O I G
FFICE OF  NSPECTOR  ENERAL
 
http://www.oig.hhs.gov/ 
The mission of the Office of Inspector General (OIG), as mandated by Public Law 95-452, as amended 
by Public Law 100-504, is to protect the integrity of the Department of Health and Human Services 
(HHS) programs, as well as the health and welfare of beneficiaries served by those programs.  This 
statutory mission is carried out through a nationwide network of audits, investigations, and inspections 
conducted by the following operating components: 
Office of Audit Services 
The OIG's Office of Audit Services (OAS) provides all auditing services for HHS, either by conducting 
audits with its own audit resources or by overseeing audit work done by others.  Audits examine the 
performance of HHS programs and/or its grantees and contractors in carrying out their respective 
responsibilities and are intended to provide independent assessments of HHS programs and operations in 
order to reduce waste, abuse, and mismanagement and to promote economy and efficiency throughout the 
Department. 
Office of Evaluation and Inspections 
The OIG's Office of Evaluation and Inspections (OEI) conducts short-term management and program 
evaluations (called inspections) that focus on issues of concern to the Department, the Congress, and the 
public.  The findings and recommendations contained in the inspection reports generate rapid, accurate, 
and up-to-date information on the efficiency, vulnerability, and effectiveness of departmental programs. 
Office of Investigations 
The OIG's Office of Investigations (OI) conducts criminal, civil, and administrative investigations of 
allegations of wrongdoing in HHS programs or to HHS beneficiaries and of unjust enrichment by 
providers.  The investigative efforts of OI lead to criminal convictions, administrative sanctions, or civil 
monetary penalties.  The OI also oversees State Medicaid fraud control units which investigate and 
prosecute fraud and patient abuse in the Medicaid program. 
Office of Counsel to the Inspector General 
The Office of Counsel to the Inspector General (OCIG) provides general legal services to OIG, rendering 
advice and opinions on HHS programs and operations and providing all legal support in OIGs internal 
operations.  The OCIG imposes program exclusions and civil monetary penalties on health care providers 
and litigates those actions within the Department.  The OCIG also represents OIG in the global settlement 
of cases arising under the Civil False Claims Act, develops and monitors corporate integrity agreements, 
develops model compliance plans, renders advisory opinions on OIG sanctions to the health care 
community, and issues fraud alerts and other industry guidance.   E X E C U T I V E  S U M M A R Y  
PURPOSE 
Examine obstetrician barriers to offering HIV testing to pregnant women and newborns in order 
to reduce the incidence of perinatally transmitted HIV. 
BACKGROUND 
This report originated from the Ryan White CARE Act Amendments of 2000 which mandated 
that a study be conducted regarding perinatal HIV transmission. The Secretary assigned 
responsibility for the study to the Health Resources and Services Administration (HRSA), who 
then requested that the Office of Inspector General conduct the study. 
Section 2628 of the law requests a study to determine any barriers, including legal barriers, 
that prevent or discourage an obstetrician from making it a routine practice to offer pregnant 
women an HIV test and a routine practice to test newborn infants for HIV disease in 
circumstances in which the obstetrician does not know the HIV status of the mother. To 
accomplish this, we conducted a national survey of obstetricians, a survey of obstetrician State 
representatives, a survey of State HIV/AIDS directors and in-depth case studies in six high 
prevalence States.  These surveys are limited to the issues laid out in the law. It is important to 
recognize, however, that these issues do not represent the full spectrum of services necessary to 
prevent perinatal transmission. 
The mandate also requests a determination of the number of newborn infants with HIV born in 
the United States with respect to whom the attending obstetrician for the birth did not know the 
HIV status of the mother. The Centers for Disease Control and Prevention (CDC) agreed 
with our request to provide the specified estimate.  Finally, the law directs the Secretary to 
provide to Congress information regarding States progress in fiscal year 2004. 
REQUIRED ESTIMATE 
In 2000, an estimated 80 to 110 HIV-infected infants were born to mothers who had 
not been diagnosed prior to birth 
Of the 280-370 infants infected through perinatal transmission in 2000, the mother was not 
diagnosed with HIV until after the birth of the child in approximately 29 percent of the cases. 
Thus 80-110 HIV-infected infants were born to mothers who had not yet been diagnosed with 
HIV. If these women had been diagnosed and treated beginning in prenatal care, we estimate 
that the total number of HIV positive infants could be reduced by 70-90 infants, a decrease of 
25 percent in the overall transmission of perinatal HIV. 
i 
Reducing Barriers to HIV Testing  OEI-05-01-00260  BARRIERS AFFECTING OBSTETRICIANS 
PRENATAL SETTING: Obstetricians routinely offer HIV testing as part of their 
standard prenatal practice; however, barriers affect approximately one-third of 
obstetricians 
Ninety-three percent of obstetricians reported that they routinely offer HIV testing to their 
pregnant patients. However, 32 percent of all obstetricians, regardless of their testing practice, 
indicated ever facing a barrier that prevented them from offering an HIV test to a prenatal 
patient. Considering this, 66 percent of obstetricians reported both routinely testing and having 
never encountered a barrier.  The top barrier, affecting 15 percent of obstetricians, was 
language. The next most frequently mentioned barriers were a patients late entry into prenatal 
care and the physicians perception that their patient population is at low risk for HIV. The 
time involved in the pretest counseling and consent process were also mentioned as barriers by 
5 percent of obstetricians. 
LABOR AND DELIVERY SETTING: Significant barriers prevent almost half of 
obstetricians from routinely offering HIV testing during labor and delivery 
Only 48 percent of obstetricans reported routinely offering HIV testing to women with 
unknown status during labor, and 17 percent reported never offering testing during labor.  At 
least one barrier was reported by 44 percent of obstetricians: 36 percent reported barriers 
related to the HIV counseling and consent process, and about 20 percent reported barriers 
related to limitations in HIV testing technology to produce timely results. 
NEWBORNS: Obstetricians do not routinely test newborns for HIV, primarily 
because it is not their responsibility 
Ninety-three percent of obstetricians reported that HIV testing of newborns is the responsibility 
of the newborns physician. Despite this fact, one-fifth of obstetricians report always 
recommending HIV testing for the newborn to the newborns physician in cases where the 
mothers HIV status is unknown. 
STATE EFFORTS: Almost all States report actions addressing obstetrician 
barriers to offering HIV testing to all pregnant women 
Fifty States indicated that they have undertaken efforts to address barriers. While the extent of 
these efforts vary widely, they are primarily focused on provider education and training. 
Eighteen States indicated that they are engaged in monitoring and/or enforcement activities. A 
majority of States report that impacting private obstetrician testing practices is a major 
challenge, and about half of States report that competing priorities take precedence in their 
States. 
ii 
Reducing Barriers to HIV Testing  OEI-05-01-00260  RECOMMENDATIONS 
The CDC Should Facilitate the Development of Administrative Tools and States 
Should Promote Administrative Tools to Make Prenatal HIV Testing Universally 
Routine 
In order to encourage universal HIV screening of pregnant women, we recommend that the 
CDC and States develop administrative tools that ease the burden of the testing process and 
send a message that HIV screening is an expected part of prenatal care. These should include 
such things as prenatal forms that include HIV testing status and a simplified consent form that 
includes the minimum pretest information needed for informed consent. To assist in this effort, 
the CDC could develop model forms for the States to disseminate at the local level. States 
should work to have the model forms incorporated at the local level or ensure that HIV testing 
documentation on relevant medical charts is occurring. 
The CDC and HRSA, in Collaboration with CMS, Should Facilitate Efforts to 
Expand the Capacity to Offer Linguistically Appropriate HIV Patient Education and 
Consent Materials 
The CDC, HRSA and Centers for Medicare & Medicaid Services (CMS) should coordinate 
their efforts to provide linguistically appropriate, culturally sensitive patient education materials. 
Also, maintaining referral information on qualified national language banks and telephone 
translation services could help to alleviate language barriers to offering HIV testing. 
The CDC Should Facilitate Development and States Implementation of Protocols 
for HIV Testing During Labor and Delivery in Order to Promote Testing in This 
Setting as the Standard of Care 
The CDC should develop a model protocol for HIV testing of women with unknown HIV 
status at labor and delivery, encompassing counseling and consent during labor, technical 
capacity of hospital laboratories, and administrative handling of information on testing status. 
States should adopt and promote the CDCs labor and delivery protocols and assist institutions 
in incorporating them. 
The CDC Should Encourage and Assist States to Appropriately Monitor HIV 
Testing of Pregnant Women 
The CDC should assist States in developing monitoring systems that are appropriate to State 
and local needs.  The monitoring currently being conducted in several States offers a continuum 
of potential monitoring models for the rest of the country.  These range from requiring providers 
to report HIV testing to assessing missed opportunities to prevent future HIV infection. 
iii 
Reducing Barriers to HIV Testing  OEI-05-01-00260  The CDC, HRSA and States Should Promote Public/Private Partnerships to 
Design, Implement and Institutionalize Targeted Efforts to Remove Obstetrician 
Barriers 
The CDC and HRSA should utilize public/private partnerships in implementing all the 
recommendations in this report by expanding current partnership projects.  States should also 
strive to incorporate private partners in implementing all the recommendations in this report. 
The CDC and HRSA could promote public/private partnerships by writing collaborative 
language into their grant applications and program guidance, and by offering technical assistance 
regarding building and sustaining partnerships. 
AGENCY COMMENTS 
We received comments on our draft report from HRSA, CDC, CMS and American College 
Obstetricians and Gynecologists.  Each organization indicated that the report presented useful 
information for shaping future efforts to increase the HIV testing rates of obstetricians and 
thereby reduce perinatal HIV transmission. Each organization also supported the substance of 
the recommendations. The CDC, however, expressed concern that they were called upon to 
take a leadership role, stating that their mission revolves around prevention rather than 
developing standards and guidelines for health care practice. 
We recognize that CDC is not always in the position to direct outside groups and that in these 
cases their leadership comes in the form of support and influence. We have modified our 
recommendations accordingly by emphasizing CDCs ability to facilitate desirable actions and 
outcomes. By emphasizing CDCs role as facilitator, we reflect on their initial success in 
promoting HIV testing of pregnant women via official recommendations for testing and through 
their administration of the perinatal prevention grants.  We believe that, as part of their 
prevention mission, CDC has a powerful role to play in facilitating and orchestrating further 
efforts to ensure that HIV testing is offered to all pregnant women. 
We also recognize that the recommendations will require a broad array of resources beyond 
that which CDC alone can bring to bear. For this reason the recommendations are directed not 
at CDC alone, but CDC in collaboration with  HRSA, CMS, and the States in public/private 
partnerships. We hope that all of the stakeholders mentioned, including private obstetricians, 
will actively collaborate with CDC to accomplish these recommendations. 
iv 
Reducing Barriers to HIV Testing  OEI-05-01-00260  T A B L E   O F  C O N T E N T S  
PAGE
 
EXECUTIVE SUMMARY ...................................................... i
 
INTRODUCTION  ............................................................1
 
FINDINGS
 
HIV-Infected Infants Born to Undiagnosed Mothers ..............................12
 
Testing Routinely Offered During Prenatal Care, However Barriers Remain ............. 14
 
Significant Barriers for Testing During Labor and Delivery .......................... 19
 
Obstetricians Do Not Test Newborns; Not Their Responsibility  ..................... 23
 
States Actions Addressing Obstetrician Barriers  ................................24
 
RECOMMENDATIONS ...................................................... 27
 
AGENCY COMMENTS  ...................................................... 37
 
APPENDICES
 
A:  Obstetrician Barriers Identified by States ....................................39
 
B: State Laws, Regulations and Policies .......................................43
 
C:  State Efforts to Address Obstetrician Barriers ................................47
 
D: Methodology for National Estimate ........................................51
 
E: National Obstetrician Survey Instrument  ....................................59
 
F: Confidence Intervals for Selected Point Estimates  .............................63
 
