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the following information was current as of the 2000 Perinatal HIV
Prevention Grantees Meeting; please use caution when using these
resources as some of this information may be no longer current.
Meeting to Discuss Epidemiology Branch Projects for the Program to Maximally Reduce Perinatal HIV Transmission
Perinatal HIV Prevention Grantees Meeting (PDF only)
Meeting to Discuss Epidemiology Branch Projects for the Program to Maximally Reduce Perinatal HIV Transmission
Atlanta Marriott North Central
2000 Century Boulevard, NE
Monday, January 10, 2000
Moderators – Mary Glenn Fowler, Sherry Orloff, Centers for Disease Control and Prevention
The meeting opened at 1:00 P.M. with introductions and welcome messages by Mary Glenn Fowler and Sherry Orloff. Attendees introduced themselves prior to presentations by members of five organizations.
American Academy of Pediatrics (AAP)
Alicia Siston and Catherine Wilfert presented the Pediatrician’s Role in Perinatal HIV Transmission. The AAP is a not-for-profit professional organization with a membership of about 55,000 pediatricians. The AAP believes that pediatricians play a vital role in the further reduction of perinatal HIV transmission.
The AAP’s project goals are as follows:
Education – The AAP will promote perinatal HIV prevention to its membership through
- A special "Perinatal HIV Prevention" insert in the AAP’s standard batch mailing. The insert will include a cover letter highlighting the importance of pediatrician involvement, three patient education brochures, a poster from the Elizabeth Glaser Pediatric AIDS Foundation (PAF), and a fact sheet
- Reprint of the Executive Summary from the Institute of Medicine (IOM) Report, Reducing the Odds: Preventing Perinatal Transmission of HIV in the United States, in their news magazine, AAP News
- Promotion of the IOM report and AAP/American College of Obstetricians and Gynecologists (ACOG) joint policy statement
- AAP Grand Rounds - an article in this monthly newsletter
- NeoReviews - an article in this online section of Pediatrics in Review
- Other educational courses and sessions (Practical Pediatrics CME, Pediatrics Review and Education Program, and the AAP Annual Meeting)
- ACOG. The AAP has collaborated with ACOG to revise a joint policy statement on HIV screening of pregnant mothers, "Human Immunodeficiency Virus Screening," published in the July 1999 issue of Pediatrics.
- IOM. In addition, the AAP was represented on the IOM Committee on Perinatal Transmission of HIV, which produced the report, Reducing the Odds: Preventing Perinatal Transmission of HIV in the United States.
- AHA. The AAP will attempt to involve the American Hospital Association (AHA) in efforts to educate patients and providers on issues surrounding perinatal HIV transmission and quality assurance.
- NAPNAP. Collaboration with the National Association of Pediatric Nurse Associates and Practitioners (NAPNAP) will facilitate access to heatlh care providers who interact with families.
Membership assessment – The AAP Department of Pediatric Practice will conduct a Periodic Survey of Fellows to evaluate AAP member knowledge, attitudes, and behaviors pertaining to the further reduction of perinatal HIV transmission. The Committee will carefully review the results and suggest mechanisms for how the AAP can continue to educate its membership on this topic in an effort to effect behavior change.
Evaluating the offering of HIV counseling testing. There is a general need to routinize offering of HIV testing within the context of ongoing prenatal services. A check box on patient charts may change providers’ behavior; providers are evaluated by completeness of their charts. A simple means of determining whether providers have offered counseling and testing might be to include check boxes on the front of patient’s charts and having the hospitals tally how many providers complete these forms. This idea may or may not be approved by the AHA, ACOG, and others. The main point is to routinize recording the offering of HIV testing, which is currently quite variable. Some states have laws about offering counseling and testing. For example, some consents must be written; sometimes consenting is included within the general admission form. Electronic birth certificates are helpful in determining whether testing was given, but not whether it was offered.
Linking mother and infant medical records. AAP will try to work with AHA on this. Some computerized institutions already do this. In others, maternal information is not automatically transferred to the infant’s chart and must be gathered manually.
Response to joint AAP/ACOG statement. There has been no response from membership, but response has been varied from advocacy groups. Some think offering is not as important as counseling, but most are in favor of diminishing counseling.
