99% of children born to HIV-positive mothers are healthy and free from HIV

"When I was diagnosed with HIV at the age of 19, doctors told me I had 'two to five' years to live." Today, 30 years later, Anna's life is vibrant: she is raising a healthy child, working hard, socializing with others, traveling, and helping those in need. Recently, she joined forces with other women living with HIV to support and inspire them to take on leadership roles in matters concerning people living with HIV.

UNICEF in Belarus has launched a project aimed at ensuring sustainability in the eradication of mother-to-child transmission of HIV. Women living with HIV are taking the lead in this initiative. The project is being implemented by the public organization "Belarusian Association of UNESCO Clubs," where Anna works. Within the framework of the project, a Women's Advisory Council has been established under the national working group on the prevention of mother-to-child transmission of HIV. The goal of this council is to enhance coordination and collaboration within the community, streamline communication with various specialists, support women living with HIV, and ensure their active participation in decision-making regarding the prevention of HIV transmission from mother to child. Currently, the council consists of six women, with Anna serving as its chairperson.

"Only with Gloves!": On Mothers, Children, and Doctors

"When I registered for my pregnancy, the doctor gently told me, 'If you're offered an abortion, you should know that it's your decision alone; no one has the right to force you." Anna shares. A little later, we meet her ten-year-old son. Just a minute of conversation is enough to understand how deeply his mother loves him and how happy she is to have him.

Until recently, HIV infection was included in the list of indications for abortion. However, this is no longer necessary: 98-99% of children born to HIV-positive mothers in our country are healthy and free from HIV. After birth, the baby receives special therapy for a month. A few months later, after completing all medical measures, he will be removed from the registry, and the story of HIV will be over for him/her.

Back in 2016, Belarus received a WHO certificate for eradicating the transmission of HIV and congenital syphilis from mother to child, becoming one of the four countries in the world to achieve this.

The WHO's decision involved implementing a series of recommendations. For instance, it was necessary to stop offering pregnant women living with HIV the option of abortion. Special attention was paid to preventing the criminalization of HIV transmission. Previously, our country had legal penalties for putting another person at risk of infection. Formally, this category could also include women with HIV during childbirth. But this issue has been resolved in Belarus. The WHO also recommended supporting the activity of women living with HIV, encouraging them to participate in decisions made regarding HIV transmission prevention.

Much of this has already been accomplished, while some aspects are still in progress.

Despite these successes, a strong misconception persists in our society: if a mother has HIV, her child will inevitably have it too. Pregnant women with HIV think about this as well, especially those at risk—those who find out about their diagnosis during pregnancy.

"She is expecting a child, her mind is filled with anticipation, and then she is told: 'You have HIV.' How does she reconcile all of this? If all her knowledge about HIV infection is limited to 'AIDS = death,' she may become confused, scared, and decide to terminate her pregnancy," Anna reflects sadly.

But these anxieties are not the only concerns for women living with HIV. The ever-present societal expectation of "you are a mother" imposes numerous pressures that a woman may not always be able to meet. This adds to her vulnerability and intensifies feelings of guilt and shame.

Anna and her colleagues provide significant support to expectant and new mothers living with HIV. They answer a wide range of questions, from serious medical inquiries to panicked concerns like "If I wash my clothes with my baby's clothes, will I harm my child?" They ensure that women adhere to their treatment regimens and provide support after discharge from the maternity hospital (as part of the project, women also receive material assistance in the form of food, children's clothing, and discharge kits).

"And it is such a joy when they come to visit us with their healthy little ones. We see how much we have accomplished together and the wonderful results of our efforts."

Much depends on the doctor: whether they explain or confuse, frighten or reassure, support the decision to give birth or suggest an abortion.

"I hear many pregnant women with HIV say, 'If I take my pills, everything will be fine, and my baby will be healthy.' They express this in exactly the same words—it’s clear they are quoting their doctor. This is encouraging."

"Fortunately, it’s no longer the case that big letters on medical records scream 'HIV.' Or that parents write letters to kindergartens to exclude their child from a group. An enormous journey has been made in this area. I remember what it was like for me in the maternity hospital: a note was attached to my baby's incubator in red ink—'Only with gloves!' Yes, they didn’t write about the HIV status, but this 'only with gloves'... I hope that such practices are long gone."

To assist doctors in better navigating the management of pregnancies for women living with HIV and to ensure quality information dissemination, Anna plans to conduct a series of webinars for specialists working with HIV-positive pregnant women. These webinars will be organized in collaboration with infectious disease specialists and epidemiologists, allowing for a more comprehensive understanding of the necessary measures and approaches.

