Annual HIV Summary Report 2001 Edition Introduction

This report provides summary information for calendar year 2001 on the New York State Department of Health's Maternal-Pediatric HIV Prevention and Care Program. The Maternal-Pediatric HIV Prevention and Care Program is a comprehensive approach that seeks to address many of the steps in the chain of events leading to an HIV-infected child. The goal of the perinatal HIV prevention program in New York is to reduce perinatal HIV transmission to the lowest possible level and to ensure that HIV-positive mothers and their infants have access to the care they need. This includes:

  • ensuring access to prenatal care for all pregnant women;
  • establishing HIV counseling and recommended testing as a standard of prenatal care;
  • ensuring that all HIV-positive pregnant women are offered antiretroviral (ARV) therapy for their own health and to reduce the risk of perinatal HIV transmission to their infants;
  • ensuring that HIV test information is transferred in a timely way from the prenatal care site to the anticipated birth facility;
  • conducting expedited testing in the delivery setting for all women/newborns for whom prenatal HIV test results are not available; and
  • conducting HIV testing on all blood samples submitted to the Department of Health's Newborn Screening Program (NSP). Testing through the NSP serves as a quality check and provides crucial surveillance information, which is used to target and evaluate the State's interventions to reduce perinatal HIV

As a result of testing and treatment to prevent HIV transmission in New York State, rates of perinatal HIV transmission have steadily declined: from 10.6 percent in 1997 to 3.7 percent in 2000.

Methods

Maternal Seroprevalence and Maternal HIV Status

To determine the HIV prevalence among childbearing women, data from the Comprehensive Newborn HIV Testing Program (Newborn Blood Collection Form DOH 1514) is obtained on all single births and the first infants of multiple births for whom a suitable specimen was provided. The information extracted include HIV test result, maternal age, county of residence at time of delivery, the race/ethnicity of the infant, maternal HIV testing history and expedited HIV testing in the labor/delivery setting. HIV prevalence is calculated as the number of HIV positive deliveries divided by the number of HIV positive plus the number of HIV negative deliveries. The presence of HIV antibodies in a newborn's specimen indicates that the mother is HIV-infected and her HIV-exposed infant may or may not be infected with HIV.

Maternal HIV Testing History

Maternal HIV testing history is assessed at delivery and recorded on Section VI of the Maternal HIV Test History and Assessment Form (DOH 4068 - 08/00); the information is then transferred to the Newborn Blood Collection Form (DOH 1514). [Please note that the DOH 4068 form was revised in 2002. The new form (DOH 4068 - 3/02) was distributed for immediate use in September 2002].

From the DOH 4068 form, there are four categories of response for maternal HIV test history:

  • During - documented as tested during this pregnancy (A)
  • Prior - documented as tested prior to this pregnancy (B)
  • Not Previous - those women who had not previously been tested for HIV (C)
  • Unknown/Inaccessible - women whose HIV status was unknown or not documented by medical record review at the time of delivery (D)
  • A fifth category, "Data Missing," exists in this report for those instances when Maternal HIV Testing History was not recorded (boxes on the form left blank).

Expedited HIV Testing in the Labor/Delivery Setting

Expedited HIV testing is required in cases where a negative HIV test result during the mother's current pregnancy is not available and she is not known to be HIV positive. Birth facilities screen all women admitted for delivery for documentation of HIV testing during prenatal care. If a prenatal HIV test is not available, the birth facility must provide the woman with HIV counseling and, if she consents, with expedited testing. If the mother declines HIV testing for herself, the birth facility must perform expedited testing on the newborn immediately after birth under authority of the comprehensive newborn HIV program. Expedited test results must be available as soon as possible, but in no case longer than 48 hours after the specimen is obtained.

As with maternal HIV testing history, expedited testing is recorded on the Maternal HIV Test History and Assessment Form (DOH 4068; boxes E, F, G); the information is then transferred to the Newborn Blood Collection Form (DOH 1514). In this report, expedited HIV testing history is summarized as follows:

  • Mother Tested - mother consented and received expedited HIV testing
  • Infant Tested - expedited testing performed on the newborn (consent not required)
  • Not Necessary - expedited testing was not done because mother tested HIV-negative during this pregnancy or is known to be HIV-positive
  • Data Missing - signifies that no information was recorded on the form.