Website. Perinatal HIV transmission website information is limited to policy statements. Perinatal treatment guidelines and counseling and testing guidelines are linked to the AAP website. AAP is working with seven other health organizations on a consumer-based website.
- Phone: 800.433.9016
- Website: www.aap.org
American College of Obstetricians and Gynecologists (ACOG)
Debra Hawks summarized ACOG’s plans for reducing perinatal HIV transmission. ACOG is a specialty society with about 40,000 members who deal with women’s health issues and infant and child health. ACOG members participate in the bulk (about 85%) of the deliveries in the United States each year; family physicians and nurse midwives make up the other 15%. ACOG delivers committee opinions to respond quickly to fast changes in practice (data, technology, devices). Recent examples include a committee opinion on Pediatric AIDS Clinical Trials Group (PACTG) 076. Another committee opinion was issued in 1999, showing that scheduled cesarean delivery at 38 weeks can further reduce perinatal HIV transmission, depending on the woman’s viral load and medical status. The 1999 revised AAP/ACOG policy statement on the IOM report recommends universal perinatal HIV testing with patient notification, but it contains the proviso that counseling and education to pregnant women is still important but should not be a prerequisite or a barrier. ACOG’s goal is to increase routine HIV testing by ob-gyns (currently offered by 50- 75%), focusing on those who do not recommend testing because they either do not perceive their patients to be at risk, do not have sufficient time, or are limited because of pretest counseling requirements.
ACOG’s project plans are to routinize prenatal testing by doing the following:
- Distribute patient and professional materials
- Issue AAP/ACOG statement on testing
- Issue cesarean delivery committee opinion
- Design innovative physician tools on testing (tear pad, physician reference sheet)
- Provide postgraduate education (annual clinical meeting, postgraduate courses)
- Promote perinatal HIV testing at grassroots level (in all 10 districts)
- Enhance media coverage (to heighten consumer- male and female- interest in testing)
- Participate in state-specific Providers Partnership (CT, NC)
- Collaborate with AAP and others
- Evaluate project (survey 1,000 U.S. ob-gyns on testing practices, risk perception, reasons for not testing all pregnant patients)
Innovative materials for exam rooms (patient and provider). ACOG is developing innovative materials to resemble Alberta’s. Should be available in April. May be applicable to other providers as well; e.g., Ryan White Care Act grantees, Title IV grantees, state AIDS directors.
Risk perception evaluation. Private practitioners tend to feel there is less risk for HIV infection and therefore less need for testing. Caution was advised in phrasing of the question. Changing a few words ("should you" vs. "do you") in the question will evoke a different answer. For example, when asked whether all women should be offered C&T regardless of risk, 95% said "yes." But when asked, "Do you offer C&T to all women? If not, do you offer it on the basis of perceived risk?" only 50% answered "yes."
- Committee Opinion, Scheduled Cesarean Delivery and the Prevention of Vertical Transmission of HIV Infection
- Joint Statement of ACOG/AAP on HIV Screening
- Patient education pamphlet, HIV Testing & Pregnancy (under revision)
- Video, HIV & Pregnancy
- Important News for Pregnant Women (tear sheet adapted from Alberta Health)
- Physician reference card (adapted from Alberta Health)
National Pediatric and Family HIV Resource Center (NPHRC)
Carolyn K. Burr and Elaine Gross discussed NPHRC’s plans for "Reducing Perinatal HIV Transmission: Targeted Training of Health Care Providers." The NPHRC is a project within the François-Xavier Bagnoud Center at the University of Medicine and Dentistry of New Jersey (UMDNJ).
The organization provides hands-on education, technical assistance, and consultation to programs and providers; forms expert working groups on emerging issues; develops and distributes provider and consumer educational materials; and provides online education (www.pedhivaids.org). The NPHRC website is linked to many related sites.
