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. 2018 Aug 10;133(5):532–542. doi: 10.1177/0033354918789912

Perinatal HIV Service Coordination: Closing Gaps in the HIV Care Continuum for Pregnant Women and Eliminating Perinatal HIV Transmission in the United States

Mary-Margaret Andrews 1, Deborah S Storm 2, Carolyn K Burr 2, Erika Aaron 3,4, Mary Jo Hoyt 2,✉, Anne Statton 5, Shannon Weber 6
PMCID: PMC6134567  PMID: 30096026

Abstract

Eliminating perinatal transmission of HIV and improving the care of childbearing women living with HIV in the United States require public health and clinical leadership. The Comprehensive Care Workgroup of the Elimination of Perinatal HIV Transmission Stakeholders Group, sponsored by the Centers for Disease Control and Prevention, developed a concept of perinatal HIV service coordination (PHSC) and identified 6 core functions through (1) semistructured exploratory interviews with contacts in 11 state or city health departments from April 2011 through February 2012, (2) literature review and summary of data on gaps in services and outcomes, and (3) group meetings from August 2010 through June 2017. We discuss leadership strategies for implementing the core functions of PHSC: strategic planning, access to services, real-time case finding, care coordination, comprehensive care, and data and case reviews. PHSC provides a systematic approach to optimize services and close gaps in perinatal HIV prevention and the HIV care continuum for childbearing women that can be individualized for jurisdictions with varying needs.

Keywords: case management, fetal infant mortality review, HIV, HIV care continuum, mother-to-child, perinatal, pregnant women, prevention, surveillance, transmission

Prevention of perinatal HIV transmission and comprehensive care of childbearing women with HIV and their infants require coordinated efforts across primary care, HIV, obstetric and gynecologic, and pediatric health care settings supported by an effective public health infrastructure. The decreasing annual number of perinatally infected infants in the United States, from a peak of 1650 in 1991 to 44 in 2014,1-3 is an important measure of success, but it does not provide insights into the complex work required to achieve this prevention metric, nor does it identify gaps in services.4,5 Perinatal HIV prevention efforts are particularly vulnerable to implementation gaps and failure because they involve layers of health care providers and systems. Risk factors for perinatal HIV transmission include late HIV diagnosis or acute infection during pregnancy; inadequate preconception, prenatal, or HIV care; lack of viral suppression at delivery; inadequate counseling and support to avoid breastfeeding; drug use; and being socioeconomically marginalized or of black/African American race or Hispanic ethnicity.6-11 Weak points in perinatal prevention (Table 1)12-32 can be targets for improvement efforts—from preconception care to HIV screening, engagement, and retention in prenatal and HIV care; perinatal prevention interventions; and comprehensive services for childbearing women with HIV.

Table 1.

Gaps in the perinatal HIV prevention cascade from the literature, United States, 2010-2018

Elements of the Perinatal HIV Prevention Cascade Gaps in Services
Adequate preconception care and family planning services

  • Almost half of pregnancies in the United States are unintended.12 In the 2007-2008 cycle of the Medical Monitoring Project that collected data about adults in HIV care, 385 women with HIV reported ≥1 pregnancy, of whom 326 (85%) reported ≥1 unplanned pregnancy.13

  • Women and men living with HIV desire children, but many do not receive recommended preconception counseling and care. In 2013-2014, an estimated 49% of HIV care providers in the United States provided comprehensive reproductive counseling to most or all of their female patients.14

  • Antiretroviral drug interactions with contraceptives can confuse clinicians and affect willingness to prescribe contraception.15

  • Analysis of 2014 data from a large US nationwide health care claims database indicated reproductive-aged women with HIV were less likely to use contraception than women without HIV (28.9% vs 39.8%).16

  • PrEP for HIV-discordant couples may lower the risk of HIV acquisition and transmission, but uptake among women is limited.17,18
Universal HIV screening and prenatal HIV testing

  • Approximately 15% of people with HIV do not know they are infected.19

  • Only about 75% of women were tested for HIV during pregnancy according to national insurance company data from >20 million pregnant women who delivered live infants in 2009-2010.20

  • Among women with live births in 35 states and New York City during 2004-2011, the overall self-reported prenatal HIV testing rate was 75%, but the rate varied widely (43.2%-92.8%), with higher rates in states with new and existing laws that supported testing standards than in states with no laws or limited laws.21

