Learning ObjectivesDescribe perinatal HIV transmission: past and

presentExplain the rationale for preconception counselingIdentify barriers and challenges to preconception

counselingDefine overall preconception health goalsDescribe benefits of perinatal counselingDescribe childbearing desires and intentionsReview current recommendations for preconception

care to prevent perinatal HIV transmission

DefinitionsPerinatal 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 HIVBetween 120,000 – 160,000 women in U.S.

currently infectedOne quarter unawareMost infections acquired heterosexuallySignificant racial disparities

57% black, 1 in 32 lifetime risk14% of all HIV, 66 percent of AIDSWorse 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 Present1994: 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 treatmentEffective combination HAART regimens: MTCT in

fewer than 2 in 100 births95% decrease in pediatric MTCT HIV between 1992 –

2005Without 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-discordanceHIV sero-discordance: One partner has HIV, the other partner

is uninfectedEstimated 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 suppressedTreatment of infected partner does not guarantee

transmission will not occurRisks and fertility recommendations specific to which

partner has HIV

Hoyt et al., 2012; Strong, 2003

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 SurveyGender-specific discussions should be

included in each visitPut knowledge of those differences into

practiceMay need to offer training, including

communication techniquesNeed to establish an environment conducive to

open communicationEncourage 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 199828-29% 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 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 GoalsImprove preconception care-related knowledge,

attitudes, and behaviors of men and womenAssure 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 CareAdvances in prevention of transmission and care of those

infectedFamily planning desires and intentionsUnintended pregnanciesUnmet needs for discussing personal and specific

reproductive plansSerodiscordancePotentially enhance fertility through optimal use of ARVOptimize maternal and infant outcomes

Hoyt et al., 2012

Potential Barriers/Challenges

Providers may be unsure how to bring up family planning or what to sayRisk 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 viewsPrevention of unintended pregnancies in women with HIV often remains secondary to other

HIV care prioritiesUndefined clinician roles

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

Potential Barriers/ChallengesProviders may…

Feel justified in reducing risk by offering “safer” options

OR

Feel complicit due to risk of vertical or horizontal transmission

Potential Barriers/ChallengesWoman may not seek care or counseling, to avoid

discriminatory or disrespectful treatment, even from health provider

May feel under close scrutiny during pregnancyPressure to meet expectations: family, friends, partnerCriticism 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 HIVPrevent unintended pregnancies in HIV-infected clientsPrevent perinatal transmission of HIVProvide family-centered care

Stronger connection between HIV services and sexual and reproductive health

Hoyt et al., 2012

HIV and the “Right” to ReproduceReproductive and sexual rights are human rights, protected

under international conventionsHIV is covered in the Americans With Disabilities Act (ADA)

under “disability” and “health status”Failure to uphold and protect human rights is considered

discriminationHIV-related discrimination reduces the likelihood women

will obtain needed health servicesPreconception 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 RecommendationsPreconception care should be addressed as a

process of ongoing care and not as a single visitComprehensive family planning and preconception

care should be integrated into routine careProviders should initiate these non-judgmental

conversations becauseAlmost 50% of pregnancies are unintendedPatients 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.pdf

http://fxbcenter.org/downloads/Counseling_Tool_HIV_Preconception_Care.pdf

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 ,

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 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 http://fxbcenter.org/downloads/Counseling_Tool_HIV_Preconception_Care.pdf

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), 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.

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.