UNITED NATIONS — Tuberculosis killed far more people — approximately 1.7 million — last year than HIV/AIDS and malaria combined. So when Eric Goosby, the former United States Global AIDS Coordinator, took on the role of U.N. special envoy on tuberculosis, he was surprised to find a relatively weak global approach in addressing TB.
“The HIV community was more available and more aggressive in playing a role in outreach retention and care, and with some of the organizing, politically, around HIV services to challenge policymakers to fund more and to hold them accountable when they did,” Goosby told Devex in a recent interview. “The lack of that in the TB community was striking to me, having come out of the HIV community, and [it] was one of the big differences that is reflected in the response.”
More on tuberculosis:
TB will have a rare moment in the global political spotlight on Wednesday, during the first high-level meeting at the United Nations focused on preventing and treating the infectious disease. The public recognition — however brief — of TB’s harm and challenges has been a long time coming, public health experts say.
“One of the unique tragedies about TB is it is a disease we have known about for a very long time and have understood how to diagnose, prevent, and treat and cure 87 percent of the time for people with drug sensitive TB. The problem has been identifying and retaining people in care with TB,” Goosby said.
“The tragedy is the TB community, as a delivery system, has not taken advantage in the same aggressive way that the HIV community did — with home health workers, community-based enabling, wrap-around services that identify or retain people with care over time.”
More treatment needed
While the number of TB deaths among people both living with and without HIV has fallen since 2000, just 64 percent of the impacted population receives treatment, due to under reporting and lack of diagnoses. That must increase to at least 90 percent by 2030 to meet the Sustainable Development Goals’ TB targets, according to the World Health Organization.
But the gap in political attention for TB, as well as the insufficient levels of funding and research for the disease, may be beginning to change.
“Because of science and the intersection of science and political will, there is a moment where you can potentially break the mediocrity. In the past two years, I have seen a lot of hope for change and seen change on the ground,” said Sharonann Lynch, the HIV/TB adviser for Médecins Sans Frontières’ Access Campaign.
Only two new drugs have been developed to treat TB in the past 50 years. And while WHO first recommended newer oral drugs, such as bedaquiline, to treat multidrug-resistant TB in 2013, these drugs were inaccessible to almost 90 percent of people who could have benefited from them in 2017, according to MSF.
“When we engage governments, they admit there is the cost of the drugs, the complexity of the treatment, and then there is the low cure rate,” Lynch said.
The production of cheaper, generic drugs for TB treatment has been a point of contention in the lead-up to the high-level meeting, when countries are expected to agree on aiming to treat 40 million people with TB through 2022.
Earlier this week, Johnson & Johnson announced a 10-year initiative with a molecular diagnostics company that could help better identify and treat TB. In July, the company also said it would expand access to bedaquiline to eligible people with MDR-TB with a noncommercial price for more than 130 low- and middle-income countries and some nongovernmental organizations.
Available treatment can often be expensive and physically challenging for patients, who could experience side effects such as deafness. Investments in TB prevention and care in low- and middle-income countries fell short of $3.5 billion this year, according to WHO.
“Mostly right now it remains a funding challenge. Countries have tried to not fund their TB response because there is no constituency demanding it,” Goosby said.
Part of that responsibility rests on health care workers, who could serve as a surrogate constituency for TB, given the prevalence of the disease among this group. Goosby himself was once diagnosed with TB, as were half of his colleagues in global health, he says.
The challenge also extends to the relative invisibility of the disease, says Georgia White, a research and policy associate at the advocacy group AIDS Free World. TB is the largest single killer of people living with HIV/AIDS.
“Unfortunately, the reality is that rich people do not get TB, and predominantly it is not a white person’s disease, either. We have to be pretty frank in recognizing there is a lot of apathy toward people who have TB,” she said.
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