Annual Summary Report 1999 Edition Introduction

This report provides summary information on the New York State Department of Health Maternal-Pediatric HIV Prevention and Care Program for calendar year 1999. The report is divided into four specific sections relating to the perinatal HIV prevention efforts. The first three sections represent data collected throughout the year; the fourth section outlines the Department's plan to monitor compliance with all aspects of the Maternal-Pediatric HIV Prevention and Care Program from the provision of HIV counseling in prenatal care settings to HIV testing in the labor, delivery and newborn care settings. Providers are strongly encouraged to review this important section of the annual summary. The Department's monitoring strategy changed when Expedited HIV Testing in birth facilities began in August 1999.

The Maternal-Pediatric HIV Prevention and Care Program is a major component of New York State's strategy for reducing perinatal HIV transmission and ensuring that HIV-positive mothers and their infants have access to the care they need. This strategy 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;
  • requiring expedited testing in the delivery setting for all women/newborns for whom prenatal HIV test results are not available, and
  • continuing to conduct HIV testing as a quality check on all newborn blood specimens submitted to the Department's Newborn Screening Program (NSP).

A. An important initial prevention step in this strategy is to ensure that all pregnant women are enrolled in prenatal care and ideally, have received preconception care. Significant program resources, including funding from the Centers for Disease Control and Prevention (CDC) for outreach to high risk women, are directed to this purpose in New York State. In four targeted high seroprevalence areas, coalitions have been formed among outreach, prenatal care and other service agencies in a renewed effort to reach high-risk women and bring them into a comprehensive and user-friendly system of care. Health care providers should redouble their efforts to ensure that all pregnant women enroll in prenatal care starting in the first trimester.

B. The second step in preventing perinatal transmission is to ensure that all women in prenatal care receive HIV counseling and testing according to New York State regulations and standards of care.

  • In New York State, regulations adopted in 1996 [10 NYCRR sections 98.2(c), 405.21(c), 751(a)] require all regulated prenatal care providers (hospitals, clinics, HMO providers) to provide all prenatal care patients with HIV counseling including HIV testing presented as a clinical recommendation.
  • Such counseling and recommended testing is the standard of medical care in New York State, even for physicians not practicing in regulated settings.

C. For women who test HIV-positive or are known to be HIV-positive during pregnancy, the State has developed a network of specialty providers with expertise in caring for HIV-positive pregnant women. These providers: a) ensure that each HIV-positive pregnant woman has a full evaluation for antiretroviral therapy depending on her own health status; b) prescribe antiretroviral (ARV) as indicated for the management of the mother's HIV disease and for the prevention of perinatal transmission, and c) make referrals for housing, adherence counseling and other supportive services that women may need to support their ability to remain in care. New York State Medicaid and the State's AIDS Drug Assistance Program (ADAP) provide reimbursement for pharmaceuticals for eligible women in need. Thus, all HIV-positive women should have access to prophylaxis for preventing perinatal transmission. The Department of Health, with the help of a panel of expert clinicians, publishes detailed clinical treatment guidelines for antiretroviral therapy and prevention of perinatal transmission. The Department also funds a network of clinical education providers across the State to train clinicians caring for HIV positive patients.

D. Universal newborn testing as a "safety net" has been in effect since February 1997. Public Health Law (PHL) 2500-f, signed into law by Governor Pataki in 1996, created an exemption for newborn HIV testing to the informed consent requirements in the HIV Confidentiality Law, Public Health Law (PHL) Article 27-F. The Law also directed the Commissioner to develop a comprehensive program for the testing of newborns for HIV. An overview of newborn HIV screening in New York State follows.

