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Preconception Counseling and Education for HIV-Infected Women. Learning Objectives. Describe perinatal HIV transmission: past and present Explain the rationale for preconception counseling Identify barriers and challenges to preconception counseling Define overall preconception health goals

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learning objectives
Learning Objectives
  • Describe perinatal HIV transmission: past and present
  • Explain the rationale for preconception counseling
  • Identify barriers and challenges to preconception counseling
  • Define overall preconception health goals
  • Describe benefits of perinatal counseling
  • Describe childbearing desires and intentions
  • Review current recommendations for preconception care to prevent perinatal HIV transmission
  • Perinatal HIV transmission: “Transmission of HIV from mother to child during pregnancy, labor and delivery, or breastfeeding…”
  • Preconception Counseling: “Interventions that aim to identify and modify biomedical, behavioral and social risks to a women’s health or pregnancy outcomes through prevention and management.”

CDC, 2007; CDC, 2006

women living with hiv
Women Living With HIV
  • Between 120,000 – 160,000 women in U.S. currently infected
    • One quarter unaware
    • Most infections acquired heterosexually
    • Significant racial disparities
      • 57% black, 1 in 32 lifetime risk
        • 14% of all HIV, 66 percent of AIDS
        • Worse in the South: up to 75% of AIDS
      • 16% Hispanic/Latina, 1 in 106 lifetime risk
  • About 6000 women with HIV are giving birth each year

CDC, 2011

perinatal transmission of hiv past and present
Perinatal transmission of HIV: Past and Present
  • 1994: Study demonstrated Zidovudine (ZDV) reduced mother-to-child transmission (MTCT) risk by about 70%
    • Testing for HIV now routine in pregnancy and so is routine use of antiretroviral treatment
    • Effective combination HAART regimens: MTCT in fewer than 2 in 100 births
    • 95% decrease in pediatric MTCT HIV between 1992 – 2005
  • Without treatment and with breastfeeding: about 25%- 30% transmission risk

Burr et al., 2007; CDC, 2011

remaining perinatal transmission challenges
Remaining Perinatal Transmission Challenges
  • 100 – 200 infants infected annually in the U.S.
    • Remains the most common route of HIV infection in children
      • Almost exclusive source of all AIDS cases in children
      • Most with AIDS are of minority races/ethnicities


  • Some practitioners continue to test only women considered “high risk”
  • Lack of re-testing late in pregnancy to identify women who sero-converted since initial screen
  • Some mothers and babies still do not receive appropriate antiretroviral (ARV) treatment and prophylaxis
  • Healthcare services are not accessed: lack of preconception counseling/education/lack of prenatal care

CDC, 2007; Fowler et al., 2007

hiv sero discordance
HIV Sero-discordance
  • HIV sero-discordance: One partner has HIV, the other partner is uninfected
  • Estimated 140,000 heterosexual couples who are sero-discordant in the U.S.
    • Estimated half want to conceive at some point
      • Significant number are probably having unprotected sex to achieve conception
      • Between 20 to 80 percent of newly diagnosed HIV-positive pregnant women may have uninfected partners
  • There is decreased rate of transmission when viral load fully suppressed
    • Treatment of infected partner does not guarantee transmission will not occur
    • Risks and fertility recommendations specific to which partner has HIV

Hoyt et al., 2012; Strong, 2003

perspective of hiv infected women
Perspective of HIV-infectedwomen
  • From “Women Living Positively Survey”
    • Telephone-based survey of 700 women with HIV, across U.S.:
      • Mostly minority
      • 55%: no discussion of gender-based treatment
      • 43%: had switched providers because of communication issues
      • 57% (had been or were currently pregnant): no discussion of pregnancy and treatment options prior to becoming pregnant
      • 42%: not aware at all or not very aware of treatment options
      • Little to describe how effectively providers address preconception needs
      • Significant communication gaps

Squires et al., 2011

recommendations from the women living positively survey
Recommendations from the Women Living Positively Survey
  • Gender-specific discussions should be included in each visit
  • Put knowledge of those differences into practice
    • May need to offer training, including communication techniques
  • Need to establish an environment conducive to open communication
    • Encourage discussion on treatment, psychosocial and emotional aspects of care

Squires et al., 2011

childbearing desires and intentions
Childbearing desires and intentions
  • “Fertility Desires and Intentions of HIV-Positive Men and Women”
    • Interviews with 1,421 HIV-infected adults in 1998
    • 28-29% of HIV-infected men and women desired to have children
      • 69% of women and 59% of men who desired children expected to have at least one child in the future
    • Desire for future childbearing was not related to measures of HIV progression

Chen et al., 2001

childbearing desires and intentions1
Childbearing Desires and Intentions
  • “Understanding High Fertility Desires and Intentions Among a Sample of Urban Women Living with HIV in the United States”
    • Fertility desires 59%
    • Childbearing Intentions 66% (of those desiring a child)
    • Accurate knowledge of MTCT was low (15%)
  • Unmet need for counseling on reproductive decisions/safe childbearing

“In the absence of open discussion regarding reproductive plans and options for safe conception, women confused about how to protect their partner and achieve pregnancy may likely leave it to chance.”

