1. Family-Centered Case Management An Essential Component in Reducing Mother-to-Child HIV Transmission CitiMatCH Expedition 2004: Exploring the Boundaries of Urban MCH Portland, September 11-14, 2004 Mary E. Caffery, RN, MSN University of California, San Diego Mother, Child & Adolescent HIV Program

2. Scope of the HIV Epidemic in the U. S. Among Women and Children AIDS in women has risen from 7% early in the epidemic to 24% of adult cases today 141,000 AIDS cases in women reported through June 2001 5-6,000 HIV positive women give birth annually 280–370 babies continue to be born each year with HIV infection CDC, 2003

3. Mother to Child HIV Transmission Without antiretroviral therapy during pregnancy, mother- to-child transmission has ranged from 16%–25% in North America and Europe 21% transmission rate in the US in 1994 Pediatric AIDS Clinical Trial Group 076 defined role of zidovudine (ZDV) in reducing transmission With use of ZDV, transmission was 11% in 1995 Risk of perinatal transmission can be <2% highly active antiretroviral therapy (HAART) elective cesarean section (C/S) as appropriate formula feeding

4. San Diego 2.9 million residents 35,000 births/yr 16 labor and delivery sites 12% of recent AIDS cases were women cases were women 40 HIV + pregnant women/year women/year

5. California Legislation Perinatal HIV 2003 Dutra Bill AB 1676 All prenatal providers required to include HIV testing as routine, with Hepatitis B screening Offer test at delivery Report results

6. Poverty, language barriers, illiteracy, Substance abuse, mental illness, domestic violence domestic violence Inadequate transportation, unstable housing, Unemployed Inadequate or lack of insurance HIV infected women often face multiple challenges accessing HIV services, prenatal care and postpartum care:

7. Barriers Urban health care systems are complex and often difficult to navigate, especially by clients who do not speak English, experience distrust with systems, are fearful, depressed or are stigmatized with HIV or other issues

8. System Barriers Community prenatal care providers lack expertise in the delivery of services to HIV infected pregnant women. Traditional HIV case management programs lack capacity to provide prenatal guidance, or manage pregnancy related health and psychosocial issues.

9. Goals To promote optimal maternal and infant health through improved access to prenatal and HIV services Comprehensive and integrated case management for HIV infected pregnant women will improve utilization of prenatal care, HIV care, interventions to reduce perinatal HIV transmission and infant diagnostic screening

10. The Perinatal HIV Collaborative distributed 10,000 HIV brochures in English and Spanish to perinatal providers promoting testing and referral of HIV infected clients for care and case management Prenatal providers received training in HIV testing for pregnant women and availability of services Utilizing Title I and Title IV funding, a University - based maternal child HIV program implemented a family-centered HIV case management program to integrate HIV care and prenatal care goals Accomplishments

11. Highly skilled, bi-lingual clinical social workers with extensive experience in women’s health provided comprehensive social services including outreach, case management, mental health assessments, psychosocial counseling, health education, partner testing and postpartum follow-up for the mother and her infant Perinatal HIV Case Management Services

12. Goals of Case Management Services Assistance with basic needs: housing, transportation, food, child care, housing, transportation, food, child care, Help obtaining health benefits, accessing prenatal care Coordination of health and social services: Substance abuse, mental health dental, legal, peer-support, childbirth education, parenting classes employment/school Substance abuse, mental health dental, legal, peer-support, childbirth education, parenting classes employment/school Referrals to health professionals community agencies HIV education for clients, partners, families and the community

13. Prenatal Case Management Services Initiated immediately at referral from test site, obstetric office and continued post-partum Case managers conduct extensive psychosocial assessment and developed family centered treatment plans Visits conducted at clinic and home Average contact:Bi-weekly face-to-face Weekly phone calls

14. Case Management of HIV Exposed Infants Discharge planning with ZDV prophylaxis for 6 weeks HIV diagnostic testing (PCR) to establish or rule out HIV infection as early as possible Linkages to an HIV specialist, primary care Long-term followup Provide anticapatory guidance and social services for the family

15. Case Management of Postpartum Women Primary and HIV specialty care OB/GYN and family planning services Mental health and substance abuse treatment Coordination of care for the woman & family Support services for the family

16. With intensive case management: Clients addressed behavioral goals to reduce risk for mother -to-child HIV transmission Reduced substance use and increased use of recovery programs More women and partners practiced safer sexual activity More women increased participation in general prenatal wellness measures: improvements in nutrition less smoking more exercise