  • An estimated 22% of new HIV diagnoses in women are made during pregnancy.22 In Florida, perinatal HIV transmissions in 2011-2013 were strongly associated with maternal HIV diagnosis during labor and delivery or after birth; late diagnosis of maternal HIV infection appeared to be primarily the result of acute maternal infections and inadequate prenatal care.23

  • Fewer than 30% of women delivering at a large Baltimore, Maryland, hospital in 2012 had a repeat third-trimester HIV test according to CDC recommendations.24
Effective linkage to, engagement in, and retention in prenatal and HIV care services

  • Most (58%-82%) pregnant women with HIV receive a diagnosis of HIV before pregnancy, but 20% to 40% enter prenatal care after the first trimester or not at all9,10,22,23,25 (A. Hoover, meeting of DHAP/HICSB grantees, March 2017; D. Shaw, meeting of DHAP/HICSB grantees, March 2017).

  • Only 71.7% of pregnant women with a new diagnosis of HIV at CDC-funded testing sites in 2013 were linked to care within 90 days.25

  • Missed opportunities for prevention across the perinatal HIV care cascade and small numbers of perinatal HIV transmissions continue to occur,6,23,26,27 even among women with access to high-level care and follow-up.28

  • In Philadelphia, Pennsylvania, from 2005 to 2011, only 38% of pregnant women with HIV were engaged in HIV care within 3 months postpartum, although 92% were engaged in care during pregnancy.29

  • Rates of postpartum retention in care vary from 37% to 76% at 1 year and appear to depend on care infrastructure.30

  • In 2012, the rate of HIV infection per 100 000 live births was 15.1 among black/African American women, 1.7 among Hispanic women, and 0.03 among white women.31
ART with full viral suppression during pregnancy

  • In 2009-2013, 9.6% of pregnant women with HIV and their exposed infants received no known antiretrovirals during pregnancy or during labor and delivery, or infant prophylaxis after delivery.22

  • In a multicenter observational study at 67 clinical research sites from 2002 to 2011, 13% of women with HIV had detectable viral load at delivery.10

  • In Philadelphia during 2005-2013, 85% of pregnant women with HIV received ART, but only 52% had viral suppression at delivery.7
Intrapartum and postpartum interventions

  • Data about missed opportunities for prevention indicate that some women may present in labor without documentation of HIV status or recent HIV RNA results, and some women with HIV with detectable HIV RNA levels may not receive scheduled Caesarean section or intrapartum intravenous zidovudine according to recommendations for care.6,23,26

  • Some women with HIV may breastfeed, despite recommendations to avoid it.32
Comprehensive services for mother and infant
  • Care infrastructure gaps (M. Andrews, meeting of the EMCT Comprehensive Care group, November 2016)
    • Experienced perinatal HIV providers in jurisdictions that lack Ryan White HIV/AIDS Programs or other experienced perinatal HIV centers
    • Case management
    • Transportation to care (especially in rural settings)
  • Services reimbursement gaps for patients who are: (M. Andrews, meeting of the EMCT Comprehensive Care group, November 2016)
    • Underinsured but not Medicaid eligible and have no access to Ryan White HIV/AIDS Program services or FQHCs
    • Underinsured refugees or immigrants in the United States for <5 years who cannot afford Affordable Care Act insurance and are not low income enough to have Ryan White HIV/AIDS Program pay for their commercial insurance
    • Aged 26, transitioning from parents’ insurance to individual insurance
    • Medicaid or Medicare patients who cannot afford medication copays
    • Transitions from birth until Medicaid enrollment
    • Change in income resulting in transition from Medicaid to expanded Medicaid or marketplace insurance
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Abbreviations: ART, antiretroviral therapy; CDC, Centers for Disease Control and Prevention; DHAP/HICSB, Division of HIV/AIDS Prevention/HIV Incidence and Case Surveillance Branch; FQHC, Federally Qualified Health Center; PrEP, preexposure prophylaxis.