Finocharrio-Kessler et al., 2010

childbearing desires and intentions2
Childbearing desires and intentions
  • “Discussing Childbearing with HIV-infected Women of Reproductive Age in Clinical Care: A Comparison of Brazil and the US”

Finocchario-Kessler et al., 2012

unintended pregnancies
Unintended Pregnancies
  • “High prevalence of unintended pregnancies in HIV-positive women of reproductive age in Ontario, Canada: a retrospective study”
      • 56% HIV infected women surveyed stated their last pregnancy was unintended (n=416)
        • Marital status and never having given birth were significantly associated with unintended pregnancy

Loutfy et al., 2012

overall preconception health goals
Overall Preconception Health Goals
  • Improve preconception care-related knowledge, attitudes, and behaviors of men and women
  • Assure ALL women receive preconception care services so they may enter pregnancy in optimal health
  • Reduce risks during inter-conception period
  • Reduce disparities associated with adverse pregnancy outcomes

CDC, 2012

rationale for hiv related preconception care
Rationale for HIV-Related Preconception Care
  • Advances in prevention of transmission and care of those infected
  • Family planning desires and intentions
  • Unintended pregnancies
  • Unmet needs for discussing personal and specific reproductive plans
  • Serodiscordance
  • Potentially enhance fertility through optimal use of ARV
  • Optimize maternal and infant outcomes

Hoyt et al., 2012

potential barriers challenges
Potential Barriers/Challenges
  • Providers may be unsure how to bring up family planning or what to say
    • Risk of transmission still exists
      • Different degrees of risk of HIV transmission
        • Depend on HIV concordance/discordance, fertility methods, health status, viral load, etc.
  • Assumption that children are not desired
    • Political resistance, differing ideological views
  • Prevention of unintended pregnancies in women with HIV often remains secondary to other HIV care priorities
  • Undefined clinician roles

Kemper, 2008; Strong, 2003; Hoyt et al., 2012

potential barriers challenges1
Potential Barriers/Challenges
  • Providers may…
    • Feel justified in reducing risk by offering “safer” options


    • Feel complicit due to risk of vertical or horizontal transmission
potential barriers challenges2
Potential Barriers/Challenges
  • Woman may not seek care or counseling, to avoid discriminatory or disrespectful treatment, even from health provider
  • May feel under close scrutiny during pregnancy
    • Pressure to meet expectations: family, friends, partner
    • Criticism and questions about taking medications
  • Antenatal classes, unless specialized, may not meet needs of HIV-infected pregnant women
    • Commonly focus on vaginal delivery and breastfeeding

Hawkins et al., 2005

what are the benefits of providing preconception counseling
What are the Benefits of Providing Preconception Counseling?
  • Meet reproductive needs of HIV-infected women and their partners
  • Address fertility desires and intentions of those living with HIV
  • Educate and inform of the safest fertility options for HIV-concordant and HIV-discordant couples
  • Optimize maternal and fetal health

Hoyt et al., 2012

what are the benefits of providing preconception counseling1
What are the Benefits of Providing Preconception Counseling?
  • Protects the rights and health of those living with HIV
  • Prevent unintended pregnancies in HIV-infected clients
  • Prevent perinatal transmission of HIV
  • Provide family-centered care
    • Stronger connection between HIV services and sexual and reproductive health

Hoyt et al., 2012

hiv and the right to reproduce
HIV and the “Right” to Reproduce
  • Reproductive and sexual rights are human rights, protected under international conventions
  • HIV is covered in the Americans With Disabilities Act (ADA) under “disability” and “health status”
  • Failure to uphold and protect human rights is considered discrimination
    • HIV-related discrimination reduces the likelihood women will obtain needed health services
  • Preconception counseling and information should be available and provided on preventing perinatal HIV transmission and optimizing maternal and infant health

Gable et al., 2008

current recommendations
Current Recommendations
  • Discuss childbearing intentions with all women of childbearing age on an ongoing basis throughout the course of their care.
  • Include information about effective and appropriate contraceptive methods to reduce the likelihood of unintended pregnancy.
  • During preconception counseling, include information on safer sexual practices and elimination of alcohol, illicit drugs, and smoking, which are important for the health of all women as well as for fetal/infant health, should pregnancy occur.
  • When evaluating HIV-infected women, include assessment of HIV disease status and need for antiretroviral therapy (ART) for their own health.
  • Choose an ART regimen for HIV-infected women of childbearing age based on consideration of effectiveness for treatment of maternal disease, hepatitis B virus disease status, teratogenic potential of the drugs in the regimen should pregnancy occur, and possible adverse outcomes for mother and fetus.