G: Logistic Regression Models  ..............................................65
 
H: Non-Response Analysis ................................................. 69
 
I:  Agency Comments  ....................................................71
 
J: End Notes ...........................................................79
 
ACKNOWLEDGMENTS  ..................................................... 83
 
v 
Reducing Barriers to HIV Testing  OEI-05-01-00260  I N T R O D U C T I O N  
PURPOSE 
Examine obstetrician barriers to offering HIV testing to pregnant women and newborns in order 
to reduce the incidence of perinatally transmitted HIV. 
BACKGROUND 
This report originated from the Ryan White CARE Act Amendments of 2000 which mandated 
that a study be conducted to provide the following information: 
1.	  For the most recent fiscal year for which the information is available, a determination of 
the number of newborn infants with HIV born in the United States with respect to 
whom the attending obstetrician for the birth did not know the HIV status of the 
mother. 
2.	  A determination for each State of any barriers, including legal barriers, that prevent or 
discourage an obstetrician from making it a routine practice to offer pregnant women an 
HIV test and a routine practice to test newborn infants for HIV disease in 
circumstances in which the obstetrician does not know the HIV status of the mother of 
the infant. 
3.	  Recommendations for each State for reducing the incidence of cases of the perinatal 
transmission of HIV, including recommendations on removing the barriers identified.1 
The Secretary assigned responsibility for this study to the Health Resources and Services 
Administration, who then requested that the Office of Inspector General (OIG) conduct the 
study. The Secretary is also required to provide Congress with information regarding States 
progress in fiscal year 2004. 
In 1992, the annual incidence of perinatally-acquired AIDS peaked, and an estimated 907 
HIV-infected children were born.2 In 1994, the Pediatric AIDS Clinical Trial Group (PACTG) 
Protocol 076 demonstrated that by administering the drug zidovudine (ZDV) during pregnancy 
and during delivery intravenously, and later to the newborns, doctors could reduce by two-
thirds the risk of perinatal HIV transmission. The PACTG 076 study found that without the 
drug treatment HIV-infected women faced a 25 percent risk of transmitting HIV to their infants, 
however with zidovudine the transmission rate fell to 8 percent.  Subsequent studies using 
multiple treatment strategies have achieved transmission rates as low as 1-2 percent.3 
1 
Reducing Barriers to HIV Testing  OEI-05-01-00260  The CDC Guidelines for HIV Counseling and Testing of Pregnant Women 
In response to the success of the PACTG 076, the CDC, through the Department of Health 
and Human Services, Public Health Service (PHS) issued guidelines in 1995 recommending 
universal counseling and voluntary testing of all pregnant women and zidovudine treatment 
among those testing positive. The American College of Obstetricians and Gynecologists 
(ACOG), the American Academy of Pediatrics (AAP) and other professional associations 
endorsed these guidelines4, and most States have adopted either policies or laws that reflect the 
essence of the PHS guidelines.5 
In 1996, Congress commissioned the Institutes of Medicine (IOM) to conduct a study looking 
at further reducing perinatal HIV transmission.6 In 1999, the IOMs report, Reducing the 
Odds: Preventing Perinatal Transmission of HIV in the United States, recommended the 
adoption of a national policy of universal HIV testing, with patient notification, as a routine 
component of prenatal care. This means that HIV testing would be conducted as one of the 
standard battery of prenatal tests, and that women would be informed of their right to refuse the 
test. 
Recently, CDC responded to the IOM report by issuing revised guidelines for voluntary HIV 
screening of pregnant women.  Although CDC did not adopt the IOMs central 
recommendation to include HIV testing with patient notification as part of the standard battery 
of prenatal testing, the revised CDC guidelines include simplification of the pretest process: 
CDC recommends that women receive the minimum information needed for consent to testing, 
and receive other HIV prevention education separate from the test.  Differences from the 
original PHS guidelines include increased emphases on HIV testing as a routine component of 
prenatal care, on exploring and addressing reasons for test refusal, on testing and treatment at 
delivery for women with unknown HIV status, and on encouraging newborn testing if the 
mothers status remains unknown postpartum.7 
HIV Testing During Prenatal Care 
While there are multiple aspects related to the reduction of perinatal transmission, including 
accessing prenatal care, treatment acceptance and adherence to the medication regimen, an 
important aspect is being aware of HIV status in order to make informed decisions regarding 
treatment. The earlier the initiation of treatment, the lower the potential of passing HIV on to 
the child. Therefore, HIV testing during prenatal care is crucial for the best possible treatment 
outcomes. 
According to Pregnancy Risk Assessment Monitoring System (PRAMS) data from 14 States, 
between 58 to 81 percent of mothers received HIV testing during pregnancy in 1997.  Women 
were most likely to receive prenatal counseling and testing who were: African-American, 
covered under Medicaid, under 25 years of age, seen by public health care providers, and who 
had less than a high school education. About 71 percent of mothers in States with high 
seroprevalence recall being tested for HIV, compared to 58 percent of mothers in low 
seroprevalence States.8 
2 
Reducing Barriers to HIV Testing  OEI-05-01-00260  The IOM study identified several barriers that prevented some health-care providers from 
offering HIV testing to all their pregnant patients.9 Some providers believed they could predict 
which women were at risk for HIV.  As a result, they selectively offered the test to those 
perceived to be at risk. In addition, some providers reported that HIV testing protocols, 
especially pretest counseling requirements, were too burdensome to follow for all their pregnant 
patients. Other studies have identified some additional barriers, including insufficient time, 
reimbursement issues, informing a pregnant woman she is HIV positive, patient refusal, treating 
an HIV positive patient, concern about offending the patient by offering the test, late entry into 
prenatal care and low priority of HIV testing.10 
HIV Testing at Labor and Delivery 
Studies have demonstrated that treatment at labor and delivery can reduce transmission risk by 
50 percent among women who have not received prenatal treatment. Women who have not 
received any prenatal care may be able to benefit from last minute treatment during labor if their 
HIV status can be determined.  Perinatal surveillance data from CDC indicates that 14 percent 
of HIV-infected women did not receive prenatal care.11 
Because of the need to get HIV test results as quickly as possible in the labor/delivery setting, 
rapid and expedited HIV testing is receiving increasing attention. Currently, rapid testing is not 
in widespread use.  In lieu of rapid testing, standard HIV tests can be expedited by using on-
site laboratories and running the tests individually, instead of waiting to run them in batches. 
There is one rapid test, the Abbott/Murex Single Use Diagnostic Systems (SUDS) HIV-1, 
currently approved by the Food and Drug Administration (FDA) for marketing and use in the 
United States. This test returned to production as of April 2001 after being voluntarily pulled 
from the market by the manufacturer in October 2000 when finished lots began failing certain 
control specifications.  Other rapid HIV tests are currently being reviewed by the FDA for 
approval. In order to promote the commercial distribution of a new generation of rapid HIV 
tests, FDA has committed to assisting device manufacturers who wish to bring rapid tests to 
market and to prioritizing the review of rapid HIV test applications.  Despite the priority placed 
on bringing new rapid tests to market expeditiously, it is impossible to determine when these 
new tests will be available and it may be years before reliable rapid tests are widely used. 
HIV Testing of Newborns 
The CDC recommends that a mother whose HIV status is unknown after delivery be informed 
that HIV testing is recommended for her newborn and could impact the childs health.12 If 
newborns are identified as HIV-exposed,13 CDC guidelines recommend treatment to prevent 
HIV transmission within 6 to 12 hours after birth and treatment within 4 to 6 weeks to prevent a 
common opportunistic infection that is often fatal. New York mandates HIV testing of all 
newborns and Connecticut mandates newborn testing for infants whose mothers HIV status is 
unknown. 
3 
Reducing Barriers to HIV Testing  OEI-05-01-00260  Trends in Perinatal HIV Transmission 
The annual incidence of perinatally-acquired AIDS increased steadily from 1984 to its peak of 
907 in 1992.14  This was followed by an 83 percent decline in perinatal AIDS cases from 
1992 to 1999.15 The CDC attributes most of this decline to successful implementation of PHS 
guidelines for HIV testing and treatment.16 Births to HIV-infected women continue to decline, 
but do not fully explain the decline in rates of AIDS among infants.  Rates of AIDS among 
infants declined 69 percent from 1992 to 1996 even though births to HIV positive women only 
declined by 17 percent.17 It is difficult to estimate trends in perinatal HIV incidence because 
the Survey of Childbearing Women was discontinued and all States do not report perinatally 
HIV exposed infants with follow-up to ascertain infection status.  While all States report AIDS 
cases to CDC, only 34 States and 2 territories report HIV cases.18 
In the United States, approximately 6,000 to 7,000 HIV-infected women give birth each 
year.19 Without intervention, a 25 percent mother-to-infant transmission rate would result in the 
birth of an estimated 1,000-2,000 HIV-infected infants annually in the United States.20 By end 
of December of 2000, 1,611 children were reported to be living with HIV and an additional 
2,703 children were reported to be living with AIDS.21 Approximately 91 percent of all 
pediatric (under age 13) AIDS cases were attributed to perinatal transmission.22 Through June 
1998, the majority of the cumulative number of perinatally acquired AIDS cases were 
diagnosed in the Northeast (44 percent), followed by the South (36 percent).23  In fact, New 
York, Florida, New Jersey and California accounted for 58 percent of all cases.24 
The Health Resources and Services Administration 
The HIV/AIDS Bureau within the Health Resources and Services Administration (HRSA) 
provides funding to States and other entities for the delivery of health care and support services 
to individuals and families affected by HIV disease through the Ryan White CARE Act 
programs.  Most HRSA programs related to perinatal HIV transmission are funded through 
Title IV grants, which allocated $65 million in 2001 to State and local programs.  These 
services include primary and specialty medical care, psychosocial services, and logistical 
support for women and their families affected by HIV as well as outreach and prevention to 
provide a continuum of care for at-risk populations.25 Two other HRSA Bureaus, the Bureau 
of Health Professionals and the Bureau of Primary Health Care, administer programs that 
involve perinatal providers and underserved populations, respectively. 
The Maternal and Child Health Bureau (MCHB) provides block grant funding to States 
Maternal and Child Health (MCH) programs to promote and improve the health of mothers 
and children. In addition to block grants, MCHB funds special projects including a grant to the 
American College of Obstetricians and Gynecologists (ACOG) that was used to create 
Perinatal HIV Prevention Provider Partnerships between obstetricians and State health 
departments in two States. The MCHB also administers the 
4 
Reducing Barriers to HIV Testing  OEI-05-01-00260  Healthy Start program in 94 sites to improve health care access and outcomes for women and 
infants by promoting healthy behaviors and combating the causes of infant mortality. 
Current Projects of the Centers for Disease Control and Prevention 
One of CDCs goals is to provide leadership in preventing and controlling HIV infection. The 
CDC pursues this goal through community, State, national, and international partnerships.  The 
CDC's prevention efforts include support for State and local prevention activities, education 
programs, disease surveillance, and research designed to identify the most effective 
interventions to combat HIV. The CDC has established a supplemental funding program to 
specifically address perinatal HIV prevention through grants for the following several 
programs.26 
Using HIV Perinatal Prevention Cooperative Agreements, CDC has awarded $6,300,000 
annually since 1999 to 16 State and local health departments to reach pregnant women at high 
risk for HIV. The goals include ensuring that healthcare providers counsel pregnant women on 
HIV testing, making voluntary HIV testing available to pregnant women whenever and 
wherever they access the medical care system, ensuring that infected or at-risk women receive 
appropriate prenatal care and ensuring women and infants access to appropriate prevention 
interventions and treatment services. 
In 2000, 26 State and local health departments were funded at a total of $1,867,000 to 
conduct on-going enhanced surveillance of newborns who have been perinatally exposed or 
infected with HIV. Health departments collect extensive surveillance data about mother-infant 
pairs using a wide variety of medical records, birth and death certificates and laboratory 
reports.  One of the goals of this project is to assist in evaluating perinatal prevention efforts. 
For example, some health departments are using the data gathered to examine missed 
opportunities in prevention in cases where a newborn was infected. 
The CDC allocated $933,000 in 2000 in professional education and training grants to six 
grantees.  Grants went to two organizations for MCH programs:  CityMatCH, dedicated to 
improving maternal and child health in urban areas, and the Association of Maternal and Child 
Health Programs (AMCHP) who works with State public health MCH programs. The 
CityMatCH funding will support three Urban Perinatal HIV Prevention Learning Clusters. 
The Urban Learning Clusters, teams of scientists, issue experts, policy-makers and 
practitioners, promote the translation of research and data into effective practice in urban 
communities with the highest rates of perinatal HIV.  The funding to AMCHP will support eight 
State Action Learning Labs. These working groups bring together cross-program teams of 
State health officials, obstetricians and other key players involved in the prevention of the 
perinatal transmission of HIV. 
The other four organizations to which CDC awarded professional education and training grants 
include: ACOG, AAP, the National Pediatric and Family HIV Resource Center and the AIDS 
Alliance for Children, Youth & Families.  These funds are used to educate health care 
providers about the importance of HIV counseling and testing and ways to prevent the 
transmission of perinatal HIV. Grants include provisions to evaluate 
5 
Reducing Barriers to HIV Testing  OEI-05-01-00260  providers knowledge, attitudes, and behaviors. In particular, ACOG used their funding to 
conduct a national survey of obstetricians, and disseminate prevention materials to obstetricians. 
Their survey revealed a reduction in barriers after broad distribution of their professional and 
patient materials on perinatal HIV. 
In addition to the Congressional funding described above for perinatal HIV prevention 
activities, CDC also supports a number of research projects addressing perinatal HIV 
transmission. These include: 1) the Perinatal Guidelines Evaluation project, 2) the Perinatal 
AIDS Collaborative Transmission study, 3) the Pediatric Spectrum of Disease Project, and 4) 
the Mother-Infant Rapid Intervention At Delivery (MIRIAD). 
The MIRIAD study explores HIV testing and treatment during labor and delivery for women 
whose testing status is unknown at delivery.  This study explores voluntary HIV testing with 
informed consent during labor or soon after birth. The MIRIAD study will result in a protocol 
for HIV testing in the delivery setting that will be generalizable to non-research hospital settings. 
This 4 year study includes researchers in five metropolitan areas. 
The Centers for Medicare & Medicaid Services 
The Centers for Medicare & Medicaid Services (CMS) oversees the Medicaid program, 
which includes expanded eligibility for pregnant women (to at least 133% of the Federal 
Poverty Level) to ensure access to prenatal care. Medicaid serves over 50 percent of adults 
and 90 percent of children with AIDS.27 Of the 18 million Medicaid-eligible women, CMS 
estimates that approximately 32,000 are HIV-infected and approximately 3,000 are HIV-
infected and pregnant.28 
The CMS developed the Maternal HIV Consumer Information Project (CIP) to increase 
patient and provider knowledge about prevention of perinatal HIV transmission. Specifically, 
CMS developed patient education brochures, posters and videos for States to use in order to 
promote the benefits of prenatal HIV testing and to raise awareness of Medicaid eligibility and 
coverage for prenatal care. The CMS initiated this project in 1995 as a demonstration project 
and has since expanded in some form to all States, the District of Columbia and Puerto Rico. 
SCOPE 
The scope of this evaluation is delineated in Section 213 of the Ryan White Reauthorization Act 
of 2000.  This section of the law requests an evaluation to identify the barriers that may 
discourage or prevent an obstetrician from routinely offering HIV tests to all pregnant women 
and/or all newborns whose mothers HIV status is unknown. In accordance with this mandate, 
our study focused solely on obstetricians and did not attempt to identify barriers faced by other 
providers of obstetric care such as family physicians or certified nurse midwives. The ACOG 
estimates that non-obstetricians deliver 15 percent of all births, and that a greater, yet unknown, 
percentage of prenatal care is provided by family physicians and certified nurse midwives.29 
Also in keeping 
6 
Reducing Barriers to HIV Testing  OEI-05-01-00260  with the specific mandate laid out in the law, our study focused only on barriers obstetricians 
face in offering HIV testing, as opposed to barriers that would prevent a test from actually 
occurring, such as women who do not access prenatal care at all, or women who refuse the 
HIV test. 
Figure 1 provides one way to understand how this study fits into the larger scheme of 
preventing perinatal HIV transmission. The cascade outlines the events that lead to perinatal 
transmission. Each step is important to consider in overall efforts to maximally reduce perinatal 
transmission rates.  This study focuses on women who are not offered HIV testing. Although 
this is only one event out of many that leads to a perinatal infection, it is an important step; 
research has shown that when testing and treatment are strongly recommended by providers, 
pregnant women are very unlikely to refuse.30 Therefore, whether a woman is offered HIV 
testing is crucial toward halting this cascade of events. It is important to recognize, however, 
that the offering of HIV testing is only one of the many aspects in the cascade of services 
necessary to prevent perinatal transmission.  Ultimately, to prevent HIV in children, preventing 
new HIV infections in women is an essential first step. 
Figure 1 
Cascade of Events Leading to the Number of Perinatally Infected Newborns 
The proportion of women... 
* who are HIV-infected 
* who become pregnant 
* who do not seek prenatal care, 
or who are not offered HIV testing or who refuse HIV testing 
* who are not offered treatment, or who refuse treatment 
* who do not complete treatment 
* whose child is infected despite treatment 
Source: Based on figure from the Institutes of Medicine report, Reducing the Odds 
METHODOLOGY 
National Estimate of HIV-infected Infants Where Obstetrician Did Not Know 
Mothers Status 
To address the request for a national estimate within the evaluation mandate, the Office of 
Inspector General requested that the Surveillance Branch of the Division of HIV/AIDS 
Prevention within the CDC, devise an appropriate estimate. In response to the OIG request, 
CDC has crafted an estimate that is very close to the legislative language. However, they 
cannot provide the exact figure requested. The mandate specifies an estimate of . . . the 
number of newborn infants with HIV born in the United States with respect to whom the 
attending obstetrician for the birth did not know the HIV status of the mother. The CDC 
provided an estimate of the total number of HIV-infected infants 
7 
Reducing Barriers to HIV Testing  OEI-05-01-00260  born in the United States for whom the mothers HIV status was not diagnosed until after 
delivery. 
The CDC estimate diverges from the Congressional request since some of the elements of the 
request are not routinely collected through HIV surveillance or other evaluation efforts. First of 
all, information regarding whether or not an obstetrician was aware of their patients HIV status 
during delivery is not available.  Furthermore, any attempt to investigate this information would 
be unreliable. An obstetrician who was not aware of a womans HIV status at delivery may 
never find out whether the woman or the newborn was later diagnosed with HIV.  Secondly, 
although the mandate specifies obstetricians, routine HIV surveillance does not make 
distinctions among providers.  Although national estimates exist indicating that 85 percent of all 
births are attended by obstetricians, these rates cannot be reliably applied to the tiny subset of 
births to women with unknown HIV status whose newborns are HIV infected. It is very likely 
that these deliveries share some qualities that would make them uncomparable to national 
figures. 
This estimate is modeled from data collected from multiple sources including some but not all 
States, during variable time periods, with different biases and limitations.  This amalgam 
represents the best data available. Since the cessation of the Survey of Childbearing Women in 
1995,31 there is no longer a single source of nationally representative data from which estimates 
of the number of HIV-infected infants born each year can be derived.  Currently, only 34 
States have instituted HIV reporting. Despite the many caveats, CDC feels that the figures 
represent a plausible range and are consistent with previously published CDC estimates. The 
full CDC methodology is included in Appendix D. 
Obstetrician Barriers to HIV Testing of Pregnant Women and Newborns 
To identify barriers that prevent or discourage obstetricians from HIV testing of pregnant 
women and/or newborns and to recommend actions to reduce testing barriers, our data 
collection focused first and foremost on the individual obstetrician perspective. Next we 
reviewed these issues from a State perspective by surveying the chairperson that heads each 
ACOG State organizational unit (District or Section) and State health department HIV/AIDS 
directors. Lastly, we conducted in-depth case studies in six States in order to fully understand 
the complexity of the existing barriers and to identify promising practices. All survey 
instruments included sections on barriers to offering testing during prenatal care, labor and 
delivery, and to newborns, and sections on solutions or efforts to address these barriers. 
Beyond interviewing experts in six States, we solicited input from national experts with a wide 
range of perspectives, including representatives from AIDS Alliance for Children, Youth & 
Families, the Childrens AIDS Fund, the National Minority AIDS Council, and the New York 
Assembly. We also solicited feedback on draft survey instruments from individual obstetrician 
volunteers, ACOG staff, National Association of State and Territorial AIDS Directors 
(NASTAD) staff and State HIV/AIDS directors from several States. 
8 
Reducing Barriers to HIV Testing  OEI-05-01-00260  National obstetrician mail survey 
For our national confidential survey of obstetricians, we obtained our sample from the 
membership list of the American College of Obstetricians and Gynecologists (ACOG) which 
represents 94.6 percent of all board certified obstetricians.  Using surveillance data from the 
CDC, we stratified the list into low and high prevalence strata based on the county-level 
prevalence of women of child-bearing age living with AIDS.  We defined the high prevalence 
stratum as counties with a rate greater than or equal to 4 cases of AIDS for every 1,000 
women of child-bearing age. The ACOG was extremely helpful in our survey effort by allowing 
us to use ACOG membership information for our sample, promoting our survey to ACOG 
members and sharing ACOG research on obstetricians. 
We randomly selected a sample of 1,200 ACOG members, 600 from each strata.  Because the 
ACOG membership database does not distinguish those obstetrician-gynecologists who do not 
practice obstetrics, we oversampled to estimate for non-obstetrician respondents. We also 
over-sampled to account for an expected response rate of around 40 percent, based on 
previous surveys of obstetricians.  We received 602 completed surveys, for a 50 percent 
response rate.  We conducted a non-response analysis of 30 stratified randomly sampled non-
respondents. Non-respondents did not vary from respondents in their test offering practices 
but did report some differences with specific barriers. See Appendix H for a more detailed 
explanation of the non-respondent analysis results. 
Of our respondents, 475 surveys were from obstetricians and were used in the data for this 
study. This final sample size provides a confidence level of 90 percent with 4 percent precision 
for estimates. See Appendix E for the confidence intervals of selected point estimates. Table 1 
illustrates the stratification of our sample and respondents. 
Table 1 
National Random Sample of Obstetricians 
High  Low 
Prevalence  Prevalence  Totals 
Strata  Strata 
Population of ACOG OBGYNs32  15,953  16,208  32,161 
Sample of ACOG OBGYNs  600  600  1,200 
Excluded (not practicing obstetrics)  69  58  127 
Total Obstetrician Respondents  224  251  475 
We used several methods to analyze the survey data.  We first calculated basic frequencies, 
weighted proportions and confidence intervals using the statistical package SUDAAN. 
Second, we ran chi-square tests to identify associations among key testing practice variables 
and barriers.  Next, we used SUDAAN to conduct logistic regression analysis to identify 
predictors of key variables, including barriers to offering HIV testing 
9 
Reducing Barriers to HIV Testing  OEI-05-01-00260  during prenatal care and labor and testing practices during labor. Predictor variables included 
specific practices and procedures, other barriers and demographic characteristics. Appendix F 
displays these models, including the odds ratios of significant predictors. We considered odds 
ratios to be significant if the p-value was less than 0.10. 
State obstetrician representative fax survey 
In order to gain a State-level perspective of the barriers obstetricians face and provide context 
for the national survey responses, we sent a fax survey to an obstetrician representative in each 
of the 50 States, the District of Columbia and Puerto Rico.  For the purposes of this report, we 
will be referring to these 52 entities as the States. In order to identify an obstetrician in each 
State, we worked with ACOG to approach the chairperson that heads each State Section or 
District. Chairpersons could complete the survey or refer it to another obstetrician in their 
State. For the purposes of this report, we will refer to obstetrician representatives as ACOG 
representatives although 10 surveys were from obstetricians referred by the ACOG 
Section/District chairperson for their State. We received responses from obstetricians 
representing 49 States (non-respondents were the District of Columbia, New Hampshire and 
Texas). 
State HIV/AIDS directors fax survey 
In order to understand State health department perspectives and efforts addressing perinatal 
HIV transmission, we faxed a survey to State HIV/AIDS directors. For this survey, we used 
the membership list from the National Association of State and Territorial AIDS Directors 
(NASTAD) for the most current contact information.  We received responses from all States 
except Puerto Rico. 
In-depth case studies of six States 
We conducted case studies in order to provide a multi-layered picture of the barriers to testing 
and the context of those barriers, and to uncover potential causes and identify ways to reduce 
or remove barriers to testing. We selected a purposive sample of six States with a significant 
incidence of AIDS cases: New York, New Jersey, Florida, Texas, Georgia and California. 
These States represent 59 percent of total pediatric AIDS cases as of December 2000.33 In 
fact, these six States are high incidence States across a variety of CDC HIV/AIDS indicators.34 
In each of the selected States, we used non-probability sampling methods to select the most 
appropriate persons to interview.  First, we purposively selected a core group of experts and 
stakeholders to represent a wide range of perspectives on the issue of obstetrician barriers to 
HIV testing. Key stakeholders included the State MCH director, State Medicaid 
representative, State and local health department HIV/AIDS program representatives and 
policy and front-line staff from at least one Title IV grantee. Interviews with these key 
stakeholders provide a level of consistency across case studies.  Next, we employed a 
snowball technique to allow the stakeholders that we initially 
10 
Reducing Barriers to HIV Testing  OEI-05-01-00260  identified to nominate additional experts to be included in our sample. This allowed us to 
develop a comprehensive list of State experts on the topic of obstetrician barriers to HIV 
testing. 
In each State, we interviewed 15 to 25 experts or stakeholders. Experts included staff from 
Ryan White Title IV agencies, State and local health departments, social service agencies, and 
State Medicaid agencies. We also interviewed individual medical providers, case workers and, 
when possible, HIV-infected women who had either given birth or acted as peer counselors to 
other women. We have protected the anonymity of the HIV-infected women respondents by 
removing all personal identifiers from our records. 
11 
Reducing Barriers to HIV Testing  OEI-05-01-00260  F I N D I N G S  
In 2000, an estimated 80 to 110 HIV-infected infants were born 
to mothers who had not been diagnosed prior to birth 
The CDC estimates that there were approximately 6,000 - 7,000 births to women living with 
HIV or AIDS in 2000. This is 0.15 percent of the almost 4 million live births in the United 
States for the same year.  Based on a national extrapolation of available State-specific data, the 
births to women living with HIV/AIDS produced an estimated 280-370 HIV-infected infants. 
Thus, 4 to 6 percent of children born to HIV-infected women developed HIV themselves. This 
represents the overall transmission rate of perinatal HIV infections in 2000. 
Focusing on the subset of infants infected through perinatal transmission is an important step in 
understanding the scope of this issue and in fulfilling the Congressional mandate to determine 
the number of newborn infants with HIV born in the United States with respect to whom the 
attending obstetrician for the birth did not know the HIV status of the mother.  The next step is 
to ascertain the extent to which these infections resulted from transmission despite treatment 
versus a lack of treatment due to inadequate or no prenatal care, absence or refusal of HIV 
testing, or the refusal of treatment. The Congressional mandate specifically focuses on the 
potential that lack of treatment could be due to the absence of testing. Consequently, that is the 
focus of the rest of this finding and the report. 
Of the 280-370 HIV-positive infants infected through perinatal transmission in 2000, the CDC 
estimates that approximately 62 percent were born to mothers who were diagnosed with HIV 
prior to the birth. For another approximately 9 percent of HIV-infected infants, the mothers 
HIV diagnosis came during delivery.  The mother was not diagnosed with HIV until after the 
birth of the child in approximately 29 percent of the cases, resulting in 80 to 110 HIV-infected 
infants born to mothers who had not yet been diagnosed with HIV. Appendix D contains a 
detailed description of the methodology used for deriving these estimates, which are based on 
transmission rates associated with initiating treatment at the time of diagnosis.  Although timely 
treatment significantly reduces transmission rates, it does not eliminate the possibility of 
transmission.  Table 2 provides the numbers and percentages of infected infants broken out by 
the mothers time of diagnosis. 
12 
Reducing Barriers to HIV Testing  OEI-05-01-00260  Table 2
 