  1. From 1987-196, a survey of childbearing women was conducted by the Department's Newborn Screening Program. In this study, blinded HIV testing was performed on all newborn filter paper specimens submitted for metabolic screening. From May 1996 through January 1997, the study was unblinded, and mothers could consent to receive a copy of their newborn's HIV test result. Over 90 percent of mothers consented to receive their newborn's HIV test result through the consented testing program.
  2. Beginning on February 1, 1997, and continuing through July 31, 1999, the Department's Newborn Screening Program (NSP) returned all HIV test results obtained through newborn screening to the pediatrician of record. It was then the pediatrician's responsibility to report the newborn's HIV test result to the mother. Universal newborn HIV testing conducted through the NSP resulted in the identification of all HIV-exposed births; however, HIV test results were often not available until two weeks after birth, which is too late to initiate therapy to prevent perinatal transmission. Newborn testing has allowed birth facility and Department of Health staff to ensure that over 98 percent of HIV-positive mothers are aware of their HIV status and that they and their newborns are referred for HIV care.
  3. The third phase of the newborn HIV testing program began on August 1, 1999, with regulatory amendments to Subpart 69-1. These amendments require expedited HIV testing in the birth settings 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. This addition to the Newborn Testing Program was undertaken because of evidence that perinatal HIV transmission may be reduced by initiating ARV therapy during labor or soon after delivery (within 24 hours), even if ARV was not taken during prenatal care (NEJM 1998; 339; 1409-1414). Birth facilities now screen all women admitted for delivery for documentation of HIV testing during prenatal care. If a prenatal HIV test result 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 her newborn immediately after birth under the authority of the comprehensive newborn HIV program. Expedited tests must be available as soon as possible, but in no case longer than 48 hours after the specimen is obtained.

    A significant benefit of the expedited testing program has been a dramatic increase in prenatal acceptance of HIV testing. Birth facilities are working closely with their prenatal care provider networks to ensure that HIV counseling and testing is done during prenatal care and that the test results are transferred to the birth facility.

Methods and Summary of Results

This report is divided into five sections. The first section provides information on HIV seroprevalence for the entire year of 1999. The second section provides information on maternal HIV testing for the period of January 1, 1999 through July 31, 1999. The third section includes the same information for the period of August 1, 1999 (when expedited testing went into effect) through December 31, 1999 as well as additional information related to Expedited Testing. Section four of this report provides information on the Department's plan to monitor compliance with all aspects of the Maternal-Pediatric HIV Prevention and Care Program. A summary of consumer questions, concerns or complaints about prenatal HIV counseling and testing and/or expedited HIV testing, as well as any action taken by the Department in response to these calls is also presented.

A. Section 1
Maternal HIV Status (Women delivering 01/99 through 12/99)

To determine the HIV prevalence among childbearing women, data from the Comprehensive Newborn HIV Testing Program were obtained on all single births and the first infants of multiple births for whom a suitable specimen was provided. The information collected included maternal age, maternal county of residence at delivery, maternal HIV testing history and the race/ethnicity of the infant.

Data are available from newborn heel-stick specimens tested by the Department of Health's Wadsworth Laboratory for 248,432 women giving birth from January 1, 1999 to December 31, 1999. Of these, 951 women (0.38 percent) tested positive for HIV antibodies via their newborn's tests. The presence of 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. In 1998, approximately 18 percent of infants in New York State who were born to HIV-infected mothers who received no antiretroviral prophylaxis were found to be HIV infected.

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 0.67 percent or one in 149 women giving birth having a positive HIV antibody test result. Women giving birth elsewhere in the state had a prevalence of 0.14 percent, approximately one in 714 women 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 years of age to 0.34 percent for those 20 to 24 years of age, 0.36 for those 25 to 29 years of age, 0.42 for those 30 to 24 years of age, and 0.48 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 84 percent of those testing positive for maternal HIV antibodies. The maternal HIV prevalence by race or ethnicity was 1.26 percent (1 in 79) for Blacks, 0.49 percent (1 in 204) for Hispanics, and 0.07 percent (1 in 1,429) for Whites. This represented a small decrease from 1998 in HIV prevalence for both Blacks (1.32 percent in 1998) and Hispanics (0.55 percent in 1998) and a small increase for Whites (0.06 percent in 1998).

B. Section II
Maternal Testing History - Pre-Expedited Testing Requirement (1/99 through 7/99)

During the period of January 1, 1999 through July 31, 1999, prior to the initiation of the expedited HIV testing program, 144,723 women gave birth. During this period, Maternal HIV Testing History varied by geographic area, age and racial or ethnic group. The percent of women tested for HIV during pregnancy in this reporting period was higher for women residing in New York City at 68 percent than for those residing elsewhere in the state at 51 percent (Figure A).

