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Table of Contents
- What Are HIV Treatment Guidelines?
- US-Based Guidelines
- Global Guidelines
- Key Information in the January 2023 US HHS Perinatal HIV Clinical Guidelines
- Taking Care of Yourself
What Are HIV Treatment Guidelines?
HIV treatment guidelines provide a lot of useful information to help healthcare providers and people living with HIV make decisions about numerous HIV-related health concerns. These include when – and with which medications – to start, stop, or change HIV treatment. There are specific guidelines for people living with HIV who are pregnant or have given birth, which also offer guidance on how to feed their infants.
The perinatal HIV clinical guidelines are prepared by groups of physicians and other professionals with special expertise in HIV treatment and prevention during pre-pregnancy, pregnancy, and the perinatal and newborn periods.
US-Based Guidelines
A branch of the US government called the Department of Health and Human Services (HHS) has put together a set of HIV treatment guidelines. HHS provides several different treatment guidelines related to HIV care, including:
- Guidelines for the Use of Antiretroviral Agents in Adults and Adolescents Living With HIV, which are the general US HIV treatment guidelines
- Recommendations for the Use of Antiretroviral Drugs During Pregnancy and Interventions to Reduce Perinatal HIV Transmission in the United States – also known as the perinatal HIV clinical guidelines – which are prepared by a group of physicians and other professionals with special expertise in HIV treatment and prevention during pre-pregnancy, pregnancy, and the perinatal (immediately before, during, and after childbirth) and newborn periods
- Pediatric Antiretroviral Treatment Guidelines, which provide treatment recommendations for children living with HIV
Most of the information in this fact sheet is to provide an overview of the perinatal HIV clinical guidelines. See our fact sheet on HIV Treatment Guidelines for more information on the adult and adolescent HIV treatment guidelines. For information on caring for children living with HIV, see our fact sheet on Care and Treatment for Children Living with HIV. See also our fact sheet on Pregnancy, Birth, and HIV for more information on having biological children while living with HIV.
All of the HHS HIV guidelines are written and reviewed regularly by groups of HIV experts, including researchers, healthcare providers, and community activists. They have been updated many times as new information and new medications become available. The full version of the perinatal HIV clinical guidelines is available here.
Global Guidelines
HIV treatment guidelines can vary based on where you live in the world. Like the US, many countries and regions have their own HIV treatment guidelines based on circumstances in that area of the world, including availability of different HIV drugs and other resources. The World Health Organization (WHO) is a massive agency that leads public health efforts worldwide and produces global guidance on HIV testing, treatment, prevention, care, and services – including during the perinatal period.
All internationally written guidelines are in agreement about certain aspects of HIV treatment. For instance, since 2015, the HHS, WHO, EACS (European AIDS Clinical Society), BHIVA (British HIV Association), and the IAS-USA (International Antiviral Society-USA) have all recommended that HIV treatment be offered to all people living with HIV, regardless of their CD4 cell count. Research has shown that people living with HIV who start treatment earlier, while their CD4 counts are still high, have a much lower risk of illness and death.
HIV treatment guidelines can vary based on where you live in the world.
However, HIV guidelines can differ between regions on many other details. Infant feeding while living with HIV is one example. The WHO recommends that women living with HIV breastfeed their infants if they are taking HIV drugs and live in an area of the world where formula feeding may not be a safe option. Studies of women living with HIV and their infants in resource-limited areas like sub-Saharan Africa and India have shown that the likelihood of transmitting HIV while breastfeeding can be as low as less than 1 percent if the birthing parent is taking effective HIV drugs.
On the other hand, birthing parents living with HIV in so-called high-resource regions, such as the US or Europe, have been told for many years to not breastfeed their babies. The EACS and BHIVA guidelines recommend that women living with HIV avoid breastfeeding since infant formula, clean water to mix it, and refrigeration to store it tend to be readily available in these areas (though that is not always the case). These guidelines are based on the belief that even an extremely low risk of a baby getting HIV from breast milk is not justified when alternatives are available but have tended not to address other important factors affecting infant-feeding decision-making. For instance, parents may want to consider breast/chestfeeding for important emotional, cultural, family, and health reasons, even if they live in an area where formula is easily accessible.
A significant change occurred on January 31, 2023, when the US perinatal HIV clinical guidelines were updated to remove language discouraging breastfeeding. They now reflect current knowledge about the low likelihood of HIV transmission through breast milk when the breastfeeding person is taking HIV drugs and has an undetectable viral load; and recommend that healthcare providers discuss infant feeding options with women and other birthing parents living with HIV and engage in shared decision-making.