Time of Mothers HIV Diagnosis 
 
for the Estimated 280-370 HIV-Infected Infants Born in 2000
 
Estimated, Rounded  Estimated Percent 
Range of HIV- of HIV-infected 
infected Newborns  Newborns 
Infants Whose Mother was  170-230  62% 
Diagnosed Prior to Birth 
Infants Whose Mother was  20-40  9% 
Diagnosed During Delivery 
Infants Whose Mother was  80-110  29% 
Diagnosed After Birth 
Rounded Totals35  280-370  100% 
Source: Centers for Disease Control and Prevention 
Assuming the time of the mothers diagnosis, as reported to the CDC from medical records,36 is 
synonymous with obstetrician knowledge of HIV, and assuming all HIV-infected births were 
attended by obstetricians, then these newborn estimates represent the number of newborn 
infants with HIV with respect to whom the attending obstetrician for the birth did not know the 
HIV status of the mother that was specifically requested by Congress.  Using these 
assumptions, 80 to 110 HIV-infected infants were delivered by an attending obstetrician with 
no knowledge of the mothers status. 
As with any set of assumptions used to provide estimates, there are limitations. Most 
importantly, while it is likely and logical that the mothers diagnosis time is synonymous with 
obstetrician knowledge of HIV and the initiation of treatment, it is not certain. In some 
instances, the attending physician may not be the womans prenatal caregiver or the woman 
may not have received prenatal care at all. Perinatal surveillance data from CDC indicates that 
14 percent of HIV-infected women did not receive prenatal care.37  In these cases, even if the 
woman was diagnosed prior to the birth, the attending obstetrician may be unaware of her 
testing history and her status. Further, it is unlikely that all of these births were attended by 
obstetricians. Although obstetricians preside over an estimated 85 percent of births nationally, 
it is uncertain whether this ratio applies to women with unknown HIV status who deliver HIV 
infected infants. It is likely that these deliveries share some qualities that would make them 
more likely to be attended by an obstetrician (i.e. hospitals might be more likely to assign 
obstetricians to women with potentially complicated deliveries such as women with substance 
abuse issues or no prenatal care). 
Using the different rates for perinatal transmission based on treatment initiation, we can estimate 
the extent to which earlier diagnosis could prevent the infection of infants. If all of the HIV-
infected infants whose mothers were diagnosed after the birth had been diagnosed and treated 
during labor or delivery, we estimate the total number of HIV-infected infants could be reduced 
by roughly 15 percent. This translates into preventing HIV infection in 50 to 65 infants in the 
year 2000. Assuming a more ideal scenario, 
13 
Reducing Barriers to HIV Testing  OEI-05-01-00260  where all the HIV-infected infants whose mothers were diagnosed after the birth or at delivery 
had been diagnosed prior to the birth of the child, and adhered to treatment that was initiated in 
prenatal care, we estimate that the total number of HIV-infected infants in 2000 could have 
been reduced by 90 to110 infants.  This represents a decrease in the number of HIV-infected 
infants by approximately 30 percent. 
These scenarios clearly demonstrate the crucial impact early diagnosis and treatment can have. 
Despite the fact that over half of the HIV-infected newborns were born to mothers who were 
diagnosed prior to birth, the question of why some women remained undiagnosed until after the 
birth of their child remains.  As previously stated, we examine only one possible answer to this 
critical question, that the women were not diagnosed because they were never offered an HIV 
test by their obstetrician or other health care provider. In particular, this report strives to 
determine what barriers might prevent or discourage obstetricians from routinely offering HIV 
testing to all pregnant women as well as suggesting solutions for removing those barriers. 
Obstetricians routinely offer HIV testing as part of their 
standard prenatal practice; however, barriers affect 
approximately one-third of obstetricians. 
Almost all obstetricans offer HIV testing during prenatal care, but other related 
procedures vary with AIDS prevalence 
Obstetricians provided information on both their practices of offering testing to pregnant 
patients and on any barriers that have ever prevented them from offering an HIV test to a 
prenatal patient. Ninety-three percent of obstetricians reported that they routinely offer HIV 
testing to their pregnant patients.38 However, some of the same obstetricians who reported 
routinely offering testing also acknowledged specific barriers that have prevented that practice 
on at least one occasion. A total of 66 percent of obstetricians reported both offering testing to 
all pregnant patients and having never been prevented from that practice by any barriers. 
Obstetricians in both high and low prevalence counties showed similar standard practices of 
offering testing.  This was also true across a number of other demographic variables, including 
urban versus rural practice setting, private versus public practice setting, private versus public 
insurance, gender and years since residency. However, obstetricians in high prevalence 
counties differ from those in low prevalence counties in other aspects of the testing process. 
Most importantly, logistic regression analysis indicated that obstetricians in high prevalence 
counties were less likely to be obstructed by any barriers to testing during prenatal care.  There 
are also significant associations between prevalence rates and some testing practices. 
Obstetricians in high prevalence counties tended to recommend testing to pregnant women at 
low risk for HIV rather than just offer testing.  Practicing in the high prevalence strata also 
related positively to documenting a womans refusal of testing and re-offering testing at a 
subsequent prenatal appointment.  Obstetricians in the high prevalence strata also recalled 
receiving educational materials or training from CDC 
14 
Reducing Barriers to HIV Testing  OEI-05-01-00260  and from their State or local health departments significantly more often. Finally, more 
physicians in this strata than in the low prevalence strata reported knowledge of their State laws 
on HIV testing of pregnant women. 
Barriers to offering HIV testing during prenatal care have affected one-third of 
obstetricians 
Thirty-two percent of all obstetricians, regardless of their testing practice, have ever faced a 
barrier that has prevented them from offering an HIV test to a prenatal patient. The three most 
commonly reported barriers to offering HIV testing during prenatal care included language, a 
patients late entry into prenatal care and an obstetricians considering his or her patient 
population to be at low risk for HIV.  These barriers each affected 13 to 15 percent of 
obstetricians. Pretest counseling being too time-consuming and the consent process being too 
time-consuming were the fourth and fifth most common barriers, respectively, but each were 
reported by only 5 percent of obstetricians. Table 3 lists the percentage of obstetricians who 
identified each barrier as having ever prevented them from offering an HIV test to a prenatal 
patient. Appendix A displays prenatal care barriers by State, as identified by the State 
HIV/AIDS directors and ACOG representatives. 
Table 3
 
