conduct and Support Disease Surveillance in
    a Variety of Ways

Federal Agencies and Departments Collect and Analyze Surveillance Data
Gathered by States

In partnership with states, the federal government also has a key role in
disease surveillance. Federal agencies and departments collect and analyze
national disease surveillance data and maintain disease surveillance
systems. Federal agencies and departments become involved in investigating
the causes of infectious diseases and maintain their own laboratory
facilities. Federal agencies and departments also share disease
surveillance information. In addition, federal agencies and departments
provide funding and technical expertise to support disease surveillance
efforts at the state, local, and international levels.

One way federal agencies and departments support disease surveillance is
by collecting and analyzing surveillance data gathered by the states. CDC,
for example, analyzes the reports it receives from state health
departments on cases of notifiable diseases in humans. CDC uses the
reports from the states to monitor national health trends, formulate and
implement prevention strategies, and evaluate state and federal disease
prevention efforts. The agency publishes current data on notifiable
diseases in its

Morbidity and Mortality Weekly Report.17 Like CDC, USDA also collects
surveillance data from the states. Specifically, USDA collects information
from participating state veterinarians on the presence of specific
confirmed clinical diseases in specific livestock, poultry, and
aquaculture species in the United States. State animal health officials
obtain this information from multiple sources-including veterinary
laboratories, public health laboratories, and veterinarians-and report
this information to the National Animal Health Reporting System (NAHRS).18
Similarly, FDA, often in cooperation with CDC, receives and interprets
state data. For example, FDA officials told us they analyze state
information from CDC on outbreaks of infectious diseases that originate
from foods that FDA regulates. FDA then uses this information to trace the
regulated food back to its origin and investigate possible sources of
contamination. In addition, FDA and CDC interpret data on emerging
infectious diseases to establish safeguards to minimize the risk of
infectious disease transmission from regulated biological products, such
as blood and vaccines.

Federal agencies and departments also collect and analyze information from
international sources. For example, CDC and DOD obtain information on
potential outbreaks from WHO. According to CDC, in many cases the initial
alert of potential outbreaks is reported to WHO through the Global Public
Health Intelligence Network (GPHIN), a system developed by Canadian health
officials and used by WHO since 1997.19 GPHIN is an Internet-based
application that searches more than 950 news feeds and discussion groups
around the world in the media and on the Internet. WHO then verifies the
reported outbreak and, if necessary, notifies the global health community.
About 40 percent of the

17The Morbidity and Mortality Weekly Report may include weekly and annual
tables on nationally notifiable diseases, periodic surveillance summaries
on a wide variety of conditions, and articles on acute infectious disease
outbreaks.

18NAHRS is a collaborative program with USDA, the U.S. Animal Health
Association, the American Association of Veterinary Laboratory
Diagnosticians, and participating states. State participation is voluntary
and at the end of calendar year 2003, 40 states were active participants
in the system, and 5 states were developing plans to begin reporting.

19GPHIN is a part of WHO's Global Outbreak Alert and Response Network
(GOARN). GOARN is the primary mechanism by which WHO mobilizes technical
resources for the investigation of, and response to, disease outbreaks of
international importance.

Federal Agencies and Departments Operate and Fund Disease Surveillance
Systems

approximately 200 outbreaks investigated and reported to WHO each year
come from the GPHIN.20

In addition to these formal mechanisms for collecting and analyzing data,
federal public health officials stressed the importance of obtaining
information through their contacts at state and local health departments,
other federal agencies and departments, foreign ministries of health, or
other international organizations. For example, according to state public
health officials, CDC learned of last year's monkeypox outbreak in one
state through a phone call from the state public health department
officials. After this initial contact, the state health department
officials, in collaboration with officials from CDC, arranged a conference
call that included federal officials from CDC and USDA, state and local
health department officials, health care providers, and hospital
epidemiologists to further share information on the outbreak.

Some federal agencies and departments conduct disease surveillance using
disease surveillance systems they operate or fund. These systems gather
data from various locations throughout the country to monitor the
incidence of infectious diseases. These systems supplement the data on
notifiable diseases collected by states and monitor surveillance
information states do not collect. In general, these surveillance systems
are distinguished from one another by the types of infectious diseases or
syndromes they monitor and the sources from which they collect data. Some
surveillance systems, known as sentinel surveillance systems, rely on
groups of selected health care providers who have agreed to routinely
supply information from clinical settings on targeted diseases. Other
systems, known as syndromic surveillance systems, monitor the frequency
and distribution of health-related symptoms-otherwise known as
syndromes-among people within a specific geographic area.21 Syndromic
surveillance systems are designed to detect anomalous increases22 in
certain syndromes, such as skin rashes, that may indicate the beginning of

20U.S. General Accounting Office, Emerging Infectious Diseases: Asian SARS
Outbreak Challenged International and National Responses, GAO-04-564
(Washington, D.C.: Apr. 28, 2004).

21Some syndromic surveillance systems monitor data from hospital and
emergency room admissions or data from over-the-counter drug sales. Other
data sources may include poison control centers, health plan medical
records, first aid stations, emergency medical service data, insurer
claims, and discharge diagnosis information.

22Some increases in symptoms are not anomalous, such as those associated
with influenza during influenza season.

an infectious disease outbreak.23 Because these systems monitor symptoms
and other signs of disease outbreaks instead of waiting for clinically
confirmed reports or diagnoses of a disease, some experts believe that
syndromic surveillance systems help public health officials increase the
speed with which they may identify outbreaks.

There are a number of disease surveillance systems operating in the United
States that are operated or funded by federal agencies and departments.
Some of these include the following:

o  IDSA-EIN-A Sentinel Disease Surveillance System

The Infectious Diseases Society of America Emerging Infections Network
(IDSA-EIN) consists of about 900 physicians who specialize in infectious
diseases.24 The network conducts surveillance by contacting the physicians
every six to eight weeks to request information about any unusual clinical
cases they have encountered.25 IDSA-EIN members, CDC, and state and
territorial epidemiologists all receive summaries of the information
obtained by the IDSA-EIN.

o  	EIP Site Surveillance-Participants Conduct Population-Based
Surveillance

Participants in CDC's Emerging Infections Programs (EIPs) conduct
population-based26 surveillance of specific diseases in certain locations
throughout the United States. As of May 2004, there were 11 EIP sites
nationwide that involved partnerships among CDC, state and local public
health departments, and academic centers. The 11 EIP sites are California,
Colorado, Connecticut, Georgia, Maryland, Minnesota, New Mexico, New York,
Oregon, Tennessee, and Texas. The type of surveillance conducted

23Anomalous increases in certain syndromes may also indicate an
environmental exposure representing a public health threat that may not be
infectious.

24The IDSA-EIN is supported by a cooperative agreement from the CDC and is
overseen by an executive committee with membership from CDC, IDSA, and the
Pediatric Infectious Diseases Society.

25Members may also submit reports at their own initiative.

26The population base for EIP activities is roughly 36 million people,
representing an approximation of the U.S. population with respect to
demographic characteristics such as age, gender, residence, and race and
health indicators, such as population density and percentage of persons at
or below the poverty level.

by EIP sites depends on local priorities and expertise. For example, the
Connecticut EIP conducts active surveillance for emerging tick-borne
diseases in the state.

o  	FoodNet-A National Surveillance System for Monitoring Foodborne
Diseases

One of the principal systems used for surveillance of foodborne diseases
is the Foodborne Disease Active Surveillance Network (FoodNet). FoodNet-a
collaborative effort among CDC, USDA, FDA, and nine EIP sites27-is a
system that collects information about the occurrence and causes of
certain types of foodborne outbreaks. FoodNet is used to detect cases or
outbreaks of foodborne disease, identify their source, recognize trends,
and respond to outbreaks. Public health departments that participate in
FoodNet receive funds from CDC, USDA, and FDA to systematically contact
laboratories in their geographical areas and solicit incidence data.
According to CDC, as a result of this active solicitation, FoodNet
provides more accurate estimates of the occurrence of foodborne diseases
than are otherwise available.

o  ESSENCE-A DOD Syndromic Surveillance System

Similar to CDC, DOD maintains its own surveillance system. DOD's ESSENCE
is a syndromic surveillance system designed to increase the rapid
detection of disease outbreaks. DOD's system collects data on patient
symptoms from military treatment facilities and selected civilian
populations. ESSENCE then classifies these symptoms into syndrome groups
based on presented signs, symptoms, and diagnoses. These syndrome groups
include respiratory, fever/malaise/sepsis, gastrointestinal, neurologic,
dermatologic, and coma or sudden death. The frequency of these syndromes
can be monitored by DOD and participating state public health officials on
a daily basis, and unusual increases can be detected through data
analysis.

Federal agencies and departments also support networks of laboratories
that test specimens and develop diagnostic tests for identifying
infectious diseases and biological or chemical agents. In some cases,
these laboratories provide highly specialized tests-such as tests for
anthrax- that are not always available in state public health or
commercial

Federal Agencies and Departments Maintain Laboratories and Support
Networks of Laboratories

27CDC officials told us that FoodNet would soon be in use in all 11 of its
EIP sites.

laboratories, and they assist states with testing during outbreaks. These
laboratories help diagnose life-threatening or unusual infectious diseases
for which satisfactory tests are not widely or commercially available, and
they confirm public or private laboratory test results.28

For example, to strengthen the nation's capacity to rapidly detect
biological and chemical agents that could be used as a terrorist weapon,
CDC, in partnership with the Federal Bureau of Investigation and the
Association of Public Health Laboratories, created the Laboratory Response
Network (LRN). According to CDC, the LRN, which was created in 1999,
leverages the resources of 126 laboratories to maintain an integrated
national and international network of laboratories that are fully equipped
to respond quickly to acts of chemical or biological terrorism, emerging
infectious diseases, and other public health threats and emergencies. The
network includes the following types of laboratories- federal, state and
local public health, military, and international laboratories, as well as
laboratories that specialize in food, environmental, and veterinary
testing. LRN laboratories have been used in several public health
emergencies. For example, in 2001, a Florida LRN laboratory discovered the
presence of Bacillus anthracis, the pathogen that causes anthrax, in a
clinical specimen it tested.

CDC has also developed and operates PulseNet. PulseNet is a national
network of public health laboratories that perform DNA "fingerprinting" on
bacteria that may be foodborne.29 The network identifies and labels each
"fingerprint" pattern and permits rapid comparison of these patterns
through an electronic database at CDC. This network is intended to provide
an early warning system for outbreaks of foodborne disease.

FDA's system, the Electronic Laboratory Exchange Network (eLEXNET), is a
Web-based system for real-time sharing of food safety laboratory data

28Laboratories are categorized as either Biosafety Level 1, 2, 3, or 4,
with Biosafety Level 4 laboratories providing the highest degree of
protection to personnel, the environment, and the community. Biosafety
levels represent combinations of laboratory practices and techniques,
safety equipment, and laboratory facilities. Each combination is
specifically appropriate for the operations performed, the documented or
suspected routes of transmission of the infectious agents, and the
laboratory function or activity. Both CDC and DOD have one Biosafety Level
4 Laboratory.