NPHRC’s project goals are as follows:
- Increase providers’ knowledge about HIV counseling and testing of pregnant women
- Increase providers’ understanding of strategies to reduce perinatal HIV transmission
NPHRC plans to build upon what they did in New Jersey to promote the findings of the PACTG protocol 076. Over the next two years, NPHRC will partner with key organizations within four states (DC, MS, and two not yet determined). One-day training in each state will use a train-the-trainer, or faculty training model, approach to build on existing expertise and resources. The training will use didactic (familiar to physicians) and interactive (most likely to modify behavior) approaches. The content of the training will include
- HIV counseling and testing in pregnancy
- Medical management of HIV in pregnancy
- Reduction of perinatal HIV transmission
- Controversies in perinatal HIV care
- Adult learning strategies
Enabling strategies will involve providing materials that facilitate adaptation to change; e.g., patient education materials and provider pocket guides. Trainers will not need to develop their own materials but rather will be given a complete curriculum of slides, case studies, patient and provider educational materials with which they can then educate a larger audience of women’s health care providers and provide ongoing expertise within the community. Follow-up (6-9 months) surveys will evaluate trainers’ knowledge and attitudes about perinatal HIV infection and their practices regarding HIV testing of pregnant women. The outcome of the training can be measured by the number of women receiving HIV testing and the number of HIV-exposed infants before and after training intervention.
Evaluation language. It would be ideal to use the same language nationally in evaluation questions so the data can be more generalized.
Website. Almost 10,000 people have visited the website. Continuing medical education (CME) will not be available on the web until the revised perinatal guidelines are established.
Model program. Mississippi has a good infrastructure and will be a good model to build from. Mississippi training will probably begin in early summer 2000; Washington DC, probably late summer.
Materials Available (in English and Spanish)
Materials will be updated after revised perinatal guidelines are published.
- Pocket card:
Guidelines for Use of HIV Antiretroviral Therapy in Pregnancy/Follow-up Care for Infants Born to Mothers with HIV Infection
- Reduction of Perinatal HIV Transmission: A Guide for Providers
- What Women Need to Know: The HIV Treatment Guidelines for Pregnant Women
Association of Maternal and Child Health Programs (AMCHP)
Alison Wojciak and Sarah Pfau described the AMCHP Cooperative Agreement in the context of existing Title V program efforts. AMCHP is a national nonprofit organization that provides leadership to assure the health of all women of reproductive age, children, and youth. Its over 400 members include directors and staff of state MCH (Title V) programs and professionals in government, academia, research, policy, and advocacy. AMCHP develops position papers and policy statements, develops issue briefs and fact sheets, and monitors actions of Congress.
Forums – AMCHP communicates and provides technical assistance through
- Annual meetings
- Bimonthly newsletters, Updates
- Website (www.amchp.org)
- National audio conferences
- Policy publications
- Participation in Title V regional conference calls
- Collaboration with many national organizations and federal agencies
Objectives – AMCHP’s broad objectives include
- Providing technical assistance and disseminating materials to promote perinatal HIV prevention within the MCH sector
- Assisting state Title V programs in integrating HIV counseling and testing into routine preconceptional and prenatal care
- Facilitating the exchange of ideas and experiences in perinatal HIV transmission prevention programs among state Title V programs and key agencies within the states
Title V is administered by the Maternal and Child Health Bureau (MCHB) of HRSA, with whom AMCHP works closely. Title V services and their target populations make them ideal constituents for AMCHP. Authorized under the Social Security Act of 1935, Title V became a block grant as of 1981. The only federal program solely devoted to improving the health of all mothers and children, it serves over 20 million women, children, and families per year. Title V provides wrap-around MCH services to underinsured, uninsured, and publicly insured families. Title V services are unique because they include the core public health functions of assessment (data, evaluation, research), policy development (standards, guidelines, model programs), and assurance (regulation, monitoring, technical assistance, support services). Title V coordinates and integrates population-based services to avoid fragmentation and duplication in meeting families’ needs.s.
Title V perinatal HIV prevention efforts –The existing Title V efforts for prevention of
perinatal HIV transmission include
- Educating and training providers
- Informing consumers
- Developing counseling and testing protocols
- Developing and monitoring negotiated state performance measures specific to HIV/AIDS
Plans – The AMCHP cooperative agreement, in the context of existing Title V perinatal transmission efforts, plans in the first year to do the following:
- Survey all state Title V programs (MCH directors) to provide a source of very specific information about the current status of both state and Title V program policies and practices regarding HIV testing and counseling of pregnant women
- Publish a monograph on the results of the survey
- Convene a consensus workgroup of Title V representatives from the 10 public health regions
- Develop policy recommendations based on the survey and workgroup
- Convene an expert panel with representatives from various national organizations and federal, state, and local agencies
AMCHP’s 1995 policy statement on HIV testing and counseling was brief, supporting voluntary testing. As a result of the recent IOM guidelines, the revised policy is more comprehensive, supporting the goal of universal counseling and testing for all women, especially pregnant women.