In previous years, HHS, BHIVA, and EACS HIV treatment guidelines had begun to include updates acknowledging the desire of some women living with HIV to breastfeed and suggesting ways for providers to support parents considering this option. BHIVA's guidelines, like the updated perinatal HIV clinical guidelines, stress informed infant-feeding decision-making and support for parents considering breastfeeding.
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Key Information in the January 2023 US HHS Perinatal HIV Clinical Guidelines
The guidelines for pregnant people were updated in January 2023. Below is a summary of recommendations from the current perinatal HIV clinical guidelines.
Preventing HIV Acquisition in the Pregnant Person with Pre-Exposure Prophylaxis (PrEP)
HIV-negative people who may become pregnant, as well as people who are breast/chestfeeding, should be offered pre-exposure prophylaxis (PrEP) if they ask for it or express that they may be vulnerable to acquiring HIV. Providers should also have a conversation about PrEP with people for whom one or more of the following are true:
- experienced intimate partner violence
- repeatedly received post-exposure prophylaxis for potential exposure to HIV
- had condomless sex with a partner whose HIV viral load may be detectable
- had condomless sex with one or more partners of unknown HIV status
- injected drugs
- had recent or past sexually transmitted infections (STIs)
- have substance use disorder and/or use drugs as part of sex
- have a sexual partner with any of these factors
People who are HIV-negative, and have a partner living with HIV who is taking HIV drugs and has an undetectable viral load (not enough HIV in the blood for tests to measure), do not need to take PrEP because their partner cannot transmit the virus sexually. See our fact sheet on Undetectable Equals Untransmittable (U=U) for more information.
Injectable long-acting Apretude (cabotegravir) has been added to daily oral (by mouth) Truvada (tenofovir disoproxil fumarate/emtricitabine) as an option for PrEP in HIV-negative people who want to become or are pregnant. Another biomedical HIV prevention option, the dapivirine vaginal ring, has not been approved for use in the US. Oral Descovy (tenofovir alafenamide/emtricitabine) has not been approved for PrEP in people with a vagina who have sex with people with a penis (usually cisgender heterosexual women).
Caring for People Living With HIV Who May Become Pregnant
Healthcare providers are advised to ask all people living with HIV who might become pregnant whether they plan to have a biological child. If they do not, they may have a conversation about effective contraception, including potential interactions between certain HIV drugs and hormonal contraception (“the pill”). For more information, see our fact sheet on Contraception and HIV.
Healthcare providers are advised to ask all people living with HIV who might become pregnant whether they plan to have a biological child.
It is a good idea for people living with HIV who may become pregnant to get their viral load down to undetectable before trying to conceive a child. The person’s current HIV drug regimen should also be discussed since some HIV drugs are not recommended for use before or during pregnancy or breastfeeding. As with all medical decisions, the healthcare provider and patient should jointly decide on the best plan. The provider should not require their patient to use contraception, even if there is little information about the specific HIV drugs during pregnancy.
All people who want to become pregnant are advised to reduce or stop drinking alcohol, smoking tobacco, or taking street drugs, including marijuana. The perinatal HIV clinical guidelines recommend the same counseling for people living with HIV.
Getting Pregnant When One Partner Lives With HIV
If the non-birthing partner is living with HIV, taking HIV drugs, and their viral load is undetectable, they cannot transmit the virus to their partner. To be extra-sure, the HIV-negative partner can take PrEP (see section above) while having condomless sex in order to conceive a child.
PrEP for the HIV-negative partner is also an option if the viral load of the partner living with HIV is unknown or is detectable. Limiting condomless sex to times when the person trying to get pregnant is ovulating (at their most fertile) can further reduce the possibility of HIV transmission.
If the partner who is trying to become pregnant is living with HIV, it is a good idea for them to get their own viral load down to undetectable before trying to conceive. This helps to prevent HIV being passed on to their partner during condomless sex in order to conceive a child – and will reduce the chance of passing HIV on to their child.
Healthcare providers should not refuse infertility treatments based on HIV status or based on whether someone has told their partner that they are living with HIV. However, such a disclosure should be encouraged, if doing so is safe.
For more information on conceiving a child when one or both partners are living with HIV, see our fact sheet on Getting Pregnant and HIV.
HIV Drugs During Pregnancy
People who are already taking HIV drugs and are virally suppressed (very low levels of virus in the body) before becoming pregnant are generally advised to continue taking the same medications. In some cases, the dosage (amount of drug) may need to be adjusted, or different drugs might be considered, because the levels of certain HIV drugs fall too low as a result of changes in a pregnant person’s body. A person’s HIV drug regimen (combination of drugs) may need to be changed in certain specific cases. Providers are encouraged to discuss the current HIV regimen with a pregnant person, and both should decide together whether to change drugs and what to change them to.