Barriers That Have Ever Been a Reason for 
 
Not Offering an HIV Test to a Prenatal Patient
 
Barriers to Offering HIV Testing  Percentage of 
Obstetricians 
Language barrier  15 % 
Late entry into prenatal care  13 % 
Patient population is at low risk  13 % 
Pretest counseling too time consuming  5 % 
Consent process too time consuming  5 % 
Concern about offending patient  5 % 
Inadequate reimbursement  2 % 
It is not the standard of care in my hospital/clinic  1 % 
Concern about informing a pregnant woman she  1 % 
is HIV-positive 
Concern about treating an HIV-positive patient  1 % 
Source: OIG national survey of obstetricians 
15 
Reducing Barriers to HIV Testing  OEI-05-01-00260  Guidance on testing may help to alleviate barriers to offering testing.  Logistic regression 
analysis showed that barriers were less likely to obstruct obstetricians whose workplace had 
written policies on HIV testing of pregnant women. Obstetricans who report receiving 
educational materials or training on perinatal HIV from CDC were also less likely to encounter 
any barriers to testing than obstetricians who do not report receiving such resources. 
Additionally, obstetricians who did not know their States laws regarding HIV testing were 
more likely to report barriers than those familiar with State laws. 
Language barriers constitute an exception to obstetricians routine test offering 
A language barrier, the most frequently reported barrier, has prevented 15 percent of 
obstetricians from offering HIV testing during prenatal care on at least one occasion. Language 
barriers affected the greatest number of obstetricians; however, finding language to be a barrier 
did not seem to dictate obstetricians' routine testing practice. Analysis using logistic regression 
supports this characterization.  Among obstetricans facing any barriers, those obstetricians who 
routinely offer HIV testing to all pregnant patients were more likely to report a language barrier 
than those who only offer testing to some patients. Thus, it appears that a language barrier 
represents an exception to their routine practice.  For these obstetricians, language constitutes a 
practical but formidable problem that arises occasionally.  In qualitative interviews, some 
obstetricians and other health professionals have noted that a lack of multilingual patient 
education materials and consent forms and shortages of bilingual staff have exacerbated this 
barrier. 
Although language constitutes the most commonly identified national barrier, it may not impact 
localities uniformly. Within States, obstetricians in suburban areas were less likely to report this 
barrier, although language barriers did occur in similar frequencies in urban and rural locations. 
Further, only 15 State HIV/AIDS directors identified this as a barrier in their State.  However, 
States should not discount the potential for this barrier to impact their populations in the future, 
nor the possibility that it may already be occurring sporadically in their State.  Data from an 
Urban Institute study indicates that certain States with historically small immigrant populations 
have recently experienced a rapid growth in immigration.39 
A patients late entry into prenatal care or lack of any prenatal care can prevent 
testing 
Like a language barrier, a patients late entry into prenatal care most often obstructs 
obstetricians who otherwise routinely offer testing. Logistic analysis again supported this 
characterization.  Considering obstetricians with any barriers, the obstetricians who routinely 
offer testing to all prenatal patients were more likely to report the late entry into prenatal care as 
a barrier. For these obstetricians, a patients late entry into care appears to disrupt their 
standard testing practice. Anecdotal evidence suggests that many women with late entry into 
prenatal care have multiple, immediate medical needs. These needs can interact with time 
constraints to make HIV testing more difficult. Some obstetricians may focus on competing 
clinical priorities at the expense of offering HIV testing. Forty-
16 
Reducing Barriers to HIV Testing  OEI-05-01-00260  three percent of State HIV/AIDS directors also agreed that presenting late in pregnancy for 
prenatal care is an ongoing barrier in their State. 
However, several interviews with obstetricians and experts in high prevalence States offered a 
different perspective on a womans late entry into prenatal care, arguing that late entry would 
increase the likelihood of test offering. They asserted that if a woman presents for prenatal care 
late in pregnancy, this signals a high risk pregnancy, which increases the priority the 
obstetrician places on HIV testing for her.  One obstetrician summarized this perspective with 
the remark, [Lack of prenatal care] is a red flag for most of us, increasing the likelihood of 
testing as opposed to acting as a barrier to it. 
In addition to the potential difficulties that late entry into care may present, women who receive 
no prenatal care present an even greater barrier to timely HIV testing.  Only a few State 
ACOG representatives agreed that late entry into prenatal care constituted a testing barrier. 
However, one quarter of ACOG respondents reported that no prenatal care prevents 
obstetricians from offering HIV testing. Forty-five percent of State HIV/AIDS directors also 
identified no prenatal care as a barrier. Our national survey of obstetricians did not include 
no prenatal care as a barrier since it is beyond the scope of obstetricians prenatal practices. 
For some obstetricians, the risk assessment barrier impedes routine offering of 
HIV testing 
Although most of the medical community, including CDC, ACOG and IOM, has actively 
supported universal offering of HIV testing to all pregnant women, perceptions of patient risk 
still act as a barrier to testing for a subset of obstetricians.  Nationally, 13 percent of 
obstetricians reported that they have not offered HIV testing because they considered their 
patient population at low risk. Similarly, 13 percent of State ACOG representatives felt that 
this was a barrier that prevented testing. A slightly higher percentage felt that risk assessments 
discouraged, but did not prevent testing. HIV/AIDS directors felt that the use of risk 
assessments among obstetricians posed a more serious barrier to HIV testing. Fifty-five 
percent of HIV/AIDS directors identified the belief that only high risk patients should be tested 
for HIV as a barrier, making it the barrier most often reported among HIV/AIDS directors. 
An important difference emerged between the barrier of using risk assessments and the other 
top barriers.  Although language and late entry barriers seem to operate as exceptions to the 
physicians routine practice, an obstetricians risk assessments seem to partly determine routine 
testing practices. Unlike language and late entry barriers, there is demonstrated a negative 
relationship between risk assessment barriers and routine test offering practices.  Considering 
obstetricians who reported any barriers, those who routinely offer HIV testing to all prenatal 
patients were less likely to identify the risk perception barriers than those who offer testing only 
to some prenatal patients. 
Discussions with obstetricians and other experts have produced some ideas of why 
obstetricians may use risk-assessments despite the widespread promotion of universal 
17 
Reducing Barriers to HIV Testing  OEI-05-01-00260  offering as the standard of care.  Some respondents highlighted the fact that some obstetricians 
have never encountered an HIV-infected patient, and particularly in low prevalence areas, 
firmly believe that their patient population faces no risk of HIV. As one expert expressed, 
information on standards of care only takes you so far; a small proportion of physicians will 
disagree with those standards and only change their behavior if they face repercussions for not 
offering testing. Others addressed the mixed messages of HIV prevention.  Epidemiologic 
research has tended to focus on identifying risk factors and subpopulations most affected by 
HIV. This emphasis on subpopulations may undermine the promotion of universal screening 
and may reinforce obstetrician perceptions that they do not need to test their patient 
populations.  A final reason why obstetricians may still use risk assessments is due to State laws 
governing HIV counseling and testing procedures. For example, risk assessment language is 
included in perinatal testing laws in two States. 
Though experts have characterized using risk assessments as one of the most difficult barriers to 
overcome, evidence suggests that institutional guidance can help to prevent obstetricians 
reliance on them. Practicing in a workplace that has developed written policies regarding HIV 
testing of pregnant women predicted that an obstetrician would not indicate that using risk 
assessments obstructs testing.  Also, almost three-fourths of obstetricians indicated that making 
voluntary HIV testing of all pregnant women the standard of care in my hospital or clinic would 
be helpful in assisting them to routinely offer HIV testing. 
Our data indicates that the risk assessment barrier may underlie other barriers to offering 
testing, such as an obstetricians concern about offending the patient. Most obstetricians who 
indicated that their concern about offending the patient prevented them from offering a test, 
have also been prevented by the perception that their patients are at low risk.  Discussions with 
providers and experts support the theory that these two barriers can interact with one another. 
An obstetrician may presume both that the patient is at low risk for HIV and that she would be 
offended by an offer of testing.  This physician may justify not offering the test to avoid the risk 
of offense since the physician does not feel the woman really needs the test anyway. 
Pretest counseling and consent barriers discourage, but seldom prevent, offering 
testing 
Despite the prominence of counseling and consent issues in previous research regarding 
prenatal testing barriers, including the IOM report which cited lack of provider time and the 
legal requirements for counseling and informed consent as barriers, a surprisingly small 
proportion of obstetricians indicated that these barriers have ever prevented them from offering 
an HIV test.  Pretest counseling being too time-consuming and the consent process being too 
time-consuming each have obstructed testing for only 5 percent of obstetricians. These barriers 
ranked as the fourth and fifth most common of 10 barriers by both obstetricians and State 
HIV/AIDS directors. 
18 
Reducing Barriers to HIV Testing  OEI-05-01-00260  Obstetricians and other health experts offered possible explanations for the perception of 
counseling and consent requirements as too time-consuming.  The health care system often 
focuses incentives on treating many patients as quickly as possible, so even a brief discussion of 
HIV testing may impose a burden.  However, experts have also asserted that these burdens 
may represent misperceptions of State requirements.  Respondents suggested that some 
obstetricians believe that the pretest counseling and consent process requires up to 20 minutes 
to complete, but in reality it can take less than 5 minutes. According to our survey of State 
HIV/AIDS directors, only eight States require that pretest counseling be provided to all 
pregnant women and of those States, only five have specified the information that must be 
included in the counseling session.  Twenty-one States indicated that they require written 
consent for HIV testing. 
Pretest counseling and consent requirements may impose a burden that is bothersome but not 
prohibitive. Our survey of State ACOG representatives differed from the other two surveys by 
allowing the additional response that a barrier discourages, but doesnt prevent testing. 
Sixty-nine percent of ACOG representatives assessed the pretest counseling barrier as one that 
discourages but does not prevent testing, and 63 percent indicated the same for the consent 
barrier.  These barriers ranked as the first and second most common to discourage (but not 
prevent) testing.  These State ACOG results also support the perspectives of some other 
respondents interviewed during field work. Many argued that the perception of counseling and 
consent as burdensome is more likely to compromise the quality of the counseling and informed 
consent than to prevent the offer of the test. 
Significant barriers prevent almost half of obstetricians from 
routinely offering HIV testing during labor and delivery 
Overall, offering HIV testing to all women in labor with unknown status is not 
standard practice 
Standard practices vary widely between the prenatal care setting and the labor and delivery 
setting.  Though almost all obstetricians reported routinely offering HIV testing to prenatal 
patients, only 48 percent of obstetricians routinely offer HIV testing (rapid, expedited or 
standard testing) to women of unknown HIV status during labor.40 Some obstetricians who did 
report routinely offering testing to all women in labor with unknown status also indicated that a 
barrier had prevented that practice on at least one occasion.  In total, 41 percent of 
obstetricians reported both routinely offering HIV testing during labor and having never been 
prevented from that practice by any barriers.  A noteworthy minority of 17 percent never offer 
testing during labor and delivery. In contrast, only 1 percent of obstetricians reported never 
offering HIV testing to prenatal patients. 
The AIDS prevalence rates impacted standard testing practices in the labor and delivery 
setting. According to logistic regression, obstetricians practicing in a high prevalence county 
were more likely to routinely offer testing during delivery. Obstetricians 
19 
Reducing Barriers to HIV Testing  OEI-05-01-00260  practicing in a low prevalence county more commonly reported offering testing to women in 
labor with unknown status only sometimes.  Obstetricians in low prevalence counties were also 
more likely to indicate that they faced barriers to testing during labor. 
Guidance on HIV testing, particularly from an obstetricians hospital, also impacted testing 
practices during labor. Logistic regression analysis identified that the receipt of educational 
information or training on perinatal HIV from ones hospital or from an educational course 
predicted that an obstetrician routinely offered testing during labor.  Educational information 
from the hospital also decreased an obstetricians likelihood of reporting any labor and delivery 
barriers. Interestingly, educational information from other sources did not demonstrate this 
effect. 
The labor and delivery setting entails significant challenges to offering HIV testing 
Compared to the prenatal care setting, testing barriers impacted many more obstetricians during 
labor and delivery. Approximately one-third of obstetricians reported any barriers to testing in 
the prenatal setting, but almost one-half faced challenges to offering HIV testing to women in 
labor with an unknown HIV status. Forty-four percent of obstetricians named at least one 
barrier that has ever prevented them from offering an HIV test to a woman in the labor and 
delivery setting.  The most commonly reported barriers related to the process of conducting 
counseling and obtaining consent during labor, followed by limitations in the capacity to 
produce test results quickly.  Some obstetricians also categorized the labor setting as being too 
late for preventive treatment.  The following table lists the percentages of obstetricians 
identifying each barrier as having prevented them from offering testing during labor. Appendix 
A displays testing barriers during labor and delivery by State, as identified by the State 
HIV/AIDS directors and ACOG representatives. 
20 
Reducing Barriers to HIV Testing  OEI-05-01-00260  Table 4 
Barriers That Have Ever Been a Reason for Not Offering an HIV Test to a Patient 
During Labor and Delivery 
Barriers to Offering HIV Testing  Percentage of 
Obstetricians 
Process Barriers 
Insufficient time to counsel during labor  32 % 
Too difficult to obtain consent during labor  28 % 
Technology Barriers 
Test results take too long  19 % 
Rapid or expedited HIV tests not available  18 % 
Too late for preventive treatment  17 % 
Too much emotional stress for patient  9 % 
Hospital did not have antiretroviral drugs available for  1 % 
treatment 
Source: OIG national survey of obstetricians 
The HIV counseling and consent process during labor represented the most 
common source of barriers 
The two most common barriers involved the process of offering HIV testing in the labor and 
delivery setting. Thirty-six percent of obstetricians reported that either insufficient time to 
counsel or too difficult to obtain consent or both of these barriers has ever prevented testing 
during labor. These two barriers were strongly associated, meaning that obstetricians who 
reported one barrier were likely to report the other. 
Reporting insufficient time to counsel as a barrier is associated with whether or not an 
obstetrician has a set testing practice. Obstetricians who indicated that they always or 
never test during labor seem to be signaling a routine practice, whereas those that indicate 
sometimes appear to be testing on a more case-by-case basis.  Considering obstetricians with 
any barriers during labor and delivery, obstetricians who appear to be deciding on a case-by-
case basis whether to offer testing reported having insufficient time to counsel significantly more 
often than those who always offer or never offer testing. During interviews, some providers 
noted that obstetricians often operate under strict time constraints in the labor and delivery 
setting.  For example, some women present in very advanced stages of labor with multiple 
immediate needs, which compete with the offering of HIV testing. On the other hand, 
obstetricians who indicated that they always test must also face similar time constraints, but 
have apparently managed to surmount them. 
In addition to reducing the likelihood of facing barriers in general, institutional policies may also 
help to remedy this counseling barrier in particular. Obstetricians whose 
21 
Reducing Barriers to HIV Testing  OEI-05-01-00260  workplaces had developed a written policy regarding HIV testing of pregnant women were less 
likely to report this barrier. 
The difficulty of obtaining consent during labor and delivery is a barrier that impacts 28 percent 
of obstetricians.  During discussions of the consent barrier, some health professionals described 
this difficulty as stemming from a doubt about a womans capacity to consent to testing while 
under the influence of pain, emotional stress or medication during labor. Others did not 
encounter this doubt and compared the testing consent to womens consent to other medical 
procedures, such as a Cesarean section, under the same circumstances. Some respondents 
also voiced confidentiality concerns in situations where partners or family members accompany 
the woman into the delivery room. 
Limitations in HIV testing technology present an insurmountable barrier for one-
fifth of obstetricians 
A limited capacity to process HIV tests quickly can prevent obstetricians from offering testing 
during labor.  Slightly more than a fifth of obstetricians named either of two barriers related to 
testing technology as obstructions. Further, the obstetricians who do not routinely offer testing 
during labor and delivery were more likely to report either of these testing technology barriers. 
These barriers included test results take too long and rapid or expedited HIV tests not 
available. State HIV/AIDS directors and ACOG representatives identified the unavailability 
of rapid or expedited tests more frequently than any other barrier during labor and delivery. 
That 80 percent of obstetricians did not name these testing barriers was somewhat surprising in 
the context of discussions with other providers and experts. With the notable exception of 
New York, which mandates that HIV test results of mothers in labor and/or newborns be 
available within 48 hours, limitations in processing tests quickly featured prominently in many 
interviews discussing testing barriers during labor and delivery.  During these discussions, many 
experts characterized the lack of expedited and rapid testing capacity as a formidable and 
widespread barrier. Over 40 percent of State HIV/AIDS directors also identified lack of rapid 
or expedited testing as an ongoing barrier in their States. This apparent divergence, between 
the obstetricians responses and the State surveys and interviews implying a greater prevalence 
of this barrier, raises an issue that warrants further attention. An assessment of the extent to 
which hospitals in each State have developed the capacity to produce expedited or rapid HIV 
test results is an important foundation for increasing obstetricians ability to intervene during 
labor and delivery. 
Some obstetricians consider labor too late for preventive treatment, but 
interpretations of this barrier vary 
Antiretroviral treatment initiated during delivery or within 12 hours of birth can reduce HIV 
transmission rates. However, 17 percent of obstetricians indicated that they have not offered 
an HIV test during labor because it was too late for preventive treatment.  Two 
22 
Reducing Barriers to HIV Testing  OEI-05-01-00260  explanations may explain the prevalence of this barrier. First, lack of rapid or expedited testing 
could prevent the obstetrician from ascertaining HIV status until after the window of 
intervention had passed.41 Slightly more than half of the obstetricians who indicated that it was 
too late for preventive treatment also named at least one of the two testing technology barriers. 
Second, doctors may be unaware of prevention treatment options during labor and delivery. 
Approximately 7 percent of obstetricians reported "too late for preventive treatment" but did 
not report any barriers based on test results being delayed or on lack of antiretrovirals drugs for 
treatment. For these physicians, a lack of continuing education or educational materials on 
treatment options may account for this barrier. Finally, only one percent of obstetricians 
reported not testing due to a lack of antiretroviral drugs in their hospital, and so presumably, this 
condition was not a factor in perpetuating the "too late for preventive treatment" barrier. 
Obstetricians do not routinely test newborns for HIV, primarily 
because it is not their responsibility 
Ninety-three percent of obstetricians reported that testing is the responsibility of the newborns 
physician. In fact, 90 percent indicated that they never perform HIV testing on newborns when 
the mothers status is unknown.  Obstetricians reinforced this idea in the barriers they reported. 
Among obstetricians reporting any barriers to newborn testing, 90 percent said that they have 
not tested newborns either because they were not responsible for newborn testing or because 
they had recommended newborn testing to the newborns physician. 
Moreover, States have generally not assigned obstetricians the responsibility to test newborns 
when the mothers status is unknown.  Only two States, New York and Connecticut, have 
enacted laws that mandate HIV testing of newborns born to mothers of unknown status. 
Neither State specifies that obstetricians must carry out this testing; instead, the laws hold the 
hospital accountable for developing protocols to ensure the testing of these infants. 
While most professionals and State laws do not hold obstetricians responsible for newborn 
testing, a lack of communication between obstetricians and pediatricians, who are typically 
responsible for newborn testing, may act as a barrier to testing.  Approximately one-fifth of 
obstetricians noted that a lack of communication with the newborns physician has been 
problematic. Pediatricians whom we interviewed also noted the fragility of the paper trail that 
documents the mothers testing history. State confidentiality laws regarding the disclosure of 
HIV information may explain some of this difficulty. One pediatrician explained that when the 
mothers HIV status is not documented in the newborns chart, some pediatricians assume that 
the mother tested negative.  If the obstetrician had failed to offer an HIV test or had failed to 
document the mothers refusal of the test, the newborns pediatrician would likely be unaware 
that the mothers status remained unknown. 
23 
Reducing Barriers to HIV Testing  OEI-05-01-00260  Though obstetricians do not conduct newborn HIV testing for the most part, one-fourth of 
obstetricians do take some action related to newborn testing when the mothers status is 
unknown. Twenty-four percent of obstetricians reported that they always recommend to the 
mother that the newborn be tested for HIV. Also, twenty-two percent of obstetricians routinely 
recommend newborn testing to the newborns pediatrician. 
Almost all States report actions addressing obstetrician 
barriers to offering HIV testing to all pregnant women 
Fifty of the 51 State respondents indicated that they had undertaken some measures to address 
barriers to counseling and testing all pregnant women, although the intensity and breadth vary 
tremendously. Fifteen States efforts include laws that mandate HIV testing or the offering of 
testing to all pregnant women.  Appendix B provides additional information on State laws 
relating to perinatal HIV testing.  Interviews with several HIV/AIDS experts suggest that there 
was a tremendous effort put forth right after the release of the 1995 PHS guidelines to 
disseminate information and train health care providers, but that efforts have diminished in 
recent years. However, most States are still engaged in some effort related to the topic. The 
majority of these States have multiple efforts underway focused on reducing the remaining 
barriers to offering HIV testing during pregnancy. Appendix C provides additional information 
on each States efforts to reduce perinatal HIV testing barriers. 
States efforts are primarily focused on provider education and training, but these 
activities may not represent the most effective solutions to eliminate continuing 
barriers from an obstetrician perspective 
Forty-five States reported at least one effort, and many States had multiple efforts, to educate 
providers regarding the necessity of providing HIV counseling and testing to all their pregnant 
patients. Education efforts took a variety of forms, but primarily consisted of the development 
and distribution of written materials and group training regarding prevention and treatment 
issues. Seventy-eight percent of States indicated that they disseminated State laws or policies 
regarding HIV testing of pregnant women through direct mailings to obstetricians.  Training on 
testing and treatment has been offered by 19 States. 
When asked for ideal solutions to improve obstetrician practices, States continue to focus on 
provider education. Of the 34 States offering opinions on the ideal solution to improve 
obstetrician practices, almost half wrote in provider education. In comparison, only 21 percent 
thought more research was the answer, while 18 percent focused on collaborative efforts. 
In contrast, obstetricians do not seem to favor additional educational or training efforts as the 
most helpful solutions to promote their routine offering of testing. On a list of 10 possible 
solutions, obstetricians ranked continuing education courses on perinatal HIV as the 8th  and 
training on HIV counseling as the 10th  most helpful to them.  The three 
24 
Reducing Barriers to HIV Testing  OEI-05-01-00260  solutions that obstetricians indicated would be most helpful are: including testing in the standard 
battery of prenatal tests, making voluntary testing of all pregnant women the standard of care in 
their hospital/clinic and receiving patient education materials. 
Furthermore, it appears that most obstetricians pay more attention to educational efforts by 
professional organizations and CDC than by the public health department.  When asked about 
the educational materials on perinatal HIV that they received, 94 percent of all obstetricians 
remember receiving materials from ACOG, and 71 percent remember receiving materials from 
CDC.  However, only 53 percent remember receiving materials from their State and local 
health departments.  This is despite the fact that 90 percent of these obstetricians practice in 
States where the State health department indicated that they sent materials.  During interviews, 
several obstetricians remarked that they pay less attention to public health letters than they do 
to technical bulletins. The reluctance to read information from State and local health 
departments could explain why one-third of obstetricians indicated that they were not familiar 
with States laws or policies. 
Collaboration efforts lack formal involvement by private providers 
Forty-six State health departments indicated that they collaborated with private sector 
stakeholders to develop strategies to overcome the barriers to HIV counseling and testing. 
However, only 19 of these States indicated that their collaborative efforts formally included 
private providers or provider associations. Challenges to collaboration can lie in successfully 
engaging the private sector as partners. The ACOG representatives from 17 States felt their 
State health department has not tried to engage the private sector in addressing the issue of 
perinatal HIV transmission.  Further, only 6 percent of State health departments indicated that 
collaboration with private partners would be an ideal way to improve obstetrician practices 
around perinatal HIV testing. 
In interviews, HIV/AIDS experts expounded upon these issues. Respondents indicated that 
while specific task forces or working groups may be convened, truly integrating private 
providers into a States response to this issue also presents a challenge.  Sometimes the quality 
of the collaboration is questionable. For example, one States task force includes several 
private obstetricians, however most are not actively involved in the group and rarely attend 
meetings. 
In most States, efforts do not include monitoring compliance 
While a few States are engaged in monitoring or enforcement activities, the majority of States 
do not have the means to ascertain whether obstetricians and other health care providers are 
complying with their laws or policies regarding HIV testing during pregnancy.  In total, 12 
States indicated that they have either monitoring and/or enforcement provisions in the law.  Six 
additional State health departments indicated that they are engaged in activities to monitor 
obstetrician and/or hospital compliance. 
Twenty-four States engage in research that provides valuable information; however, this does 
not perform a monitoring function. Several States have participated in issue-specific 
25 
Reducing Barriers to HIV Testing  OEI-05-01-00260  research regarding obstetrician practices, which offers a picture of compliance at a specific 
point in time. On the other hand, epidemiological research and surveillance provides an on-
going method for assessing overall provider compliance. However, with the exception of some 
enhanced perinatal surveillance projects in conjunction with the CDC, this research lacks the 
means to pinpoint categories of providers who do not offer HIV testing to all women. 
States face challenges to changing obstetricians testing practices 
The number one challenge faced by 36 States is influencing the behavior of private 
obstetricians.  Attempting to influence the attitudes and behavior of obstetricians is  inherently 
difficult, as are all attempts to alter behavior patterns. This is made especially difficult by the 
gulf that often exists between the public health perspective and the private obstetrician provider 
perspective.  For example, providing prevention messages and risk reduction education to 
pregnant women has public health value, but may compete for time with other clinic aspects of 
treating the individual.  Further, many obstetricians do not support what one obstetrician called 
HIV exceptionalism in which HIV is treated differently from other public health issues due to 
social and political issues associated with the disease. Agreeing with this point of view, one 
obstetrician wrote, HIV should be treated like a medical illness, not a social disease. We 
dont have to counsel to the same degree for gonorrhea and chlamydia testing. 
Another challenge identified by the States also may make successfully persuading all 
obstetricians to universally test for HIV difficult.  In 49 percent of the States, State health 
departments felt that competing priorities take precedence over the issue of perinatal 
transmission. This viewpoint is supported by ACOG State representatives, 43 percent of 
whom reported that perinatal transmission is not an issue or other issues take precedence 
on the State ACOG agenda. In many low prevalence States, the low ranking of this issue is not 
surprising and probably appropriate given the larger prevention issues facing the State. 
However, it certainly speaks to a general attitude in the State that may be shared by the 
obstetricians in that State. As one HIV/AIDS clinical director stated, With the dramatic 
reduction in cases, people have become complacent and within the scheme of challenges, this 
issue now seems so small that it is hard to get people to focus. 
26 
Reducing Barriers to HIV Testing  OEI-05-01-00260  RECOMMENDATIONS 
Since the PHS guidelines recommending HIV counseling and testing for all pregnant women 
were instituted in 1995, testing rates have increased substantially.42 In our survey, 93 percent 
of obstetricians reported routinely offering testing to all of their patients for HIV.  The increase 
in testing rates, along with significant reductions in perinatal HIV incidence, testify to Federal, 
State and local efforts to implement universal HIV screening of pregnant women.  However, 
there is more that could be done to reach the goal of ensuring that every pregnant women is 
offered an HIV test.  One-third of obstetricians still face barriers to offering HIV testing in the 
prenatal setting, and almost one-half faced challenges to offering HIV testing to women with 
unknown HIV status during labor and delivery. 
In general, reducing barriers to testing requires CDC and States to develop, disseminate and 
institutionalize at the local level the practical tools necessary to make HIV testing 
administratively routine. To be successful, these efforts must entail the involvement of the 
private sector as advisors in the developmental stage and as partners in the implementation 
stage. Achieving the highest possible testing rates also requires instituting a level of 