Core practices. If a state selects HIV counseling and testing as one of its core practices, is it the state’s responsibility to monitor statewide in both public and private sectors? It could be set up for public measure only.
Possible collaborations. Several agencies may converge on addressing single issues. Standards of care may be coming from a variety of sources. States should be encouraged to apply for the Pregnancy Risk Assessment Monitoring System (PRAMS). Collaboration will be a large component (regional workshops, tracking, etc.) to avoid gaps as well as overlap services for children with special health care needs, e.g., the same services may fall under different rubrics; it is important that they are providing services to certain populations of children. Women, Infants, and Children (WIC) is another collaboration issue. It falls under Title V in some states but not in others. Will check on existing HIV collaborations.
- Organizational policy statement on HIV testing
- Title V information
- AMCHP information
- Publications list
at the University of Nebraska Medical Center
William Sappenfield and Scott Santibanez, assigned by CDC to CityMatCH, described CityMatCH’s unique infrastructure designed to promote communication and collaboration across the 150 urban health departments (city, county, regional, district, state) whose jurisdictions include one or more of the 200 largest U.S. cities. CityMatCH is a hybrid entity, both an applied research organization based at the University of Nebraska Medical Center and a free-standing national membership organization of health departments’ maternal and child health (MCH) programs and leaders representing urban U.S. communities. Its mission is to enhance the ability of MCH programs at the local level to improve the health and well-being of children and families in urban areas. Preventing Perinatal Transmission of HIV in U.S. Cities is an Association of Teachers of Preventive Medicine (ATPM) cooperative agreement between CDC and CityMatCH.
- Effective existing infrastructure for communication and information dissemination
- Capacity building targeting urban health departments and their community partners, including
- Urban MCH Data Use Institute. This year-long training institute focuses not on data but on effective data use. Community-based teams of policy makers, program managers, and data specialists meet face to face for skills building three times a year and undergo distance training five times a year. Teams receive mentoring as they carry out locally based projects. The goal is twofold: increasing health department capacity for using data effectively and creating change in the health department’s use of data in decision making and execution of its core functions. Individual skills development is only one step toward the goal.
- Work Group on Urban Maternal and Child Health Assessment (GUMCHA) Learning Clusters. These joint learning groups, organized and facilitated by CityMatCH, combine scientific experts and public health practitioners from selected cities to translate date and research into effective practice and policies. Focusing on a public health issue (e.g., infant mortality, perinatal transmission of HIV) or an assessment method, the Learning Clusters jointly identify strategies to develop, use, and/or disseminate new methods or approaches to prevention within and across their cities.
- To determine a baseline of local health department involvement in perinatal HIV prevention in U.S. cities, CityMatCH sent a two-page rapid fax query to its member urban health departments in May of 1999. The survey assessed current level of engagement in HIV prevention and perinatal HIV-related activities. Perinatal HIV was acknowledged as a problem, but the responses from the membership varied.
CityMatCH responded with the following call to action:
- Perinatal HIV transmission predominantly occurs in U.S. cities; its reduction requires an urban strategy.
- Current urban health department involvement is diverse in type and depth. Although work is being done, it is frequently fragmented and therefore insufficient to completely prevent perinatal HIV infection.
- CityMatCH has useful experience and expertise to offer. Its members’ needs are diverse; this cooperative agreement will enhance urban health department capabilities.
To further reduce perinatal HIV transmission, the following shifts must occur:
- Shared state-urban public health accountability
- Population-based systems of coordinated, universal perinatal prevention
- Coordinated systems for prenatal outreach and perinatal care
- Integrated team-based learning and problem-solving in communities
The CityMatCH Plan
Goal #1. Promote learning across states and urban communities with the highest concentrations of perinatal HIV transmission to identify more effective, sustainable approaches to assessment and prevention.