People who are already taking HIV drugs and are virally suppressed before becoming pregnant are generally advised to continue taking the same medications.
For people who have not taken HIV drugs before becoming pregnant (called “antiretroviral-naive”), or who have taken HIV drugs before but are not taking them when they get pregnant, it is important to start treatment as soon as possible. This may mean starting HIV drugs before the results of drug resistance testing are available, and changing drugs later, if necessary. The guidelines list certain combinations as preferred for antiretroviral-naive pregnant people. However, the pregnant person and their provider may decide that a different drug combination works better in a specific situation.
If a person who is or wants to become pregnant has received long-acting injectable Cabenuva (cabotegravir/rilpivirine) to treat their HIV, they should discuss the medication with their provider. There is little information on the drug during pregnancy. Unlike daily pills, injectable cabotegravir stays in the body for months, making it more difficult to change the HIV drug regimen.
Our HIV Drug Chart includes information on what is known about specific drugs during pregnancy and breastfeeding. In many cases, little information is available because pregnant people are often not included in clinical trials for medications, including for HIV drugs.
Infant Feeding and HIV
The updated US perinatal HIV clinical guidelines now encourage informed, shared infant-feeding decision-making for women and other birthing parents living with HIV. They also discuss various potential benefits of breast/chestfeeding, and advise that healthcare providers inform parents living with HIV about the very low risk of transmitting the virus through breast milk when the parent is virally suppressed.
A growing number of studies are showing that infants are remaining HIV-negative during breast/chestfeeding when the lactating parent is on HIV treatment and has an undetectable viral load.
These updated guidelines still recommend formula or screened donor milk feeding for infants whose parent's viral load is not undetectable. They also recognize that, even in the US, not everyone has access to safe water or sufficient formula. Recent events, such as the polluted water supply in the US city of Flint, Michigan, and a shortage of formula due to the temporary closure of a factory, have made this clear.
Healthcare providers are offered guidance to counsel birthing parents around their infant-feeding options, and to support their decisions on how to feed their babies without judgment. The guidelines specifically state that Child Protective Services should not be called if a parent living with HIV decides to breast/chestfeed their infant.
A database in Great Britain has so far recorded 90 babies born to people living with HIV who were breastfed. None of the infants acquired HIV. A growing number of studies are showing that infants are remaining HIV-negative during breast/chestfeeding when the lactating parent is on HIV treatment and has an undetectable viral load. Our fact sheets Can I Breastfeed While Living With HIV? and Overview of Infant Feeding Options for Parents Living with HIV have more information on this topic.
Caring for the Newborn
It is recommended that infants born to people living with HIV receive HIV drugs to prevent them from acquiring HIV. The specific drugs and how long they should be given depend on the birthing parent’s HIV treatment status and viral load, as well as whether the infant is breast/chestfed.
It is recommended that infants born to people living with HIV receive HIV drugs to prevent them from acquiring HIV.
If the parent was taking HIV drugs during pregnancy, continues to take them as prescribed, and was virally suppressed at least four weeks before giving birth, the infant should be given zidovudine for four weeks after birth. If the parent was not taking HIV drugs during pregnancy, was not virally suppressed four weeks before delivery, or has primary/acute HIV (acquired HIV in the past several months), the infant should be treated with multiple HIV medications for two to six weeks to prevent them from acquiring HIV. Infants who are breastfed should be treated to prevent them from acquiring HIV.
Only certain HIV drugs are recommended for very young children, and the recommendations are different for infants born very prematurely (before 32 weeks after the parent’s last menstrual period). Healthcare providers in the US can call the National Perinatal HIV Hotline at (888) 448-8765, 24 hours a day, seven days a week, to get help in making treatment decisions in specific cases.
Other Information
The perinatal HIV clinical guidelines also include information on procedures to avoid during delivery, caring for people who do not know their HIV status when they are going into labor, and many other issues. There is also a section about pregnancy in transgender and gender-diverse people. In general, the same recommendations for HIV prevention, testing, and treatment apply as for cisgender pregnant people, but hormones taken for transitioning may need to be addressed in the context of pregnancy. These guidelines emphasize the need for gender-affirming shared decision-making between provider and patient.
Taking Care of Yourself
The perinatal HIV clinical guidelines are a set of recommendations to help you and your healthcare provider understand your treatment choices. They are based on the most up-to-date information from studies and clinical trials. But remember, they are only general suggestions. It is okay for you and your healthcare provider to choose therapies and approaches for your specific situation. Use the guidelines as a resource to help you and your provider make well-informed health decisions that are right for you and your family.
Special thanks to Lealah Pollock, MD, MS, of the University of California – San Francisco, for her review of this fact sheet.
