For this year’s World Breastfeeding Awareness Week, the Elizabeth Glaser Pediatric AIDS Foundation (EGPAF) recognizes the nuances and challenges women living with HIV faced when attempting to breastfeed their babies. By highlighting key takeaways from engaging conversations with four mothers living with HIV, the following piece demonstrates the nuances women around the world are forced to navigate in order to safely breastfeed their newborn children.
It’s been over 40 years since Elizabeth Glaser, acquired HIV through a blood transfusion as a result of bleeding after giving birth, unknowingly transmitted HIV to her daughter Ariel via breast milk. At the time, little was known about how HIV could be passed from mother to child, and there was no treatment for children living with HIV. Elizabeth and two friends founded the Elizabeth Glaser Pediatric AIDS Foundation (EGPAF) to advocate and raise the funds needed to research the effects that HIV had on mothers and their children. While Ariel passed away from AIDS-related complications in 1988, and Elizabeth succumbed to the illness six years later, their legacies live on through EGPAF’s global efforts to fight for an AIDS-free generation by making sure no child, youth, or family ever experiences the devastation of HIV.
Elizabeth’s efforts transformed the trajectory of the AIDS pandemic as transmission from mothers to children, also known as “vertical transmission,” have been all but eliminated in the U.S., and tremendous progress has been made in the global fight against the disease. Most notably, breakthroughs in research have shown that women living with HIV who are adherent to their medications and maintain an undetectable viral load can safely carry their babies to term and ensure they are born without HIV. Dr. Lynne Mofenson, senior HIV technical advisor for EGPAF, notes that studies from France have indicated in over 5,000 women living with HIV who started antiretroviral therapy (ART) and had undetectable virus prior to becoming pregnant, remained on ART and undetectable during pregnancy, there was no transmission during pregnancy. The PROMISE clinical trial has shown that transmission of HIV through breast milk can be reduced to well under one percent in breastfeeding women on suppressive ART.
For Cristina Jade Peña, an EGPAF Ambassador and mother living with HIV from the U.S., the lack of consistent information about breastfeeding proved confusing, disheartening, and stigmatizing as she worked with her health care providers to see if she could safely breastfeed even though she had been living with an undetectable HIV viral load for several years. “When I found out I was pregnant with my first child, I was beyond grateful and excited. The medical breakthroughs in vertical transmission gave me peace of mind in knowing that I could keep my baby HIV-free, especially as I had unknowingly acquired the virus from my mother as a baby. However, when I started to explore how to safely breastfeed my newborn with my physicians and lactation support specialist, my excitement quickly turned into confusion and disappointment. After several conversations, I was strongly discouraged from breastfeeding given that there was not enough comprehensive information about the safety of doing so.”
According to Peña, a community advocate and an EGPAF ambassador, the lack of concrete information and conflicting advice about the safety of breastfeeding her newborn proved painful, especially because she wanted to bond with her baby through breastfeeding.
“As conversations about the safety of breastfeeding continued with my medical team, over time it became clear there just was not enough information, nor a consistent interpretation of the research related to breastfeeding for women living with HIV in the U.S., that sufficiently reassured my partner and me that breastfeeding our son was a viable option for our family,” she said.
Now expecting her second child later this fall, Peña is facing the same concerns about breastfeeding and is working with her medical team to determine alternate pathways to breastfeeding. “Like with our firstborn, my partner and I are advocating access to donor breast milk from a local breast milk bank as an alternative to pediatric formula.” But Peña notes that this option, while safe, is not always the most accessible solution for many mothers living with HIV who may want to feed their babies. “The reality is that donor human breast milk, which typically requires a prescription, can often be inaccessible and cost prohibitive for many.”
Adding to the complexity of the issue, breastfeeding for women living with HIV in many of the other 17 countries where EGPAF operates, including Lesotho and Kenya, is viewed as the optimal – if not only – option for mothers living with HIV to feed their infants. But that does not mean breastfeeding in these countries is not without its challenges.
For Matsepo “Dee” Mphafi Tanka and Maurine Murenga, two EGPAF ambassadors and mothers living with HIV from Lesotho and Kenya respectively, a critical component of safe and effective breastfeeding practices is ensuring that mothers living with HIV not only enroll in antiretroviral therapy (ART) but stay on ART for the long-term. “For some women who realize they are HIV positive at their first clinic appointment or at the beginning stages of their pregnancy, they feel overwhelmed and often say, ‘I’ll only take this medication for the sake of my child during my pregnancy.’”
However, ensuring safe breastfeeding practices means more than just enrolling women in care during their pregnancy, but guaranteeing that they stay on treatment after birth. If they do not remain on treatment, a mother’s viral load can increase to detectable levels, raising the likelihood of transmitting HIV during breastfeeding. “It’s really painful, so we still need to give people information that lets them know that they need to take this medication after pregnancy. It’s not only for them but for their baby as well,” Dee says.
In Kenya, Maurine Murenga believes the country’s compulsory approach to breastfeeding is confusing and troublesome because, “women everywhere deserve the chance to choose whether or not they want to breastfeed, especially given that some mothers living with HIV and who have a high viral load may not feel comfortable breastfeeding, and do not want to risk the chance of passing the virus to their babies.”
Breastfeeding is just one aspect of the care continuum for mothers living with HIV. For Martha Cameron, a longtime HIV advocate, EGPAF ambassador, and mother of two, access to quality information is pivotal for mothers living with HIV. “First and most importantly, women need to know everything they can about their HIV status,” she says. “Sometimes women are tested during pregnancy and that’s when they find out. That can be really traumatizing. The important thing is through the work that Elizabeth Glaser did, they can safely have a baby without transmitting the virus. The key here is to know what medications they should be taking through the pregnancy and birth, and then that if they choose to breastfeed as well, they need to continue to take their therapy to be virally suppressed and ensure that they are monitoring their viral load with their health care team.”
But beyond the clinical support offered to mothers who want to breastfeed, it’s important that women have a support network of peers to help guide them through those early and sometimes difficult days of navigating medical services. “For the HIV-positive woman, you need something like that,” she adds. “You need that additional support. So, those are sort of the base things that you need, and largely you just need that additional support as a woman living with HIV.”
As the global health community continues making strides in the fight for an AIDS-free generation, more must be done to support women living with HIV who want or need to breastfeed. Dr. Mofenson notes that in resource-limited settings where formula feeding is not easily safe nor accessible, breastfeeding is essential for child survival. Health care providers need training and capacity building to enable them to provide optimal guidance to pregnant women living with HIV making decisions regarding infant feeding, and support for women living with HIV to remain on their therapy and undetectable is critical.
An important contribution to such support is actively including lactating mothers living with HIV in all spaces in which decisions are made, including but not limited to clinical studies and research design to build greater understanding of safe breastfeeding practices, informing policy and standards related to breastfeeding, and encouraging open dialogue and co-decision making with their doctors and medical team about breastfeeding. By guaranteeing their participation in these activities, and ensuring supportive policies are in place that allow all mothers to safely feed their children, women living with HIV and their health care providers can achieve a clearer understanding as to whether or not breastfeeding is the best option for them, their children, and their families.
For more information about EGPAF, go to pedaids.org.