A human-rights-based approach to breaking down barriers to TB information, diagnosis and care
Director's Corner Message, February 2019
Earlier this month was World Day of Social Justice when we are all reminded that everybody has a right to health, regardless of the country and circumstances they live within. Yet the tuberculosis (TB) epidemic is sustained by broad injustices, and this has to change.
TB, as an airborne disease, has the potential to affect each one of us equally, yet clearly it does not. TB disproportionately affects people marginalised by poverty, social exclusion, children – who cannot advocate for themselves – or people living in sub-standard conditions such as prisons.
Despite progress over recent decades, over 95 percent of TB-related deaths occur in low and middle-income countries. People routinely face challenges in accessing care and, even in contexts where treatment is free, the costs related to diagnosis and transport – not to mention lost wages during treatment – are borne by the patients and contribute to the cycle of poverty.
Stigma and discrimination dissuade many from seeking treatment, and people living with HIV or other compounding diseases suffer stigma at increased rates. Children often go undiagnosed, even when living with a person with an active form of the disease, leading to death in one out of four children with TB. Prisoners or other wards of the state are at higher risk of TB due to overcrowding and poor ventilation in living quarters. And healthcare providers, miners and others with occupational risks associated with TB encounter stigma and inadequate protections from their employers.
This is inexcusable.
An article published this week in the International Journal of Tuberculosis and Lung Disease specifically details the various barriers to care that people seeking treatment for drug-resistant tuberculosis (DR-TB) face and the human rights decrees that are violated in the process.
For example, the authors observe that despite the End TB Strategy calling for early diagnosis, this is not the case in low- and middle-income countries. They report that in India a TB patient is on average diagnosed “after two months and three visits to providers and TB survivors and stakeholders have reported diagnostic delays from two months to more than one year in Nigeria.” Furthermore, the reliance on microscopy for diagnosis in LMICs means that most TB patients are not receiving tests to see if they have any resistance to the drugs used for the standard treatment of TB, so they will automatically be placed on treatment regimens that could be ineffective and promote further resistance when early testing for drug susceptibility would prevent this. The article highlights the care cascade for people with multidrug-resistant TB (MDR-TB) in India, where only 41 percent of those who reached government TB centres were ever actually diagnosed with MDR-TB.
For patients diagnosed with DR-TB, the article outlines the inequality around the world of accessing treatment. This can be determined by the country you are living in – with only South Africa diagnosing and providing treatment to more than 50 percent of the burden. Access to treatment has disparities across patient groups, including children, where there is almost no data worldwide on their diagnosis and treatment but what evidence does exist suggests that the percentage of children needing treatment who actually receive it is very small.
These are just two areas where we see huge inequalities in accessing the appropriate healthcare. It is a government’s responsibility to support everybody’s right to health by providing health services that are accessible and non-discriminatory, yet repeatedly this is not the case.
In September 2018, the United Nations (UN) approved the first-ever political declaration on TB. World leaders have now formally and publicly committed to support a human-rights based approach to ending TB, among other promises. This historic achievement must give us the momentum and leadership we so urgently need to address the inequalities that are feeding the TB epidemic.
The need for action on promises was reinforced by Dr Eric Goosby, UN Special Envoy on TB, when speaking at the 23rd Annual Conference of The Union North America Region, in Vancouver, Canada last week. He discussed the next steps following the UN High-Level Meeting on TB, highlighting that TB is a curable and treatable disease, but we now need to make this “doable.” He urged countries to make good on their promises and implement better, more robust and more accessible health systems to ensure access to TB treatment and prevention.
To make ending TB doable, we must ensure that governments are held accountable to the people they serve, ensuring that we focus efforts on the most vulnerable and marginalised populations. A human-rights based approach to TB is an inclusive, multisectoral response to a disease that poses a threat to all aspects of our society – not just our healthcare.
The right to health and the right to enjoy the benefits and applications of scientific progress is established by the International Covenant on Economic, Social, and Cultural Rights, signed and ratified by 166 countries. The UN political declaration lays out clear targets for the elimination of TB, with a focus on a human-rights led approach, including ensuring affordable and equitable access to new tools developed for TB.
As the TB community prepares for World TB Day on 24 March, and as we continue to hold world leaders accountable, we must demand they keep their promise to deliver equitable solutions that confront the barriers to information, diagnosis, treatment and, ultimately, good health for all.