A comprehensive approach is necessary to address gaps in perinatal HIV prevention, including the use of Ryan White HIV/AIDS Program (Ryan White Program) care, treatment, and support services.33 From August 2010 through June 2017, the Centers for Disease Control and Prevention (CDC) Elimination of Mother-to Child HIV Transmission (EMCT) Stakeholders Group convened multidisciplinary professionals and community members, including women with HIV, to address clinical practice, reporting, data, research, and infrastructure needs for a national strategy to eliminate perinatal HIV transmission in the United States, illustrated by the CDC framework for eliminating perinatal HIV transmission (Figure).5 Individual workgroups focused on a single component from among the framework’s 6 components: reproductive health, family planning services, and preconception care; comprehensive real-time case finding; comprehensive care; research and long-term monitoring; data reporting; and case review and community action. The Comprehensive Care Workgroup focused on the effective integration of clinical and public health services by developing a concept of perinatal HIV service coordination (PHSC). PHSC is a systems-level approach of public health and clinical leaders collaborating to optimize services and close gaps in perinatal prevention and the care of childbearing women with HIV. In this article, we describe key functions of PHSC and recommend leadership strategies for implementation that can be used by health departments, Ryan White Program grantees, and others to optimize perinatal HIV prevention and strengthen the care of childbearing women with HIV before, during, and after pregnancy.

Figure.

Figure.

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CDC’s framework for the elimination of perinatal transmission of HIV shows how components of the framework interact and work together in preventing perinatal HIV transmission: “aReproductive health and family planning services, preconception care, and universal HIV testing are essential components of EMCT and facilitate bcomprehensive real-time case finding of all HIV-infected pregnant women. Real-time case finding enables: ccomprehensive clinical care and psychosocial services for women and infants; ddetailed review of selected cases to identify and address missed prevention opportunities and local systems issues through continuous quality improvement (Fetal and Infant Mortality Review–HIV [FIMR-HIV] Project), fresearch and long-term monitoring to develop and ensure safe, efficacious interventions for EMCT; and ethorough data reporting for HIV surveillance and EMCT evaluation.” Abbreviations: CDC, Centers for Disease Control and Prevention; EMCT, elimination of mother-to-child HIV transmission. Reprinted with permission from the American Academy of Pediatrics.5 http://www.cdc.gov/hiv/group/gender/pregnantwomen/emct.html.

Methods

The Comprehensive Care Workgroup conducted literature reviews and key informant interviews to identify gaps in data on perinatal HIV prevention and best practices and models for perinatal HIV prevention in jurisdictions with high HIV prevalence or incidence and jurisdictions with low HIV prevalence or incidence. Nine aspects of PHSC with relevance to the perinatal HIV elimination framework emerged from initial workgroup discussions: strategic plans for eliminating perinatal HIV transmission, mechanisms for major stakeholders to convene and plan, access to perinatal HIV services, an internet presence that specifies perinatal HIV, real-time linkages to care for pregnant women, postpartum linkages to HIV care, preconception care, the case-review process, and underserved populations. From April 2011 through February 2012, these topic areas were explored in semistructured interviews with key informants in 9 state and 2 city health departments in 3 eastern states, 4 southern states, 3 midwestern states, and 1 western state. At the time of the interviews, selected jurisdictions included 9 of the 12 cities with an estimated 50% of the total US population of people with HIV, with some jurisdictions selected to provide better representation of US geographic regions and include jurisdictions with a lower incidence of HIV. The Dartmouth College Committee for the Protection of Human Subjects deemed the interviews exempt from institutional review board review.

The workgroup synthesized information from group discussions, key informant interviews, and literature reviews to develop a concept of PHSC and leadership strategies for implementation that were then shared with broader audiences. Two national webinars, conducted to disseminate information about PHSC and postpartum retention in care for women with HIV, concluded with question-and-answer periods to gather input from participants, and 3 in-person meetings of the EMCT Stakeholders Group provided additional feedback. Through these activities, the Comprehensive Care Workgroup further developed the core functions of PHSC and recommended leadership strategies for implementation.