29The "fingerprinting" is called pulsed field gel electrophoresis, which
can distinguish strains of an organism, such as Escherichia coli,
Salmonella, Shigella, or Listeria at the DNA level.

among federal, state, and local agencies. It is a secure system that
allows public health officials at multiple government agencies engaged in
food safety activities to compare and coordinate laboratory analysis
findings. According to FDA officials, it enables public health officials
to assess risks and analyze trends, and it provides the necessary
infrastructure for an early warning system that identifies potentially
hazardous foods. As of July 2004, FDA officials said there were 113
laboratories representing 50 states that are part of the eLEXNET system.

DOD also maintains laboratories that perform and develop diagnostic tests
for infectious diseases. For example, the U.S. Army Medical Research
Institute of Infectious Diseases (USAMRIID)30 has the capability to
diagnose infectious diseases that require relatively more advanced testing
techniques. During the SARS outbreak, CDC requested assistance from
USAMRIID to conduct laboratory testing related to the SARS investigation.
USAMRIID is also a member of the LRN. In addition, DOD maintains a network
of five overseas medical research laboratories that support worldwide
efforts to detect and respond to infectious diseases.31 These five
overseas laboratories primarily focus on surveillance for drug-resistant
pathogens, unexplained fevers, and influenza. In addition, two of these
overseas laboratories are WHO Collaborating Centers.32

Like DOD and CDC, the USDA has laboratories that test for infectious
diseases. USDA's National Veterinary Services Laboratories is the only
federal program in the United States dedicated to testing for domestic and
foreign animal diseases. In doing so, it supports surveillance for
zoonotic diseases. The National Veterinary Services Laboratories have the
ability to test for more than 100 diseases in animals, and some of
these-such as rabies, anthrax, and BSE (also known as mad cow disease)-can
be transmitted to humans. In addition, the National Animal Health
Laboratory Network is a pilot program of diagnostic laboratories that
provide animal

30USAMRIID is DOD's lead laboratory for conducting research to develop
vaccines, drugs, and diagnostics for laboratory analysis related to
countering the medical effects of agents used in biological warfare.

31These five laboratories are located in Peru, Indonesia, Egypt, Thailand,
and Kenya.

32A WHO Collaborating Center is a national institution designated by WHO
to form part of an international collaborative network that contributes to
implementing WHO's program priorities and to strengthening institutional
capacity in countries and regions. Collaborating Center activities include
collection and dissemination of information, education and training, and
participation in collaborative research developed under WHO's leadership.
According to CDC, it has more that 20 Collaborating Centers.

Federal Agencies and Departments Share Disease Surveillance Information

disease surveillance testing and develop standardized and rapid diagnostic
techniques.33 According to a USDA official, this network has improved
zoonotic disease detection due to the use of better technology, improved
coordination among the network laboratories, and improved disease
reporting.

As part of their role in national disease surveillance efforts, officials
from federal agencies and departments share the surveillance information
they collect and analyze with local, state, and international partners.
One mechanism federal agencies and departments use to share information is
their respective Internet sites. For example, in its annual "Summary of
Notifiable Diseases," CDC posts on its Internet site the data it collects
from state health departments. The agency also posts information on
foodborne diseases on its FoodNet Internet page. During the SARS outbreak,
CDC, USDA, FDA, DOD, and DHS posted information about the disease on their
respective Web sites. Web site postings included information on clinical
evaluation and diagnosis, travel advisories, and assessments of the impact
of the outbreak on food consumption in various regions.

CDC also operates an early warning and response system, the Health Alert
Network (HAN), that is designed to ensure that state and local health
departments as well as other federal agencies and departments have timely
access to emerging health information. Through HAN, CDC issues health
alerts and other public health bulletins to an estimated 1 million public
health officials, including physicians, nurses, laboratory staff, and
others. During the SARS outbreak, for instance, CDC used HAN to
disseminate what the agency knew about the emerging infectious disease.
Also, state officials we interviewed reported receiving updates through
HAN on the avian influenza outbreak in Asia. According to CDC, as of March
2003, 89 percent of local health departments have high-speed continuous
Internet access and the ability to receive broadcast health alerts.

33The National Animal Health Laboratory Network was established as a
collaboration among USDA, the National Veterinary Services Laboratories,
the American Association of Veterinary Laboratory Diagnosticians, and
state laboratory directors.

Federal Agencies and Departments Provide Training, Technical Assistance,
and Funding

CDC also shares information on infectious diseases through a restricted
communication system, the Epidemic Information Exchange (Epi-X).34
Developed by CDC, this system is a secure, Web-based communication system
operating in all 50 states. CDC uses this system primarily to share
information relevant to disease outbreaks with state and local public
health officials and with other federal officials. CDC uses Epi-X to issue
emergency alerts, but unlike HAN, Epi-X also serves as a forum for routine
professional discussions and non-emergency inquiries.35 Authorized Epi-X
users can post questions and reports, query CDC, and receive feedback on
ongoing infectious disease control efforts. According to CDC, as of 2004,
over 1,200 public health officials at the federal, state, and local levels
had used the system to communicate with colleagues and experts, track
information for outbreak investigations and response efforts, conduct
online discussions, and request assistance. In addition, according to CDC,
it has agreements with Canada and Mexico that allow international public
health officials to become authorized Epi-X users. These international
users include officials from both the Canadian and Mexican Ministries of
Health and health officials in Mexican states that border the United
States. In addition, CDC staff assigned to WHO and health care providers
working internationally for the U.S. Department of State are authorized
Epi-X users.

Federal agencies and departments also provide training, technical
assistance, and funding to state and international public health
officials. For example, to enhance the U.S. public health infrastructure
for disease surveillance and response to infectious diseases, CDC operates
several programs, including the Epidemiology and Laboratory Capacity (ELC)
program, the Epidemic Intelligence Service (EIS) program, and EIP. The ELC
program provides training, technical assistance, and funding to 58 state
and local health departments. The program assists state and local health
departments in maintaining surveillance for infectious diseases,

34Participation in Epi-X is limited to public health officials designated
by individual health agencies, such as state health departments. These
officials-experts engaged in identifying, investigating, and responding to
health threats-must obtain pre-approval from the appropriate health
agency. Access to Epi-X is limited to these designated officials to ensure
the security necessary for the exchange of preliminary information.

35Both HAN and Epi-X are systems that operate as part of CDC's Public
Health Information Network (PHIN), which coordinates information
technology systems and related organizations that support various public
health functions. PHIN is intended to enable realtime data flow, computer
assisted analysis, professional collaboration, and rapid dissemination of
information.

providing technical support through laboratory services, and investigating
outbreaks. Additionally, the EIS is a 2-year postgraduate program intended
to increase the number of federally trained epidemiologists working in
public health. While the majority of EIS officers train at CDC
headquarters, others are trained at state and large local health
departments. Graduates of the program are employed in federal government,
state health departments and other health care settings. Further, the
EIP-which is a collaboration among CDC, state health departments, and
other public health partners- is a network of sites that acts as a
national resource for the surveillance, prevention, and control of
emerging infectious diseases. These sites conduct population-based
surveillance for selected diseases or syndromes and research that go
beyond the routine functions of local health departments to address issues
in infectious diseases and public health. CDC provided nearly $20 million
in funding to EIPs in fiscal year 2003 in order to support their
surveillance and research activities.

In selected foreign locations, CDC operates international training
programs, such as the Field Epidemiology Training Program (FETP). For more
than 20 years, CDC has collaborated with foreign ministries of health
around the world to help establish and conduct field epidemiology training
programs in those countries. CDC officials said that through FETP, CDC
trains approximately 50 to 60 physicians and social scientists each year
from these countries. This training in applied public health integrates
disease surveillance, applied research, prevention, and control
activities. Graduates of the FETP program serve in their native country
and provide links between CDC and their respective ministries of health.
CDC officials said that trainees from its international programs have
frequently provided important information on disease outbreaks. Another
international program sponsored by CDC is the International Emerging
Infections Program (IEIP). IEIP sites are modeled on the EIP sites in the
United States that integrate disease surveillance, applied research,
training, and prevention and control activities. According to CDC, the
IEIP in Thailand that was established in 2001 played a key role in the
global response to the SARS and avian influenza outbreaks. DOD has also
taken steps to increase the international disease surveillance expertise
by providing various types of laboratory and epidemiology training through
its overseas laboratories.

Some federal agencies and departments also provide direct technical
assistance to foreign countries both directly and through WHO. For
example, CDC officials told us they provide support in the form of
technical assistance and training that supports the development of major
international networks that are critical to enhancing global surveillance,
such as the WHO Global Influenza Surveillance Network. Additionally,

throughout the SARS outbreak, CDC was the foremost participant in WHO's
multilateral efforts to identify and respond to SARS in Asia, with CDC
officials constituting about two-thirds of the 115 public health experts
deployed to the region. CDC also contributed its expertise and resources
by conducting epidemiological studies, laboratory testing, and clinical
research on the disease. Specifically, CDC assigned epidemiologists,
laboratory scientists, hospital infection control specialists, and
environmental engineers to provide technical assistance in Asia. CDC also
assigned senior epidemiologists to work locally with a WHO team to
investigate the outbreak in China.36 DOD has also provided technical
assistance during investigations of potential outbreaks. For example, DOD
established a field laboratory during the Rift Valley fever epidemic in
Yemen in 2000 to assist with surveillance during the outbreak.

  Public Health Officials Have Implemented Initiatives Intended to Enhance
  Disease Surveillance, but Challenges Remain

Public health officials at the state and federal level have undertaken
several initiatives that are intended to enhance disease surveillance
capabilities. Public health officials have implemented and expanded
syndromic surveillance systems in order to detect outbreaks more quickly,
but there are concerns that these systems are costly to run and still
largely untested. Public health officials have also implemented
initiatives designed to improve public health communications and disease
reporting. However, some of these initiatives have not been fully
implemented. Federal public health officials have also undertaken
initiatives intended to improve the coordination of zoonotic surveillance
efforts. Finally, federal officials have also expanded training programs
for epidemiologists and other public health experts.

36For more information on CDC's role in fighting SARS in Asia, see U.S.
General Accounting Office, Emerging Infectious Diseases: Asian SARS
Outbreak Challenged International and National Responses, GAO-04-564
(Washington, D.C.: Apr. 28, 2004).

    Public Health Officials Have Implemented and Expanded Syndromic Surveillance
    Systems, but There Are Some Concerns about the Value of This Type of
    Surveillance

In an effort to enhance the ability to detect infectious disease
outbreaks, particularly in their early stages, states have implemented
numerous syndromic surveillance systems.37 Officials from each of the
state public health departments we interviewed reported that at least one
syndromic surveillance system was used in their state. These systems
collect information on syndromes from a variety of sources. For example,
the Real-time Outbreak and Disease Surveillance (RODS) system, used in
four of the states in our study, automatically gathers patient data from
hospital emergency room visits. This system identifies patients' chief
medical complaints, classifies the complaints according to syndrome, and
aggregates that data in order to look for anomalous increases in certain
syndromes that may reveal an infectious disease outbreak.