- Use Learning Clusters (cities, expertise, and resources) for urban perinatal HIV prevention.
- Identify urban-specific prevention strategies.
- Promote peer exchange and technical assistance.
- Achieve measurable results in HIV screening outreach.
- Actions. Establish two Learning Clusters for the prevention of perinatal HIV. In Learning Cluster 1, selected city teams and invited experts together will decide whether to develop comprehensive strategies versus a specific issue-focused approach. Learning Cluster 2 will either refine and expand on what was learned from Learning Cluster 1 or may be a more in-depth implementation of interventions and best practices.
Goal #2. Inform and engage urban health department programs and leaders in the prevention of perinatal transmission of HIV/AIDS. Types of information to be shared will include basic and clinical sciences; HIV surveillance, assessment, and prevention information; and successful strategies.
Develop community-based HIV prevention products and processes.
Disseminate information via website (www.citymatch.org), Fax Alerts to members, mailings to members, and the materials listed below
- Approaches to planning
- Guidelines for community-oriented strategies
- Descriptions of best practices
- Urban public health leadership development
- Better integration of MCH and HIV programs
- Comprehensive strategies to decrease fragmentation in the public health communityty
- Capacity building of public health agencies to carry out strategies
Rural needs. The CityMatCH model could miss many infected children who are scattered about the states in rural areas, especially in the southeast. It was asked whether the CityMatCH model could be applied to more rural areas. Clearly, lessons learned from the Learning Clusters can be shared and applied in many communities.
Learning Clusters. CityMatCH wants to build on what is known, not duplicate existing efforts. The group will help figure out what is most useful at the community level so as not to fragment and miss people. They want to first capture what leading-edge groups are doing and what works, then apply this to other groups that are not at the leading edge. Through the Learning Cluster, they will determine what it will take to get there; e.g., state collaboration, working more closely with AMCHP, state AIDS directors, etc.
State-urban relationships. These relationships are diverse, covering an entire spectrum. Some states totally neglect cities. Others have model relationships of integrating, training, and sharing. Some cities have more resources than the state; e.g., larger health departments. State grantees can be helpful for strategically selecting cities and calling on state leadership to determine what works. Political will. Some high-prevalence areas may have a need but no political will and leadership for change. CityMatCH acknowledges that resistance to change may be a problem but will look for opportunities to work with these cities, especially in Learning Cluster 2.
Teams. It was asked whether HIV-positive women who are pregnant or of childbearing age will be on the teams. The response was that communities determine who they will bring. The application process tends to bring out people who want to be part of change taking place.
Selected Materials Available
- Quarterly newsletter, CityLights
- CityMatCH annual Urban Leadership Conferences
- DUInfo, description of Data Use Institute
- Electronic NewsBriefs (biweekly)
Preventing Perinatal Transmission of HIV in U.S. Cities
- A Cooperative Agreement between CityMatCH at the University of Nebraska Medical Center and the National Center for HIV, STD and TB Prevention at the Centers for Disease Control and Prevention
Perinatal HIV/AIDS: an Urban Focus – Perinatally-acquired AIDS cases in the United States decreased nearly 70% since the 1994 introduction of Zidovudine (ZDV) for use in HIV positive pregnant women and their newborns. The number of children born with HIV, however, continues to be far above what is potentially achievable. Metropolitan areas are disproportionately affected by perinatal HIV transmission, with 85% of all pediatric AIDS cases diagnosed in the U.S. cities with populations greater than 500,000. While there are significant activities underway to prevent HIV in many of these urban areas, there is no explicit or comprehensive urban strategy to address perinatal HIV prevention. CityMatCH is one of five national organizations recently funded by CDC to address perinatal HIV transmission. Our three-year CDC-CityMatCH partnership focuses on promoting the translation of research and data into effective practice in urban communities with the highest rates of perinatal HIV.
