By guest contributors Madhukar Pai and Katri Bertram “There is no thing as a single-issue struggle because we do not live single-issue…
Family Matters: Why we Need to do More for People Affected by Tuberculosis and their Loved Ones
By guest contributor Busisiwe Beko, with Jennifer Furin
I (Busisiwe) was pregnant with my daughter when I first became sick with a drug-resistant form of tuberculosis (DR-TB). I was terrified, especially when they told me in the clinic that my “close contacts” were also at risk. It does not get any closer than sharing the same body, after all, and although I was coughing and losing weight, it was fear for what might happen to my child that preoccupied me most of all. How would the TB affect her? Would she get it too? Would the tablets I was taking to try and save my life end up hurting hers?
In spite of the fact that TB makes ten million people sick each year — and thus I certainly was not the first or only pregnant woman trying to figure out how to manage the two very different “passengers” (one badly wanted the other most certainly not) with whom I was now sharing my physical form—I quickly found out that nobody in the clinic could answer any questions for me. Fragmented into “adult” and “pediatric” world as TB services are, there was nowhere I could turn.
I felt guilty, and the things they were telling me in the clinic made me feel that way even more—since people with TB are often treated like nothing more than vehicles of infection. When my daughter was born and, unfortunately, diagnosed with DR-TB several months later, things became even more difficult. Not only did I have my own health needs, but I also had to look after the needs of my child. Although we both did our best, she did not cope well with the treatment: she became like a zombie and struggled so much.
Everything about the process of getting care for her and for me was also a struggle. We had to queue for hours, and when we did finally see the health staff, they were not equipped to deal with her as a child, me as a mother, and us as a family. The tablets she had to take did not come in child-friendly versions: they were so painful for her to swallow. I found them nearly impossible to prepare (how do you measure out ¾ of a tablet?) and give her, and feared I was likely under-dosing or overdosing her. I felt like I was set up to fail.
But we fought hard, and both my daughter and I survived. She is now a beautiful 16 year-old young woman, and I have been working as a DR-TB counselor for the medical humanitarian organization Médecins Sans Frontières (MSF) for the past decade, supporting people with DR-TB.
MSF has worked with the national, provincial and city departments of health of South Africa to introduce revolutionary changes to the way DR-TB in treated, and the past several years we have been working to make sure we take a more family-friendly approach to the services we provide.
There has always been a need for such services—especially for those tailored to vulnerable children and pregnant women—but it was our experience during the COVID-19 crisis in 2020 that made use realize how essential it is to meet families affected by all forms of TB on their home turf in their houses and neighborhoods. With many medical clinics closed or staff repurposed to working on COVID-19 instead of TB, MSF began working with its partners in communities to provide household-based services to people living with DR-TB in Khayelitsha, a peri-urban township of more than 500,000 people on the outskirts of Cape Town. Our team has been working here for two decades, supporting decentralized care in the primary clinics first for HIV and then for DR-TB. The only way to maintain services to many people living with DR-TB was to see them in their homes. In doing so, our eyes were opened to the need to work deeply in a community-based way to support the entire family.
When people are visited in their homes, it allows health care providers and teams to give the family extended time away from the chaos that often characterizes over-crowded clinics. Families and people living with DR-TB can be seen on their turf, and all of the competing health, social and economic demands that characterize their lives are on full display. The extended family can be reached in a safe and confidential manner that respects individual privacy but also allows for the development of multigenerational trust and rapport. Home-based care builds a stronger partnership—as opposed to the hierarchical and power-driven dynamics that sometimes characterize clinic-based care—and in this partnership, it can become clearer that family members and providers have common interests in seeing the family return to health and well-being.
The household-based approach also allows for the different needs of all affected family members to be met. Because of its airborne transmission, TB and DR-TB are often diseases of the family. Children with disease may be on different regimens than adults with disease, and those with disease may be on different regimens than those who need preventive treatment of infection. Often, in facility-based models of service delivery, how these different health conditions and treatments interact with on another can be overlooked, result in fragmented care that is then perpetually reinforced by the health care system. Far from being person-centered, these clinic-based models of care can actually make receiving treatment more difficult for family units struggling to make sense of what is happening to them and what they need to do as a cohesive unit.
If we are serious about ending TB in all its forms, we must recommit ourselves to providing care for people where they need it the most. Although we have come a long way towards decentralized services for people with DR-TB, we must do more to focus our work outside of the clinic. The clinic is not, after all, a human being. The clinic is not a family.
Busiswe Beko is a trained counselor who has been working with Médecins Sans Frontières (MSF) on their DR-TB program in Khayelitsha since 2011. She is an expert on supporting vulnerable populations, including pregnant women and children, and has led key psychosocial interventions for people living with DR-TB, including a community-based program for people with DR-TB and substance use disorder. She co-founded the first DR-TB support group in Khayelitsha and has trained generations of DR-TB counselors working throughout the world. With her colleagues in the patient support unit, she developed the first-ever family friendly counseling toolkit for DR-TB. She is currently completing her formal training in the field of Social Work. She is a DR-TB survivor and tireless advocate for improving care for people impacted by DR-TB.