Cautions and Caveats

  • Data are reported by geographic area based on mother's county of residence except for the tables "Hospitals by Location," where the birth facilities are reported in the county in which they are located.
  • Data on Maternal HIV Testing History do not necessarily reflect the prenatal HIV counseling and testing success of the birth facility as women often receive prenatal care at other sites.
  • In certain instances the number of individuals with specific characteristics may be too small to maintain the confidentiality of those tested if it were to be reported here. In these instances, groups or categories may be combined into other categories, often termed "other/unknown", or the category may not be listed. An example of this is that at least 20 individuals must have provided suitable specimens in order for a facility to be listed in this report. Also, please note that not all women giving birth are in the data. Sometimes a suitable specimen was not initially available; the data presented here does not include the repeat specimens that may have been received at a later time.
  • In several instances where the mother was found to be HIV positive by newborn screening, hospitals reported expedited testing, but the failure to assure that the expedited testing specimens were handled appropriately resulted in delayed return of test results (48 hours from specimen collection). Consequently, HIV-exposure in some newborns was undetected and untreated, even though an "expedited" test specimen was collected.

Results - 2001 Deliveries

HIV Prevalence - Summary

Data are available from newborn heel-stick specimens tested by the Department of Health Wadsworth Laboratory for 246,322 women giving birth from January 1, 2001 to December 31, 2001. Of these, 758 women (0.31 percent) tested positive for HIV antibodies via their newborns' tests.

HIV seroprevalence in childbearing women varied by geographic area, age and racial/ethnic group. The highest prevalence was detected among childbearing women in New York City, with 0.53 percent or one in 189 women giving birth having an abnormal HIV antibody test result. Women giving birth from elsewhere in the state had a prevalence of 0.12 percent, approximately one in 833 women giving birth having a positive HIV test result.

Statewide, HIV seroprevalence increased with increasing maternal age. Seroprevalence ranged from 0.22 percent for those 10 to 19 and 20 to 24 years of age to 0.31 percent for those 25 to 29, 0.33 for those 30 to 34 years of age, and 0.40 percent for those 35 years of age or older.

HIV seroprevalence also differed by race or ethnicity. While representing only 37 percent of all newborns, Black and Hispanic infants accounted for 85 percent of those testing positive for maternal HIV antibodies. The HIV prevalence by race or ethnicity was 1.08 percent (1 in 92) for Blacks, 0.35 percent (1 in 286) for Hispanics, and 0.06 percent (1 in 1667) for Whites. HIV prevalence has continued to decrease in Blacks and Hispanics.

Maternal HIV Test History - Summary

Maternal HIV test history varied by geographic area and racial/ethnic group. The percent of women tested for HIV during pregnancy in this reporting period was lower for women residing in New York City (89.79 percent) than for those residing elsewhere in the state (95.58 percent).

The percent of women who were tested for HIV during pregnancy varied little by maternal age. The testing rate during pregnancy was 90.2 percent for women 10 to 19 years of age, 91.7 percent for women 20 to 24 years of age, 93.1 percent for women 25 to 29 years of age, 93.96 percent for women 30 to 34 years of age, and 93.07 percent for women 35 years of age or older.

In those for whom race/ethnicity data are available, HIV testing during pregnancy is as follows: 91.36 percent in Hispanics, 87.35 percent in Blacks, and 95.20 percent in Whites.

Since data collection began, the percent of women receiving prenatal HIV testing has steadily increased. In 1997, less than 50 percent of women who gave birth received HIV testing during the pregnancy. By December 2001, more than 93 percent of the women giving birth in New York accepted HIV testing during the pregnancy.

Data on maternal HIV testing history are also available from managed care programs. In the most recent data available (2001), 91 percent of the women enrolled in commercial managed care programs and 88 percent of the women enrolled in Medicaid managed care programs in New York State received prenatal HIV testing. In New York City, the overall rate of testing was 87 percent; 91.5 percent of the women enrolled in the rest of the state were tested.