Another syndromic surveillance system used by some state public health
officials that we interviewed, the National Retail Data Monitor (NRDM),
collects data from retail sources instead of hospitals. As of February
2004, NRDM collected sales data from about 19,000 stores, including
pharmacies, in order to monitor sales patterns in such items as over-the
counter influenza medications for signs of a developing infectious disease
outbreak. The system looks for unusual sales patterns-such as a spike in
the number of over-the-counter medications purchased in a particular city
or county-that might indicate the onset of an infectious disease outbreak.
The system monitors the data automatically on a daily basis and generates
summaries of sales patterns using timelines and maps.

At the federal level, CDC has recently introduced a new syndromic
surveillance system called BioSense. BioSense aggregates data from
numerous electronic sources to enhance early detection of possible disease
outbreaks, bioterrorist threats, or other urgent public health threats.
The data are collected and analyzed by CDC and also made available to
state and local public health departments. In the first quarter of 2004,
BioSense became available for use, gathering data from DOD and the
Department of Veterans Affairs medical treatment facilities in the United
States and more than 10,000 over-the-counter retail drug stores
nationwide. According to CDC, the agency plans to add other data sources,
such as data from laboratories, poison control centers, health plan
medical records, nursing call centers, emergency medical service

37Many syndromic surveillance systems currently in use in the United
States were developed in response to the September 11, 2001 attacks on the
World Trade Center and Pentagon and to the anthrax outbreaks that occurred
shortly afterwards.

dispatches, health care provider billing claims, and pharmacy
prescriptions.

Since the end of 2001, DOD has made enhancements designed to improve its
syndromic surveillance system, ESSENCE. Specifically, DOD expanded ESSENCE
to include data from all military treatment facilities worldwide and data
from various civilian sources, such as civilian intensive care units,
over-the-counter pharmacies, school attendance records and laboratory test
results. In addition, DOD officials told us they are in the process of
improving ESSENCE's mapping capabilities and developing more advanced
statistical algorithms for identifying anomalous increases in syndromes.
DOD officials also told us that they are exploring additional data sources
for ESSENCE, such as large health maintenance organizations, and working
on improving the speed at which the system's data can be accessed.

Although syndromic surveillance systems are used by federal agencies and
departments and in all 11 of the states whose officials we interviewed,
concerns about this approach to surveillance have been raised. Relative to
traditional methods of surveillance, syndromic surveillance systems are
costly to maintain and still largely untested. According to a recent IOM
report, the resource requirements for automatic reporting of syndromic
data from hospitals, clinics, and emergency departments are currently
high, but these costs may lessen over time with standardization of
software.38 Syndromic surveillance systems require relatively more
resources to operate than other types of surveillance systems, in part,
because their sensitivity makes them more likely to issue false alarms,
which in turn have the potential to overtax public health systems.
Furthermore, some state officials as well as public health experts noted
that it has not been demonstrated in a rigorous way that these systems can
detect emerging infectious diseases or bioterrorist events more rapidly
than they would otherwise be detected through traditional surveillance.
According to public health experts, evaluation tools, performance measures
and evidence-based standards for syndromic surveillance are needed. CDC
recently published a "Framework for Evaluating Public

38See Institute of Medicine, Microbial Threats to Health: Emergence,
Detection and Response (Washington, D.C.: 2003), 172.

Health Surveillance Systems for Early Detection of Outbreaks."39 This
framework creates a standardized evaluation methodology intended to help
public health officials improve decision-making regarding the
implementation of syndromic and other surveillance systems for outbreak
detection.

    Public Health Officials Are Implementing Initiatives Designed to Enhance
    Public Health Communications and Disease Reporting, but Some Initiatives Are
    Incomplete

CDC is taking steps to enhance its two public health communications
systems, HAN and Epi-X, which are used in disease surveillance and
response efforts. For example, CDC is working to increase the number of
HAN participants who receive assistance with their communication
capacities. According to CDC, the agency will continue to increase the
number of local jurisdictions that have high-speed Internet capability
from 90 percent to 100 percent. Similarly, CDC has expanded Epi-X by
giving officials at other federal agencies and departments, such as DOD,
the ability to use the system. In addition, CDC is also adding users to
Epi-X from local health departments, giving access to CDC staff in other
countries, and making the system available to FETPs located in 21
countries. Finally, CDC is facilitating Epi-X's interface with other data
sources by allowing users to access GPHIN, the system that searches
Webbased media for information on infectious disease outbreaks worldwide.

In addition to the efforts to enhance communication systems, public health
officials are taking steps to enhance the reporting of notifiable disease
data and other surveillance information. Some of the state public health
officials we interviewed told us that they have implemented efforts to
increase health care providers' reporting of notifiable diseases to their
state health department. For example, an official from one state we
interviewed said that the state health department now uses liaisons that
regularly visit health care providers to establish regular communication
between the providers and local public health authorities. The liaisons
remind the providers of their responsibility for reporting cases of
notifiable diseases to the state. Similarly, the Commissioner of Health
from another state sent letters to health care providers in the state,
reminding the providers of their important role in recognizing an
infectious disease outbreak or bioterrorist event. The letter contained
information on

39Department of Health and Human Services, Centers for Disease Control and
Prevention, "Framework for Evaluating Public Health Surveillance Systems
for Early Detection of Outbreaks," Morbidity and Mortality Weekly Report,
vol. 53 (2004). According to CDC, this builds on the earlier Updated
Guidelines for Evaluating Public Health Surveillance Systems published in
2001.

changes to the state's notifiable disease list, a listing of references
and Internet sites for clinical information on specific pathogens, and
information on the Internet-based communication system the state
department of health used to disseminate and gather sensitive information
regarding disease surveillance.

Despite some states' efforts to increase disease reporting by health care
providers, some public health experts believe that underreporting by
providers is still a problem. According to the IOM, many health care
providers do not fully understand their role in infectious disease
surveillance, including the importance of prompt reporting of clinical
information to relevant public health authorities. According to the study,
few medical or other health science schools' curricula emphasize the
importance of and the requirements for reporting diseases of public health
significance; residency programs seldom address the need for health care
provider participation in public health surveillance; and little, if any,
continuing medical education exists on the topic, nor is it widely
integrated into board certification exams. Furthermore, despite the
existence of state notifiable disease lists and related laws, some
providers may be unaware of basic reporting requirements. One study noted
that health care providers failed to report disease information because
they often lacked information about what, when, and how to report such
information.40

Other efforts by public health officials to enhance notifiable disease
reporting target the information technology used in such reporting. For
example, public health officials in several states told us that they are
enhancing their electronic systems to permit providers in their states to
report notifiable diseases to the states' health department. For example,
public health officials in one state told us that they are enhancing their
reporting system to permit 20,000 to 30,000 physicians to report 61
notifiable diseases using an integrated, secure, Web-based system.
Similarly, some states have also implemented electronic reporting systems
that obtain information on notifiable diseases directly from clinical
laboratories. When the laboratories conduct tests for health care
providers on cases that may involve notifiable diseases, in some states
the results of those tests-if positive-are automatically reported to the
state health

40Nkuchia M'ikanatha et al., "Use of the Web by State and Territorial
Health Departments to Promote Reporting of Infectious Disease," Journal of
the American Medical Association, vol. 291, no. 9, 1069-1070, (2004).

department. Several state public health officials we interviewed told us
that they receive electronic laboratory reports from clinical laboratories
in their state. Other state officials told us that they were developing or
piloting this capability. According to state public health officials and
IOM, automated laboratory reporting of notifiable infectious diseases has
been shown to improve the timeliness of reporting on these diseases.

At the federal level, CDC is deploying a technological initiative known as
NEDSS. According to CDC, this initiative is designed to make the
electronic reporting from both clinical laboratories and practitioners to
state and local health departments and from state and local health
departments to CDC more timely, accurate, and complete. CDC officials said
that NEDSS will facilitate reporting by supporting a unified and
standardized way of transmitting information to CDC, and result in the
integration of 60 to 100 different systems used by state health
departments to report disease data to CDC. As part of the NEDSS
initiative, CDC is developing an architecture that consists of a set of
standards that can be used for creating interoperable41 systems. These
standards comprise (1) data standards,42 (2) parameters for an
Internet-based communications infrastructure and (3) policy-level
agreements on data access and sharing as well as on protections for
confidentiality. CDC has also developed ready-to-use software-the
NEDSS-Base system (NBS)-that operates within these standards. State and
local health departments that are updating their reporting systems have
the option of either using the NBS software or developing their own
systems based on the common NEDSS architecture.

According to CDC, when fully implemented, the use of
NEDSSarchitecture-compliant-software or NBS software by local and state
public health departments and CDC will allow public health partners to
exchange data, merge data from different laboratories, and obtain
information on cross-jurisdictional outbreaks. Whereas states currently
use multiple and sometimes duplicative systems to report different
notifiable diseases to CDC, NEDSS will replace many of these systems with
a single system. For example, the National Electronic Telecommunications
System for

41Interoperability is the ability of two or more systems or components to
exchange information and to use the information that has been exchanged.

42Data standards will govern the way surveillance data are assembled and
transmitted. These standards include common definitions and codes for
medical terms as well as accepted sequences for transmitting complex
segments of data.

Surveillance (NETSS), STD*MIS (sexually transmitted diseases), TIMMS
(tuberculosis), STELLAR (lead poisoning in children) and EHARS (HIV) will
be consolidated through NEDSS.

Despite the advantages that may be gained from creating interoperable
systems, the NEDSS initiative has not been implemented in many states. The
NEDSS initiative first began in fiscal year 2000,43 and by May 2004, only
4 states that use the NBS software are able to transfer data to CDC.
According to CDC, 10 states are actively deploying
NEDSS-architecturecompliant-software or NBS software and 16 states are in
the preliminary process of developing their technical and security
infrastructure to accommodate NEDSS standards. Some state officials told
us that even though they have developed electronic systems that comply
with the NEDSS standards, they have not been able to transfer data to CDC
using their systems because the systems are still not compatible. CDC
officials said that the national industry standards on design,
development, and data transport have continued to evolve and they are
working with the states to receive data from those who opted to use the
NEDDS architecture to develop their own compliant software.44

    Federal Public Health Officials Have Enhanced Federal Coordination on
    Zoonotic Disease Surveillance and Expanded Training Programs, but
    Surveillance Efforts Still Face Challenges

CDC, USDA, and FDA have made recent efforts to enhance their coordination
of zoonotic disease surveillance. For example, CDC and UDSA are working
with two national laboratory associations to enhance coordination of
zoonotic disease surveillance by adding veterinary diagnostic laboratories
to the LRN. As of May 2004, 10 veterinary laboratories have been added to
the LRN, and CDC officials told us that they have plans to add more
veterinary laboratories in the future. In addition, CDC officials told us
it has appointed a staff person whose responsibility, in part, is to
assist in finding ways to enhance zoonotic disease coordination efforts
among federal agencies and departments and with other organizations. This
person is helping CDC reconstruct a working group of officials from CDC,
USDA, and FDA to coordinate on

43While the NEDSS initiative first began in fiscal year 2000, the 1995
report Integrating Public Health Information and Surveillance Systems by
The Steering Committee on Public Health Information and Surveillance
Systems was the basis for the NEDSS initiative.