Recommendations for PHSC

The foundational component of PHSC is prospective and ongoing attention to the prevention and elimination of perinatal HIV, including comprehensive care services for childbearing women with HIV and their infants. PHSC by public health and lead clinical agencies provides the expertise, direction, and support required to identify and address weak points or gaps in perinatal HIV prevention. It also promotes the collaboration and innovation needed to address prevention challenges across diverse health care settings. The 6 key functions of PHSC and recommended leadership strategies, described in the following sections and summarized with implementation metrics (Table 2), incorporate core elements for supporting effective perinatal HIV prevention and comprehensive care of childbearing women with HIV. PHSC can be accomplished by 1 person or several people and can be coordinated by a lead agency or health department or collaboratively across stakeholders. Staffing and funding can overlap with other programs, such as hepatitis B or syphilis programs, Ryan White Programs, fetal and infant mortality review (FIMR), and perinatal quality-improvement networks. Jurisdictions can use data on gaps in perinatal HIV prevention (Table 1), in conjunction with available local and state data, to identify priorities and individualize PHSC to meet differing resources and community needs.

Table 2.

Key functions of perinatal HIV service coordination, leadership strategies, and metrics for implementation by public health and lead clinical agencies

Key Functions Leadership Strategies Metrics
Strategic planning: Develop and use a strategic plan for eliminating perinatal HIV transmission, optimizing care, and closing gaps in the HIV care continuum for women living with HIV, with defined improvement targets.

  • Identify key stakeholders and champions, including women living with HIV.

  • Create and sustain mechanisms for stakeholders to convene and plan.

  • Formalize stakeholder group roles and responsibilities.

  • Support collaboration with groups having shared interests and goals (eg, preconception care, HIV care continuum).

  • Monitor performance toward strategic plan goals.

  • Jurisdiction strategic plan created and used by key stakeholders

  • Plan updated at least annually

  • Up-to-date stakeholder email list or listserv maintained

  • Plan metrics collected and analyzed; new priorities developed
Access: Facilitate and promote access to perinatal HIV services and information.

  • Identify and publicize jurisdictional points of contact for accessing perinatal HIV services, such as perinatal hotlines, key individuals, and internet resources.

  • Create informational resources and access to resources about perinatal HIV prevention, including ambulatory and delivery hospital best practices and protocols.

  • Clinicians, pregnant women, and women with HIV use points of contact to access services.

  • Internet search pulls in key points of contact for patients and providers.

  • Clinicians can identify jurisdiction leaders and lead organizations.

  • Perinatal HIV resources are identified and distributed or publicized.
Real-time case finding: Detect HIV before or early in pregnancy with all pregnant women, with HIV identified before delivery.

  • Monitor HIV screening rates and gaps in perinatal HIV screening.

  • Implement activities to strengthen HIV screening before and during pregnancy and in labor and delivery (eg, trainings, continuous quality-improvement initiatives, partner testing).

  • Identify pregnancy among women living with HIV.

  • Use surveillance data to assist with case finding when possible.

  • Make regular, direct contacts with prenatal and HIV care providers.

  • Maintain relationships with substance abuse and family planning care personnel and others providing care to at-risk women.

  • Rates of first- and third-trimester HIV screening at all prenatal and delivery sites and gaps in perinatal HIV screening monitored regularly

  • Availability of expedited HIV testing at all delivery sites

  • Proportion of women with documented HIV status at the time of labor and delivery

  • Confirmed real-time communication between clinicians and public health officials
Care coordination: Link women with HIV to comprehensive medical and psychosocial care and support ongoing engagement in services.

  • Prioritize real-time linkages to HIV care for women diagnosed with HIV during pregnancy.

  • Prioritize linkages to prenatal care for newly pregnant women with HIV.

  • Design comprehensive services to address barriers to care.

  • Develop novel approaches to support effective and ongoing linkages to care.

  • Number and proportion of newly diagnosed pregnant women linked to HIV care within 2 weeks

  • Number and proportion of women who begin prenatal care in the first trimester of pregnancy

  • Number of sites with access to enhanced perinatal case management or navigators and number of pregnant women with HIV requiring this service

  • Standing multidisciplinary case management meetings to address the needs of active clients
Comprehensive care for childbearing women: Integrate perinatal HIV prevention into care services from preconception care through postpartum and interconception care.

  • Employ novel methods to advance preconception care and integrate perinatal prevention care in HIV services.

  • Support the development of strategies for improving postpartum linkages to care.

  • Reproductive intentions are documented in HIV primary care notes.

  • HIV primary care team remains involved during pregnancy.

