Learning Objectives
 Describe perinatal HIV transmission: past and
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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
Definitions
 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
 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
 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
 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
Why?
 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: One partner has HIV, the other partner
is uninfected
 Estimated 140,000 heterosexual couples who are serodiscordant 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 HIVpositive 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  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
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Squires et al., 2011
Significant communication gaps
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
 “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
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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
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 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
 “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
 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
 Advances in prevention of transmission and care of those
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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
 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/Challenges
 Providers may…
 Feel justified in reducing risk by offering “safer” options
OR
 Feel complicit due to risk of vertical or horizontal
transmission
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?
 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
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
 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
 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,
http://aidsinfo.nih.gov/contentfiles/lvguidelines/perinatalgl.pdf, Updated July, 2012
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,
http://aidsinfo.nih.gov/contentfiles/lvguidelines/perinatalgl.pdf, Updated July, 2012
http://fxbcenter.org/downloads/Counseling_Tool_HIV_Preconception_Care.p
df
http://fxbcenter.org/downloads/Counseling_Tool_H
IV_Preconception_Care.pdf
Final Thoughts
 If providers do not /implement promote preconception counseling and
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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 ,
Questions?
Thank You!
References
 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 http://aidsinfo.nih.gov/guidelines
 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 http://www.cdc.gov/hiv/topics/women/index.htm
 Centers for Disease Control and Prevention (2012). HIV/AIDS statistics and
surveillance.
References
 Finocchario-Kessler, S., Bastos, F. I., Malta, M., Anderson, J., Goggin, K.,
Sweat, M., ... & Kerrigan, D. (2012). Discussing childbearing with HIVinfected 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
http://fxbcenter.org/downloads/Counseling_Tool_HIV_Preconception_Care.p
df
 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.
References
 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),
107148. 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.
References
 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.