44According to CDC, a recent effort by a standards development group has
lead to an agreement on a standard message for transmission of data from
states to CDC.

zoonotic disease surveillance.45 According to CDC officials, the goal of
this working group is to explore ways to link existing surveillance
systems to better coordinate and integrate surveillance for wildlife,
domestic animal, and human diseases. CDC officials also said that the
feasibility of a pilot project to demonstrate this proposed integrated
zoonotic disease surveillance system is being explored. Finally, USDA
officials told us that they hired 23 wildlife biologists in the fall of
2003 to coordinate disease surveillance, monitoring, and management
activities among USDA, CDC, states and other agencies. While each of these
initiatives is intended to enhance the surveillance of zoonotic diseases,
each is still in the planning stage or the very early stages of
implementation.

Another way CDC has worked to enhance disease surveillance is through its
support for epidemiological training programs. In general, these programs
are aimed at developing an experienced workforce for state and local
public health departments and disease surveillance systems.46 For example,
in recent years, CDC has expanded its EIS program. CDC has increased the
number of participants in this program from 148 in 2001 to 167 in 2003.
During this time period, CDC has also increased the number of EIS
participants assigned to state and local health departments from 25-35 per
year to about 50 per year. CDC has also enhanced the type of training the
participants receive. All participants now receive training in terrorism
preparedness and emergency response.

CDC has also expanded its training programs intended to increase the
expertise involved in international disease surveillance efforts. For
example, CDC is helping to implement a comprehensive system of
surveillance and containment of global infectious diseases through the
expansion of its IEIP and the creation of the Field Epidemiology and
Laboratory Training Program (FELTP). CDC is enhancing a comprehensive
global surveillance and response network for infectious diseases by adding
two new IEIP sites in China and Kenya and by expanding activities in the
existing site in Thailand. CDC officials said that the program in Kenya
began in June 2004 and they may be able to begin

45This working group was created in response to a congressional mandate
that the Secretary of Health and Human Services, through FDA and CDC, and
USDA, coordinate the surveillance of zoonotic diseases. Public Health
Security and Bioterrorism Preparedness and Response Act of 2002, Pub. L.
No. 107-188, S:313, 116 Stat. 594, 674 (2002).

46A recent IOM report notes that in 2001, it was estimated that U.S.
public health departments needed at least 600 new epidemiologists merely
to meet the requirements for bioterrorism preparedness.

recruitment for the program in China by the end of 2004. CDC is expanding
its FETP program by creating a laboratory training component, known as the
FELTP. According to CDC officials, FELTPs are designed to increase
laboratory capacity in overseas locations. Currently, there is one FELTP
located in Kenya whose students recently began their training program.

The efforts to build disease surveillance capacities abroad, which were
discussed above, may also help domestic disease surveillance efforts.
According to a recent IOM report, surveillance of and response to emerging
infectious diseases in other parts of the world can directly benefit the
United States as well as the country in which the disease is detected.47
According to the IOM, some disease outbreaks that have been detected
internationally allowed the United States to develop diagnostic tests,
prepare for influenza outbreaks, or recognize zoonotic threats like avian
influenza. Similarly, the IOM points out that coordination between U.S.
and European sentinel surveillance systems have allowed several countries,
including the United States, to remove products from the market that were
contaminated with pathogens.

On the other hand, efforts to enhance international disease surveillance
still face challenges. Foremost among these are limitations in the amount
of surveillance information that many countries can collect and therefore
share with international partners. Many developing countries lack health
care infrastructures and the ability to administer simple diagnostic tests
for diseases such as tuberculosis. We have previously reported that few
developing countries have public heath laboratories.48 Also, many
developing countries lack the ability to compile basic health indices,
such as death rates, causes of death, or general disease burden.
Furthermore, even countries with public health infrastructures may lack
developed surveillance systems for reporting crucial disease information
to authorities. For example, officials in China noted that during the
first SARS outbreak, a large number of cases in Beijing were not reported
because there was no system to collect this information from hospitals in
the city.

47Institute of Medicine, Microbial Threats to Health: Emergence, Detection
and Response (Washington, D.C.: 2003).

48U.S. General Accounting Office, Global Health: Challenges in Improving
Infectious Disease Surveillance Systems, GAO-01-722 (Washington, D.C.:
Aug. 31, 2001).

  Concluding Observations

The threat posed by infectious diseases has continued to grow as new
diseases have emerged and as known diseases have reappeared with increased
frequency. In addition, there are concerns about the threat posed by the
deployment of infectious disease pathogens as instruments of terror or
weapons of war. The U.S. surveillance system is built largely on
cooperation among many different individuals and entities at the local
level. State and federal initiatives to enhance their ongoing disease
surveillance efforts are important to ensure that disease surveillance in
the United States can meet the threat posed by infectious diseases. Some
of these initiatives, such as improvements to information technology,
offer the possibility of increasing the accuracy and timeliness of disease
surveillance. As state and federal public health officials develop these
initiatives, their ongoing evaluation efforts may help decision-makers
address technical issues and allocate resources to the most effective
disease surveillance systems.

                                Agency Comments
                               and Our Evaluation

HHS, USDA, and DOD reviewed a draft of this report. HHS provided written
comments.

In its written comments, HHS stated that the draft captures many important
issues in surveillance. However, HHS stated that the draft includes a
discussion of programs that do not directly pertain to surveillance for
emerging infectious diseases. In this report, we defined surveillance
activities to include detecting and reporting cases of disease, analyzing
and confirming this information to identify possible outbreaks or
longer-term trends, and applying the information to inform public health
decision-making; and the programs and surveillance systems discussed in
this report fit within that definition.

HHS's written comments also stated that the report should characterize the
essential purpose of the NEDSS initiative as an initiative designed to
transform surveillance at the local and/or state health department level.
It said that the current gap NEDSS seeks to address is primarily between
the clinical sector and local and state public health departments. We have
added information to indicate that NEDSS is designed to enhance the
electronic reporting of information from both clinical laboratories and
practitioners to state and local health departments and from state and
local health departments to CDC.

HHS's written comments also pointed out that FDA does not collect
surveillance reports on foodborne outbreaks as a part of a national
surveillance system, but that CDC shares its findings with FDA. We have
clarified the report to say that FDA analyzes state information it
receives from CDC. HHS's written comments also suggested that information
be added to the draft report. Specifically, it said that the draft report
should have described the PulseNet network and should have included
information on CDC's technical advice and training that supports major
international networks, such as the WHO Global Influenza Surveillance
Network. Although this report only provides examples of selected
surveillance systems and we could not describe all systems, we have added
some information on these networks.

Finally, HHS said that we should clarify that CDC is the lead agency for
human disease surveillance and that it fulfills this responsibility in
close collaboration with states, other federal agencies, WHO, and other
partners. As we noted in the draft report, CDC is charged with protecting
the nation's public health by directing efforts to prevent and control
diseases and CDC has primary responsibility for conducting national
disease surveillance.

HHS's comments are reprinted in appendix IV. In providing oral comments on
a draft of this report, DOD said it concurred and did not have any
substantive comments. USDA said it had no comments on the draft report.
HHS and USDA provided technical comments that we incorporated where
appropriate.

As agreed with your office, we plan no further distribution of this report
until 30 days from its date of issue, unless you publicly announce its
contents. At that time, we will send copies of this report to the
Secretaries of Health and Human Services, Agriculture, and Defense;
appropriate congressional committees; and other interested parties. We
will also make copies available to others upon request. In addition, the
report will be available at no charge on GAO's Web site at
http://www.gao.gov.

If you or your staff have any questions about this report, please contact
me
at (202) 512-7119. Other contacts and staff acknowledgments are listed in
appendix V.

Sincerely yours,

Marjorie Kanof
Managing Director-Health Care Issues

                       Appendix I: Scope and Methodology

To describe how state and federal public health officials conduct disease
surveillance, we reviewed state documents-such as state policy manuals,
reports, cooperative agreements with the Centers for Disease Control and
Prevention (CDC), and various other documents-from 11 states. These
states-California, Colorado, Indiana, Louisiana, Minnesota, New York,
Pennsylvania, Tennessee, Texas, Washington, and Wisconsin-were selected
based on their participation in CDC's Emerging Infections Program, each
state's most recent infectious disease outbreak, and their geographic
location. Of these 11 states, California, Colorado, Minnesota, New York,
Tennessee, and Texas participate in CDC's Emerging Infections Program. We
also conducted structured interviews of state public health officials from
these states. In addition to our structured questions, we asked public
health officials from Colorado, Louisiana, and New York questions about
their most recent West Nile outbreak. We asked public health officials
from Indiana and Wisconsin questions about their monkeypox outbreak, and
public health officials from Pennsylvania and Tennessee about their
hepatitis A outbreak. We asked public health officials from the remaining
states-California, Minnesota, Texas, and Washington-to describe their
respective experiences with their most recent infectious disease outbreak,
which included outbreaks of wound botulism and severe acute respiratory
syndrome (SARS). We also reviewed documents and interviewed officials from
the Departments of Agriculture, Defense, and Homeland Security; CDC, and
the Food and Drug Administration. In addition, we interviewed
representatives from professional associations representing state and
local public health officials. These associations included the Association
of Public Health Laboratories, the Association of State and Territorial
Health Officials, Council of State and Territorial Epidemiologists, and
the National Association of County and City Health Officials. We reviewed
related publications by these professional organizations, including
studies and position papers written by these associations.

To identify initiatives intended to enhance disease surveillance, we
reviewed information on states' initiatives designed to enhance infectious
disease surveillance, including the use of syndromic surveillance systems,
information technology systems, and journal articles assessing the value
of syndromic surveillance systems. We also interviewed public health
officials from the 11 states and representatives from professional
associations about their assessments of enhancements and continuing
concern in infectious disease surveillance efforts. To identify federal
initiatives to enhance disease surveillance, we reviewed related federal
documents, including federal policy directives, agency and departmental
strategies, and annual reports. In addition, we interviewed federal health

Appendix I: Scope and Methodology

officials involved in disease surveillance, asking them about efforts to
enhance existing surveillance programs and activities. We also reviewed
reports and recommendations published by the Institute of Medicine related
to emerging infectious diseases. We focused our review of initiatives
intended to enhance surveillance on those currently underway or
implemented since 2001. We conducted our work from October 2003 through
July 2004 in accordance with generally accepted government auditing
standards.