accountability that will modify the behavior of obstetricians for whom targeted training and new 
tools are not sufficiently motivating. 
In offering specific recommendations to increase HIV testing, we have focused on increasing 
obstetrician testing of women rather than newborns.  First and foremost, obstetricians do not 
define newborn testing as being within the scope of their duties.  Further, early testing of the 
mother is the most effective way to reduce transmission rates and prevent the largest number of 
children from becoming HIV-infected. For this reason, increasing testing rates during prenatal 
care should be a priority. Finally, rapid and expedited testing promises the possibility of being 
able to reduce transmission rates through testing and treatment of the mother when she presents 
in the hospital to deliver. With this safety net in the labor and delivery setting, women with 
inadequate prenatal care can still benefit from testing and treatment. 
While the legislative mandate requests recommendations for each State, we advocate that our 
recommendations be instituted in all States. In light of the fact that our findings are based on a 
nationally representative sample of obstetricians and supported by a variety of data sources, we 
feel that our general recommendations are appropriate for all States. In particular, we feel that 
the recommendations should be adopted regardless of prevalence level. First, there are very 
few States that do not contain high prevalence counties.  Further, Congress mandated that our 
study explore the barriers that exist that might prevent or discourage obstetricians from offering 
HIV testing to all pregnant women and newborns whose status is unknown, with a goal to 
promote universal testing of pregnant women by obstetricians. In fact, our research has shown 
that obstetricians in low prevalence settings are more likely to face barriers to offering HIV 
testing. Finally, this disease is not static. Counties currently facing low prevalence may 
experience rising 
27 
Reducing Barriers to HIV Testing  OEI-05-01-00260  incidence in the future and should not dismiss the need for ongoing efforts to reduce the 
obstetrician barriers to testing. 
The legislative mandate also requires the Secretary to collect information from the States 
describing the actions taken by the States toward meeting the recommendations specified for 
the States. Towards this assessment, we offer our recommendations as a national template 
that States may use to evaluate their efforts to increase HIV testing rates by obstetricians. Each 
State could benchmark their current status against our recommendations, taking into account 
current efforts that may already address aspects of our recommendations (Appendix C). This 
benchmarking exercise would lay the foundation for evaluating the progress States make 
fulfilling these recommendations over the next few years. How each State chooses to respond 
to these recommendations would depend not only on where their current efforts put them on the 
continuum, but also on their assessment of the most problematic obstetrician barriers to offering 
HIV testing to all pregnant women, outlined in Appendix A and B. While our 
recommendations only speak to overcoming obstetrician barriers per the scope of our study, 
States might wish to benchmark their status and push for achievement with respect to all 
prenatal care and obstetric providers. 
How States respond and the resources they have available to implement these 
recommendations regarding testing rates will also be impacted by investments States may be 
making in other areas in the cascade of events that lead to perinatal transmission.  Improving 
obstetrician testing rates is only one crucial step in the larger effort to reduce perinatally 
transmitted HIV. In a world of limited resources, tension exists between the implementation of 
solutions to achieve the intermediate goal of increasing testing and the ultimate goal of reducing 
perinatal transmission.  When focusing on increasing HIV testing, all obstetricians, regardless of 
the HIV prevalence of their practice, should be targeted equally.  When focusing on the range 
of efforts directed at reducing the incidence of perinatal transmission, concentrating 
disproportionately on those obstetricians practicing in high prevalence settings may have more 
impact. More broadly, in States with high testing rates, focusing prevention funding on 
preventing HIV infection among women of childbearing age may provide an effective means of 
reducing transmission.  Given this tension, our recommendations have been purposely crafted 
to allow for State flexibility in their implementation. 
The CDC Should Facilitating the Development of 
Administrative Tools and States Should Promote 
Administrative Tools to Make Prenatal HIV Testing Universally 
Routine 
To have a significant impact on perinatal HIV transmission rates, we must ensure that all women 
are offered HIV testing, and treatment when positive, during prenatal care.  To this end, we 
recommend that HIV testing during prenatal care become a part of the universal standard of 
care for pregnant women.  This should be fully accepted and expected by the medical 
community, including institutions such as clinics, hospitals, 
28 
Reducing Barriers to HIV Testing  OEI-05-01-00260  managed care organizations and Medicaid. Our data shows that 74 percent of obstetricians 
indicated that making voluntary testing the standard of care at their clinic or hospital would be 
helpful in removing testing barriers. 
While prenatal HIV testing is a part of written office and clinic policies for almost half of 
obstetricians, the remaining providers and institutions should formally integrate this into their 
standard prenatal practice. Obstetricians with written office/clinic policies for prenatal HIV 
testing are significantly less likely to report barriers such as using risk assessments to determine 
testing. We offer some specific recommendations aimed at making HIV testing the universally 
practiced standard of care by incorporating HIV testing into routine practice and by 
streamlining the testing process. 
The CDC should, working in partnership with national health care provider organizations, 
promote the documentation of HIV testing by facilitating the development of model 
administrative tools 
One way to reinforce HIV testing of pregnant women as the practiced standard of care is for 
CDC to promote the documentation of HIV testing on all regular paperwork such as patient 
prenatal, labor and delivery charts, laboratory request slips and medical records forms.  This 
sends a strong message that HIV testing is an expected part of prenatal care and can be seen as 
the practical extension of CDCs perinatal testing guidelines. It also serves as a constant 
reminder to perform testing. From our interviews, several respondents noted that obstetricians 
use prenatal charts like a checklist for the office visit. In fact, many obstetricians showed us 
that prenatal patient charts do not contain a space to document the mothers HIV status, let 
alone whether or not HIV counseling and testing were offered. 
In order to promote the incorporation of HIV testing into expected practice, CDC should 
engage ACOG and other national health care provider organizations in a partnership to 
encourage the documentation of HIV testing on relevant records. It is crucial to include ACOG 
and other national health care provider organizations in any effort to impact obstetricians 
professional practice. Our findings demonstrate that influencing private obstetrician behavior is 
a major challenge and obstetricians are more likely to remember materials sent by ACOG. To 
assist this effort to encourage documentation, the CDC, in partnership with ACOG, could 
develop and disseminate a variety of model administrative forms.  The ACOG currently has 
prenatal chart forms for sale that include a space for HIV testing and disease status that could 
serve as the CDC model prenatal chart form.  Models could also be gathered from prenatal 
screening protocols and administrative procedures employed by MCHB grantees. 
Another administrative tool that, if adopted by institutions, could impact the standardization of 
testing into all prenatal care would be a dual patient education and consent form. Again, CDC, 
in conjunction with ACOG and other provider organizations, could promote the use of such a 
form by creating and disseminating a model form.  This form could be based on the minimum 
information essential for pregnant women prior to HIV testing as outlined in the revised CDC 
guidelines.  In the new guidelines, the 
29 
Reducing Barriers to HIV Testing  OEI-05-01-00260  minimum pretest information is condensed to six very brief points that should easily fit on a 
single sheet of paper along with any other necessary consent information. 
Some health care systems have already adopted a dual counseling and consent form. The New 
York State health department has created and distributed a standard HIV consent form to all 
healthcare providers. The consent form includes patient information on the HIV test, the 
benefits of testing (including prevention of perinatal transmission), State confidentiality and 
reporting requirements and other pertinent information.  The patient and healthcare provider 
both sign the form, and this fulfills the States pretest counseling and informed consent 
requirements. While no formal evaluation of the impact of this new form has been conducted, 
feedback from our respondents was extremely positive. 
State health departments should ensure that HIV testing is documented to administratively 
reinforce testing and should streamline consent to reduce burden 
States should actively work to ensure HIV testing documentation is incorporated as policy at 
the State and local levels, both within the public and private sectors. One way to promote 
documentation would be to disseminate and require the use of CDC developed model forms. 
On the other hand, many obstetricians and institutions may have forms designed specifically to 
fit their unique administrative procedures. In these cases, States may find it more practical to 
require the inclusion of HIV testing documentation on existing forms.  Currently, 13 States 
require, by law or regulation, that the offer of HIV testing be documented. Fourteen more 
States recommend documentation as their policy. 
States should also work to streamline their counseling and consent procedures along the lines of 
the minimum requirements laid out in the revised CDC guidelines.  The guidelines separate HIV 
prevention education from prenatal test offering. They recommend providing the patient prior 
to the test minimum pretest information rather than more extensive pretest counseling, which can 
be offered at another time.  As with earlier CDC guidelines, States should review their laws, 
regulations, policies and guidelines and modify them if needed in order to adopt the new 
streamlined pretest process outlined in the CDC guidelines or the model form provided by 
CDC. The Washington State Board of Health, for example, asked the public health 
department to undertake a review of existing regulations to determine if these rules present a 
barrier to implementation of HIV testing in pregnant women. Simplifying the State counseling 
and consent requirements reduces some of the administrative disincentives to offering testing to 
all pregnant women, including the time and burden many obstetricians associate with the pretest 
process. 
In order for these tools to be effective, they must be implemented as policy at the local level in 
both public and private settings.  Our findings demonstrated that obstetricians with written 
policy and procedures in place at their hospital or clinic were less likely to face barriers to 
universal prenatal testing.  Incorporating these new tools into the written policies and practice 
standards of the private sector will require States to partner with institutions and provider 
associations. Another potential avenue would be to work with medical school residency 
programs and professional associations such as the American 
30 
Reducing Barriers to HIV Testing  OEI-05-01-00260  Board of Obstetrics and Gynecology (ABOG) to incorporate streamlined HIV testing practices 
into medical education and training. 
The CDC and HRSA, in Collaboration with CMS, Should 
Facilitate Efforts to Expand the Capacity to Offer 
Linguistically Appropriate HIV Patient Education and Consent 
Materials 
Language barriers affected more obstetricians than any other barrier. Multilingual patient 
education materials and consent forms may ease the difficulty of limited verbal communication 
enough to ensure that pregnant women with limited English have the opportunity to make an 
informed decision about HIV testing. In fact, 53 percent of obstetricians reported that patient 
education materials would be helpful in reducing barriers to HIV testing. 
Such efforts are in line with the Department of Health and Human Services Strategic Plan to 
Improve Access to HHS Programs and Activities by Limited English Proficient Persons. 
Among other goals, this strategic plan already calls upon all HHS agencies, including CDC, to 
assess language needs and capacity of all programs and activities and to provide oral language 
assistance services and written translations of vital documents. The Centers for Medicare & 
Medicaid Services has a similar goal in ensuring that Medicaid-covered pregnant women with 
limited English receive the opportunity to make an informed HIV testing decision. 
The CDC and HRSA should collaborate with CMS to expand the language resources for 
perinatal HIV education and consent. Through the Maternal HIV Consumer Information 
Project (CIP), CMS has already developed and test marketed patient outreach and education 
materials on perinatal HIV prevention in 14 languages, including Spanish, Chinese, Russian, and 
Vietnamese.43 Census data could be used to pinpoint other language needs. The CDC has 
partnered with ACOG in development of consent information and consent forms in Spanish. 
The CDC, HRSA and CMS should coordinate their efforts to achieve this similar goal so that 
they can maximize effectiveness and minimize duplication. The model pretest consent form, 
described in the previous recommendation, should be included in this multilingual effort. 
Community-based organizations and other programs that provide services to HIV positive 
women as well as national provider organizations should be incorporated into this effort to 
expand language resources.  National health care provider organizations could provide 
invaluable insight into language translation needs as well as offer advice on appropriate content 
and usable formats. Community-based organizations, with their unique community perspective, 
have the knowledge necessary to develop linguistically appropriate, culturally sensitive 
translations. 
The CDCs National Prevention Information Network (NPIN), could provide the repository 
for these materials. The CDCs NPIN offers general HIV information in 
31 
Reducing Barriers to HIV Testing  OEI-05-01-00260  several languages; however, the selection of languages for materials specific to pregnancy and 
perinatal transmission remains limited. Also, using the NPIN network to refer providers to 
qualified national language banks and telephone translation services could also help to alleviate 
language barriers to offering HIV testing. Again, collaborating with national health care 
provider organizations to promote new language resources would be the most effective way to 
disseminate the information. 
The CDC Should Facilitate Development and States 
Implementation of Protocols for HIV Testing During Labor and 
Delivery in order to Promote Testing in this Setting as the 
Standard of Care 
Impacting transmission through prenatal HIV testing is only possible for women who receive 
prenatal care.  While great strides have been made in making prenatal care available, there are 
pockets of women, including HIV-infected women, that are less likely than the general 
population to access adequate prenatal care. For women who do not access prenatal care, as 
well as women who did not get tested during prenatal care, rapid or expedited HIV testing in 
the labor and delivery setting provides a crucial safety net.  Currently, almost half of 
obstetricians face challenges to offering HIV testing to women in labor with an unknown HIV 
status. The most commonly reported barriers related to the process of conducting counseling 
and obtaining consent during labor, followed by limitations in the capacity to produce test 
results quickly. In order to promote rapid or expedited HIV testing as the standard of care for 
women with unknown status during labor and delivery, we recommend that protocols be 
developed and instituted at the hospital level. 
The CDC should facilitate the development of a model protocol for HIV testing of 
women with unknown HIV status at labor and delivery 
Because the labor and delivery setting involves many challenges to rapid or expedited HIV 
testing, CDC should develop protocols for hospitals to routinize this process. This could be 
done in consultation with professional associations such as ACOG and other government 
agencies such as the Agency for Healthcare Research and Quality, the lead agency responsible 
for research on the functioning, quality and costs of the health care system. Our findings indicate 
that institutional policies for HIV testing of pregnant women positively influenced the likelihood 
of obstetricians routinely offering testing to women in labor with unknown status. They also 
minimized some of the barriers that prevent testing during labor. 
The policies instituted in hospitals should encompass three main aspects in order to overcome 
the barriers this report identifies. First of all, they should develop appropriate counseling and 
consent procedures.  Toward this end, CDC, in collaboration with ACOG, could promote the 
results, both interim and final, of their Mother Infant Rapid Intervention At Delivery (MIRIAD), 
which is evaluating innovative approaches to counseling and assessing the feasibility of obtaining 
informed consent. 
32 
Reducing Barriers to HIV Testing  OEI-05-01-00260  Secondly, CDC should offer States the technical assistance to ensure that all hospitals build the 
capacity, both administratively and technically, to produce HIV test results within the window 
of effective intervention. This could be accomplished by utilizing the Single Use Diagnostic 
System for HIV-1 (SUDS), the only FDA approved rapid test. Some States, such as Louisiana 
and Connecticut, have conducted perinatal prevention programs to explore rapid testing during 
labor.  Broader preparation for the general availability and greater reliability of these tests, at 
this point in time, ensures hospitals ability to quickly integrate the latest medical advancements 
related to perinatal prevention. If hospitals are reluctant to use SUDS due to concern about the 
rate of false positives, they could opt for expedited testing, in which preliminary results of 
standard HIV tests are returned within a few hours. One State, New York, already requires by 
law that all hospitals produce the results of standard HIV tests conducted during labor within 
forty-eight hours. Other hospitals would likely need technical assistance in building the 
laboratory capacity to process standard tests quickly. 
Finally, the labor and delivery protocols should include guidance regarding the administrative 
procedures necessary to ensure the confidential, written communication of the mothers testing 
status to the newborns physician. A lack of documentation of the mothers HIV status in the 
newborns chart can mislead a pediatrician to assume that the mother had tested negative for 
HIV when, in fact, she may not have been tested at all.  This misinformation could then impact 
the pediatricians subsequent recommendations for testing of the baby. 
This provision will need to take into consideration current State laws on confidentiality. 
According to a review of State laws conducted by ACOG, 20 States currently have 
confidentiality statutes that would allow for the disclosure of the mothers HIV status to the 
newborns physician.  Half of these States statutes directly reference the ability to disclose a 
mothers HIV status to the physician of her child. The rest of the States have confidentiality 
laws that either explicitly prohibit or appear to prohibit such an exchange of information. 
The CDC, CMS and States should partner with hospital associations to encourage 
institutions to incorporate labor and delivery protocols for HIV testing based on 
the CDC model protocols 
To achieve the effective implementation of these new labor and delivery protocols, CDC, CMS 
and States must work closely with hospitals and hospital associations. Ideally, the testing 
protocol would be incorporated into hospitals written standards for quality care. The CDC 
and CMS can lay the foundation for this effort by partnering with such entities as the American 
Hospital Association in order to promote the adoption of the protocol.  Working with the Joint 
Commission on Accreditation of Healthcare Organizations to include a labor and delivery 
protocol for HIV testing in their accreditation process or including HIV testing at labor and 
delivery as a measure in the Health Plan Employer Data and Information Set (HEDIS) are other 
possible routes to encouraging hospitals to adopt the protocol. 
33 
Reducing Barriers to HIV Testing  OEI-05-01-00260  The CDC Should Encourage and Assist States to 
Appropriately Monitor HIV Testing of Pregnant Women 
As a final means to improve the testing behavior of health care providers, we recommend that 
CDC work with State health departments to establish monitoring mechanisms that track HIV 
testing during pregnancy by provider. Monitoring testing rates, in conjunction with appropriate 
feedback, has the potential to alter behavior in instances where knowledge alone has proved 
insufficient.  Our data, as well as previous research, shows a discrepancy between what 
obstetricians know regarding the expected standard of care and their testing behavior, 
indicating that more education and training will not alter testing behavior for some obstetricians. 
Despite widespread knowledge that all pregnant women should be tested for HIV, 13 percent 
of obstetricians indicated that their assessment that their patients were at low risk has prevented 
them from testing. 
The CDC should assist States in developing monitoring systems that are appropriate to State 
and local needs. This could be accomplished by providing the technical assistance, including 
model tools, to assist hospitals or practices learn how to monitor and review their testing rates. 
Current monitoring systems and laws in 14 States offer a continuum of potential monitoring 
models for the rest of the country. The CDC could promulgate best practices from these 
models. 
At one end of the spectrum, Tennessee law requires that each health care provider report the 
total number of pregnant women tested for HIV and the total number of women who tested 
positive on a monthly basis to the public health department.  The department is required to 
publish these figures for the entire State and for each county.  Texas has developed a 
monitoring system that relies on hospitals rather than physicians. Hospitals record whether HIV 
testing has occurred and whether zidovudine was administered during pregnancy on every birth 
certificate. The State department is then responsible for compiling and utilizing this information. 
One advantage to a hospital-based solution is that it not only allows for the identification of 
those obstetric providers who are not testing during prenatal care, but could also assist in 
identifying those patients who were not tested or treated for reasons that are beyond the control 
of obstetricians. Other States have instituted methodologies such as random chart audits that do 
not require universal reporting by either physicians or hospitals.  New York conducts periodic 
on-site reviews to determine compliance with the prenatal HIV counseling requirements as well 
as HIV test acceptance rates. They offer technical assistance based on their analysis of these 
medical record reviews. 
Several other States have instituted the Pregnancy Risk Assessment Monitoring Systems 
(PRAMS) or enhanced perinatal surveillance, in collaboration with CDC.  The PRAMS is a 
population-based surveillance system that collects information on maternal behaviors and 
experiences around the time of pregnancy. Enhanced perinatal surveillance only collects HIV 
testing information for HIV-infected women and thus can only be used to assess missed 
prevention opportunities.  Michigan, for example, reviews cases at individual hospitals and 
practices where missed opportunities occurred and offers 
34 
Reducing Barriers to HIV Testing  OEI-05-01-00260  assistance in revising policies to prevent future problems. While assessing missed opportunities 
would not monitor whether all doctors were offering testing to all of their patients, it may prove 
to be an acceptable compromise for low prevalence counties where investments in a broader 
monitoring effort may not be practical.  Several of the monitoring systems profiled would be 
resource intensive to develop and maintain.  Currently, low prevalence areas do not receive 
money for enhanced perinatal surveillance. This, and other resource issues, may limit the 
extensiveness of the monitoring systems they are able to develop. 
The CDC, HRSA and States Should Pursue Public/Private 
Partnerships to Design, Implement and Institutionalize 
Targeted Efforts to Remove Obstetrician Barriers 
Collaborating with the private sector is essential in order to overcome the communication 
barrier that often exists between prevention experts focused on public health issues and health 
care professionals working in the context of a private market. Although most States indicate 
that they have engaged private partners in various perinatal efforts, we believe that States could 
benefit from even greater collaboration. The number one challenge faced by 36 States is 
influencing the behavior of private obstetricians. Without on-going, active partnerships with 
private providers, States may be missing opportunities to provide private obstetricians with the 
information and tools necessary to overcome barriers, or may not be effectively reaching many 
practitioners. Professional organizations and private providers understand the best ways to 
reach and convince providers. 
The CDC and HRSA should utilize public/private partnerships in implementing all 
the recommendations in this report by expanding current partnership projects 
Both CDC and HRSA have established partnerships with national health care provider 
organizations and other stakeholder organizations aimed at accomplishing perinatal transmission 
objectives. As mentioned in the background, CDC funds programs aimed at reducing perinatal 
transmission through ACOG, AAP and others national organizations. The Maternal and Child 
Health Bureau (MCHB) of HRSA funded a program, administered by ACOG, designed to 
foster partnerships between State agencies and private obstetricians around the topic of 
perinatal transmission.  These partnerships were established in two States.  The MCHB also 
administers the Healthy Start program to mobilize strong coalitions of consumers, local and 
State governments, the private sector, schools, perinatal providers and neighborhood 
organizations to improve health care access and outcomes for women and infants. The 
Association of Maternal and Child Health Programs (AMCHP) has established eight State 
Action Learning Labs that bring together a coalition of public and private stakeholders to 
educate each other across State lines. We strongly support these efforts and recommend their 
expansion in order to most effectively implement the preceding recommendations. We have 
addressed the specifics of these partnerships in the appropriate recommendation. 
35 
Reducing Barriers to HIV Testing  OEI-05-01-00260  The CDC should provide States with an impetus to include private providers in their efforts to 
overcome obstetrician barriers by including collaborative language in grants and guidance 
documents.  This language could encourage the development, maintenance and reporting of 
collaborative partnerships.  The HRSA should strengthen application guidance materials for all 
Ryan White CARE Act providers to come into compliance with all recommendations. Finally, 
CDC and HRSA should be prepared to assist grantees in their public/private partnerships when 
necessary by leveraging their national level partnerships. 
States should incorporate private partners in implementing all recommendations 
in this report 
State and local initiatives should strive to incorporate partners from the private sector in all 
efforts to address obstetrician barriers to offering HIV testing.  As stated previously, the most 
efficacious implementation of our recommendations rests on the ability of States to implement 
and institutionalize them as policy and practice at the local level.  Collaboration with private 
partners is necessary to make this happen.  These private partners should be active participants 
in the design and implementation of prevention efforts.  This could be done by incorporating 
partners such as obstetricians, representatives from clinics or hospitals or representatives from 
professional organizations such as ACOG, American Academy of Pediatricians (AAP), 
American Academy of Family Physicians (AAFP), American College of Nurse-Midwives 
(ACNM) or American Hospital Association (AHA) into ongoing or newly created task forces. 
36 
Reducing Barriers to HIV Testing  OEI-05-01-00260  A G E N C Y   C O M M E N T S  
We received comments on our draft report from HRSA, CDC, CMS and ACOG.  Each 
organization indicated that the report presented useful information for shaping future efforts to 
increase the HIV testing rates of obstetricians and thereby reduce perinatal HIV transmission. 
Each organization also supported the substance of the recommendations, although CDC 
expressed some reservations regarding their role in implementation. These reservations, as well 
as other issues of concern, are reviewed below.  One concept all of the organizations endorsed 
was the collaborative nature of the recommendations.  The ACOG in particular made note of 
the fact that the recommendations called for greater involvement of obstetricians, stating that 
the public/private partnership strategy is one of the best available for identifying which barriers 
and implementing effective strategies that will influence obstetricians behavior. 
While expressing support for the recommendations and a willingness to work towards their 
implementation in a collaborative fashion, the CDC expressed concern that they were called 
upon to take a leadership role rather than a supporting one.  They indicated that they believe 
they can more effectively aid in the implementation of our recommendations in an advisory 
capacity, providing technical assistance in developing standards and guidelines. 
We recognize that CDC is not always in the position to direct outside groups and that in these 
cases their leadership comes in the form of support and influence. We have modified our 
recommendations accordingly by emphasizing CDCs ability to facilitate desirable actions and 
outcomes. By emphasizing CDCs role as facilitator, we reflect on their initial success in 
promoting HIV testing of pregnant women via official recommendations for testing and through 
their administration of the perinatal prevention grants.  We believe that, as part of their 
prevention mission, CDC has a powerful role to play in facilitating and orchestrating further 
efforts to ensure that HIV testing is offered to all pregnant women. 
We also recognize that the recommendations put forth will require a broad array of resources 
to accomplish effectively, beyond that which CDC alone can bring to bear. For this reason, the 
recommendations were not directed solely to CDC, but rather to CDC in collaboration with 
HRSA, CMS, and the States.  Within the text of the recommendations, we offer other potential 
partners such as ACOG and other professional organizations. It is our hope and expectation 
that all of the stakeholders mentioned will actively collaborate with CDC to accomplish our 
recommendations. 
Both HRSA and ACOG shared concerns related to the scope of the report.  Both 
organizations pointed out that by not including other providers of prenatal and obstetric care, 
such as family physicians and certified nurse midwives, our findings and recommendations may 
not have relevance to the larger issue of increasing testing rates. It is true that the scope of this 
report was limited to obstetricians and excluded other health 
37 
Reducing Barriers to HIV Testing  OEI-05-01-00260  care providers. This limitation was based on the statutory language mandating this study. As 
such, this report only offers data regarding barriers to testing faced by obstetricians and 
recommendations on how to alter obstetrician practices.  The extent to which these 
observations and recommendations are representative of the practices of other health care 
providers is unknown.  However, obstetricians represent a major and important provider of 
health care in this arena.  The ACOG estimates that 85 percent of deliveries are attended by an 
obstetrician and believes that a somewhat lesser, yet unknown, percentage of prenatal care is 
provided by obstetricians. While all providers of prenatal and obstetric care should be 
encouraged to universally offer HIV testing to pregnant women, improving the testing rates of 
obstetricians would certainly result in improving overall testing rates. 
Finally, ACOG pointed out that some of the barriers faced by obstetricians are beyond 
obstetricians control. For example, counseling and consent laws, the lack of rapid tests in the 
labor and delivery setting and State confidentiality laws all may act as barriers to HIV testing. 
This is certainly true, and our recommendations request States to review such impediments. 
Due to the matrix of institutional and practice barriers we have identified, our recommendations 
suggest that responsible Federal agencies, States and private provider associations work 
together toward their common goal of increasing testing rates and reduce perinatal transmission. 
For a more detailed review of the comments provided by CDC, HRSA, CMS and ACOG, 
please refer to Appendix I.  This Appendix contains the general comments from all four 
organizations. We also received technical comments which were considered carefully and 
incorporated into the report as appropriate. 
38 
Reducing Barriers to HIV Testing  OEI-05-01-00260                Table 1.  Estimate of the number of HIV-positive infants, by mothers knowledge of HIV status
 
