From Struggle to Advocacy: The Fight for Pregnant Women Facing Drug-Resistant TB

When Busisiwe Beko became pregnant with her second child, she felt reassured by her long-standing treatment for HIV. An experienced AIDS activist, she was confident that, like her first child, her second would also be born healthy. However, unbeknownst to her, tuberculosis (TB) was silently complicating her journey to motherhood. It wasn’t until she was five months along that Beko received the alarming diagnosis of drug-resistant TB (DR-TB), transforming her pregnancy into a harrowing battle for survival. Despite her best efforts and the initial treatment attempts at a clinic in Khayelitsha, the reality of her condition worsened. Beko recalls, “I wasn’t sure I was going to make it.” The stark truth faced by Beko and countless other pregnant women is that there are minimal treatment options for those who suffer from DR-TB. After being hospitalized seven months into her pregnancy, she was forced to delay a comprehensive treatment plan—a brutal two-year regimen—until after giving birth. Tragically, her newborn son entered the world already battling DR-TB. Every year, approximately 500,000 people globally are diagnosed with drug-resistant TB, a condition that becomes significantly more complex when coupled with pregnancy. Compounding this issue is the glaring absence of clinical trial data for treating pregnant women, as they have been routinely excluded from medical research since the 1960s. Shockingly, fewer than 1.5% of drug trials conducted between 1960 and 2013 included expecting mothers. The fallout from the thalidomide tragedy, which resulted in severe birth defects in thousands of children due to a drug prescribed for morning sickness, continues to cast a long shadow over clinical research involving pregnant women. This exclusion not only leads to a lack of data for effective treatment regimens but also perpetuates systemic discrimination against pregnant women in healthcare settings. Reports of women being judged or pressured into making drastic decisions about their pregnancies due to fears regarding drug effects are unfortunately not uncommon. A 2019 study highlighted such experiences in South Africa’s KwaZulu-Natal province, indicating a need for more compassionate and informed care for expectant mothers. Beko, now 49, has emerged as a staunch advocate for change, aiming to ensure that pregnant women receive the healthcare they deserve. Her tireless efforts are beginning to bear fruit. The World Health Organization (WHO) convened its first working group on TB during pregnancy this year, featuring Beko among its members. The group, composed of a mix of scientists, researchers, and activists, aims to bridge the knowledge gap surrounding TB treatment in pregnant women. Meanwhile, promising developments are underway with multiple trials designed to include pregnant participants. The Beat-TB trial, conducted in South Africa, is set to provide crucial insights into TB treatments that can be safely administered during pregnancy. Furthermore, the Smart4TB Consortium, with support from USAID, is initiating two trials—the Prism-TB and Breach-TB studies—to explore the efficacy of shorter treatment regimens that include pregnant women. Nicole Salazar-Austin, an assistant professor of pediatrics at Johns Hopkins University, emphasizes the pressing need for inclusivity in clinical research. The stark contrast between the advances made in HIV treatment for pregnant women and the stagnation in TB treatment highlights the urgent need for change. “It’s time for researchers to stop saying ‘we don’t have data,’” declares Beko, pushing for the collection of data that already exists within communities. As the medical community begins to recognize the importance of including pregnant women in drug trials, the potential for better treatment options for both mothers and their children becomes increasingly tangible. The road ahead is fraught with challenges, but the efforts led by advocates like Beko signal a hopeful shift towards a future where pregnant women can receive comprehensive and effective healthcare, regardless of the illnesses they face.