Appendix II: Information on Nationally Notifiable Infectious Diseases and
Selected Worldwide Emerging Infectious Diseases

  Description of U.S. List of Nationally Notifiable Infectious Diseases, 2004

This appendix provides descriptions of the diseases contained on the U.S.
List of Nationally Notifiable Infectious Diseases for 2004 as well as
other selected worldwide emerging infectious diseases.

Acquired immunodeficiency syndrome (AIDS) is caused by the human
immunodeficiency virus (HIV), which progressively destroys the body's
immune system. AIDS patients may contract opportunistic infections that
usually do not make healthy people sick. Symptoms of opportunistic
infections common in people with AIDS include coughing and shortness of
breath, seizures, difficult or painful swallowing, fever, vision loss,
nausea, weight loss and extreme fatigue, severe headaches, and coma. The
term AIDS applies to the most advanced stages of HIV infection.

Anthrax is an acute infectious disease caused by a bacterium commonly
found in the soil. Although anthrax can infect humans, it occurs most
commonly in plant-eating animals. Human anthrax infections have usually
resulted from occupational exposure to infected animals or contaminated
animal products. Anthrax infection can take one of three forms: cutaneous,
usually through a cut or an abrasion; gastrointestinal, usually by
ingesting undercooked contaminated meat; or inhalation, by breathing
airborne anthrax spores into the lungs. The symptoms are different for
each form and usually occur within 7 days of exposure. Anthrax can be
treated with antibiotics and a vaccine is available.

Botulism is a muscle-paralyzing disease caused by a bacterial toxin.
Symptoms of botulism include double vision, blurred vision, drooping
eyelids, slurred speech, difficulty swallowing, dry mouth, and muscle
weakness that always descends through the body. Paralysis of breathing
muscles can cause a person to stop breathing and die, unless mechanical
assistance is provided. An antitoxin exists that is effective in reducing
the severity of symptoms if administered early in the course of the
disease.

Brucellosis, a disease of animals, is transmitted to humans through
contact with infected animals or contaminated milk. Infection produces a
wide range of symptoms, including fever, generalized aches and pains, and
fatigue, which may last from a few weeks to several months. Brucellosis
can be treated with antibiotics.

Chancroid is a highly contagious sexually transmitted disease (STD) caused
by a bacterial infection. Transmission results through either skinto-skin
contact with open sore(s) or when contact is made with the puslike fluid
from the ulcer. Chancroid causes ulcers, usually of the genitals

Appendix II: Information on Nationally Notifiable Infectious Diseases and
Selected Worldwide Emerging Infectious Diseases

and if left untreated, may facilitate the transmission of HIV. Chancroid
can successfully be treated with antibiotics.

Chlamydial infection is a STD resulting from a bacterial infection. One of
the most widespread bacterial STDs in the United States, genital
chlamydial infection can occur during oral, vaginal, or anal sexual
contact with an infected partner. Because chlamydial infection does not
make most people sick, infected persons may not know they have it and
symptoms that do develop may be mild. Chlamydial infection is treated with
antibiotics. However, if left untreated, it can lead to serious illnesses.

Cholera is a bacterial illness that is contracted by ingesting
contaminated water or food. Infection results in acute watery diarrhea,
leading to extreme dehydration and death if left unaddressed. Known
vaccines and antibiotics have only limited impact on the disease-treatment
focuses on rehydration. In the United States, cholera has been virtually
eliminated by modern sewage and water treatment systems. However,
travelers have brought contaminated seafood back to the United States
resulting in foodborne outbreaks.

Coccidioidomycosis is a disease caused by a fungus that grows as a mold in
the soil. It is transmitted through inhalation after a disturbance of
contaminated soil by humans or natural disasters, such as earthquakes and
usually presents as a flu-like illness with symptoms such as fever, cough,
headaches, and rash. Although most infections are undetectable, it can
cause serious and life-threatening infections, especially among the
immunosuppressed. The disease causing fungus is endemic in soil in
semiarid areas, including the Southwestern United States. Various drugs
are now available to treat this disease.

Cryptosporidiosis is caused by a microscopic parasite and can be spread
through contaminated water, uncooked contaminated foods, including fruits
and vegetables, and any surface that has been in contact with the
parasite. Symptoms include diarrhea, stomach cramps or upset stomach, and
a slight fever. People with weak immune systems may have more serious
reactions. There is currently no consistently effective treatment for this
disease.

Cyclosporiasis is a foodborne illness caused by a microscopic parasite
that infects the small intestine. Humans contract the illness by ingesting
contaminated water or food. Cyclosporiasis usually results in watery
diarrhea. Other symptoms can include loss of appetite, substantial weight

Appendix II: Information on Nationally Notifiable Infectious Diseases and
Selected Worldwide Emerging Infectious Diseases

loss, bloating, stomach cramps, nausea, muscle aches, and fatigue. This
disease is often treated with a combination of two antibiotics.

Diphtheria is a respiratory disease occurring worldwide that is spread
through coughing and sneezing. Symptoms range from mild to severe and can
be complicated by damage to the heart muscle or peripheral nerves.
Treatment for diphtheria consists of immediate administration of
diphtheria antitoxin and antibiotics.

Ehrlichiosis is the general name used to describe several bacterial
diseases that affect humans and animals. In the United States, the disease
is transmitted through the bite of an infected tick. Early clinical
presentations of ehrlichiosis may resemble nonspecific signs and symptoms
of various other infectious and non-infectious diseases, such as fever,
headache, and muscle ache. In some cases, patients develop a very mild
form of the disease and may not seek medical attention or present any
symptoms. In other cases, Ehrlichiosis may be treated with an antibiotic.
The disease occurs primarily in the southeastern and south central regions
of the United States.

Encephalitis, Arboviral is an inflammation of the brain that may be caused
by arthropod-borne viruses, also called arboviruses. Six types of
arboviral encephalitides are present in the United States-eastern equine
encephalitis, western equine encephalitis, St. Louis encephalitis, La
Crosse encephalitis, and West Nile encephalitis, all of which are
transmitted by mosquitoes, and Powassan encephalitis, which is transmitted
by ticks. The majority of human infections are asymptomatic or may result
in a nonspecific flu-like syndrome. However, in a small proportion of
cases, infections may lead to death or permanent neurologic damage. No
effective antiviral drugs have been discovered and there are no
commercially available human vaccines for these diseases.

Enterohemorrhagic Escherichia coli (E. coli) is a bacterium that includes
multiple serotypes, such as E. coli O157:H7, that can cause
gastroenteritis in humans. E. coli is normally found in the intestines and
serves a useful function in the body. However, a minority of E. coli
strains are capable of causing human illness. Transmission occurs by
ingesting contaminated food or water. Infections vary in severity and may
be characterized by diarrhea (often bloody) and abdominal cramps. The
illness is usually self-limited and lasts for an average of 8 days.

Giardiasis is a diarrheal illness caused by a one-celled, microscopic
parasite in the intestines of humans and animals. It has become recognized

Appendix II: Information on Nationally Notifiable Infectious Diseases and
Selected Worldwide Emerging Infectious Diseases

as one of the most common causes of waterborne disease in humans in the
United States. Humans may contract the disease by accidentally swallowing
the parasite, such as through swallowing contaminated water or eating
uncooked, contaminated food. Symptoms of giardiasis include diarrhea,
loose or watery stool, stomach cramps, and upset stomach. Several drugs
are available to treat this disease.

Gonorrhea is a bacterial STD that infects the genital tract, the mouth,
and the rectum. Gonorrhea is transmitted during sexual intercourse and
affects both women and men. Symptoms in women include bleeding associated
with vaginal intercourse and painful or burning sensations when urinating.
Symptoms in men include pus from the penis and pain and burning sensations
during urination. Gonorrhea is usually treated with antibiotics.

Haemophilus influenzae is a bacterium found in the nose and throat that is
transmitted through direct contact with respiratory droplets from a
carrier or patient. It causes a variety of illnesses including meningitis
(inflammation of the coverings of the spinal column and brain), bacteremia
(infection of the blood), pneumonia (infection of the lungs), and septic
arthritis (infection of the joints). Serious infections are treated with
specific antibiotics.

Hansen's disease (leprosy) is a chronic bacterial infection for which the
exact mode of transmission is not fully understood. However, most
investigators think that the bacterium is usually spread from
human-tohuman through respiratory droplets. Primarily affecting the skin,
nerves, and mucous membranes, leprosy causes deformities of the face and
extremities after many years but those receiving antibiotic treatment are
considered free of active infection.

Hantavirus pulmonary syndrome is caused by several strains of a virus that
is transmitted by exposure to infected rodents. Symptoms include fever,
fatigue, muscle aches, coughing, and shortness of breath; the onset of
respiratory distress often leads to death. There is no specific treatment
for the disease, other than appropriate management of respiratory
problems. The virus was first identified in the Southwestern United States
in 1993.

Hemolytic uremic syndrome is one of the most common causes of sudden,
short-term kidney failure in children. Most cases occur after an infection
of the digestive system by a specific E. coli bacterium. It develops when
the bacteria lodged in the digestive system make toxins that enter the
bloodstream and start to destroy red blood cells. Symptoms

Appendix II: Information on Nationally Notifiable Infectious Diseases and
Selected Worldwide Emerging Infectious Diseases

may not become apparent until a week after the digestive problems and
include, paleness, tiredness, and irritability, as well as small,
unexplained bruises or bleeding from the nose or mouth. Treatments usually
consist of maintaining normal salt and water levels in the body, but may
include blood transfusions.

Hepatitis A is an acute viral infection of the liver. Human-to-human
transmission of hepatitis A often occurs by placing something contaminated
in the mouth. Symptoms include jaundice, fatigue, abdominal pain, loss of
appetite, nausea, diarrhea, and fever. A vaccine is available for
protection against hepatitis A and once a person has had the disease, it
cannot be contracted again.

Hepatitis B is a viral infection of the liver that is transmitted by
contact with the body fluids of an infected person. The virus may cause an
acute illness, as well as a life-long infection that carries a high risk
of serious illness or eventual death from liver cancer or cirrhosis.
Symptoms include jaundice, fatigue, abdominal pain, loss of appetite,
nausea, vomiting, and joint pain. An effective vaccine that has been
available for this disease since 1982 is the best protection against
hepatitis B. Treatment is also available for chronic hepatitis B.

Hepatitis C is a viral infection of the liver that may be either acute or
chronic and is transmitted by contact with the body fluids of an infected
person. Symptoms of this disease include jaundice, fatigue, dark urine,
abdominal pain, loss of appetite, and nausea. There is currently no
vaccine available for hepatitis C; however two drugs are available for
treatment.

Human immunodeficiency virus (HIV) causes AIDS and is transmitted through
contact with the body fluids of an infected person or from mother to baby.
Infected adults may be asymptomatic for 10 years or more. Because the
immune system is weakened there is eventually greater susceptibility to
opportunistic diseases such as pneumonia and tuberculosis. Drugs are
available that can prevent transmission from pregnant mothers to their
unborn children and can help slow the onset of AIDS.