before, at, or after birth, United States, 2000
 
Rate  Low estimate  Estimate  High Estimate 
Modeled estimate of HIV+ women 13-44 
diagnosed and living with HIV without AIDS in 
2000 (1)  72,336 
Adjustment to estimate undiagnosed HIV+  (Low 1.11)  (High 1.19) 
women (2)  80,293  86,080 
Estimated births to HIV+ women 15-44 without 
AIDS (avg. 6 births per 100 PY) (3)  4,818  5,165 
Estimated number of women 13-44 living with 
AIDS in 2000 (4)  49,238 
Estimated births to 46% women with immunologic 
AIDS (3.2 pregnancies per 100 PY) (5) 
725  (=)  725 
Estimated births to 54% women with clinical 
AIDS (2.0 pregnancies per 100 PY) (6)  532  (=)  532 
Estimated total births (7)  6,075  6,422 
Scenario I (Based on observed data) 
(Proportion) and number of births whose mothers 
were diagnosed: 
before birth  (.89)  5,407  5,716 
at birth  (.05)  304  321 
after birth (8)  (.06)  364  385 
(Transmission rates (tm)) and number of HIV+ 
infants whose mothers were diagnosed: 
tm 
before birth  rate 
60% combination ARV  (.02)  65  69 
40% ZDV 076  (.06)  130  137 
at birth  (.10)  30  32 
after birth (9)  (.25)  91  96 
Total  316  334 
Scenario I: Estimated HIV+ Infants (10)  280-370 
Estimated HIV+ Infants whose mothers were 
diagnosed after birth (9)  80  110 
53 
Reducing Barriers to HIV Testing  OEI-05-01-00260  Rate  Low Estimate  Estimate  High Estimate 
Scenario II: Hypothetical data assuming 
mothers diagnosed after birth were 
diagnosed before birth 
(Proportion) and number of births 
whose mothers were diagnosed 
before birth (0.89 + 0.06)  (.95)  5,771  6,101 
at birth  (.05)  304  321 
(Transmission rates) and 
number of HIV+  infants whose 
mothers were diagnosed: 
before birth: 60% combination ARV  (.02)  69  73 
40% ZDV 076  (.06)  138  146 
at birth  (.10)  30  32 
Total  237  251 
Scenario II: Estimated HIV+ infants (11)  210  280 
Scenario III: Hypothetical data assuming all 
mothers were diagnosed before birth 
(Proportion) and number of births whose mothers  (1.0)  6, 075  6,422 
were diagnosed before birth (.89+.05+.06) 
(Transmission rates) and 
number of HIV+  infants whose mothers were 
diagnosed: 
before birth: 60% combination ARV  (.02)  73  77 
40% ZDV 076  (.06)  146  154 
Total  219  231 
Scenario III: Estimated HIV+ infants (12)  190  260 
54 
Reducing Barriers to HIV Testing  OEI-05-01-00260  Footnotes__________________________________________ 
(1) CDC unpublished data.  Dr. Robert H. Byers developed a Poisson regression model to estimate the 
number of persons living with diagnosed HIV infection in the United States.  The model is based on 
data from 25 states that conduct confidential (i.e. by patient name) HIV case reporting.  Estimates of 
the number of prevalent diagnosed cases of HIV are derived from the relationship between AIDS 
incidence and deaths, taking into account race/ethnicity, risk, age, and a proxy variable for the age of 
the epidemic in each state.  A parsimonious model was selected that obtained the best fit of observed 
cases to modeled estimates and the model was applied to non-HIV reporting states.  The estimated 
total number of women (13-44) living with diagnosed HIV (without AIDS) in the United States was 
derived. An approximate 95% confidence interval for the estimate is from 71,809 to 72,865.  These 
numbers do not represent actual counts of HIV-infected women because they are based on a model. 
(2) Not all HIV-infected women are diagnosed with HIV in the 25 HIV reporting states that were the 
basis for the total U.S. estimates in (1) above. Thus, the estimate only represents a proportion of all 
women with HIV (without AIDS).  We used two methods (high and low) to adjust the estimate in 
(1).  In data from 7 states (Wortley et al., 2001), the number of mother-infant pairs that were 
diagnosed and reported to HIV/AIDS surveillance was 90% of the total number of births to HIV+ 
women in those states, as estimated from the anonymous Survey of Childbearing Women.  This rate 
of completeness of reporting was used to obtain the factor for the low estimate (1/.9=1.11).  Because 
these data only represented 7 states, we used an indirect method to obtain the factor for the high 
estimate.  Assuming that the number of prevalent HIV cases in women 15-44 years from previously 
published estimates remained stable (Davis et al., 1998), we compared the estimated prevalence of 
HIV (without AIDS) for the U.S. (86,000 in 1994) to the estimated prevalence of diagnosed HIV 
(without AIDS) in 2000 (86,000/72,000=1.19). 
(3) We used published data from Lee et al., 2000.  The average number of births to HIV+ women 
(without AIDS) was 6 per 100 person years (PY).  The data were derived from a population of 
positive compared to negative women receiving Medicaid in Maryland.  Although not necessarily 
representative of all HIV+ women in the U.S., the study is unique in examining fertility of HIV+ 
women in the U.S. and the study population included mostly racial/ethnic minority women who 
account for the vast majority of AIDS cases in women in the U.S.  The underlying assumption is that 
the age distribution and fertility of the study population is similar to that of all HIV+ U.S. women. 
(4) Estimate is derived from national AIDS surveillance data and represents all women of childbearing 
age living with AIDS in the U.S. at the end of 2000.  Data are adjusted for reporting delays. (CDC 
unpublished data) 
(5) With increasing age, both fertility decreases and HIV disease progresses, which in itself is associated 
with decreased fertility.  Fertility has generally been presumed to be low in women with AIDS.  To 
estimate births to women with AIDS, we used unpublished CDC data from the Adult/adolescent 
Spectrum of Disease project (ASD) conducted in over 100 clinics in 11 U.S. cities.  Data on HIV+ 
adults/adolescents are abstracted at 6 month intervals.  We calculated the number of recorded 
pregnancies for women 15-44 per 100 person years of observation during 1994-1999.  For women 
with AIDS, we divided our calculations into women with immunologic AIDS (representing 46% of 
women with AIDS and having 3.2 pregnancies per 100 person years (PY)) and, 
(6) women with clinical AIDS (i.e. AIDS opportunistic illnesses; 54% of women with AIDS and having 
2.0 pregnancies per 100 PY).  ASD does not necessarily record pregnancy outcome such that the 
underlying assumption is that the pregnancies resulted in live births, which may slightly overestimate 
the number of live births to women with AIDS. 
(7) The sum of (3), (5), and (6) for low and high estimates. 
55 
Reducing Barriers to HIV Testing  OEI-05-01-00260   (8)  In 7 states that conducted the Surveillance to Evaluate Prevention project (STEP), the proportion of 
mothers who were tested for HIV before their childs birth rose from 1993 through 1997 and then 
stabilized at an estimated 89% of all perinatally exposed infants who were diagnosed as indeterminate 
or infected and reported to surveillance; 5% of mothers were diagnosed at the time of labor and 
delivery, and 6% of mothers were found to be HIV positive after their childs birth.  This assumes 
that mothers who are diagnosed before birth have the opportunity for all 3 arms of the 076 protocol 
(prenatal, intrapartum, neonatal); those diagnosed at birth have the opportunity for two arms; infants 
of those diagnosed after birth may receive one or no arms.  (CDC unpublished data; Hammett et al., 
2001) 
(9) Because there is a lag between births to positive mothers and enough time to conduct follow up 
testing of the infant to determine infection status, and for reporting to health departments and then to 
CDC, we used unpublished CDC data on transmission rates for perinatally exposed infants reported 
from the 7 STEP states who were born during 1995 through 1997.  Mothers who had an opportunity 
to receive all three arms of the Pediatric AIDS Clinical Trials Group (PACTG) protocol 076 
(prenatal, intrapartum, neonatal) had an observed 6% transmission rate.  Based on data from all HIV 
reporting states in 2000, we applied that transmission rate (i.e. 0.06) to 40% of the estimated number 
of infants born in 2000 whose mothers were diagnosed before birth.  We applied a lower transmission 
rate (2% from recent unpublished data presented at national conferences from observational cohorts) 
to 60% of mothers who were diagnosed before birth.  These mothers were receiving combination 
antiretroviral therapy which reduced transmission to rates substantially lower than those observed for 
the 076 protocol alone (8% in the PACTG 076 trial).  The data from STEP states are more recent 
and may reflect additional factors associated with reductions in transmission, such as stage of 
maternal disease or mode of delivery, thus accounting for the observed 6% in these states versus 8% 
in the 076 trial.  We applied a transmission rate of 0.1 to those mothers who were diagnosed at birth 
(intermediate between 6% and 14%, the range observed for infants who received two or one 
arm(s)).  In the 7 STEP states, the observed transmission rate for all perinatally exposed infants 
diagnosed and reported for the baseline year 1993 (before 076 results) was approximately 20%. 
However, we applied the 25% reported for the placebo arm in the 076 trial to the 6% of births whose 
mothers were diagnosed after birth to produce a conservative (i.e. maximum) estimate of the number 
of infected infants born because their mothers were not tested at or before birth.  The estimated 
range of the number of infants born  whose mothers were not diagnosed before or at birth is from 91 
to 96 infants.  Because the parameter estimates in this exercise are derived from a variety of studies 
each of which may represent a small proportion of all HIV+ mothers in the U.S. , we adjusted our 
estimates to an approximate range of +/- 10% (82-106), and rounded up and down to the nearest ten, 
for an estimated range of 80 to 110. 
(10)The sum of the estimates of positive births for all categories of timing of maternal diagnosis and 
transmission rates.  As in (9), the calculated range of 316 to 334 is based on estimates that are not 
necessarily representative of all HIV+ U.S. mothers and we estimate that an approximate range is 
+/- 10% or 284 to 367, which,  rounded to the nearest ten, is 280-370 HIV-positive infants born in 
2000.  The estimated proportion of all HIV+ infants born in 2000 that is attributable to mothers 
testing after birth ranges from 22% (80/370) to 39% (110/280).  The peak number of live births to 
HIV+ women occurred in 1991.  From the anonymous Survey of Childbearing Women, an estimated 
7,040 births to HIV+ mothers occurred in that year, of which it is assumed that 1,760 were HIV+ 
infants based on a 25% transmission rate.  The estimated range of 280 to 370 HIV+ infants born in 
2000 represents a decline in perinatally acquired HIV infections of between 79% and 84%.  This is 
consistent with the observed decline perinatally acquired AIDS cases.  These cases peaked in 1992 
and declined more than 80% through 2000. 
(11)At OIGs request, we constructed two hypothetical scenarios.  First, assuming that all mothers 
diagnosed after birth were diagnosed before birth and received treatment prenatally, the estimated 
56 
Reducing Barriers to HIV Testing  OEI-05-01-00260  number of HIV-positive infants born in 2000 would be 237-251. After adjusting +/- 10% and rounding 
to the nearest ten, the estimated number of HIV-positive infants under this scenario is in the range 
210-280. 
(12)  Second, assuming that all mothers diagnosed at or after birth were diagnosed before birth and 
received treatment prenatally, the estimated number of HIV-positive infants born in 2000 would be 
219-231. After adjusting +/- 10% and rounding to the nearest ten, the estimated number of HIV-
positive infants under this scenario is in the range 190-260. 
References: 
Davis, SF, DH Rosen, S Steinberg, PM Wortley, JM Karon, M Gwinn.  Trends in HIV prevalence among 
childbearing women in the United States, 1989-1994.  Journal Acquir Immune Defic Syndr and Hum 
Retro 1998;19:158-164. 
Hammett, T, ML Lindegren, R Byers, P Wortley.  Progress towards elimination of perinatal HIV 
infection in the United States.  XIII International AIDS Conference, Durban, South Africa.  July 9-14, 
2000.  Abstract MoOrC239 (page 103). 
Lee, LM, PM Wortley, PL Fleming, LJ Eldred, RH Gray.  Duration of human immunodeficiency virus 
infection and likelihood of giving birth in a medicaid population in Maryland.  Am Journal Epidem 
2000;151:1020-1028. 
Lindegren, ML, R Byers, P Thomas, et al.  Trends in perinatal transmission of HIV/AIDS in the United 
States.  JAMA 1999;282:531-538. 
Wortley PM, ML Lindegren, PL Fleming.  Successful implementation of perinatal HIV prevention 
guidelines: a multistate surveillance evaluation.  CDC MMWR 2001;50(No.RR-6):17-28. 
57 
Reducing Barriers to HIV Testing  OEI-05-01-00260  Table 2.  Summary * of Estimated transmission rates and numbers of HIV+ infants whose
 