  • Resources and strategies to advance preconception care and postpartum linkages to care are identified and disseminated.
Data and case reviews: Collect and use data, including data from case reviews, to support perinatal HIV prevention, monitor progress, and address jurisdictional systems issues.

  • Make anonymous surveillance data available to clinical programs and clinical program data available to surveillance.

  • Perform case review, such as FIMR-HIV case reviews of perinatal transmissions and near misses; embed FIMR-HIV in a sustainable model.

  • Identify existing gaps and underserved populations to inform continuous quality-improvement initiatives to strengthen perinatal HIV prevention.

  • Track number of pregnant women living with HIV per year, new diagnoses in pregnancy, pregnancy outcomes, and number of HIV-exposed and HIV-infected infants per year; identify hotspots and sites of care.

  • Based on case reviews, community action plan, and continuous quality-improvement cycle implemented.

  • Data are fed back to the strategic planning group to inform resource planning and use.
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Abbreviation: FIMR-HIV, Fetal Infant Mortality Review–HIV.

Recommendation 1. Strategic Planning: Develop and Use a Strategic Plan for Eliminating Perinatal HIV Transmission, Optimizing Care, and Closing Gaps in the HIV Care Continuum for Childbearing Women With HIV With Defined Improvement Targets

Jurisdictional strategic planning involves committing to reduce perinatal HIV and improve care for childbearing women with HIV by using action steps with timely follow-up and improvement cycles. A strategic plan is a formal and public mechanism to prioritize perinatal HIV reduction targets, identify gaps in services, and coordinate a regional response. It also helps to define stakeholder agencies’ relationships and responsibilities. Goals of the strategic plan need to be informed by data and local objectives that are “SMART”—specific, measurable, attainable, relevant, and time-based. Of the 6 key PHSC functions, strategic planning depends most on effective public health department leadership, although other stakeholders are also empowered to initiate strategic planning processes.

Effective strategic planning groups involve professional stakeholders with diverse perspectives and health care consumers. Context and resources can come from representatives of maternal-child health, substance use, and mental health programs; Medicaid/Medicare; and local or regional HIV organizations, including clinical and community-based agencies. Clinical input is needed from physicians, nurses, pharmacists, mental health providers, social workers, and case managers who work in the fields of obstetrics and gynecology, infectious disease, HIV primary care, and pediatrics. Involvement of women and men living with or at risk for HIV who have received HIV-related services in the community provides important consumer perspectives about needs, resources, and access. It is important to identify stakeholders who have emerged as jurisdictional leaders and others interested in committing to work on defined goals over time. Groups require core leadership and coordination to stay on task. Suggested metrics (Table 2) can be used to assess the strategic planning process and progress in implementation.

Recommendation 2. Access: Facilitate and Promote Access to Perinatal HIV Services and Information

Access to perinatal HIV services and information is an important priority because clinicians and health facilities may have limited experience with clinical care guidelines for the care of pregnant women with HIV and their infants. Information about local or regional service contacts, protocols, required reporting elements, best-practice resources, and epidemiologic data and trends can be disseminated through strategic planning meetings, regional publications, continuing education, and email listservs. Whenever possible, core information, including the strategic goals and plans, can be posted on a health department’s or lead organization’s website. A statewide single point of contact for perinatal HIV prevention is a promising model in areas of low HIV incidence and areas of high HIV incidence. To streamline communication, the lead agency for PHSC could serve as the primary contact, maintaining a broad knowledge of available services and responsibility to ensure real-time linkages to medical care and case management, follow-up, reporting, and regional planning for perinatal HIV. Although some health departments assume this role, experienced clinical programs that use a network to promote effective referrals and linkages may function as the jurisdictional contact.

Several potential metrics exist to assess whether perinatal HIV services and information are reaching their target audience (Table 2). Some jurisdictions have been successful in developing non–surveillance-based contacts for providers or patients to access perinatal HIV services. HIV surveillance programs may not have mechanisms to route information quickly to health care workers and may not be aware of pregnant women with a new diagnosis of HIV or pregnant women with HIV who are out of care. The District of Columbia Department of Health addressed this issue by requiring the reporting of pregnant women with HIV to ensure effective case management and access to services. Illinois developed a web-based and telephone hotline (http://www.hivpregnancyhotline.org). Nationally, resources are available for up-to-date information and service referrals from the HIV Clinician Consultation Center Perinatal HIV Hotline.15 Funding to sustain these programs may, however, pose barriers.