Legionellosis is a bacterial infection that has two distinct forms-
Legionnaires' disease, the more severe form of infection, which includes
pneumonia, and Pontiac fever, a milder illness. Legionellosis outbreaks
have often occurred after persons have breathed mists that come from a
contaminated water source. Symptoms for Legionnaires' disease usually
include fever, chills, and a cough. Chest X-rays often show pneumonia;

Appendix II: Information on Nationally Notifiable Infectious Diseases and
Selected Worldwide Emerging Infectious Diseases

however additional tests are needed to confirm diagnosis. Those with
Pontiac fever experience fever and muscle aches and do not have pneumonia.
Legionnaires' disease is treated with antibiotics, while those with
Pontiac fever generally recover without treatment.

Listeriosis is a bacterial foodborne illness. The disease affects
primarily pregnant women, newborns, and adults with weakened immune
systems and is spread through the consumption of contaminated food.
Symptoms of listeriosis include fever, muscle aches, and, at times,
gastrointestinal symptoms, such as nausea or diarrhea. Listeriosis is
treated with antibiotics.

Lyme disease is a bacterial illness transmitted by ticks. The area around
the tick bite sometimes develops a "bull's eye" rash, typically
accompanied by fever, headache, and musculoskeletal aches and pains. There
is an effective vaccine for adults at high risk. If untreated by
antibiotics, arthritis, neurologic abnormalities, and-rarely-cardiac
problems may follow. The disease is rarely, if ever, fatal and is endemic
in North America and Europe. The pathogen for Lyme disease was first
detected in the United States in 1982.

Malaria is a parasitic disease transmitted by infected mosquitoes.
Symptoms include fever, shivering, joint pain, headache, repeated
vomiting, severe anemia, convulsions, coma, and, in severe cases, death.
Malaria is becoming increasingly resistant to known antimalarial
treatments and is now reemerging in countries where it was once under
control.

Measles is a highly contagious viral disease, transmitted through
humanto-human contact, such as by coughing or sneezing. It often strikes
children and causes fever, conjunctivitis, congestion, and cough, followed
by a rash. Secondary infections often cause further complications. A
measles vaccine is available.

Meningococcal disease, caused by a particular type of bacteria, is
transmitted by human-to-human contact and is characterized by sudden onset
of fever, headache, neck stiffness, and altered consciousness. There is a
vaccine for this disease, but it loses its effectiveness over time and
must be repeated.

Appendix II: Information on Nationally Notifiable Infectious Diseases and
Selected Worldwide Emerging Infectious Diseases

Mumps is a viral disease of the lymph nodes, transmitted though
humanto-human contact, such as by coughing or sneezing. Symptoms include
fever, headache, muscle ache, and swelling of the lymph nodes close to the
jaw. A vaccine is available to prevent mumps.

Pertussis (whooping cough) is a highly contagious bacterial disease
transmitted though human-to-human contact, such as by coughing or
sneezing. Symptoms include runny nose and sneezing, a mild fever, and a
cough that gradually becomes more severe, turning into coughing spasms
that end in vomiting and exhaustion. Pertussis is treatable with
antibiotics, and a pertussis vaccine is available.

Plague, a severe bacterial infection, is usually transmitted to humans by
infected rodent fleas (bubonic plague) and uncommonly by human-tohuman
respiratory exposure (pneumonic plague). Symptoms of bubonic plague
include swollen, painful lymph glands, fever, chills, headache, and
exhaustion. People with pneumonic plague develop cough, bloody sputum, and
breathing difficulty. Plague is treatable with antibiotics if diagnosed
early.

Poliomyelitis, paralytic (polio) is a virus transmitted through
humanto-human contact. In most cases, there are no symptoms or only mild,
flulike symptoms. However, it may lead to debility of the lower
extremities. Although there is no cure, an effective vaccine is available.

Psittacosis (parrot fever) is a bacterial infection that is spread from
birds to humans. Humans become infected by inhaling aerosolized dried bird
droppings and by handling infected birds. Symptoms of psittacosis include
fever, headache, rash, chills, and sometimes pneumonia. The disease is
treatable with antibiotics.

Q Fever is a bacterial disease that is spread from livestock or
domesticated pets to humans. Infection of humans usually occurs by
inhalation of barnyard dust contaminated with animal fluids. Symptoms for
Q fever are not specific to this disease, making it difficult to make an
accurate diagnosis without appropriate laboratory testing. However, most
acute cases begin with a sudden onset of symptoms such as high fevers,
severe headache, confusion, sore throat, nausea, vomiting, abdominal pain,
and chest pain. Q fever is treated with antibiotics.

Rabies is a viral disease transmitted through contact with saliva of
infected animals. Symptoms progress from respiratory, gastrointestinal, or
central nervous system affliction to hyperactivity to complete paralysis,

Appendix II: Information on Nationally Notifiable Infectious Diseases and
Selected Worldwide Emerging Infectious Diseases

coma, and death. Once symptoms start to appear, the disease is not
treatable. Multiple-dose courses of vaccine and immunoglobulin can be used
to prevent onset of the disease if administered immediately after contact
with a suspected carrier.

Rocky Mountain spotted fever is a bacterial disease spread to humans by
ticks. It can be difficult to diagnose in the early stages. Initial signs
and symptoms of the disease include sudden onset of fever, headache, and
muscle pain, followed by the development of a rash. Without prompt and
appropriate treatment of antibiotics, it can be fatal.

Rubella is a viral disease that is transmitted through human-to-human
contact, such as by coughing and sneezing. Symptoms of this disease
include a rash, conjunctivitis, low fever, and nausea. Natural rubella
infection normally confers lifelong immunity. A number of vaccines for
rubella are also available.

Congenital rubella syndrome is a form of rubella that is characterized by
multiple defects, particularly to the brain, heart, eyes, and ears. This
syndrome is an important cause of hearing and visual impairment and mental
retardation in areas where the mild form of rubella has not been
controlled or eliminated. The primary purpose of the rubella vaccine is to
prevent the occurrence of this disease.

Salmonellosis (salmonella infection) is a bacterial infection transmitted
to humans by eating contaminated foods. Most persons infected with
salmonella develop diarrhea, fever, and abdominal cramps. Infections often
do not require treatment unless the patient becomes severely dehydrated or
the infection spreads from the intestines. In this latter instance,
antibiotics are used to treat salmonellosis.

Severe acute respiratory syndrome (SARS) is an emerging, viral respiratory
illness that seems to be transmitted primarily through close
human-to-human contact, such as through coughing and sneezing. In general,
SARS begins with a high fever. Other symptoms may include headache, an
overall feeling of discomfort, and body aches. Some people also have mild
respiratory symptoms at the onset and may develop a dry cough and most
patients develop pneumonia. Currently, there is no definitive test to
identify SARS during the early phase of the illness, which complicates
diagnosis. Furthermore, there is no specific treatment for SARS. SARS was
first reported in Asia in February 2003.

Appendix II: Information on Nationally Notifiable Infectious Diseases and
Selected Worldwide Emerging Infectious Diseases

Shigellosis is a highly contagious, diarrheal disease caused by four
strains of bacteria and is transmitted by human-to-human contact and
contaminated food and water. One of these strains, an unusually virulent
pathogen, causes large-scale, regional outbreaks of dysentery (bloody
diarrhea). In addition to diarrhea, patients experience fever, abdominal
cramps, and rectal pain. The disease is treatable by rehydration and
antibiotics.

Smallpox is an acute, contagious, and sometimes fatal viral disease
transmitted through human-to-human contact. Symptoms usually begin with
high fever, head and body aches, and sometimes vomiting. A rash follows
that spreads and progresses to raised bumps and pus-filled blisters that
eventually fall off, leaving pitted scars. There is no treatment for
smallpox. However, it can be prevented through use of the smallpox
vaccine.

Streptococcal disease (invasive Group A) is a bacterial disease
transmitted through direct contact with an infected person's mucus or
through contact with wounds or sores on the skin. Invasive group A
streptococcus (GAS) infections occur when bacteria get into parts of the
body where they are not usually found, such as the blood, muscle, or lung.
GAS infections can be treated with many different antibiotics.

Streptococcal toxic shock syndrome (STSS) is one of the most severe, but
least common forms of invasive GAS diseases. STSS, which is not spread
from human-to-human, causes blood pressure to rapidly drop and organs to
fail. Symptoms include fever, dizziness, confusion and a flat red rash
over large areas of the body. Early treatment of GAS infections with
antibiotics may reduce the risk of death from invasive GAS disease.

Streptococcus pneumoniae is a bacterium that includes more than 90 strains
and is transmitted through human-to-human contact. It is the cause of
multiple diseases, including pneumonia, bacteremia, meningitis, and
sinusitis. Some strains of this bacterium are becoming resistant to one or
more antibiotics. CDC and several states are currently conducting
additional surveillance for the resistant forms of this bacterium.

Syphilis is a bacterial STD with signs and symptoms that are
indistinguishable from those of other diseases. Syphilis is passed from
person-to-person through direct contact with a syphilis sore and
progresses through three stages. The primary stage is usually marked by
the appearance of a single sore. The second stage is involves a skin rash
and mucous membrane lesions. Finally, the late stage begins when

Appendix II: Information on Nationally Notifiable Infectious Diseases and
Selected Worldwide Emerging Infectious Diseases

secondary symptoms disappear. Many people infected with syphilis do not
have any symptoms for years yet remain at risk for late complications if
they are not treated. Syphilis is easy to treat in its early stages,
usually with antibiotics.

Tetanus (lockjaw) is caused by a bacterium found in the intestines of many
animals and in the soil. It is transmitted to humans through open wounds.
Symptoms include generalized rigidity and convulsive spasms of the
skeletal muscles. Tetanus can be treated with an antitoxin, and there is
an effective vaccine.

Toxic shock syndrome is a bacterial disease that develops when the
disease-causing bacterium colonizes skin and mucous membranes in humans.
This disease has been associated with the use of tampons and intravaginal
contraceptive devices in women and occurs as a complication of skin
abscesses or surgery. Characterized by sudden onset of fever, chills,
vomiting, diarrhea, muscle aches, and rash, toxic shock syndrome can
rapidly progress to severe and intractable hypotension and multisystem
dysfunction. Treatment usually includes the use of antibiotics and
supportive treatment to prevent dehydration and organ failure.

Trichinosis (trichinellosis) is food-borne illness caused by eating raw or
undercooked pork and wild game products infected with a species of worm
larvae. It cannot be spread from human-to-human, but only through
consumption of contaminated food. Symptoms include nausea, diarrhea,
vomiting, fatigue, fever, and abdominal discomfort, followed by additional
symptoms, such as headaches, fevers, chills, aching joints, and muscle
pains. Several drugs are available to treat trichinosis.

Tuberculosis is a bacterial disease that is usually transmitted by contact
with an infected person. People with healthy immune systems can become
infected but not ill. Symptoms of tuberculosis can include a bad cough,
coughing up blood, pain in the chest, fatigue, weight loss, fever, and
chills. Several drugs can be used to treat tuberculosis, but the disease
is becoming increasingly drug resistant.