Expedited Testing - Summary

In 2001, 11,184 mothers without prenatal testing consented to receive expedited HIV testing. Another 2,519 infants whose mothers had no indication of prenatal HIV testing received expedited testing. Neither prenatal nor expedited testing was documented in 2,222 deliveries (less than 1 percent of deliveries in 2001).

During 2001, the Department investigated nine incidents at five hospitals (four in NYC), where failure to perform expedited HIV testing in the labor and delivery setting resulted in undetected and untreated HIV exposure to ten newborns.

In these cases, nine HIV-positive mothers were reported as receiving expedited testing, but because specimens obtained in the labor, delivery or newborn setting were mishandled, expedited HIV test results were not obtained within 48 hours of specimen collection. Thus, for ten newborns (one set of twins), HIV exposure remained undetected and untreated in the labor, delivery, and newborn period. Identified procedural lapses included: the mislabeling and mishandling of laboratory specimens, failing to arrange for expedited testing with the reference laboratory, and failing to have a system in place to track the results of expedited HIV testing.

These exposures were subsequently identified through HIV testing conducted as part of the Department's Newborn Screening Program, too late for the administration of therapies to reduce the risk of perinatal HIV transmission.

Monitoring Strategies and Interventions

This section presents the Department's oversight and intervention strategies for monitoring compliance with the prenatal HIV counseling requirement, as well as the HIV testing regulations affecting care in the labor, delivery and newborn care settings (the Expedited HIV Testing and Newborn HIV Screening requirements). Consumer and provider concerns received by the Department throughout the year are also summarized.

Managing Provider and Consumer Questions and Concerns

Since the Expedited HIV Testing program was first proposed in December 1998, the Department continues to receive a few calls from consumers and providers who seek clarification of the prenatal HIV counseling and expedited HIV testing requirements. Most of these callers inquire about whether prenatal HIV testing is mandatory in New York State. Some callers want details about the prenatal HIV counseling requirement. AIDS Institute staff address these inquiries. The Department routinely provides copies of DOHM AI 99-01 and other materials related to the Maternal-Pediatric HIV Prevention and Care Program. In a few instances, based upon information provided by consumers, the Department has contacted prenatal providers to discuss their policies and practices, answer questions about the Expedited HIV Testing requirement, and offer technical assistance.

In July 1999, the Department published a statewide hotline number to manage consumer questions, concerns or complaints about HIV counseling and testing in the perinatal period (1-877-249-5115). The Department has published this number extensively in patient educational materials. Fewer than 10 calls are received on this line monthly. To date, no call has resulted in the filing of a complaint or the initiation of an investigation of the care rendered by a provider.

Addressing Undetected/Untreated HIV Exposures to Newborns

During 2001 there were several instances where the mother was first found to be HIV positive by newborn screening. The Department investigated nine incidents at five hospitals (four in NYC) where failures to perform expedited HIV testing in the labor and delivery setting resulted in undetected and untreated HIV exposures to ten newborns (one set of twins). These exposures were subsequently identified through HIV testing conducted as part of the Department's Newborn Screening Program, too late for the administration of therapies to reduce the risk of perinatal HIV transmission.

Four of the hospitals involved were issued Statements of Deficiency for failing to comply with Department regulations. On-site investigations by the Department determined that, in these cases, the failure to detect and treat HIV exposures to newborns was most often attributed to the hospitals' failure to assure that specimens obtained in the labor, delivery or newborn setting were handled appropriately so that HIV test results were available as soon as possible, or within 48 hours. Mislabeling and mishandling laboratory specimens, failing to arrange for expedited testing with the reference laboratory, and failing to have a system in place to track the results of expedited HIV testing, were typical of the deficiencies identified at the affected facilities.

Each failure to conduct expedited testing where indicated which results in HIV exposure will result in the issuance of a Statement of Deficiency by the Department. Because of the failures encountered in 2001, the Department wrote to all birth facilities, urging them to revisit their perinatal HIV transmission prevention strategies and ensure that any procedural gaps are identified, addressed and monitored through the facility's QA/CQI program.

