TB preconference highlights response stymied by neglect of patient needs and research funding deficits
DURBAN, South Africa – Calling for change in approaches to tuberculosis to address poverty, malnutrition and human rights, International Union Against Tuberculosis and Lung Disease leader Jose Luis Castro, at a pre-conference event here Saturday, urged TB responders globally to embrace patient-centered approaches and language. That includes ending the use of nomenclature such as “TB suspect” and TB defaulters,” which Castro noted was tantamount to treating people with TB like criminals.
In that spirit, Castro noted that people living with TB infection have a right to be diagnosed and informed about steps they can take to safeguard their health. Rising rates of drug-resistant tuberculosis are “an indictment against us—our failure to ensure quality TB treatment everywhere,” he said.
“Tuberculosis is a scourge and drug resistance is a crisis,” Castro noted.
The numbers he and other TB2016 pre-conference speakers cited were familiar to the audience, including that while more than 9 million people get sick with TB annually, 3 million of them never get diagnosed or treated, and some 500,000 of those who get sick are afflicted with drug-resistant TB. And, of course, speakers at this meeting nested within the International AIDS Conference spelled out the deadly synergy of HIV and tuberculosis as tuberculosis remains the leading cause of hospitalization and death among those living with HIV.
Outdated tools to prevent, diagnose and treat tuberculosis “hinder the right to health.” Michael Frick, of Treatment Action group noted in a subsequent panel talk, arguing that this right includes the right to the benefits of scientific progress.
“Tasking governments to promote scientific research” must be part of the advocacy agenda of scientists and patient advocates, he said, as he outlined some of the consequences of the limited public TB research funding available, and the exit of many pharmaceutical companies from tuberculosis research and development in recent years.
Those consequences include failures to study drugs in combination despite the necessity of multiple medicines to effectively cure tuberculosis, a paucity of studies that include those most vulnerable to tuberculosis, like children, pregnant women, people who use drugs and people living with HIV, and limited clinical trial evidence for the only two new drugs approved in the last four decades, delamanid and bedaquiline.
Source: Science Speaks