17. Results 100% of women obtained 100% of women obtained prenatal care prenatal care 92% of women were retained in care 92% of women were retained in care 90 % of women obtained funding for prenatal services 90 % of women obtained funding for prenatal services

18. Results 92% of clients actively participated in health education 100% received substance abuse education, adherence counseling and safer sex education 100% of women received mental health assessments and referrals for supportive services

19. Results 100% of clients obtained ante-partum antiretroviral medication to prevent perinatal HIV transmission 96% of women received intra-partum antiretroviral medication 100% of newborns received ZDV prophylaxis

20. Results 100% of clients obtained at least three lab tests to confirm infant diagnosis No cases of Mother-to-Child HIV transmission

21. Key Players County of San Diego Department of Health & Human Agency (HHSA) Funded brochure, provided HIV education, provider education and public health nursing services, offered HIV testing, and provided outreach and case management through Ryan White Title I funds UCSD Mother, Child & Adolescent HIV Program Sub-contractor with County HHSA for Case Management Services for Women and Children. Provided expertise in HIV and reproductive health care, infant screening and medical care. Provided Ryan White Title IV funding for wraparound HIV services for families. Retained social worker with MSW/MPH, extensive experience in women’s health works with health care team to integrate HIV/Prenatal care. Collected data and conducted evaluation to monitor outcomes Community Based Agencies: Southeast Abundant Resource Center: Community agency provides strollers, car seats, and baby supplies to families. Christie’s Place: Community agency provides counseling, childcare, support groups, and personal hygiene products to families

22. Lessons Learned What works? Collaboration works! An integrated system of educating providers and consumers increased testing and referrals for care Focused efforts on the elimination of perinatal HIV transmission are necessary especially in communities that do not have high HIV seroprevalence.

23. Lessons Learned Integration and creative use of funding stretched limited resources Integration and creative use of funding stretched limited resources The group delegated the tasks to the most logical providers: MCH Division) distributed the brochures and the Division of Community Epidemiology, as a subcontractor with the State/CDC perinatal HIV initiative conducted provider training The HHSA Office of AIDS Coordination funded case management, and the University HIV program provided case management and co-located HIV, reproductive health and pediatric follow-up

24. Challenges What doesn’t work? Inadequate funding. More funding is needed to fully implement this community wide approach What would we do differently: This program would have been even more effective if we had obtained additional funding to permit smaller case management caseloads

25. Overcoming Barriers Greatest barrier : Lack of adequate attention on HIV and women results in limited resources for outreach, care, and case management How are barriers being overcome? Continuing efforts to educate community Collaboration with the AIDS Education and Training Center to train more providers and Regional Perinatal System to promote HIV testing and care during pregnancy Private funding has been secured for social marketing and distribution of brochures More funding is being sought to expand case management program

26. What is the take home message from this promising practice? When a community collaboration is committed to reducing mother to child HIV transmission, they can organize resources and activities to inform the community, educate the health care system, and provide the case management, which effectively links the pregnant woman, and her family to the specialized care that will promote maternal/child health and reduce the spread of HIV

27. References Public Health Service Task Force. Recommendations for Use of Antiretroviral Drugs in Pregnant HIV-1-Infected Women for Maternal Health and Interventions to Reduce Perinatal HIV-1 Transmission in the United States, June 23, 2004, http://aidsinfo.nih.gov/guidelines/perinatal http://aidsinfo.nih.gov/guidelines/perinatal Revised Guidelines for HIV Counseling, Testing, and Referral and Revised Recommendations for HIV Screening of Pregnant Women, MMWR, November 9, 2001/ Vol 50/ RR-19. http://aidsinfo.nih.gov/guidelines http://aidsinfo.nih.gov/guidelines National Pediatric and Family HIV Resource Center. Follow-up care for infants born to mothers with HIV infection. Newark, NJ: University of Medicine and Dentistry of New Jersey; 2001 New York State Department of Health AIDS Institute. Pediatric and Adolescent HIV Guidelines. In: Criteria for the Medical Care of Children and Adolescents with HIV Infection. http://www.hivguidelines.org/public_html/center/clinical-guidelines http://www.hivguidelines.org/public_html/center/clinical-guidelines Internet-based library of materials on mother and child HIV infection can be found at http://WomenChildrenHIV.org http://WomenChildrenHIV.org

28. Contact Information Mary E. Caffery, RN, MSN, UCSD Mother, Child & Adolescent HIV Program 150 W. Washington St., #100 San Diego, CA 92103 619-543-8080mcaffery@ucsd.edu