OFFICE OF INSPECTOR GENERAL
 

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 OIG’s 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. 

EXECUTIVE SUMMARY 

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. 

Reducing Barriers to HIV Testing i 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 patient’s late entry into prenatal 

care and the physician’s 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 newborn’s physician. Despite this fact, one-fifth of obstetricians report always 

recommending HIV testing for the newborn to the newborn’s physician in cases where the 

mother’s 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. 

Reducing Barriers to HIV Testing ii 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 CDC’s 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. 

Reducing Barriers to HIV Testing iii 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 CDC’s ability to “facilitate” desirable actions and 

outcomes. By emphasizing CDC’s 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. 

Reducing Barriers to HIV Testing iv OEI-05-01-00260 
TABLE OF CONTENTS 

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
 

Reducing Barriers to HIV Testing v OEI-05-01-00260 
INTRODUCTION 

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 twothirds 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 

Reducing Barriers to HIV Testing 1 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 IOM’s 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 IOM’s 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 

mother’s 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 

Reducing Barriers to HIV Testing 2 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 onsite 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 child’s 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 mother’s HIV status is 

unknown. 

Reducing Barriers to HIV Testing 3 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 

Reducing Barriers to HIV Testing 4 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 CDC’s 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 

Reducing Barriers to HIV Testing 5 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 HIVinfected 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 mother’s 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 

Reducing Barriers to HIV Testing 6 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 

Mother’s 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 

Reducing Barriers to HIV Testing 7 OEI-05-01-00260 
born in the United States for whom the mother’s 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 patient’s 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 woman’s 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 Children’s 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. 

Reducing Barriers to HIV Testing 8 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 nonrespondents. 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 

Prevalence 

Strata 

Low 

Prevalence 

Strata 

Totals 

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 

Reducing Barriers to HIV Testing 9 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 

Reducing Barriers to HIV Testing 10 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. 

Reducing Barriers to HIV Testing 11 OEI-05-01-00260 
FINDINGS 

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 mother’s 

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 mother’s time of diagnosis. 

Reducing Barriers to HIV Testing 12 OEI-05-01-00260 
Table 2
 

Time of Mother’s HIV Diagnosis 
 

for the Estimated 280-370 HIV-Infected Infants Born in 2000
 

Estimated, Rounded 

Range of HIVinfected 

Estimated Percent 

of HIV-infected 

Newborns 

Infants Whose Mother was 

Diagnosed Prior to Birth 

170-230 62% 

Infants Whose Mother was 

Diagnosed During Delivery 

20-40 9% 

Infants Whose Mother was 

Diagnosed After Birth 

80-110 29% 

Rounded Totals35 280-370 100% 

Newborns 

Source: Centers for Disease Control and Prevention 

Assuming the time of the mother’s 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 mother’s status. 

As with any set of assumptions used to provide estimates, there are limitations. Most 

importantly, while it is likely and logical that the mother’s 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 woman’s 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 HIVinfected 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, 

Reducing Barriers to HIV Testing 13 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 woman’s 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 

Reducing Barriers to HIV Testing 14 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 

patient’s late entry into prenatal care and an obstetrician’s 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 

is HIV-positive 

1 % 

Concern about treating an HIV-positive patient 1 % 

Source: OIG national survey of obstetricians 

Reducing Barriers to HIV Testing 15 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 State’s 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 patient’s late entry into prenatal care or lack of any prenatal care can prevent 

testing 

Like a language barrier, a patient’s 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 patient’s 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. FortyReducing Barriers to HIV Testing 16 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 woman’s 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 

physician’s routine practice, an obstetrician’s 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 

Reducing Barriers to HIV Testing 17 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 obstetrician’s 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. 

Reducing Barriers to HIV Testing 18 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 doesn’t 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 

Reducing Barriers to HIV Testing 19 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 obstetrician’s hospital, also impacted testing 

practices during labor. Logistic regression analysis identified that the receipt of educational 

information or training on perinatal HIV from one’s hospital or from an educational course 

predicted that an obstetrician routinely offered testing during labor. Educational information 

from the hospital also decreased an obstetrician’s 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. 

Reducing Barriers to HIV Testing 20 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 

treatment 

1 % 

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-bycase 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 

Reducing Barriers to HIV Testing 21 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 woman’s 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 women’s 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 onefifth 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 

Reducing Barriers to HIV Testing 22 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 newborn’s 

physician. In fact, 90 percent indicated that they never perform HIV testing on newborns when 

the mother’s 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 newborn’s physician. 