mothers were undiagnosed before, at, or after birth, United States, 2000
 
Diagnosed  Proportion  Transmission  Low estimate of  High estimate of 
Treated  births  births 
Before birth  0.6 ARV  0.02  65  69 
0.4 ZDV 076  0.06  130  137 
At birth  0.10  30  32 
After birth  0.25  91  96 
Total  316  334 
* Derived from Table 1
 
**Estimated range after adjustment and rounding (see footnote 10): 316 x 0.9=284; round down to 280; 334 x 1.1=367
 
Table 3.  Summary* of estimated ranges of HIV+ infants born in 2000 assuming three scenarios 
- 89%, 95% and 100% of mothers diagnosed before birth and treated prenatally, United States, 
2000. 
Proportion of mothers diagnosed before birth:  Adjusted estimated ranges of HIV+ infants 
.89  280-370 
.95  210-280 
1.00  190-260 
* Derived from Table 1
 
58 
Reducing Barriers to HIV Testing  OEI-05-01-00260  APPENDIX E 
National Obstetrician Survey Instrument
 
1.  Do you currently practice obstetrics? 
 
Yes  No  (If NO, please SKIP to Question 23 ) 
2.  In what State and zip code is the majority of your obstetrics practice located?
 
(For the rest of this survey, please ONLY consider your practice in this 
State  Zip Code 
particular location.) 
PRENATAL HIV COUNSELING AND TESTING 
3.  To how many of your pregnant patients do you offer HIV testing?
 
None  Some  Most  All 
4.  Which BEST describes your procedure for offering HIV testing to a pregnant patient? (Check ONE)
 
Advise her that I will perform the test and that she has the right to refuse 
Offer to perform an HIV test but indicate that it is her choice 
5.	  Which steps, if any, occur prior to you testing a pregnant woman for HIV? (Check ALL THAT
 
APPLY)
 
I (Obstetrician) discuss HIV and perinatal transmission with  Patient signs consent form to cover all 
patient  prenatal tests 
Other staff discusses HIV and perinatal transmission with patient  Patient signs specific consent form for HIV 
test 
Patient receives written information or a video on HIV  Patient gives verbal consent for HIV test 
Other (please specify) 
____________________________________________________________________________________ 
6.  Which category BEST reflects your HIV testing practices with each of the following types of patients?
 
Recommend  Test only upon  Offer  Recommend 
against testing  patient request  testing  testing 
Pregnant women at high risk for HIV 
Pregnant women at low risk for HIV 
7.  What steps do you take if your pregnant patient refuses to consent to HIV testing?
 
59 
Reducing Barriers to HIV Testing  OEI-05-01-00260  Document refusal in the patients medical record  No  Yes 
Inquire as to the reason for refusal  No  Yes 
Re-offer testing at a subsequent prenatal appointment  No  Yes 
Other (please specify)____________________________________  No  Yes 
8.  Does your office/clinic have a written policy regarding HIV counseling and testing of pregnant women? 
No  Yes 
9.  Are you familiar with your States laws or policies regarding HIV testing of pregnant women? 
No, Im not familiar  Yes, Im familiar  My State has no such laws or policies 
PRENATAL HIV TESTING BARRIERS 
For Questions 10 and 11, please consider only the time period prior to the onset of labor. 
Please consider any instances in which you have NOT offered HIV testing to a pregnant patient. Has 
10.	 
each of the following EVER been a reason that you have NOT offered an HIV test to a pregnant 
patient?  If yes, HOW OFTEN has this prevented you from offering an HIV test? 
Has This Ever Prevented 
You from Offering an HIV Test?  Once or twice  Sometimes  Often  Always 
Pretest counseling too time-consuming  No  Yes y 
Consent process too time-consuming  No  Yes y 
Patient is at low risk  No  Yes y 
Concern about offending patient  No  Yes y 
Late entry into prenatal care  No  Yes y 
Inadequate reimbursement  No  Yes y 
Concern about informing a pregnant woman shes HIV-positive  No  Yes y 
Concern about treating an HIV-positive patient  No  Yes y 
Language barrier  No  Yes y 
It is not the standard of care in my hospital/clinic  No  Yes y 
11.	  To what extent would each of the following help YOU, in your practice, to routinely offer HIV testing
to all of your pregnant patients? 
Not  Somewhat  Very 
Helpful  Helpful  Helpful 
Continuing education courses on perinatal HIV 
Training on HIV counseling 
Scripts for HIV counseling 
Reducing time involved in pretest counseling requirements 
Reducing time involved in consent requirements 
Designating a non-physician staff member to conduct HIV counseling and to obtain consent 
Making voluntary HIV testing of all pregnant women the standard of care in my hospital/clinic 
Inclusion of HIV test in standard prenatal testing battery 
60 
Reducing Barriers to HIV Testing  OEI-05-01-00260  Resource lists of HIV specialists and treatment hotlines 
Patient education materials 
HIV COUNSELING AND TESTING DURING LABOR AND DELIVERY 
12. Do you offer HIV testing to women in labor with unknown HIV status? 
Never  Sometimes  Often  Always 
13.	  Please consider any instances in which a woman presented in labor with unknown HIV status.  Has each 
of the following EVER been a reason that you have NOT offered an HIV test during labor?  If yes, 
HOW OFTEN has this reason prevented you from offering an HIV test? 
Has This Ever Prevented 
You from Offering an HIV Test?  Once or twice  Sometimes  Often  Always 
Test results take too long  No  Yes y 
Rapid or expedited HIV tests not available  No  Yes y 
Too much emotional stress for patient  No  Yes y 
Insufficient time to counsel during labor  No  Yes y 
Too difficult to obtain consent during labor  No  Yes y 
Too late for preventive treatment  No  Yes y 
Hospital did not have antiretroviral drugs available for treatment  No  Yes y 
HIV TESTING OF NEWBORNS 
What are your HIV testing practice(s) for newborns whose mothers HIV status is unknown? 
14. 
Newborn testing is handled solely by newborns physician  Never  Sometimes  Often  Always 
I recommend testing to the newborns physician  Never  Sometimes  Often  Always 
I recommend newborn HIV testing to the mother  Never  Sometimes  Often  Always 
I perform/order an HIV test for the newborn  Never  Sometimes  Often  Always 
Other (please specify) _______________________________________________________________________________________ 
Please consider newborns whose mothers HIV status is unknown.  Has each of the following EVER 
15.	 
been a reason that you have NOT tested such a newborn for HIV?  If yes, HOW OFTEN has this 
reason prevented you from testing a newborn for HIV? 
Has This Ever Prevented 
You from Testing?  Once or twice  Sometimes  Often  Always 
Recommended test to newborns physician  No  Yes y 
OB not responsible for newborn testing  No  Yes y 
Lack of communication with newborns physician  No  Yes y 
Testing violates mothers privacy  No  Yes y 
Parent(s) refused consent  No  Yes y 
Patient(s) not likely to return for follow up  No  Yes y 
16. Are you familiar with your States laws or policies regarding HIV testing of newborns? 
No, Im not familiar  Yes, Im familiar  My State has no such laws or policies 
61 
Reducing Barriers to HIV Testing  OEI-05-01-00260  ADDITIONAL INFORMATION AND SUGGESTIONS 
17. Please describe any additional barriers to testing pregnant women and/or newborns for HIV.
 
18.	 Please offer any additional suggestions for reducing barriers to HIV testing of pregnant women and/or
 
newborns?
 
BACKGROUND INFORMATION 
19.  Approximately what percentage of your practice is obstetrics?
  % 
20. Have you ever provided care for an HIV-positive pregnant woman?
  Yes  No 
21.  Have you received any educational materials or training on perinatal HIV from the following sources?
 
The American College of Obstetricians and Gynecologists (ACOG)  Yes  No 
The Centers for Disease Control and Prevention (CDC)  Yes  No 
Your State or local health department  Yes  No 
Your hospital  Yes  No 
Education course (outside your hospital)  Yes  No 
Insurance company or managed care organization  Yes  No 
22.  About what percentage of your pregnant patients utilize each of the following insurance sources?
 
% Private Insurance  % Medicaid  % Self-Pay/No Insurance  % Other 
23.  Please provide the following demographic information.
 
a. Practice location:  Urban  Suburban  Rural  Military 
b. Practice setting:  Private, community  Private, hospital  Public, community  Public, hospital 
c. Gender:  Female  Male 
d. Years since completion of residency:  Years 
62 
Reducing Barriers to HIV Testing  OEI-05-01-00260  APPENDIX F 
Confidence Intervals for Selected Statistics
 
90 Percent 
Point  Confidence 
Statistic  Estimate  n  Interval 
Percent of obstetricians reporting the following 
testing practices: 
Routinely offer HIV testing to all prenatal patients  92.9%  475  90.9% to 94.8% 
Routinely offer HIV testing to women of unknown status during  48.0%  464  44.2% to 51.8% 
labor 
Never offer HIV testing to women of unknown status during  17.0%  464  14.2% to 19.9% 
labor 
Newborn testing is the responsibility of the newborns  93.4%  435  91.4% to 95.3% 
physician 
Percent of obstetricians reporting that this barrier 
has ever prevented test offering during prenatal 
care: 
Language barrier  15.1%  458  12.3% to 17.8% 
Late entry into prenatal care  13.3%  458  10.7% to 16.0% 
Patient population is at low risk  13.1%  460  10.5% to 15.7% 
Pretest counseling too time consuming  5.3%  457  3.5% to 7.0% 
Consent process too time consuming  5.0%  457  3.4% to 6.7% 
Concern about offending patient  4.6%  457  3.0% to 6.2% 
Inadequate reimbursement  1.5%  458  0.6% to 2.5% 
It is not the standard of care in my hospital/clinic  1.1%  452  0.3% to 1.9% 
Concern about informing a pregnant woman she is HIV+  0.7%  457  0.0% to 1.7% 
Concern about treating an HIV+ patient  0.7%  458  0.0% to 1.7% 
63 
Reducing Barriers to HIV Testing  OEI-05-01-00260  90 Percent 
Point  Confidence 
Statistic  Estimate  n  Interval 
Percent of obstetricians reporting that this barrier 
has ever prevented test offering during labor: 
Insufficient time to counsel during labor  32.2%  451  28.6% to 35.8% 
Too difficult to obtain consent during labor  28.2%  450  24.8% to 31.8% 
Test results take too long  18.9%  451  15.9% to 21.9% 
Rapid or expedited HIV tests not available  17.8%  451  14.8% to 20.7% 
Too late for preventive treatment  17.7%  450  14.2% to 20.0% 
Too much emotional stress for patient  8.9%  451  6.7% to 11.0% 
Hospital did not have antiretroviral drugs available for treatment  1.1%  449  0.3% to 1.9% 
Percent of obstetricians reporting the following 
sources of information on perinatal HIV: 
Received educational information or training from ACOG  93.6%  469  91.7% to 95.5% 
Received educational information or training from CDC  71.2%  465  67.7% to 74.6% 
Received educational information or training from their  28.9%  463  25.4% to 32.3% 
hospital 
Received educational information or training from their  53.0%  462  49.2% to 56.8% 
State or local health department 
Office/clinic has a written policy on HIV testing of  45.9%  470  42.2% to 49.7% 
pregnant women 
Obstetrician is familiar with State laws or policies on HIV  61.5%  471  58.0% to 65.1% 
testing of pregnant women 
64 
Reducing Barriers to HIV Testing  OEI-05-01-00260  APPENDIX G 
Logistic Regression Models
 