The percent of women who were tested for HIV during pregnancy decreased with increasing age. The testing rate was 80 percent for women 10 to 19 years of age, 70 percent for women 20 to 24 years of age, 59 percent for women 25 to 29 years of age, 52 percent for women 30 to 34 years of age, and 48 percent for women 35 years of age or older (Figure B).

In infants for whom data are available, the race/ethnicity of their mothers who were tested for HIV during pregnancy is as follows: 82 percent in Hispanics, 74 percent in Blacks, and 45 percent in Whites (Figure C). When compared to 1998, the percent of women tested for HIV during pregnancy rose 5 percent in both Blacks and Hispanics and 4 percent in Whites.

C. Section III
Maternal Testing History - Post-Expedited Testing Requirement (8/99 through 12/99)

Between August 1, 1999, when Expedited HIV Testing was implemented, and December 31, 1999, a total of 103,709 women gave birth. While a greater percent of women received prenatal testing, this still varied by geographic area, age and racial-ethnic group within this period. Prenatal HIV testing was greater during this period than the earlier period in 1999 with the statewide average increasing to 78 percent from 59 percent earlier in the year.

From August through December 1999, the percent of women who were tested for HIV during pregnancy again decreased with increasing age (Figure B). The prenatal testing rate was 84 percent for women 10 to 19 years of age, 81 percent for women 20 to 24 years of age, 78 percent for women 25 to 29 years of age, 77 percent for women 30 to 34 years of age, and 75 percent for women 35 years of age or older.

Again, prenatal HIV testing varied by race/ethnicity. 83 percent of Hispanics, 78 percent of Blacks, and 76 percent of Whites received HIV testing during the pregnancy (Figure C). Prenatal HIV testing increased compared to earlier in 1999 and other years, for all races and ethnic groups. Changes in prenatal testing patterns were also seen by region of residence. While in previous time periods a greater percentage of NYC residents were tested, during that latter half of 1999 a greater percentage of women residing outside of NYC had received prenatal HIV testing (Figure A).

Maternal HIV testing history data area also available from managed care programs. In 1999, 57 percent of the women enrolled in managed care programs in New York State received prenatal HIV testing. In New York City, the rate of testing was 57 percent; 58 percent of the women enrolled in the rest of the state were tested.

D. Expedited Testing Results (Women delivering 8/99 through 12/99)

For the period of August 1, 1999 to December 31, 1999, 18,155 mothers consented to expedited testing for themselves and at least 5,184 infants received expedited testing.

Of the 15,873 women known to have NOT been tested for HIV during pregnancy or who had been tested prior to this pregnancy, 53 percent underwent consented expedited HIV testing. In addition, 17 percent of these women's infants also had expedited testing. A total of 73 percent of women whose HIV testing history was unknown or missing either underwent consented expedited HIV testing or their infant had expedited testing.

Figure A

Figure A

Prenatal HIV Testing History by Period and Region

Figure B

Figure B

Prenatal HIV Testing History by Period and Age

Figure C

Figure C

Prenatal HIV Testing History by Period and Race/Ethnicity

Directions for Report Table Interpretation

A. Report Structure

The Department's monitoring and intervention strategies changed when Expedited HIV Testing began in August 1999. Thus, this report must be divided into four specific section. The first three sections represent data collected throughout the year; the fourth section outlines the Department's plan to monitor compliance with all aspects of the Maternal-Pediatric HIV Prevention and Care Program from the provision of HIV counseling in prenatal care to HIV testing in the labor, delivery and newborn care settings. Providers are strongly encouraged to review this important section of the annual summary.

Section I: Full calendar year (1/99 through 12/99) Tables are provided for Maternal HIV Test History Status.

Section II: The first set of partial year (1/99 through 7/99) Tables offer Maternal HIV Testing History before the implementation of Expedited Testing. The categories for Maternal HIV Testing History (During, Prior, Not Previous, Unknown and Missing) are comparable to those included in both the 1997 and 1998 editions of this report, in that history was assessed at delivery by chart review OR by maternal response.