Recommendation 3. Real-Time Case Finding: Detect HIV Before or Early in Pregnancy, With All Pregnant Women With HIV Identified Before Delivery

Real-time case finding includes detecting new HIV diagnoses among pregnant women and being informed about pregnancies among women with known HIV so that real-time linkages to comprehensive care can be confirmed. PHSC emphasizes implementation of routine HIV screening and HIV testing in various clinical settings with a goal of detecting HIV before or early in pregnancy. Additional priorities include a recommended second HIV test during the third trimester in jurisdictions with elevated HIV incidence for women aged 15-24, for women receiving health care in facilities with prenatal HIV prevalence of ≥1%, and for women at known high risk for acquiring HIV (eg, women who inject drugs or are sexual partners of injection drug users) or with signs or symptoms of acute HIV, as well as testing during labor for women with unknown HIV status.34 Access to expedited laboratory-based HIV testing with results within 1 hour is recommended for labor and delivery sites,35 but some facilities still use less sensitive, rapid point-of-care tests or may not have access to HIV testing, particularly during off hours. Some pregnant women with HIV are diagnosed late or not diagnosed during pregnancy, and others receive late or no prenatal care (Table 1). HIV-associated stigma, active substance use with concerns about losing child custody, and immigration status may contribute to pregnant women with HIV not seeking prenatal care. These issues underscore why delivery hospitals need to maintain the capacity to perform expedited HIV testing for childbearing women of unknown HIV status.

Monitoring HIV screening rates is not simple or routine in most prenatal clinics or delivery hospitals. These rates are not standard quality measures or reportable indicators, and efforts to measure them can be time consuming and low priority, especially in areas with low HIV incidence. Local perinatal quality-improvement networks and lead clinical agencies can spearhead activities to assess and improve HIV screening, especially at underperforming sites, through technical assistance, training, continuous quality-improvement projects, and other initiatives.6,26,36

Although perinatal HIV exposure surveillance is helpful, it does not always translate into real-time case finding. Knowledge about and direct communication with providers and programs serving childbearing women with HIV and at-risk women support effective case-finding efforts. Lead perinatal HIV clinical agencies generally track the number of pregnant women with HIV they are following, and this number is reportable for Ryan White Program sites. Annual state and national Ryan White Program data are eventually made available to state health departments. These agencies can share anonymous data and trends with public health partners and other key PHSC stakeholders in their region and reach out to partners to address service gaps.

Recommendation 4. Care Coordination: Link Childbearing Women With HIV to Comprehensive Medical and Psychosocial Care and Support Ongoing Engagement in Services

Early, sustained engagement of pregnant women with HIV in antenatal and HIV care and adherence with antiretroviral therapy (ART) are priorities. Pregnant women starting ART require adequate time to reach undetectable levels of HIV RNA before delivery. Pregnant women with HIV face challenges related to having multiple providers (eg, HIV care providers, obstetricians) and sites of care (eg, clinics, laboratories, delivery hospitals). Pregnant women may need assistance with transportation, language barriers, childcare, housing, nutrition, substance use, and mental health services. The process of effectively linking some pregnant women with HIV to care may require intensive outreach efforts for days or months. Ryan White Program Part D programs that focus on women, infants, children, and adolescents can provide needed support, but these services are not uniformly available.

Substantial care coordination gaps for pregnant women with HIV exist (Table 1). However, standard metrics for successful linkage (Table 2) have been implemented in several metropolitan areas. Some jurisdictions have embraced novel service models for engaging pregnant women in HIV care that require resources from clinical care providers and health departments, Ryan White Program Part D providers, or community-based agencies. Philadelphia’s referral-based, voluntary, perinatal medical case-management program assigns case managers when pregnant women with HIV are identified to coordinate and support their care. In a study conducted in 2013, women receiving perinatal case management in this program were more likely than women not receiving perinatal case management to have suppressed HIV viral load at delivery and be retained in HIV care at 1 year postpartum.9 Enhanced perinatal case management is also available in Chicago and its collar counties (http://www.pregnantandpositive.org/programs/enhanced-case-management). Case management is especially important for women who receive a diagnosis of HIV during pregnancy or during hospitalization for labor and delivery.