Tularemia is caused by a bacterium often found in animals. Humans can
contract tularemia in different ways, including being bitten by an
infected tick or other insect, handling infected animal carcasses, by
ingesting contaminated food or water, or by inhaling the bacterium.
Symptoms of this disease can include sudden fever, chills, headaches,
muscle aches, joint pain, dry cough, and progressive weakness. Tularemia
is often treated with antibiotics.

Appendix II: Information on Nationally Notifiable Infectious Diseases and
Selected Worldwide Emerging Infectious Diseases

Typhoid fever is a bacterial illness transmitted through contaminated food
and water. Symptoms include high fever, stomach pains, and in some cases a
rash. It is treatable by antibiotics and there is also a vaccine
available, although it is not always effective.

Vancomycin-Intermediate/Resistant Staphylococcus aureus are specific
bacteria resistant to the antimicrobial agent vancomycin. Persons that
develop these infections have certain characteristics such as having
several underlying health conditions (such as diabetes and kidney
disease), recent hospitalizations, and recent exposure to vancomycin and
other antimicrobial agents. Despite their resistance to vancomycin, these
infections can be treated with several drugs.

Varicella (chickenpox) is highly infectious, viral disease that spreads
from human-to-human contact, such as through coughing or sneezing. It
results in a blister-like rash that appears first on the trunk and face,
but can spread over the entire body. Other symptoms include itching,
tiredness, and fever. Multiple drug treatments and a vaccine for varicella
are available.

Yellow fever is a mosquito-borne viral disease that occurs in tropical and
subtropical areas. The yellow fever virus is transmitted to humans through
a specific mosquito. Symptoms include fever, muscle pain, headache, loss
of appetite, and nausea. There is no treatment for yellow fever beyond
supportive therapies. A vaccine for yellow fever is available.

  Selected Worldwide Emerging Infectious Diseases

Variant Creutzfeldt-Jakob disease (vCJD) is a rare, degenerative, fatal
brain disorder in humans. It is believed that vCJD is contracted through
the consumption of cattle products contaminated with the agent of bovine
spongiform encephalopathy (BSE) or "mad cow disease"-a slowly progressive,
degenerative, fatal disease affecting the central nervous system of adult
cattle. There is no known treatment of vCJD.

Dengue fever is a mosquito-borne infection that results in a severe,
flulike illness with specific symptoms that vary based on the age of the
victim. Dengue hemorrhagic fever is a potentially lethal complication that
may include convulsions. There is no vaccine for dengue fever, nor is
there any treatment beyond supportive therapy.

Ebola hemorrhagic fever, a viral disease, is transmitted by direct contact
with the body fluids of infected individuals, causing acute fever,
diarrhea that can be bloody, vomiting, internal and external bleeding, and

Appendix II: Information on Nationally Notifiable Infectious Diseases and
Selected Worldwide Emerging Infectious Diseases

other symptoms. There is no known cure, although some measures, including
rehydration, can improve the odds of survival. Ebola kills more than half
of those it infects. Identified for the first time in 1976, the Ebola
virus is still considered rare, but there have been a number of outbreaks
in central Africa.

Echinococcosis (Alveolar Hydatid disease) is caused by a parasitic
tapeworm found mostly in the Northern Hemisphere. The disease is
transmitted to humans when they swallow the tapeworm eggs, either on
contaminated food, or after contact with an animal carrier. Symptoms are
slow to appear, usually involving the liver-and may mimic liver cancer or
cirrhosis-and can include abdominal pain, weakness, and weight loss.
Surgery is the most common form of treatment, although follow-up
medication is often needed.

Hendra virus infection occurs in both humans and many species of animals.
In humans, it causes a respiratory disease that is often fatal. It was
discovered in 1994, and has not been found outside of Australia.

Human monkeypox is a rare viral disease caused by a virus related to
smallpox. It is transmitted to humans through contact with infected
animals as well as through human-to-human contact. In humans, symptoms of
monkeypox are similar to smallpox, but usually they are milder. Monkeypox
symptoms include fever, muscle ache, swelling of the lymph nodes, and a
fluid-filled rash. The first case of monkeypox in the United States
occurred in June 2003. There is no specific treatment for monkeypox but
the smallpox vaccine may offer protection against the disease.

Influenza A, H5N1 (avian influenza) is a type of influenza that infects
birds and may be transmitted to humans. Symptoms of avian influenza in
humans range from typical influenza-like symptoms to eye infections,
pneumonia, acute respiratory distress, and other severe and
lifethreatening complications.

Lassa fever is a viral disease, transmitted through contact with infected
rats. Symptoms include deafness, fever, nausea, vomiting, diarrhea, and,
in more severe cases, seizures and hemorrhage. This disease is difficult
to distinguish from several other diseases. No vaccine is currently
available, although ribavirin has been used as a preventive measure as
well as to treat the disease.

Appendix II: Information on Nationally Notifiable Infectious Diseases and
Selected Worldwide Emerging Infectious Diseases

Marburg hemorrhagic fever is a rare and severe viral disease that affects
both humans and animals. The mode of transmission from animals to humans
is unknown. However, humans who become ill may spread the virus to other
people. The onset of the disease is sudden and includes fever, chills, and
headache. Symptoms progress to include a rash, nausea, vomiting, and chest
pain as well as jaundice, inflammation of the pancreas, shock, massive
hemorrhaging, and multi-organ dysfunction. Because many of the signs and
symptoms of Marburg fever are similar to other infectious diseases, it may
be difficult to diagnose. A specific treatment for this disease is
unknown.

Nipah virus is an emerging disease causing encephalitis. It is believed to
be transmitted through contact with infected pigs. Symptoms include
headache, fever, muscle spasms, coma, and brain damage. There is no
treatment beyond alleviation of symptoms.

O'nyong-nyong fever is a viral illness spread by mosquitoes. It causes
symptoms such as joint pain, rash, high fever, and eye pain. Fatalities
are rare.

Rift Valley fever is a viral disease that primarily affects animals-
including domesticated livestock-but can be transmitted to people by
mosquitoes or contact with the body fluids of infected animals. Rift
Valley fever usually causes a flu-like illness lasting 4 to 7 days, but
can develop into a more severe hemorrhagic fever that can result in death.
There is no established course of treatment for infected patients. The
disease has occurred in many parts of Africa and, in September 2000, was
for the first time reported outside of Africa, in Saudi Arabia and Yemen.

Venezuelan equine encephalitis is a mosquito-borne viral disease that can
be transmitted to humans from equine hosts. Symptoms in humans include
flu-like symptoms of fever and headache. Severe illness and death can
occur in the young and the elderly and those with weakened immune systems.
The only treatment available is supportive therapy.

West Nile virus is a mosquito-borne viral disease that is transmitted to
humans through infected mosquitoes. Many people infected with the virus do
not become ill or show symptoms. Symptoms that do appear may be limited to
headache, sore throat, backache, or fatigue. There is no vaccine for the
West Nile virus, and no specific treatment besides supportive therapies.
The disease occurs in Africa, Eastern Europe, West Asia, and the Middle
East. This disease appeared for the first time in the United States in
1999.

                   Appendix III: Selected List of Systems and
                    Networks Engaged in Disease Surveillance

  BioSense

Electronic Laboratory Exchange Network (eLEXNET)

  Electronic Surveillance System for the Early Notification of Community-based
  Epidemics (ESSENCE)

Below we describe selected electronic systems and networks to support
disease surveillance that are discussed in this report. This list
encompasses electronic communications and surveillance systems as well as
networks of laboratories and public health officials engaged in disease
surveillance.

BioSense is a syndromic surveillance system operated by CDC. BioSense
aggregates syndromic data from a variety of electronic sources to improve
early detection of possible disease outbreaks, bioterrorism threats, or
other urgent public health threats. The data are collected and analyzed by
CDC and also made available to state and local public health agencies.
Data sources include patient encounters from the Department of Defense's
medical treatment facilities in the United States, the Department of
Veterans Affairs' medical facilities, national clinical laboratory test
orders, and more than 10,000 over-the-counter retailers nationwide.

eLEXNET is a Web-based system for real-time sharing of food safety
laboratory data among federal, state, and local agencies. It is a secure
system that allows public health officials at multiple government agencies
engaged in food safety activities to compare and coordinate laboratory
analysis findings. According to FDA officials, it enables public health
officials to assess risks, and analyze trends, and it provides the
necessary infrastructure for an early warning system that identifies
potentially hazardous foods. As of July 2004, FDA officials said there
were 113 laboratories representing 50 states that are part of the eLEXNET
system.

ESSENCE is a syndromic surveillance system operated by DOD. ESSENCE is
used in the early detection of infectious disease outbreaks and it
provides epidemiological tools for improved investigation. The system
collects data from hospitals and clinics on a daily basis. Epidemiologists
can track, in near real-time, the syndromes being reported in a region
through a daily feed of reported data. ESSENCE uses the daily data
downloads, along with traditional epidemiological analyses using
historical data for baseline comparisons and analytic methods such as a
geographic information system. A geographic information system, among
other things, can be used to identify spatial clustering of abnormal
health events as the data are collected. This can assist public health
officials in identifying affected areas. DOD is in the process of
improving ESSENCE's mapping capabilities and developing more advanced
statistical algorithms for identifying anomalous increases in syndromes.

     Appendix III: Selected List of Systems and Networks Engaged in Disease
                                  Surveillance

  Epidemic Information Exchange (Epi-X)

Foodborne Disease Active Surveillance Network (FoodNet)

Epi-X is a secure, Web-based communication system operating in all 50
states. CDC uses this system primarily to share information relevant to
disease outbreaks with state and local public health officials and with
other federal officials. Epi-X also serves as a forum for routine
professional discussions and non-emergency inquiries. Authorized Epi-X
users can post questions and reports, query CDC, and receive feedback on
ongoing infectious disease control efforts. According to CDC, as of 2004,
over 1,200 public health officials at the federal, state, and local levels
had used the system to communicate with colleagues and experts, track
information for outbreak investigations and response efforts, conduct
online discussions, and request assistance.

FoodNet is a surveillance system that is a collaborative effort among CDC,
USDA, and FDA. FoodNet operates in nine states that participate in CDC's
Emerging Infections Program. FoodNet provides a network for responding to
new and emerging foodborne diseases of national importance, monitoring
foodborne diseases, and identifying the sources of specific foodborne
diseases. FoodNet is used to detect cases or outbreaks of foodborne
disease, identify their source, recognize trends, and respond to
outbreaks. State public health departments that participate in FoodNet
receive funds from CDC to systematically contact laboratories in their
geographical areas to solicit incidence data. As a result of this active
solicitation, FoodNet is intended to provide more accurate estimates of
the occurrence of foodborne diseases than are otherwise available.

Global Outbreak Alert and Response Network (GOARN)

  Global Public Health Intelligence Network (GPHIN)

GOARN electronically links WHO member countries, disease experts,
agencies, and laboratories in order to keep them informed of disease
outbreaks, either rumored or confirmed. GOARN is the primary mechanism by
which WHO mobilizes technical resources for the investigation of, and
response to, disease outbreaks of international importance. GOARN issues
real-time outbreak alerts and gathers global disease information from a
number of sources, including media reports, ministries of health,
laboratories, academic institutes, and WHO offices in various countries.