This collaboration will not only enhance the knowledge base of healthcare professionals but also facilitate effective connections between the medical community and women living with HIV. Doctors will be able to inform their patients about the Women's Advisory Council, which will contribute to the growth and strengthening of the community. Such initiatives are crucial for fostering an atmosphere of trust and support, which in turn will help women feel more confident and secure throughout their pregnancy and parenting journey.

"I Am Not Afraid": On Women's Leadership

— If someone had told me at 19 that I would have a healthy child, a job I love, that I would travel a lot, meet people, help and educate them, I would have laughed and said, "Good dream." — Anna smiles. — Back then, I was afraid of my own shadow.

When Anna learned about her diagnosis, she was living with her brother and was very worried about the possibility of infecting him. A poster still stands vividly in her mind, depicting three modes of transmission: manicure scissors, a razor, and a toothbrush. And another one that promised people with HIV they would live "from two to five years." For a while, these posters were one of the main sources of information for the young, frightened girl.

But the more Anna learned about HIV, the less afraid she became. After working on a helpline, she became a case manager and later worked at a social support center for people who use drugs. Currently, she is employed at the Belarusian Association of UNESCO Clubs. She constantly sought knowledge, attended conferences, completed numerous training sessions, and eventually began to conduct them herself. With this knowledge came confidence in place of fear.

— Now I am not afraid. Because I know so much: the medical specifics, the legislation, my rights, and my responsibilities. Knowledge brings confidence, restores self-respect, and a sense of dignity. This is all perceived by others, automatically eliminating unpleasant situations and awkward moments.

To help more women feel confident, Anna aims to expand their access to information. The most effective approach here is through training—learning by experience.

As part of the project, a two-day training session titled "Developing Women's Leadership and Meaningful Participation of HIV-Positive Women in Preventing Mother-to-Child Transmission of HIV" will be conducted. Approximately thirty women will receive up-to-date information on various topics. They will then be able to pass on their knowledge to dozens of other women living with HIV. During the training, they will learn how to do this professionally, avoiding "kitchen therapy" with its intrusive advice and the confident assertion of "it worked for me, it will work for you."

"There are many wonderful women who are eager to help others, but they lack knowledge, skills, and confidence. We will help them move forward," Anna plans.

"The Effect We’ve Already Seen": On Collaboration

Mothers living with HIV are advised not to breastfeed their children to prevent the transmission of the virus. In Belarus, infants born to HIV-positive mothers receive infant formula free of charge. However, young mothers that Anna worked with reported a significant issue: pediatricians at clinics cannot order this formula until the child is born and discharged from the maternity hospital with feeding recommendations. After that, they must submit a request, wait for procurement, and then have it delivered to the mother. This entire process can take a month to a month and a half. Many mothers living with HIV often find themselves in dire financial situations and are unable to purchase formula. Out of desperation—and if lactation has not ceased—such a mother may begin breastfeeding, thereby increasing the risk of transmitting HIV to her child. Anna and her colleagues from the NGO brought this issue to the attention of government authorities.

"Thanks to the coordinated efforts of many people, this issue was resolved quickly. Now, all HIV-positive mothers being discharged from maternity hospitals in Minsk receive a month's supply of formula," Anna explains.

This story once again highlights the importance of collaboration between governmental and non-governmental organizations working in HIV prevention: a simple exchange of information can significantly ease the lives of many mothers and help safeguard the health of their children.

A working group has been established under the Republican Center for Epidemiology and Hygiene of Public Health to prevent mother-to-child transmission of HIV. Two women from the Women's Consulting Council are part of this group. They will be able to voice the concerns of women living with HIV to healthcare providers. Conversely, they will also be able to swiftly relay information to women—such as updates on legislative changes. The exchange of information between women living with HIV and healthcare professionals will occur more rapidly, and issues will be resolved more effectively.

"We have already seen the effect. At our first meeting, we agreed that we need to activate work at the regional level. In every region, women living with HIV should be included in the medical working groups focused on preventing mother-to-child transmission of HIV. This way, issues can be resolved quickly on the ground," Anna shares.

Anna hopes that the Women's Advisory Council will serve as a catalyst for many significant processes. She envisions it as a support system for women living with HIV, fostering the development of female leadership and volunteer movements, and strengthening inter-agency connections. It would be wonderful if, over time, women from all regions of Belarus participated—this would allow for experience sharing and collaborative problem-solving.

— "For me, this project is very feminine, multifaceted, and warm! It truly has the potential to help and make an impact. That brings me great joy," the woman smiles.