Several jurisdictions have mechanisms to refer pregnant women with HIV to established care networks, but they do not have active processes to bring in patient navigators (ie, people who help guide patients through the health care system), case managers, or others to ensure that pregnant women with HIV are linked to and retained in care. Many pregnant women with HIV do not have access to intensive or enhanced case-management services, and replicating these services outside HIV epicenters is challenging. Colocation of medical and case-management services can ease the challenges of linkages to care, and standing multidisciplinary case-management meetings can be an efficient way to review active client lists and address challenges.37 In addition, PHSC can work with clinical programs or community-based organizations focused on the local or regional HIV care continuum to provide needed training and develop protocols to identify and prioritize clients who are pregnant.

Recommendation 5. Comprehensive Care for Women: Integrate Perinatal HIV Prevention Into Care Services From Preconception Care Through Postpartum and Interconception Care

Effective perinatal prevention begins before women become pregnant. PHSC can identify barriers to the comprehensive care of women of reproductive age living with HIV that can then be addressed through strategic planning. Recommended leadership strategies (Table 2) highlight preconception care and postpartum retention in HIV care as service areas to be strengthened. Jurisdictions can work toward integrating primary health care for women of childbearing age, HIV testing, HIV care including suppressive ART, family planning, and care for mental health or substance use, or supporting more effective collaborations among these services. Because infrastructure and funding streams for various types of care are often siloed, novel care and reimbursement models may be needed to bridge the gap for patients and providers. Examples include implementation of HIV testing at Special Supplemental Nutrition Program for Women, Infants, and Children sites and family planning clinics38-40; integration of preconception care into HIV care14,41; and integration of perinatal HIV prevention into state syringe-access programs.42

Although pregnant women with HIV are more likely to be linked to HIV care than nonpregnant women with HIV, linkage can be late or absent,25 and some women may not receive recommended perinatal prevention interventions (eg, ART, scheduled cesarean delivery, intrapartum zidovudine) because of provider- or facility-related issues. In addition, retention in care, adherence to ART, and viral suppression rates have been shown to decline postpartum.30 After giving birth, women with HIV require support to abstain from breastfeeding, provide antiretroviral prophylaxis to their HIV-exposed infants, and maintain their own health, which includes reconnecting with HIV primary care. Appropriate reproductive counseling and family planning are needed for effective interconception care.

The Comprehensive Care Workgroup developed an electronic toolkit to support access to available resources for clinical care during and after pregnancy (http://www.fxbcenter.org/PerinatalHIVToolkit.html). Some women with HIV may receive intensive case management during pregnancy, but they have limited access to these services in HIV primary care settings postpartum. Changing insurance status, especially loss of a mother’s Medicaid eligibility in the weeks to months after delivery and restrictions on arranging newborn eligibility before delivery, creates further challenges for patients.

Recommendation 6. Data and Case Reviews: Collect and Use Data, Including Data From Case Reviews, to Support Perinatal HIV Prevention, Monitor Progress, and Address Jurisdictional Systems Issues

Information about targeted populations and service gaps provides critical information to strategic planning groups (Table 2), but data for understanding and improving services are often limited. A 2014 study found that only 28 states and 5 cities performed some type of perinatal HIV exposure surveillance; the study’s authors recommended expanded surveillance of perinatal HIV exposure to address the fact that many jurisdictions still lack data on pregnancies among women with HIV, the challenges that pregnant and postpartum women with HIV face in adhering to care, and the quality of follow-up care for HIV-exposed infants.43 CDC is implementing updated guidance for the surveillance of perinatal HIV exposure that will enhance the data available to monitor progress and strengthen services. Ryan White–funded programs submit annual data on the numbers of pregnant women, HIV-exposed infants, and perinatal HIV transmissions, as well as the number of pregnant women receiving ART. However, the Ryan White Program data may not be collated and reported locally or disseminated to local stakeholders. As a result, clinical programs and perinatal networks may be unaware of up-to-date regional trends.