GPHIN is an electronic system developed by Canadian health officials and
used by WHO. GPHIN is an Internet-based application that searches in
French and English more than 950 news feeds and discussion groups around
the world in the media and on the Internet for information on possible
outbreaks of infectious diseases. CDC officials said that

     Appendix III: Selected List of Systems and Networks Engaged in Disease
                                  Surveillance

translation capabilities will be expanded in 2004 from French and English
to also include Arabic, Chinese, Russian, and Spanish.

Health Alert Network (HAN)

Infectious Diseases Society of America Emerging Infections Network
(IDSA-EIN)

  Laboratory Response Network (LRN)

CDC operates an early warning and response system, the Health Alert
Network (HAN), that is designed to ensure that state and local health
departments as well as other federal agencies and departments have timely
access to emerging health information. Through HAN, CDC issues health
alerts and other public health bulletins to an estimated 1 million public
health officials, including physicians, nurses, laboratory staff, and
others.

IDSA-EIN is a network of over 900 infectious disease practitioners. The
network surveys its members regularly on topical issues in clinical
infectious diseases. It also enhances communications and health education
among its members, collaborates in research projects, and provides
assistance during outbreak investigations. Its membership represents a
source of infectious disease expertise for CDC and state health
departments to draw on during outbreaks or when unusual illnesses occur.

LRN is an integrated network of public health and clinical laboratories
run by CDC to test specimens and develop diagnostic tests for identifying
infectious diseases and biological or chemical agents. The network
includes the following types of laboratories-federal, state and local
public health, military, and international laboratories, as well as
laboratories that specialize in food, environmental, and veterinary
testing. Some LRN laboratories provide highly specialized tests not always
available in state public health or commercial laboratories.

National Animal NAHRS is collaborative program with USDA, the U.S. Animal
Health

Association, the American Association of Veterinary LaboratoryHealth
Reporting Diagnosticians, and participating states. NAHRS collects data
from state System (NAHRS) veterinarians in participating states on the
presence of confirmed clinical

diseases of major international significance in livestock, poultry and
aquaculture species in the United States. Individual state reports are
submitted monthly to the central collection point at the USDA where they
are verified, summarized and compiled into a report.

     Appendix III: Selected List of Systems and Networks Engaged in Disease
                                  Surveillance

  National Electronic Disease Surveillance System (NEDSS)

National Electronic Telecommunications System for Surveillance (NETSS)

  National Retail Data Monitor (NRDM)

CDC's NEDSS is an initiative that is designed to make the electronic
reporting of disease surveillance data to CDC by state and local health
departments more timely, accurate, and complete. Specifically, NEDSS is
intended to replace or enhance the interoperability of CDC's numerous
existing surveillance systems. Interoperability is the ability of two or
more systems or components to exchange information and to use the
information that has been exchanged. As part of the NEDSS initiative, CDC
is developing an architecture that consists of a set of standards that can
be used for creating interoperability among systems. These standards
comprise (1) data standards, (2) parameters for an Internet-based
communications infrastructure, and (3) policy-level agreements on data
access and sharing as well as on protections for confidentiality. CDC has
also developed ready-to-use software-the NEDSS-Base system (NBS)- that
operates within these standards.

NETSS is a computerized public health surveillance system that provides
CDC with weekly data regarding cases of nationally notifiable diseases.
Core surveillance data-date, county, age, sex, and race/ethnicity-and some
disease-specific epidemiologic information for nationally notifiable
diseases and for some nonnotifiable diseases are transmitted
electronically by the state public health departments to CDC through NETSS
each week. Data from NETSS is published in CDC's Morbidity and Mortality
Weekly Report. NETSS will be phased out as NEDSS is deployed and
implemented.

NRDM is a syndromic surveillance system developed by the University of
Pittsburgh in collaboration with CDC and others, and it is used by state
public health officials. NRDM collects data from retail sources. NRDM
collects sales data from 19,000 stores, including pharmacies, to monitor
sales patterns in such items as over-the counter medications for signs of
a developing infectious disease outbreak. The system looks for unusual
sales patterns-such as -a spike in the number of over-the-counter
medications purchased in a particular city or county-that might indicate
the onset of an infectious disease outbreak. The system monitors the data
automatically on a daily basis and generates summaries of sales patterns
using timelines and maps.

     Appendix III: Selected List of Systems and Networks Engaged in Disease
                                  Surveillance

National Veterinary Services Laboratories (NVSL)

  PulseNet

Real-time Outbreak and Disease Surveillance (RODS)

NVSL are veterinary laboratories run by USDA. These laboratories are the
only U.S. federal veterinary reference laboratories to provide diagnostics
for domestic and foreign animal diseases. NVSL also provides diagnostic
support for disease control and eradication programs, testing imported and
exported animals, training, and laboratory certification for selected
diseases.

PulseNet is a national network of public health laboratories that perform
DNA "fingerprinting" on bacteria that may be foodborne. The network
idenifies and labels each "fingerprint" pattern and permits rapid
comparison of these patterns through an electronic database at CDC. This
network is intended to provide an early warning system for outbreaks of
foodborne disease.

RODS is a syndromic surveillance system developed by the University of
Pittsburgh and used by state public health officials. RODS automatically
gathers data from hospital clinical encounters in order to identify
patients' chief medical complaints, classify them according to syndrome,
and aggregate that data in order to look for anomalous increases in
certain syndromes that may reveal an infectious disease outbreak.

Sexually Transmitted 	STD*MIS is an electronic system used by state and
local health departments to report sexually transmitted diseases to CDC.

Disease Management Information System (STD*MIS)

Systematic Tracking 	STELLAR is an electronic system used by state and
local health departments to report lead poisoning cases to CDC.

  of Elevated Lead Levels & Remediation (STELLAR)

Appendix IV: Comments from the Department of Health and Human Services

Appendix IV: Comments from the Department of Health and Human Services

Appendix IV: Comments from the Department of Health and Human Services

Appendix V: GAO Contacts and Staff Acknowledgments

GAO Contacts 	Kristi A. Peterson, (202) 512-7951 Gloria E. Taylor, (202)
512-7160

Acknowledgments 	In addition to the persons named above, Louise M.
Duhamel, Krister Friday, Gay Hee Lee, and Merrile Sing made key
contributions to this report.

Related GAO Products

Emerging Infectious Diseases: Asian SARS Outbreak Challenged International
and National Responses. GAO-04-564. Washington, D.C.: April 28, 2004.

Public Health Preparedness: Response Capacity Improving, but Much Remains
to Be Accomplished. GAO-04-458T. Washington, D.C.: February 12, 2004.

Infectious Diseases: Gaps Remain in Surveillance Capabilities of State and
Local Agencies. GAO-03-1176T. Washington, D.C.: September 24, 2003.

Severe Acute Respiratory Syndrome: Established Infectious Disease Control
Measures Helped Contain Spread, But a Large-Scale Resurgence May Pose
Challenges. GAO-03-1058T. Washington, D.C.: July 30, 2003.

Bioterrorism: Information Technology Strategy Could Strengthen Federal
Agencies' Abilities to Respond to Public Health Emergencies. GAO-03-139.
Washington, D.C.: May 20, 2003.

SARS Outbreak: Improvements to Public Health Capacity Are Needed for
Responding to Bioterrorism and Emerging Infectious Diseases. GAO-03769T.
Washington, D.C.: May 7, 2003.

Bioterrorism: The Centers for Disease Control and Prevention's Role in
Public Health Protection. GAO-02-235T. Washington, D.C.: November 15,
2001.

Food Safety: CDC Is Working to Address Limitations in Several of Its
Foodborne Disease Surveillance Systems. GAO-01-973. Washington, D.C.:
September 7, 2001.

Global Health: Challenges in Improving Infectious Disease Surveillance
Systems. GAO-01-722. Washington, D.C.: August 31, 2001.

West Nile Virus Outbreak: Lessons for Public Health Preparedness.
GAO/HEHS-00-180. Washington, D.C.: September 11, 2000.

Global Health: Framework for Infectious Disease Surveillance.
GAO/NSIAD-00-205R. Washington, D.C.: July 20, 2000.

West Nile Virus: Preliminary Information on Lessons Learned.
GAO/HEHS-00-142R. Washington, D.C.: June 23, 2000.

Related GAO Products

Emerging Infectious Diseases: National Surveillance System Could Be
Strengthened. GAO/T-HEHS-99-62. Washington, D.C.: February 25, 1999.

Emerging Infectious Diseases: Consensus on Needed Laboratory Capacity
Could Strengthen Surveillance. GAO/HEHS-99-26. Washington, D.C.: February
5, 1999.

  GAO's Mission

Obtaining Copies of GAO Reports and Testimony

The Government Accountability Office, the audit, evaluation and
investigative arm of Congress, exists to support Congress in meeting its
constitutional responsibilities and to help improve the performance and
accountability of the federal government for the American people. GAO
examines the use of public funds; evaluates federal programs and policies;
and provides analyses, recommendations, and other assistance to help
Congress make informed oversight, policy, and funding decisions. GAO's
commitment to good government is reflected in its core values of
accountability, integrity, and reliability.

The fastest and easiest way to obtain copies of GAO documents at no cost
is through GAO's Web site (www.gao.gov). Each weekday, GAO posts newly
released reports, testimony, and correspondence on its Web site. To have
GAO e-mail you a list of newly posted products every afternoon, go to
www.gao.gov and select "Subscribe to Updates."

                             Order by Mail or Phone

The first copy of each printed report is free. Additional copies are $2
each. A check or money order should be made out to the Superintendent of
Documents. GAO also accepts VISA and Mastercard. Orders for 100 or more
copies mailed to a single address are discounted 25 percent. Orders should
be sent to:

U.S. Government Accountability Office 441 G Street NW, Room LM Washington,
D.C. 20548

To order by Phone: 	Voice: (202) 512-6000 TDD: (202) 512-2537 Fax: (202)
512-6061

  To Report Fraud, Contact:

Waste, and Abuse in Web site: www.gao.gov/fraudnet/fraudnet.htm

E-mail: [email protected] Programs Automated answering system: (800)
424-5454 or (202) 512-7470

Gloria Jarmon, Managing Director, [email protected](202)
512-4400Congressional U.S. Government Accountability Office, 441 G Street
NW, Room 7125 Relations Washington, D.C. 20548

Public Affairs 	Jeff Nelligan, Managing Director, [email protected] (202)
512-4800 U.S. Government Accountability Office, 441 G Street NW, Room 7149
Washington, D.C. 20548

                               Presorted Standard
                              Postage & Fees Paid
                                      GAO
                                Permit No. GI00

United States
Government Accountability Office
Washington, D.C. 20548-0001

Official Business
Penalty for Private Use $300

Address Service Requested
*** End of document. ***