Drug-Resistant TB (DR) is a global public health threat and a major contributor to antimicrobial resistance (AMR), with a DR-TB accounting for a third of all AMR infections. People who are affected by drug-resistant TB are faced with significant economic and social costs which affect their access to quality care. This contributes to a high number of undiagnosed cases and missing persons hence a major global public health challenge. It should be noted that the World Health Organization (WHO) European Region has the highest proportion of DR-TB cases among new and retreated cases. The 18 high-priority countries in eastern Europe and central Asia account for 85% of TB incidence and more than 90% of DR-TB cases emerging in the region.
WHO in its recommendations for the treatment of DR-TB, emphasized the use of all-oral regimens, recommending against certain injectable agents and deprioritising others due to inferior safety and efficacy. Although the focus on patient-centered care has increased, there has not been any systematic attempt to qualitatively document patients’ perspectives on injectable treatment. In 1944, the first drugs for treating DR-TB were discovered. These drugs require intravenous or intramuscular administration, as they are poorly absorbed in the gastrointestinal tract and are therefore ineffective when taken orally.
The injectable TB drugs induced ototoxicity (hearing or balance issues due to medication) by destroying the hair cells in the cochlea, leading to irreparable hearing loss in most cases, since cochlear hair cells do not regenerate. Although aminoglycosides and polypeptides have short half-lives, they accumulate in the fluid of the inner ear and can persistently destroy hair cells even a year after discontinuing use. Aminoglycoside and polypeptide antibiotics also have many other serious side effects, including renal damage, gastrointestinal disturbances, and psychiatric disorders, and injections over the series of months previously recommended are painful. Ototoxicity is consistently noted as one of the most impactful side effects and is often met with significant stigma and discrimination from family members, health providers, and local communities, contributing to experiences of social isolation and poverty.
Testimonies from survivors indicate a strong preference for the avoidance of injectable treatment because of side effects and they call for supporting the rapid implementation of revised WHO guidelines, as well as for quality and supportive care for both TB and disabilities. Of specific note, the narratives of children with MDR-TB are missing from these testimonials and constitute a major limitation in representing all voices of TB survivors, especially those who are most vulnerable. The particular needs of children with TB are noted in the 2019 WHO guidelines, including a call for the avoidance of any injectable drugs in children and an emphasis on providing access to audiometric testing when they are used as a last resort.
The 2019 updates to the WHO DR-TB guidelines are a crucial step towards the prevention of harm experienced from injectable antibiotic drugs. However, even with activist campaigns urging an end to routine injectable use, and a joint statement from the WHO Director-General and the Civil Society Task Force on TB calling to make the switch to all-oral regimens by World TB Day 2020, many countries have not yet adopted or implemented the revised guidelines. In fact, the situation on the ground, as reflected in testimonials, was that many people received a diagnosis, treatment, and care that did not meet the guidelines that were in effect at the time of treatment. Much has remained the same in the present day as TB patients continue to receive inappropriate injectable treatment, even 2 years after the WHO’s 2018 rapid communication first deprioritizing injectable agents over safety profile concerns. While these testimonials were collected at a time when global guidance had not yet shifted to recommending all-oral treatments for all, yet even then, treatment alternatives were recommended for patients experiencing side effects, such as hearing loss, from injectable agents. Nevertheless, in many cases, TB survivors seeking treatment were faced with the false choice: “Would you rather be deaf or dead?”.
It should also be noted that a large proportion of TB patients are vulnerable and socially disadvantaged groups, such as prisoners and ex-prisoners, migrant workers, and alcohol and other substance abusers. As Mildred writes, “To those who have the authority to push for the changes in TB treatment: Do not be like my hearing aid. Don’t just amplify our voices. Please make things clearer for us.” This call should not be ignored, especially at this time.
Ending TB is a race against time if we have to meet the SDGs by 2030. We ask members of the TB community including donors, national policymakers, individual clinicians, and civil society to work towards the full implementation of the new guidelines and to continue to advocate for further improvements in all national health policies More broadly, as TB guidelines from norm-setting bodies continue to evolve over time, these testimonials serve as a reminder of why consent, access, and autonomy demand centrality in all patient decision-making of treatment and care globally.
Patients are seldom given a meaningful choice in the decision process behind their treatment plans, which contributes to lowered adherence to medication and diminished dignity and respect in patients.
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Written by Caroline Anena, TBEC Coordinator