By Pauline Amuge Mary Kayiga, Research Coordinator,
Baylor College of Medicine Children’s Foundation-Uganda
As we near the deadline for the 2020 End TB milestones, it’s time to take stock of our efforts as set out in the World Health Organization (WHO) roadmap towards ending TB in children and adolescents, using a client-centred lens. Of particular interest are children and adolescents living with HIV. This year, we aimed for a 35% reduction in the number of TB deaths from 2015 figures, a 20% reduction in the TB incidence rate and zero TB-affected families facing catastrophic costs due to TB.
Children now have access to child-friendly, dispersible, fixed-dose combinations of TB drugs, together with newer, shorter TB preventive therapy regimens, such as three months of isoniazid with rifapentine. While acknowledging progress to date, we still have more to achieve in terms of increasing equitable access to affordable, shorter TB treatment and preventive regimens, more sensitive point-of-care TB diagnostics and client-centred approaches to delivering TB care.
The story of Max
I first met Max* (*not his real name) when he was diagnosed with HIV at the age of 6.5 years. With a weight of 20.6kg, he just qualified for the WHO-recommended dolutegravir-based first-line antiretroviral therapy (ART) regimen, which he started within seven days of his HIV diagnosis. All seemed well, but two months later, he was diagnosed with pulmonary TB and started on paediatric anti-TB medicines. He also had the opportunity to receive six months of isoniazid mono-therapy TB preventive therapy (TPT), the most commonly available TPT regimen, after completion of the TB disease treatment course to prevent any TB reinfection, as recommended for children living with HIV.
About four weeks before completing his TPT course, he developed drug-induced liver injury, along with hepatitis A. This was a reality check for the clinical team on managing a child living with both TB and HIV in the era of “test-and-treat” and scaling up TB preventive treatment for children living with HIV. The anticipated drug-to-drug interactions and liver toxicity during co-administration of HIV and TB medicines require proactive monitoring if we are to further reduce TB-related deaths in children living with HIV.
So, as stakeholders in TB care, let’s strive to change the story of preventable TB being the leading cause of death for people living with HIV: 251,000 people living with HIV died due to TB in 2018. Out of the 10 million people who were living with TB in 2019, 1.1 million were children. This puts us far from reaching the End TB Strategy 2020 milestones, which apply as much to children as to adults.
As of 2019, we have achieved only a 6.3% cumulative reduction in the TB incidence rate against the targeted 20% and an 11% reduction in TB deaths against the targeted 35%. There are various global, regional and national efforts being undertaken to work towards achieving these targets from now until 2030, with interim milestones set for 2020 and 2025. However, achieving these milestones seems increasingly unlikely if we don’t step up the collaborative pace.
Overcoming challenges: Five steps towards change
To improve the quality of TB care for children, one of the most important areas to focus on is overcoming major challenges at the client and healthcare worker level. Have we understood the client’s perspective of client-centred TB care? Who voices the perspectives and choices of children and adolescents?
As a parent, I expect care that offers me the opportunity to choose from options, such as regimens, service delivery and monitoring models. Often, TB care is delivered as a one-size-fits-all approach. In order to refocus on client-centred care at various levels in both the HIV and TB communities in a way that ensures quality care and accountability, here is what we need to rethink and do:
- Increase the level of confidence in making a TB diagnosis in children, especially for frontline healthcare workers, by integrating TB care (screening, prevention and treatment) into the mainstream primary healthcare settings. In this way, frontline healthcare workers should be able to deliver child and adolescent TB care services as part of primary healthcare systems to reduce the missed opportunities for TB (and HIV) case finding. Minimal progress has been made on identifying highly sensitive point-of-care diagnostic tests for TB in children. The difficulty in obtaining acceptable biological samples is further confounded by the frequently negative bacteriological diagnostic test results in children, especially those living with HIV. Ongoing research in seeking the most accessible biological samples and the most accurate TB tests for children living with HIV should be augmented with competency-based training for frontline healthcare workers in the use of validated, WHO-recommended, diagnostic algorithms for child and adolescent TB. In addition, healthcare workers need readily available consultative resources that can be virtually accessed at minimal costs.
- Increase equitable access to shorter and more feasible TB preventive regimens, along with training of healthcare workers to improve the uptake and completion of TPT among children living with HIV and children living with TB clients. To increase demand for, and completion of, TB preventive therapy, populations at higher risk of TB infection and disease should have access to knowledge resources on TPT. While the newer, shorter and better options of TPT may improve uptake, they may not yet be locally available. Further, the required additional clinic visits amidst transportation difficulties can create barriers to effective TB prevention. So, now more than ever before, if we are serious about client-centred care, we must address the need for client-centred differentiated TB service delivery.
- Create paediatric ART options with better toxicity profiles, low pill burden and amenable delivery approaches to improve paediatric HIV and TB co-infection treatment outcomes. Healthcare workers must be trained and able to perform monitoring to identify common yet detrimental drug-drug interactions. In addition to client education, national guidelines must clearly spell out identification and management of commonly anticipated side-effects due to co-prescription of ART and TB medicines.
- Advocate for and/or implement national TB research agendas that highlight the need for implementation research aimed at improving quality of paediatric TB care while reducing the research-practice gap, especially in resource-limited settings. The Global Accelerator for Paediatric-formulations, led by the World Health Organization and CHAI, must continue critical work on prioritizing paediatric anti-TB drug formulations for development. We also need to increase TB funding to US$15 billion per year, including $2 billion for TB research, in order to reach the UN High-Level Meeting on TB’s funding targets.
- Ally with policy makers, politicians, communities and civil society in advocating for quality TB care, funding for equitable access to child and adolescent TB medicines and diagnostics, client-centred and integrated service delivery approaches, and research to improve TB care. There is important political movement around paediatric TB at the global level, including the Rome Action Plan and the High-Level Dialogue on Paediatric HIV and TB in Children Living with HIV. This must be galvanized to develop, introduce and scale up optimized diagnostics, preventive therapy and treatment for TB among children living with HIV, as well as improve access to paediatric HIV diagnostics and optimal ARVs.
Accountability and advocacy to End TB
Fortunately, Max recovered without complications from the drug-induced liver injury, although he was unable to complete the TPT course and may be at risk of contracting TB again in the future.
Ending TB deaths among children includes being aware of, and proactive about, the realities of drug-drug interactions and co-morbid infectious diseases while caring for children living with HIV.
Let us be accountable. Together, we shall End TB.