Section III: This section presents data from the second part of the year (8/99 through 12/99). Tables in this section offer Maternal HIV Testing History data gathered after the implementation of Expedited Testing. The maternal testing history categories of During, Prior, Not Previous, Unknown and Missing now have a different meaning. Current regulations require that Maternal HIV Test History be documented by the birth facility and can no longer include information obtained by maternal self-report. These tables also contain the information on women and infants who had expedited testing at delivery or immediately after the infant's birth.

Section IV: 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.

B. Maternal HIV Testing History

Maternal HIV Testing History is assessed at delivery and recorded on the Maternal HIV Test History and Assessment Form (DOH 4068) by chart review or maternal response for January through July, but only by chart review for the period from August through December. There are four categories of response and a fifth category, "Data Missing", exists if Maternal HIV Testing History is not recorded.

The mother's HIV test history is described in the following categories for the period of January 1, 1999 through July 31, 1999 (please note: in this time period, determination of the mother's HIV test history was determined by chart review or maternal response):

  • Reported tested During this pregnancy
  • Reported tested Prior to this pregnancy
  • Reported as Not Previously tested
  • Women who have been tested whose results are unknown at delivery and who are unable to give a response to this question are reflected in the category Unknown for this period.

The categories for the period of August 1, 1999 through December 31, 1999 required documentation of HIV test history:

  • Documented as tested During this pregnancy
  • Documented as tested Prior to this pregnancy
  • The maternal HIV testing history category called Not Previous indicates those women whose HIV status was not known at delivery due to testing not having been done.
  • For the period of August 1, 1999 through December 31, 1999, all women whose medical records did not arrive at the birth facility or whose medical records did not indicate prenatal HIV test results are categorized as Unknown.

Maternal HIV Test History and Assessment Form - Section VI

VI. HIV Test History at Delivery and Expedited Testing Status - (Check one from A D and one from E G,then transfer all A G box responses to the Newborn Screening Program Blood Collection Form)

  1. HIV Test History at Delivery (Check one from A D; be sure your response is supported by medical record documentation)
    • A. Tested this pregnancy
    • B. Tested prior to this pregnancy
      If A or B is checked, does the mother know her HIV status:
      • Yes
      • No
    • If yes, is mother HIV positive:
      • Yes
      • No
    • C. Not previously tested
    • D. Test history unknown/inaccessible
  2. Expedited HIV Testing Status - (Check one from E G; document all testing in the appropriate medical record)
    • E. Mother tested with consent
    • F. Newborn Tested
    • G. Testing not Needed (Mother was tested during this pregnancy and/or is HIV positive)

Expedited Testing

Since August 1, 1999, information on the Expedited HIV Testing status (box "E", "F", or "G"), along with the Maternal HIV Test History at delivery (box "A", "B", "C", or "D") is indicated on the Newborn Screening Blood Collection Form (DOH-1514).

Newborn Screening Blood Collection Form (DOH 1514) Image

Expedited Testing is described in the following categories:

  • Box "E": Mother consented and Tested
  • Box "F": Infant Tested
  • Box "G": Expedited Testing Not Necessary due to the mother having tested as HIV-negative during this pregnancy or is known to be HIV-positive.
  • Data Missing

D. Caution:

  • Data are reported by geographic area based on mother's county of residence except for the tables "Hospitals by Location". The birth facilities are reported in the county in which they are located.
  • During the period of January 1, 1999 through July 31, 1999, data on Maternal HIV Testing History was likely self-reported and not verified by chart review. Since the Expedited HIV testing regulation became effective on August 1, 1999, birth facilities are required to review the prenatal care record for written documentation to determine if the woman's HIV status is known. A woman's report of her HIV test history is not sufficient for the purposes of the assessment.
  • 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.
  • Immediately after the implementation of the Expedited HIV testing regulation, information about the Expedited HIV testing history was not always recorded on the Newborn Screening Blood Collection Form (DOH 1514). This unrecorded information appears in this report as "Data Missing". It should be noted that accurate documentation of Expedited HIV testing has steadily improved since the regulation was implemented.
  • 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.

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