Moreover, States have generally not assigned obstetricians the responsibility to test newborns 

when the mother’s 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 newborn’s physician has been 

problematic. Pediatricians whom we interviewed also noted the “fragility of the paper trail” that 

documents the mother’s testing history. State confidentiality laws regarding the disclosure of 

HIV information may explain some of this difficulty. One pediatrician explained that when the 

mother’s HIV status is not documented in the newborn’s 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 mother’s refusal of the test, the newborn’s pediatrician would likely be unaware 

that the mother’s status remained unknown. 

Reducing Barriers to HIV Testing 23 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 mother’s 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 newborn’s 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 State’s 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 

Reducing Barriers to HIV Testing 24 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 State’s 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 State’s response to this issue also presents a challenge. Sometimes the quality 

of the collaboration is questionable. For example, one State’s 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 

Reducing Barriers to HIV Testing 25 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 ongoing 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 

don’t 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.” 

Reducing Barriers to HIV Testing 26 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 

Reducing Barriers to HIV Testing 27 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, 

Reducing Barriers to HIV Testing 28 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 CDC’s 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 mother’s 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 

Reducing Barriers to HIV Testing 29 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 State’s 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 

Reducing Barriers to HIV Testing 30 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 Service’s “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 CDC’s National Prevention Information Network (NPIN), could provide the repository 

for these materials. The CDC’s NPIN offers general HIV information in 

Reducing Barriers to HIV Testing 31 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. 

Reducing Barriers to HIV Testing 32 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 mother’s testing 

status to the newborn’s physician. A lack of documentation of the mother’s HIV status in the 

newborn’s 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 pediatrician’s 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 mother’s HIV status to the 

newborn’s physician. Half of these States’ statutes directly reference the ability to disclose a 

mother’s 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 hospital’s 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. 

Reducing Barriers to HIV Testing 33 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 

Reducing Barriers to HIV Testing 34 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. 

Reducing Barriers to HIV Testing 35 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. 

Reducing Barriers to HIV Testing 36 OEI-05-01-00260 
AGENCY COMMENTS 

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 CDC’s ability to “facilitate” desirable actions and 

outcomes. By emphasizing CDC’s 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 

Reducing Barriers to HIV Testing 37 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. 

Reducing Barriers to HIV Testing 38 OEI-05-01-00260 














Table 1. Estimate of the number of HIV-positive infants, by mother’s 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+ 

women (2) 

(Low 1.11) 

80,293 

(High 1.19) 

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 

at birth 

after birth (8) 

(.89) 

(.05) 

(.06) 

5,407 

304 

364 

5,716 

321 

385 

(Transmission rates (tm)) and number of HIV+ 

infants whose mothers were diagnosed: 

before birth 

60% combination ARV 

40% ZDV 076 

at birth 

after birth (9) 

Total 

tm 

rate 

(.02) 

(.06) 

(.10) 

(.25) 

65 

130 

30 

91 

316 

69 

137 

32 

96 

334 

Scenario I: Estimated HIV+ Infants (10) 280-370 

Estimated HIV+ Infants whose mothers were 

diagnosed after birth (9) 80 110 

Reducing Barriers to HIV Testing 53 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) 

at birth 

(.95) 

(.05) 

5,771 

304 

6,101 

321 

(Transmission rates) and 

number of HIV+ 

mothers were diagnosed: 

before birth: 60% combination ARV 

40% ZDV 076 

at birth 

Total 

(.02) 

(.06) 

(.10) 

69 

138 

30 

237 

73 

146 

32 

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 

were diagnosed before birth (.89+.05+.06) 

(1.0) 6, 075 6,422 

(Transmission rates) and 

number of HIV+ 

diagnosed: 

before birth: 60% combination ARV 

40% ZDV 076 

Total 

(.02) 

(.06) 

73 

146 

219 

77 

154 

231 

infants whose 

infants whose mothers were 

Scenario III: Estimated HIV+ infants (12) 190 260 

Reducing Barriers to HIV Testing 54 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. 

Reducing Barriers to HIV Testing 55 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 child’s 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 child’s 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 mother’s 

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 OIG’s request, we constructed two hypothetical scenarios. First, assuming that all mothers 

diagnosed after birth were diagnosed before birth and received treatment prenatally, the estimated 

Reducing Barriers to HIV Testing 56 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 HIVpositive 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. 

Reducing Barriers to HIV Testing 57 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 

Treated 

Transmission Low estimate of 

births 

High estimate of 

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
 

Reducing Barriers to HIV Testing 58 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?
 

State Zip Code (For the rest of this survey, please ONLY consider your practice in this 

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 

Patient signs consent form to cover all 

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 

against testing 

Test only upon 

patient request 

Offer 

testing 

Recommend 

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?
 

Reducing Barriers to HIV Testing 59 OEI-05-01-00260 
Document refusal in the patient’s 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 State’s laws or policies regarding HIV testing of pregnant women? 