Perinatal HIV transmissions are now considered sentinel events. The FIMR-HIV process systematically reviews and learns from such events, as well as near-transmissions (http://www.fimrhiv.org).44 FIMR-HIV looks for recurring themes and systems issues leading to gaps in care and develops a community action plan to respond to those gaps. These reviews, which include maternal interviews, provide critical insights into local demographic characteristics and health care systems issues associated with HIV perinatal transmission. CDC core HIV-prevention grants to all states recommend the FIMR-HIV methodology as a key intervention for perinatal prevention and now require it in 16 jurisdictions that have high rates of diagnosed HIV among women of childbearing age. The major barriers to sustaining FIMR-HIV are a lack of funding and integration into the broader infrastructure of public health perinatal infection prevention and maternal-child health. Even with an effective case-review process, it can be challenging to modify regional practice based on the findings and to disseminate best practices (eg, improving third-trimester testing after a missed diagnosis). Although at-risk populations may be similar across jurisdictions, each jurisdiction may have unique underserved populations and service gaps that emerge from available data, including reports from providers, the case-review process, and local or regional continuous quality-improvement projects and research studies.

Public Health Implications

PHSC provides a foundation for sustaining improvements while addressing gaps in perinatal HIV prevention and reaching CDC’s elimination goal, a perinatally acquired HIV incidence of <1 in 100 000 live births and a transmission rate of <1% in the United States. The 2013 estimated incidence was 1.8 in 100 000 live births—down from a peak of 43.1 in 1992.45 Despite tremendous progress, missed opportunities for prevention and racial/ethnic disparities in the epidemiology of HIV among women and children persist, with black/African American children disproportionately affected by perinatally acquired HIV. Systems-level approaches, new models of care, and vigilance will be required to sustain or further reduce perinatal HIV transmissions in the United States.33 Recent recommendations (2015) from the US Public Health Service deputy surgeon general chart a course for ending HIV transmission through sustaining successful efforts to date, engaging people with HIV who are not in care, addressing HIV disparities, and guarding against factors (eg, the opioid epidemic) that can facilitate the spread of HIV.46

The 6 key functions of PHSC, leadership strategies, and metrics provide a roadmap to assist public health and lead clinical agencies in identifying and meeting their needs and priorities in perinatal HIV prevention and the comprehensive care of childbearing women with HIV. PHSC is needed in all states and jurisdictions. Across the United States, more than 95 000 women of childbearing age (15-45 y) have diagnosed HIV, including a disproportionate number of racial/ethnic minority women.47 Communities with many foreign-born women with HIV, who account for an increasing proportion of HIV-exposed deliveries, may have special needs, especially related to health care access and use.4 Of diagnosed women with HIV (all ages) in 2014, 80% lived in metropolitan statistical areas with populations >500 000, 15% lived in metropolitan areas with populations of 50 000 to 499 999, and the remainder lived in nonmetropolitan rural areas.47 US counties with the highest ratios of female-to-male HIV prevalence are concentrated in the southern United States, and residents of these counties are of lower socioeconomic status.48 In addition, high rates of women with HIV (diagnosed) are evident in most states along the East Coast and across the Southeast—a finding that correlates with a recent study documenting the same geographic associations with the number of pregnant women with HIV hospitalized in the United States from 2004 to 2011.49 The public health infrastructure and care coordination required to prevent perinatal HIV transmission do not depend on whether women reside in areas of high, medium, or low HIV prevalence or incidence. However, understanding the geographic distribution and hotspots of perinatal HIV transmissions can inform care and prevention services.

PHSC provides a model and approach for clinical, public health, and community-based leadership toward eliminating perinatal HIV in high-, medium-, and low-incidence jurisdictions. PHSC works to create a circle of success, closing gaps in the HIV care continuum for childbearing women with HIV and engaging and retaining women with HIV and their infants in care.

Acknowledgments

Dr Andrews, Dr Storm, and Dr Burr are now retired. The authors acknowledge and thank CDC colleagues and members of the EMCT Stakeholders Group for sharing expertise and experiences that contributed to the development of recommendations for PHSC.

Footnotes

Declaration of Conflicting Interests: The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding: The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: The authors received no financial support for the research, authorship, and/or publication of this article. Other activities of the EMCT Stakeholders Group were funded by CDC cooperative agreement NU65PS003776.

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