Tomorrow, May 17, an event on Capitol Hill in Washington DC will celebrate 15 years of the U.S. President’s Emergency Plan for AIDS Relief (PEPFAR). Through PEPFAR, the U.S. government has invested nearly $75 billion in the global HIV/AIDS response over the last 15 years and has saved more than 13 million lives. Alongside PEPFAR, the event is co-hosted by three of the earliest recipients of its funding: mothers2mothers (m2m), the Elizabeth Glaser Pediatric AIDS Foundation (EGPAF), and World Vision. Johnson & Johnson, an important corporate partner in PEPFAR’s DREAMS initiative, will also be participating.
Among the highlights of the event will be a South African mother and m2m employee living with HIV—Babalwa Mbono—and her teenage daughter—Anathi. Babalwa and Anathi’s own experiences with HIV illustrate PEPFAR grantees’ incredible impact in sub-Saharan Africa and the importance of efforts to reach not only HIV-positive mothers and babies, but children, adolescents and families in order to stop the vicious cycle of HIV and eradicate the epidemic.
This is not Babalwa and Anathi’s first trip to the U.S. on behalf of m2m. Last fall, they shared their story in New York City during the opening week of the United National General Assembly at an event hosted by mothers2mothers (m2m) and our longtime partner Johnson & Johnson. In advance of that visit, writer Hallie Levine captured their remarkable story for Johnson & Johnson, and how they are now paying it forward to help everyone imagine an HIV-free future.
“When I was eight months pregnant with my second child, Anathi, I learned I was HIV-positive during a routine test.
I went into shock.
I kept asking the counselor at the clinic if she was sure; I wanted to believe it was some cruel joke. I looked and felt perfectly healthy, unlike my older sister, who had died of AIDS-related tuberculosis several years earlier.
I went home and angrily confronted my husband. He denied he’d infected me, but I made him go straight to the clinic, where he, too, tested positive. He was deeply ashamed, and kept apologizing, but I was furious.
I kept picturing my sister, so weak and emaciated, at the end of her life. I worried that my baby would be born with HIV, and that I wouldn’t live long enough to care for him or her. I felt lost and afraid, with no idea what to do.
Finding a Glimmer of Hope
That’s when my counselor told me about mothers2mothers, which she described as a support group for women who were HIV-positive. I was connected with a Mentor Mother, a local mom living with HIV who had been trained as a front-line healthcare worker.
She reassured me that my diagnosis was not necessarily a death sentence for either me or my baby. She also told me about antiretroviral treatments (ARVs) that would greatly reduce the chances of me transmitting HIV to my baby during my pregnancy.
There was another pregnant mother in my support group, and having someone else to voice my fears to was very helpful because my husband was still in denial and wouldn’t talk about it. I began to feel empowered—like I was finally in control of my life after months of feeling like a victim.
Still, I was terrified when I went into labor. The happiest moment of my life had been giving birth to my first child, but when I delivered Anathi and held her in my arms, all I could think of was whether or not she was HIV-positive.
She was tested at birth and periodically for months afterward, but we could not definitely rule out infection until she was 9 months old. Those first few months of her life weren’t spent celebrating her first smile, the first time she sat up or the first time she crawled. I was literally living in fear.
I also wasn’t able to breastfeed her, like I did my son, because of concerns about HIV transmission, and I felt guilty about that. Thankfully, I had the other women in mothers2Mmthers, a whole new community of sisters who understood what I was going through.
When I learned Anathi was HIV-negative, they were the first people I told.
Giving Back—and Gaining So Much
I was so grateful that I had mothers2mothers in my life that I agreed to become a Mentor Mother.
I wanted to give back to a group that had given me so much. It was empowering for them, but also for me. It was also a great opportunity to work in a healthcare environment in which I could learn more about some of the research and treatments for HIV.
Thankfully, I remained asymptomatic for eight years until 2010, when I went on antiretroviral medications and was able to get the disease under control. My doctors are optimistic I’ll live a full, long life. My husband went on antiretroviral medications in 2005 and is doing great.
It’s been nothing short of miraculous that I’ve been able to see my babies become teenagers. I told Anathi that I was HIV-positive last year, when she was 13. It’s very difficult to disclose this type of information to your child. I worried about how she would take it. I could tell she was shocked and upset, but I reassured her that I was still in good health and that she wasn’t infected.
But now that she’s a teenager, I’m faced with the challenge of letting her out into the world. Her friends are starting to have sex, and some are pregnant and a few even have HIV. I’ve made sure we talk openly about HIV at home, and I’ve made it quite clear to Anathi that while I feel she’s too young for sex, if she does decide to have it, she needs to insist that her partner wear a condom.
It’s not easy for any parent to have these conversations, but it’s important, since we can’t be with our children 24/7. We need to give them the tools to make their own informed decisions.
Over the last 14 years I’ve gone from counseling other women on HIV and family planning to training other mentors and seeing them go on to have fulfilling careers as nurses and social workers.
Almost 99% of babies in mothers2mothers’ South Africa programme test negative for HIV, and that makes me thrilled. I feel like I’ve done my job. I’ve watched countless pregnant women break down when they tell me they have HIV—and then helped build them back up.
These mothers face so many challenges, yet they all come back for follow-up visits proud and determined. And I’m determined to always be there for them.”
“When my mom first told me she was HIV-positive, I was shocked. I had always suspected she had some sort of disease, since she was always taking pills, but I never thought it would be HIV.
My first thought was she would die. I was afraid of her leaving us. I was also worried that I might have HIV, even though my mom reassured me that I had been tested repeatedly as a baby and was always HIV-negative.
Two days after my mom revealed her news, one of my friends confessed to me she was worried she might have HIV because she had recently slept with an older man. I decided that we should both go to mothers2mothers and get tested.
It was the right move. I was reassured that I was healthy, and I was also able to access free counseling there. After that visit, I felt more comfortable talking about my mom’s diagnosis with her, and I learned more about mothers2mothers, and even read some of my mom’s mentoring books.
Taking Action: Like Mother, Like Daughter
Since then, I’ve set up a school counseling group to talk about HIV and sex with my classmates, as well as a drama group that performs plays that discuss safe sex. My peers really don’t talk about it, but it’s something that we need to be concerned about.
Most of my friends aren’t getting enough information about HIV. Many of the girls I hang out with are now sexually active, and some of them don’t take HIV seriously and have unprotected sex to make their boyfriends happy. I always, always stress to them how important it is to ‘condomize,’ and thankfully some of them are starting to listen.
I know these are issues I will also grapple with one day, when I’m in a serious relationship, but right now I’m not ready. When I eventually get into a relationship, I’ll be doing it on my own terms, and I won’t let my boyfriend pressure me into anything I’m uncomfortable with, like unsafe sex.
I still have some anxiety about my mom having HIV—for example, I always worry whether she’s sleeping enough and eating enough when we’re apart. And I still lie awake at night wondering if she will die. At those times, I feel like I’m the overprotective, anxious mother and she’s the daughter.
But I know the antiretroviral medications she’s on keep her healthy, and I know she wants me to live my life without fear.
Ultimately, her HIV status has made our relationship stronger and brought us closer together. I take strength in our love and feel confident that our bond will get me through all the future challenges I have yet to face.”