No, I’m not familiar Yes, I’m 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. 

10.	 Please consider any instances in which you have NOT offered HIV testing to a pregnant patient. Has 

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 ý

Consent process too time-consuming No Yes ý

Patient is at low risk No Yes ý

Concern about offending patient No Yes ý

Late entry into prenatal care No Yes ý

Inadequate reimbursement No Yes ý

Concern about informing a pregnant woman she’s HIV-positive No Yes ý

Concern about treating an HIV-positive patient No Yes ý

Language barrier No Yes ý

It is not the standard of care in my hospital/clinic No Yes ý

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 

Helpful 

Somewhat 

Helpful 

Very 

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 

Reducing Barriers to HIV Testing 60 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 ý

Rapid or expedited HIV tests not available No Yes ý

Too much emotional stress for patient No Yes ý

Insufficient time to counsel during labor No Yes ý

Too difficult to obtain consent during labor No Yes ý

Too late for preventive treatment No Yes ý

Hospital did not have antiretroviral drugs available for treatment No Yes ý

HIV TESTING OF NEWBORNS 

14. What are your HIV testing practice(s) for newborns whose mother’s HIV status is unknown? 

Newborn testing is handled solely by newborn’s physician Never Sometimes Often Always 

I recommend testing to the newborn’s 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) _______________________________________________________________________________________ 

15.	 Please consider newborns whose mother’s HIV status is unknown. Has each of the following EVER 

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 newborn’s physician No Yes ý

OB not responsible for newborn testing No Yes ý

Lack of communication with newborn’s physician No Yes ý

Testing violates mother’s privacy No Yes ý

Parent(s) refused consent No Yes ý

Patient(s) not likely to return for follow up No Yes ý

16. Are you familiar with your State’s laws or policies regarding HIV testing of newborns? 

No, I’m not familiar Yes, I’m familiar My State has no such laws or policies 

Reducing Barriers to HIV Testing 61 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. Urban Suburban Rural Military 

b. Private, community Private, hospital Public, community Public, hospital 

c. Female Male 

d. Years 

Practice location: 

Practice setting: 

Gender: 

Years since completion of residency: 

Reducing Barriers to HIV Testing 62 OEI-05-01-00260 
APPENDIX F 

Confidence Intervals for Selected Statistics
 

Statistic 

Point 

Estimate n 

90 Percent 

Confidence 

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 

labor 

48.0% 464 44.2% to 51.8% 

Never offer HIV testing to women of unknown status during 

labor 

17.0% 464 14.2% to 19.9% 

Newborn testing is the responsibility of the newborn’s 

physician 

93.4% 435 91.4% to 95.3% 

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% 

Reducing Barriers to HIV Testing 63 OEI-05-01-00260 
Statistic 

Point 

Estimate n 

90 Percent 

Confidence 

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 

hospital 

28.9% 463 25.4% to 32.3% 

Received educational information or training from their 

State or local health department 

53.0% 462 49.2% to 56.8% 

Office/clinic has a written policy on HIV testing of 

pregnant women 

45.9% 470 42.2% to 49.7% 

Obstetrician is familiar with State laws or policies on HIV 

testing of pregnant women 

61.5% 471 58.0% to 65.1% 

Reducing Barriers to HIV Testing 64 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 nonsignificant 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 

dept 

0.57 0.04 

Practice setting is in a hospital 0.59 0.05 

Reducing Barriers to HIV Testing 65 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. 

Independent Variable 

Odds 

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 

health dept 

1.93 0.09 

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. 

Independent Variable 

Odds 

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 

Reducing Barriers to HIV Testing 66 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. 

Independent Variable 

Odds 

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 

care 

2.84 0.01 

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 

hospital) 

0.67 0.08 

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 

Reducing Barriers to HIV Testing 67 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. 

Independent Variable 

Odds 

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 

Reducing Barriers to HIV Testing 68 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 nonrespondents. 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 nonrespondents. 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, nonrespondents 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. 

Reducing Barriers to HIV Testing 69 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 

labor 

0.390 

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 

barrier 

0.232 

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 NonRespondents 

ob reported language barrier during prenatal care 0.007 15% 3% 

ob is female 0.006 48% 23% 

Reducing Barriers to HIV Testing 70 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 . 

Reducing Barriers to HIV Testing 79 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. 

Reducing Barriers to HIV Testing 80 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 

CDC’s 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 CDC’s 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 

Reducing Barriers to HIV Testing 81 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 HIVinfected, 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. 

Reducing Barriers to HIV Testing 82 OEI-05-01-00260 
ACKNOWLEDGMENTS 

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 

Reducing Barriers to HIV Testing 83 OEI-05-01-00260