Project Goals – This project has two goals: (1) to identify more effective approaches to the assessment and prevention of perinatal HIV transmission through facilitated learning across the urban communities most greatly affected; and (2) to inform and engage urban public health agencies and their leaders in the prevention of perinatal transmission of HIV/AIDS. This initiative also will build and strengthen community-based capacity to generate and use data strategically for more effective local programs and policies. To reach these goals, two key strategies will be used:
- Multi-city "Learning Clusters." Based on the success of earlier collaborative work in reproductive health between CDC and CityMatCH, learning clusters enable the translation of research into practice through strategic interchange between scientists and other content experts and practitioners in communities. The perinatal HIV learning clusters will include a mix of urban community teams, HIV and Maternal and Child Health (MCH) experts, and CityMatCH staff for team-based learning and problem solving in the area of perinatal HIV transmission. We plan to include up to 5 cities in each of two multi-city learning clusters. Our selection process targets the 26 cities that are both CityMatCH members and have highest prevalence of perinatal HIV infection, according to CDC.
Targeted Information Dissemination. This second strategy targets local health departments and their leaders with timely information about perinatal HIV prevention, including updates on basic and clinical scientific research; findings regarding HIV surveillance, assessment, and prevention from the public health and epidemiologic literature; and practical lessons learned as determined in our multi-city learning clusters. Information will be disseminated via proven CityMatCH communication mechanisms: our quarterly newsletter CityLights, the CityMatCH Annual Urban Leadership Conferences, Members FAX alerts, electronic NewsBriefs, and our website: www.citymatch.org
About CityMatCH – CityMatCH is a national organization designed to respond to the capacity building and policy development needs of its nearly 150 member public health departments serving America’ s largest 200 cities, as well as its many national partners. CityMatCH is an independent public health organization whose designated fiscal agent is the University of Nebraska Medical Center, a member institution of the Association of Teachers of Preventive Medicine (ATPM).
Contact Information – For more information, contact Deanna Bartee MSW, Perinatal HIV Project Coordinator, at (402) 595-1700 or email@example.com
Funding for this project is from CDC through ATPM- Project TS 344-15/15, GA #8622 and the University of Nebraska Medical Center
General Discussion – Collaborations
CityMatCH Data Use Institute Projects: Cities are responsible for their projects. They get no money from CityMatCH, only technical assistance, interest, caring, networking. Focusing on intrinsically driven projects works best; if externally driven, they tend to perform minimally.
CityMatCH integration of grantees into Learning Clusters: The expert ring of people are brought in as resources almost every time the Cluster gets together or has conference calls. Resource people are those who are kept informed and up to date on more selective issues. Grantees may serve at least as resources for materials and local contacts.
Minimal but optimal counseling: Providers need to know that counseling is not all that time-consuming. Providers resist if they think they need to spend an hour per patient. AAP learned that a demonstration showing that counseling can take minutes, not an hour, resulted in eight health departments incorporating counseling within three months at a level of 90%. Therefore, making it known that counseling can be a simple 10-minute process is highly effective.
Group interactions: ACOG plans to continue to communicate with AMCHP to form a collaboration plan. ACOG and AAP collaboration will combine obstetrician and pediatric complement of experts. AAP would like to work with the AHA, in consult with ACOG, to link mother-infant charts and make offering of counseling and testing the standard of care.
CityMatCH can learn best practices from ACOG and AAP. In turn, CitiMatCH can offer to put these other organizations in touch with local public health leaders in state partnership networks.
AAP and ACOG can share materials. For example, evaluation data will be most beneficial if the same kinds of questions are asked. Some state health departments (MA, NYS, CT) have already developed useful provider survey tools.
NPHRC is developing train-the-trainer (faculty training) materials that address provider attitudes (encouraging universal counseling and testing). Such attitudes are somewhat age related, more flexible in younger providers. If counseling and testing become part of the professional expectation, they are more likely to happen; e.g, ACOG recommendations carry weight.
All groups will make an effort to link services with hard-to-reach or high-risk women (e.g., correctional facilities, communities of color).
Communication plan: CDC will be a conduit for sharing materials that
are developed. The website will be a resource. How to make materials
available is being explored, including copyright issues for material on the
internet. Periodic conference calls or common log-on have been suggested as a way to expedite early exchange of materials.
A complete list of contact information for all Perinatal HIV Prevention Grantee Meeting participants will be included with the conference summary report. A group e-mail code is also being developed.
A Perinatal HIV Prevention Grantee website has been made available to communicate various aspects of the meeting and to provide general information about elimination of HIV perinatal transmission efforts to the grantees. This frequently updated resource contains links to many organizations and materials.