Program Monitoring and Intervention Strategies

Download a Printable version of Program Monitoring & Intervention Strategies (PDF, 103 KB, 2pgs)

Regulatory Requirement Monitoring Intervention
Prenatal HIV Counseling Annual IPRO Review IPRO Review Results
Regulated parties must provide prenatal HIV counseling with a clinical recommendation for HIV testing. Select prenatal providers are annually reviewed by IPRO for the indicator "HIV Counseling and Testing: Pregnant Women with Unknown HIV Status". The result of this review, along with Department's observations about the provider's performance, and plans for intervention, if any, are reported to representatives of the facility's administrative and medical staff.
Note:

In 2001, IPRO reviews conducted at 100 prenatal care sites around the state, revealed an average pre-test counseling rate of 98 percent and an average prenatal HIV testing rate of 96 percent.		 When a facility fails to demonstrate compliance with the Prenatal HIV Counseling requirement, Department intervention includes:
  • requesting, reviewing and providing feedback on "rapid quality improvement plan" submitted by facility;
  • if requested, reviewing relevant policies, procedures, quality plans and practices;
  • conducting on-site technical assistance site visits;
  • requesting a written plan of correction, and then, if the facility fails to achieve compliance,
  • issuing a Statement of Deficiency (SOD). Please note: a SOD is only issued when attempts at technical assistance have failed to bring about compliance and a site visit by the AIDS Institute confirms non-compliance.
Expedited HIV Testing Newborn Specimen Data Data Review
Since August 1999, birth facilities must screen all women admitted for delivery for documented negative HIV test results from prenatal care, or for documentation that the woman is known to be HIV-positive. Women who do not have an HIV test result from the current pregnancy at the time of admission for delivery are to be counseled and offered an expedited HIV test. If the mother declines, or if there is no time to perform testing on the mother, the infant is tested immediately after birth, without consent. Preliminary HIV test results must be returned as soon as possible, but no later than 48 hours after the specimen is collected. All preliminary positive HIV test results must be reported to the Department using form DOH-4159. Maternal-Newborn test history data are submitted by all birth facilities to the Wadsworth Center on the Newborn Screening Blood Collection Form (DOH-1514). The Wadsworth Center forwards this information to the AIDS Institute weekly for review. On a regular basis, the AIDS Institute receives, reviews and reports aggregate data to all birth facilities. Of special concern in reviewing data are:
  • failures to identify maternal HIV infection, resulting in a missed opportunity to provide therapy to reduce the risk of HIV transmission to the infant ;
  • instances when expedited testing was indicated but not done;
  • birth facilities that perform a disproportionate number of expedited tests on infants as compared to mothers.
 Data are collected from the Newborn Blood Collection Form (DOH 1514) which is submitted by the birth facility or birth attendant. Weekly reviews are conducted by the AIDS Institute and periodic reports are forwarded to birth facilities. When non-compliance or other problems in implementing the expedited testing requirement are identified, Department interventions may include:
  • providing technical assistance by telephone;
  • requesting, reviewing, and offering feedback on rapid quality improvement plans submitted by facility.
  • if requested, reviewing and providing feedback on policies and procedures;
  • scheduling an on site technical assistance visit.

Failure to identify an HIV positive birth or continued non-compliance will result in:

  • requesting a written plan of correction, and/or
  • issuing a Statement of Deficiency (SOD).

Please note: an SOD will be issued when a site visit by the AIDS Institute confirms a failure to identify an HIV positive birth or when attempts at technical assistance have failed to bring about compliance.

Contact Information

For information regarding:

Program, Policy or Monitoring

Sheila Hackel or Ellen Kowalski
AIDS Institute
New York State Department of Health
P.O. Box 2094
Empire State Plaza Station
Albany, NY 12220-0094
Phone: 518-473-8427
Email: MPRU@health.state.ny.us

Data and Data Tables

Wendy Pulver
Bureau of HIV/AIDS Epidemiology
New York State Department of Health
Empire State Plaza
Corning Tower
Albany, NY 12237
Phone: 518-474-4284
Email: MPRU@health.state.ny.us