We used logistic regression to identify predictors of several key variables. The following tables display the odds 
ratios for each of the significant predictors (at p< 0.10 level) in each of those logistic regressions. The non-
significant variables are also listed below each table. In logistic regression, an odds ratio of 1 is considered neutral, 
an odds ratio greater than one is considered a positive relationship and anything less than one indicates a negative 
relationship. For example, obstetricians in the high prevalence strata are 1.73 times more likely not to face barriers in 
offering testing during prenatal care. 
Logistic Regression Model 1: No Barriers during Prenatal Care 
Predicting that none of the barriers on our survey have ever prevented an obstetrician from offering HIV 
testing during prenatal care. 
Independent Variable  Odds Ratio  p-value 
Positive Relationships: 
Obstetrician advises woman test will be performed but she can refuse  2.78  0.00 
Obstetrician received information/training on perinatal HIV from CDC  2.05  0.01 
Office/clinic has written policy on HIV testing of pregnant women  1.83  0.02 
High prevalence strata  1.73  0.03 
Negative Relationships: 
Obstetrician not familiar with State laws  0.35  0.00 
Obstetrician received information/training on perinatal HIV from State/local health  0.57  0.04 
dept 
Practice setting is in a hospital  0.59  0.05 
65 
Reducing Barriers to HIV Testing  OEI-05-01-00260  Logistic Regression Model 2: No Language Barriers 
Predicting an obstetrician will report that language has never been barrier to offering HIV testing during prenatal care. 
This model includes only the subset of obstetricians who reported at least one barrier to testing. 
Odds 
Independent Variable  Ratio  p-value 
Positive Relationships: 
Obstetrician practices in an suburban location (compared to urban or rural)  2.17  0.05 
Obstetrician received information/training on perinatal HIV from State/local  1.93  0.09 
health dept 
Negative Relationship: 
Obstetrician routinely offers testing to prenatal patients  0.39  0.08 
Non-significant variables in model: obstetrician received information/training on perinatal HIV from CDC; strata; 
office/clinic has written policy on HIV testing; percentage of patients with no insurance; obstetrician provides patient 
with written materials or video on HIV prior to testing 
Logistic Regression Model 3: No Late Entry into Prenatal Care Barriers 
Predicting an obstetrician will report that late entry has never been a barrier to offering HIV testing during 
prenatal care.  This model includes only the subset of obstetricians who reported at least one barrier to 
testing. 
Odds 
Independent Variable  Ratio  p-value 
Positive Relationships: 
Obstetrician practices in an urban location (compared to rural)  4.66  0.06 
Obstetrician received information/training on perinatal HIV from their hospital  3.66  0.01 
Obstetrician routinely offers testing to women in labor with unknown status  2.61  0.05 
Percentage of patients with private insurance  1.01  0.03 
Negative Relationship: 
Obstetrician routinely offers testing to prenatal patients  0.18  0.00 
Non-significant variables in model: years since completion of residency; suburban practice location (compared to rural); 
strata 
66 
Reducing Barriers to HIV Testing  OEI-05-01-00260  Logistic Regression Model 4: No Risk Assessment Barriers 
Predicting an obstetrician will report that patient population at low risk has never been a barrier to offering HIV 
testing during prenatal care. This model includes only the subset of obstetricians who reported at least one barrier to 
testing. 
Independent Variable  Odds Ratio  p-value 
Positive Relationships: 
Obstetrician routinely offers testing to prenatal patients  6.93  0.02 
Office/clinic has written policy on HIV testing  2.12  0.09 
Years since completion of residency  1.06  0.03 
Negative Relationships: 
Obstetrician reported concern about offending patient as a barrier  0.10  0.00 
Percentage of patients with private insurance  0.98  0.02 
Non-significant variables in model: suburban practice location (compared to rural); recommending testing (vs offering 
testing) to women at low risk for HIV 
Logistic Regression Model 5: Not Routinely Offering Testing during Labor 
Predicting that obstetrician does not routinely offer testing to women in labor with unknown HIV status. 
Odds 
Independent Variable  Ratio  p-value 
Positive Relationships: 
Obstetrician reported a risk assessment barrier during prenatal care  5.07  0.00 
Obstetrician reported late entry into prenatal care as a barrier during prenatal  2.84  0.01 
care 
Negative Relationships: 
Obstetrician advises woman test will be performed but she can refuse  0.25  0.00 
Obstetrician received information/training on perinatal HIV from hospital  0.34  0.00 
High prevalence strata  0.66  0.07 
Obstetrician received information/training on perinatal HIV from a course (outside  0.67  0.08 
hospital) 
Non-significant variables in model: percentage of practice that is obstetrics; obstetrician received information/training 
on perinatal HIV from CDC; obstetrician received information/training on perinatal HIV from State/local health dept 
67 
Reducing Barriers to HIV Testing  OEI-05-01-00260  Logistic Regression Model 6: No Barriers during Labor 
Predicting that none of the barriers on our survey have ever prevented an obstetrician from offering HIV 
testing to a woman of unknown status during labor. 
Odds 
Independent Variable  Ratio  p-value 
Positive Relationships: 
Obstetrician advises woman test will be performed but she can refuse  2.33  0.00 
Obstetrician received information/training on perinatal HIV from hospital  2.24  0.00 
High prevalence strata  1.50  0.07 
Negative Relationships: 
Obstetrician reported a risk assessment barrier during prenatal care  0.31  0.00 
Obstetrician has ever cared for an HIV+ pregnant patient  0.56  0.03 
Obstetrician not familiar with State laws  0.61  0.03 
Non-significant variables in model: years since completion of residency 
68 
Reducing Barriers to HIV Testing  OEI-05-01-00260  APPENDIX H 
Non-Response Analysis
 
A consideration in survey analysis is that the results may be biased if non-respondents are significantly 
different from respondents. To determine whether such differences exist in this survey, we attempted 
to contact 60 non-respondents (30 from each strata) by telephone to ask them key questions from our 
survey. We randomly selected the 60 non-respondents and 60 replacements (in case we could not 
complete the interviews of the original 60) using a program called Rat-stats.  Our office placed at least 
three phone calls to each of the 60 non-respondents and then to each of the 60 replacement non-
respondents. Ultimately, we completed surveys for 30 practicing obstetricians. Additionally, we 
spoke with six non-respondents who do not currently practice obstetrics. 
Using the 30 completed surveys, we compared the two groups, respondents and non-respondents, 
with regards to demographics, testing patterns and prenatal barriers. We used chi-square tests of 
association to identify any significant differences between these two groups of obstetricians. We 
considered differences significant if p< 0.10.  Table 1 displays the characteristics that did not differ 
significantly between non-respondents and respondents.  Table 2 displays the significant differences 
between the two groups. 
Non-respondents did not vary from respondents in their test offering practices. Almost all 
obstetricians reported routinely offering testing to prenatal patients, and chi-square tests of association 
showed no significant difference between the reported test offering practices of respondents and non-
respondents.  Non-respondents' test offering practices in the labor and delivery setting also showed 
no significant differences from the respondents' practices during labor. 
Likewise, the non-respondents did not differ significantly from respondents in whether they reported 
any barriers to offering testing during prenatal care. Also, non-respondents did not differ significantly 
from respondents for two of the top barriers to prenatal test offering identified by our survey, patient 
population is at low risk and late entry into prenatal care. 
However, some other prenatal testing barriers did differ between the two groups.  Notably, non-
respondents reported language barriers less often than respondents did. This variation could suggest 
that a language barrier affects less than the 15 percent of the universe of obstetricians as reported by 
our survey respondents.  Additionally, some barriers reported by a small percentage of respondents 
were not reported by any non-respondents, and therefore, demonstrated a significant difference 
between these groups. 
69 
Reducing Barriers to HIV Testing  OEI-05-01-00260  Table 1: Variables showing NO Significant Difference between Respondents and 
Non-Respondents 
Variable  p-value 
whether ob routinely offers testing to all prenatal patients  0.310 
whether ob offers testing never, sometimes/often or always during  0.390 
labor 
whether ob reported any barriers during prenatal care  0.166 
whether ob reported risk assessment barrier during prenatal care  0.647 
whether ob reported late entry into prenatal care as barrier  0.207 
whether ob concern about how to treat HIV+ woman as prenatal barrier  0.418 
whether ob reported not standard of care in my hospital/clinic as prenatal  0.232 
barrier 
whether ob practices in urban, suburban, rural or military location  0.330 
whether ob has ever cared for HIV+ pregnant patient  0.335 
Table 2: Variables showing Significant Differences between Respondents and 
Non-Respondents 
Variable  p-value  Respondents  Non-
Respondents 
ob reported language barrier during prenatal care  0.007  15%  3% 
ob is female  0.006  48%  23% 
70 
Reducing Barriers to HIV Testing  OEI-05-01-00260          APPENDIX J 
Endnotes 

1.  Ryan White CARE Act Amendments of 2000, Pub. L. No. 106-345, Title II, Sec. 213 (2000). 
2.	  Lindegren, M.L., et al (1999). Trends in Perinatal Transmission of HIV/AIDS in the United States. JAMA, 
282, 531-538. 
3.  Mofenson L.M., Lambert J.S., Stiehm E.R., et al. (1999). Risk factors for perinatal transmission of human 
immunodeficiency virus type 1 in women treated with zidovudine. New England Journal of Medicine, 341, 
385-93. Ioannidis J.P.A., Abrams E.J., Ammann A., et al. (2001). Perinatal transmission of human 
immunodeficiency virus type 1 by pregnant women with RNA viral loads less than 1,000 copies/ml. Journal 
of Infectious Disease, 183, 539-45. Garcia P.M., Kalish L.A., Pitt J., et al. (1999). Maternal levels of plasma 
human immunodeficiency virus type 1 RNA and the risk of perinatal transmission. New England Journal of 
Medicine, 341, 394-402. 
4.	  American Academy of Pediatrics - American College of Obstetricians and Gynecologists Joint 
Statement on Human Immunodeficiency Virus Screening. (1999). 
5.	  Stoto, M. A., Almario, D. A. & McCormick, M. C. (Eds.). (1999). Reducing the Odds: Preventing Perinatal 
Transmission of HIV in the United States. Washington, DC: National Academy Press. 
6.  Ryan White CARE Act Amendments of 1996, Pub. L. No. 104-146 (1996). 
7. 	  Centers for Disease Control and Prevention. (2001). Revised Recommendations for HIV Screening of 
Pregnant Women. Morbidity and Mortality Weekly Report, 50 (RR-19), 59-100. 
8.	  Centers for Disease Control and Prevention. (1999). Prenatal Discussion of HIV Testing and Maternal HIV 
Testing  14 States, 1996-1997. MMWR, 48(19), 401-404. 
9.  Stoto, M. A., Almario, D. A. & McCormick, M. C. (Eds.). (1999). Reducing the Odds: Preventing  Perinatal 
Transmission of HIV in the United States. Washington, DC: National Academy Press. 
10. 	  Compiled from the following sources: American College of Obstetricians and Gynecologists (2000). 
[National Obstetrician Perinatal HIV Survey, and North Carolina Obstetrician Perinatal HIV Survey]. 
Unpublished raw data. Wilson, E. L., Hamm, R. H. & Kleier, K. M. (1998). Perinatal HIV Prevention: A 
Statewide Survey of Missouri Health Professionals About Critical Issues on Perinatal HIV Transmission. 
Missouri Epidemiologist, 20 (5), 1-6. 
11. 	  Centers for Disease Control and Prevention. (2001). Morbidity and Mortality Weekly Report, 50 
(No. RR-6), 23. 
12. 	  Centers for Disease Control and Prevention. (2001). Revised Recommendations for HIV Screening of 
Pregnant Women. Morbidity and Mortality Weekly Report, 50 (No. RR-19), 59-100. 
13.  All infants born to HIV-infected mothers are HIV-exposed, but not all infants subsequently develop HIV . 
79 
Reducing Barriers to HIV Testing  OEI-05-01-00260  14.	  Lindegren, M.L., et al (1999). Trends in Perinatal Transmission of HIV/AIDS in the United States. JAMA, 
282, 531-538. 
15.  Centers for Disease Control and Prevention. (2000, December). HIV/AIDS Surveillance Report, 12  (No.2);3 
6. 
16.	  Compiled from: Centers for Disease Control and Prevention. (2001). Revised Recommendations for HIV 
Screening of Pregnant Women. MMWR, 50(No. RR-19), pp. 59-85. Lindgren, ML, et al. (1999). Trends in 
Perinatal Transmission of HIV/AIDS in the United States., JAMA, 282 (6), 531-538. 
17.	  Lindgren, ML, et al. (1999). Trends in Perinatal Transmission of HIV/AIDS in the United States., JAMA, 282 
(6), p. 531-538. 
18.  Centers for Disease Control and Prevention. (2000, December). HIV/AIDS Surveillance Report, 12 (2), 9. 
19.	  Lindegren, ML, Steinberg, S, & Byers, RH (2000). Epidemiology of HIV/AIDS in Children, HIV/AIDS in 
Infants, Children, and Adolescents, 47(1). 
20.	  Lindegren, ML, Steinberg, S, & Byers, RH (2000). Epidemiology of HIV/AIDS in Children, HIV/AIDS in 
Infants, Children, and Adolescents, 47(1). 
21.  Centers for Disease Control and Prevention. (2000). HIV/AIDS Surveillance Report, 12 (2), 7 
22.  Centers for Disease Control and Prevention. (2000). HIV/AIDS Surveillance Report, 12 (2), 14. 
23.	  Lindgren, ML, et al. (1999). Trends in Perinatal Transmission of HIV/AIDS in the United States., JAMA, 282 
(6), 531-538. 
24.  Ibid. 
25. 	  Health Resources Services Administration. (2001). Services for Children, Youth, Women, and Their 
Families (Title IV). (hab.hrsa.gov/care.html). 
26.	  Centers for Disease Control and Prevention. Perinatal HIV Prevention Program. 
(www.cdc.gov/hiv/projects/perinatal/grantees.htm). 
27. 	  Centers for Medicare & Medicaid Services. (2001). Fact Sheet: Medicaid and AIDS and HIV. 
(www.hcfa.gov/medicaid/obs11.htm). 
28. 	  Centers for Medicare & Medicaid Services. Reducing HIV Transmission: The Maternal HIV Consumer 
Information Project. (www.hcfa.gov/hiv/subpg6.htm). 
29.  Centers for Disease Control and Prevention. (2000, January 10). Meeting to Discuss Epidemioology 
Branch Projects for the Program to Maximally Reduce Perinatal HIV Transmission: American College of 
Obstetricians and Gynecologists. (www.cdc.gov/hiv/projects/perinatal/summarymeeting.htm). 
30.	  Royce, RA, et al. (2001). Barriers to Universal Prenatal HIV Testing in 4 US Locations in 1997, American 
Journal of Public Health, 91(5), 727-733. 
80 
Reducing Barriers to HIV Testing  OEI-05-01-00260  31.	  The Survey of Childbearing Women's primary objective was to determine the prevalence of HIV infection 
among women delivering live infants in the United States and to provide information about the 
demographics, location, and seroprevalence trends of this population over time. The survey was based on 
anonymous HIV testing of leftover blood specimens collected on filter paper for routine newborn metabolic 
screening and on existing public health programs in all areas conducting the survey. The survey was 
halted in 1995 after debate as to whether the testing should be unblinded in order to locate and treat 
newborns and their mothers determined to have HIV. 
32. 	  The entire ACOG membership database contains 42,943 records. For the purposes of our sample selection a 
subset of Fellows, Junior Fellows in Practice, Junior Fellow Residents, Junior Fellow Resident/CREOG and 
Fellow Senior status was created. Also removed from the overall database were ACOG members whose 
prior mailings were returned due to a bad postal address, those members indicating that they never wish to 
receive mailings from ACOG and those members that indicated that they did not want their name published. 
This created a sampling frame of 32,161 obstetricians and gynecologists. 
33.  Centers for Disease Control and Prevention. (2000). HIV/AIDS Surveillance Report, 12 (2), Table 1. 
34.	  Centers for Disease Control and Prevention. (2000). HIV/AIDS Surveillance Report, 12 (2), Table 1, Table 2, 
Figure 5. 
35.  Ranges do not sum precisely to 280-370 due to rounding of the individual estimates versus adding the 
estimates and then rounding the sum.  All estimates are extrapolated from the CDC data. We adjusted 
CDCs high and low estimates by +/- 10 percent and rounded up and down to the nearest 10. This 
presentation of estimated, rounded ranges of HIV-infected newborns is consistent with CDCs presentation 
of the data. See Appendix D. 
36.  Using data from medical record reviews includes an inherent assumption that the earliest HIV testing date 
for the mother found in the medical records is in fact the earliest test. However, this might not be the case. 
The mother may have had testing out-of-state, anonymously or had testing at another facility. Also, 
physicians may simply not have indicated on the records that and HIV test was recommended or 
conducted. 
37. 	  Centers for Disease Control and Prevention. (2001). Morbidity and Mortality Weekly Report, 50 
(No. RR-6), 23. 
38.  The survey question read, To how many of your pregnant patients do you offer HIV testing? and the 
response choices included none, some, most, or all. The obstetricians to whom this report refers 
to as routinely offering testing to pregnant women are those who indicated all to this question. It is 
noted, however, that some of the obstetricians who checked all also identified one or more barriers that 
have ever prevented them from offering an HIV test. We have interpreted this discrepancy by designating 
those who both checked all and indicated barriers as routinely offering testing but being subject to 
occasional exceptions to this standard practice. 
39.	  Passel, J., & Zimmerman, W. (2001). Are Immigrants Leaving California? Settlement Patterns of Immigrants 
in the Late 1990's. Washington DC: Urban Institute. 
(http://www.urban.org/pdfs/are_immigrants_leaving_ca.pdf). 
40. 	  The survey question read, Do you offer HIV testing to women in labor with unknown HIV status? and the 
response choices included never, sometimes, often and always. The obstetricians to whom this 
report refers to as routinely offering testing to women in labor with unknown status are those who 
indicated always to this question. It is noted, however, that some of the obstetricians who checked 
81 
Reducing Barriers to HIV Testing  OEI-05-01-00260  always also identified one or more barriers that have ever prevented them from offering an HIV test 
during labor. We have interpreted this discrepancy by designating those who both checked always and 
indicated barriers as routinely offering testing but being subject to occasional exceptions to this standard 
practice. 
41.	  There is still an argument for testing under these circumstances. First, the obstetrician may have time to 
suggest that the mother not breast-feed, a recommended preventive measure. Also, if the mother is HIV-
infected, the CDC recommends initiating prophylactic treatment for the infant to protect against PCP, the 
most common cause of death for perinatally-infected babies. 
42.  Stoto, M. A., Almario, D. A. & McCormick, M. C. (Eds.). (1999). Reducing the Odds: Preventing  Perinatal 
Transmission of HIV in the United States. Washington, DC: National Academy Press. 
43.	  The fourteen languages are: English, Spanish, Bosnian, Chinese, French, Haitian Creole, Hmong, 
Japanese, Khmer, Korean, Portugese, Russian, Vietnamese and Yupik. 
82 
Reducing Barriers to HIV Testing  OEI-05-01-00260  A C K N O W L E D G M E N T S  
This report was prepared under the direction of William Moran, Regional Inspector General for 
Evaluation and Inspections in Chicago and Natalie Cohen, Deputy Regional Inspector General. Other 
principal Office of Evaluation and Inspections staff who contributed include: 
Ann Maxwell, Project Leader  Joe Rutherford, Program Specialist
 
Susan Otter, Lead Analyst  Elise Stein, Director, Public Health and
 
Erin Bliss, Program Analyst  and Human Services Branch
 
Lisa Vasquez, Presidential Management Intern
 
Kristen Szewczyk, Intern
 
Technical Assistance 
Robert Gibbons, Program Analyst, San Francisco 
Deborah Harvey, Program Analyst, San Francisco 
83 
Reducing Barriers to HIV Testing  OEI-05-01-00260