Source: Recommendations for Use of Antiretroviral Drugs in Pregnant HIV-1-Infected Women for Maternal Health and Interventions to Reduce Perinatal HIV Transmission in the United States,, Updated July, 2012

current recommendations1
Current Recommendations
  • Preconception care should be addressed as a process of ongoing care and not as a single visit
  • Comprehensive family planning and preconception care should be integrated into routine care
  • Providers should initiate these non-judgmental conversations because
    • Almost 50% of pregnancies are unintended
    • Patients may be reluctant or afraid to bring it up

Source: Recommendations for Use of Antiretroviral Drugs in Pregnant HIV-1-Infected Women for Maternal Health and Interventions to Reduce Perinatal HIV Transmission in the United States,, Updated July, 2012



final thoughts
Final Thoughts
  • If providers do not /implement promote preconception counseling and education, the need will not disappear…it will simply remain unaddressed
  • Barriers and stigma still exist for those with HIV who want to have a family
  • Women and men living with HIV are no different in their desires to have children.
  • Many women living with HIV have unplanned pregnancies.
  • Effective preconception education and counseling helps to:
    • Provide the best chance for good health and outcomes for those living with HIV and their infants
    • Meet family planning and reproductive needs of those living with HIV
    • Educate those living with HIV on the safest and most effective reproductive options for childbearing, prevention of HIV transmission, and pregnancy prevention

Gable et al., 2008; FXB Center, 2012; Hoyt et al., 2012 ,



Thank You!

  • AIDSinfo (2012). Recommendations for Use of Antiretroviral Drugs in Pregnant HIV-1-Infected Women for Maternal Health and Interventions to Reduce Perinatal HIV Transmission in the United States. Retrieved from
  • Centers for Disease Control and Prevention (2006). Revised Recommendations for HIV Testing of Adults, Adolescents, and Pregnant Women in Health-Care Settings. MMWR 2006; 55(No. RR-14): 1-17.
  • Centers for Disease Control and Prevention (2011). HIV among women. Retrieved from
  • Centers for Disease Control and Prevention (2012). HIV/AIDS statistics and surveillance.
  • Finocchario-Kessler, S., Bastos, F. I., Malta, M., Anderson, J., Goggin, K., Sweat, M., ... & Kerrigan, D. (2012). Discussing childbearing with HIV-infected women of reproductive age in clinical care: a comparison of Brazil and the US. AIDS and Behavior, 16(1), 99-107.
  • Fowler, M. G., Lampe, M. A., Jamieson, D. J., Kourtis, A. P., & Rogers, M. F. (2007). Reducing the risk of mother-to-child human immunodeficiency virus transmission: past successes, current progress and challenges, and future directions. American journal of obstetrics and gynecology, 197(3), S3-S9.
  • FXB Center (2012). The HIV and Preconception Care Toolkit. Retrieved from
  • Gable, L., Gostin, L. O., & Hodge Jr, J. G. (2008). HIV/AIDS, Reproductive and Sexual Health, and the Law. American Journal Of Public Health, 98(10), 1779-1786.
  • Hawkins, D. D., Blott, M. M., Clayden, P. P., De Ruiter, A. A., Foster, G. G., Gilling-Smith, C. C., & ... Taylor, G. G. (2005). Guidelines for the management of HIV infection in pregnant women and the prevention of mother-to-child transmission of HIV. HIV Medicine, 6(s2), 107-148. doi:10.1111/j.1468-1293.2005.00302.x
  • Hoyt, M. J., Storm, D. S., Aaron, E., & Anderson, J. (2012). Preconception and contraceptive care for women living with HIV. Infectious Diseases in Obstetrics and Gynecology. doi: 10.1155/2012/604183.
  • Kemper, C. A. (2008). Pregnancy Counseling in HIV. Infectious Disease Alert, 28(1), 3-5.
  • Loutfy, M. R., Raboud, J. M., Wong, J., Yudin, M. H., Diong, C., Blitz, S. L., ... & Walmsley, S. L. (2012). High prevalence of unintended pregnancies in HIV‐positive women of reproductive age in Ontario, Canada: a retrospective study. HIV medicine.
  • Loutfy, M. R., Sonnenberg-Schwan, U., Margolese, S., Sherr, L., & on behalf of Women for Positive Action. (2012). A review of reproductive health research, guidelines and related gaps for women living with HIV. AIDS care, (ahead-of-print), 1-10.
  • Strong, C. (2003). Reproductive assistance for HIV-discordant couples. American Journal of Bioethics, 3(1), 57-60.
  • Squires, K. E., Hodder, S. L., Feinberg, J., Bridge, D. A., Abrams, S., Storfer, S. P., Aberg, J. A. (2011). Health needs of HIV-infected women in the United States: insights from the women living positive survey. AIDS Patient Care STDS. 2011 May;25(5):279-85.