Similarly, populations most at risk of TB infection are also often those who live in conditions of poverty, social inequality and marginalization. Populations most vulnerable to and affected by TB include those living in substandard housing, in conditions of poor sanitation, overcrowding and with poor nutrition. They include people in prisons and closed settings, miners, migrants, refugees and internally displaced persons. Their socio-economic circumstances place them at greater risk of TB infection and impacts on their ability to realize their health rights to voluntarily access TB prevention, treatment, care and support services without discrimination.
TB policies and programmes may also impact on the rights of affected persons. For instance, health policies may fail to prioritise TB research or fail to allocate sufficient funding to TB, limiting access to essential, life-saving medicines.
Article 12 of the International Covenant on Economic Social and Cultural Rights gives every person the right to the “highest attainable standard of physical and mental health.” Despite this, thousands of TB patients, including those most poor and marginalized, struggle to receive appropriate medicines to protect their health.
A young 18-year-old woman from Patna in India, who had failed to respond to traditional antibiotics, refused to accept that she couldn’t get Bedaquiline, a new generation treatment for multi-drug-resistant TB (MDR-TB), used when other treatments have failed. Why was she denied access to the treatment? She wasn’t a resident in one of the only five Indian cities where Bedaquiline is provided.
India has the highest number of people with TB in the world. According to the World Health Organisation’s Global TB Report 2017, India is one of 7 countries who make up 64% of the global TB burden, followed by Indonesia, China, Philippines, Pakistan, Nigeria and South Africa.
Drug-resistance is a major challenge in the global response to TB and is recognized as a public health crisis in India, according to WHO’s Global TB Report 2017. In 2015, the estimated incidence of MDR/RR-TB was 200 000 in South-East Asia, with India alone accounting for 130 000 cases.
Effective treatment of MDR-TB often requires the use of Bedaquiline. Government’s tight control of the treatment in India meant that it was only accessible to residents in five Indian cities. As Patna was not one of those cities, the young woman’s wish for Bedaquiline was rejected at a hospital in New Delhi.
However, the young woman refused to give up. With the support of the key legal organization, the Lawyers Collective, she and her father approached the Delhi High Court. They argued that the denial of access to Bedaquiline violated her fundamental right to life and health under Article 21 of the Indian Constitution and the right to health under Article 12 of the International Covenant on Economic, Social and Cultural Rights.In January of last year, the court upheld her rights, holding that the administration of a medicine cannot be determined by where a patient lives. The court’s finding will help other people living with TB claim their rights to high quality medicines and is a significant victory towards ending TB.
In some countries, unnecessarily punitive public health policies aimed at preventing TB transmission or managing patients with drug-resistant TB, infringe human rights even further. They isolate, hospitalize and even incarcerate TB patients for lengthy periods of time, forcing them to remain away from their homes, families and community support systems for purposes of prevention or treatment. While limitations of rights may be necessary to achieve public health goals, in many cases TB policies are unreasonable, unable to achieve the stated goals and contrary to the UN Siracusa Principles.
In Kenya, a group of TB patients were arrested and detained in prison, in terms of the Public Health Act, for failing to comply with their TB treatment. They were kept in overcrowded prison conditions that failed to support their treatment for TB and also placed other prisoners at risk of infection.
The High Court of Kenya determined that, while isolating a person with TB who fails to take treatment may be necessary in the interests of public health, it should be for purposes of treatment rather than punishment. Isolation should also comply with ethical and human rights principles set out in the Siracusa Princples – for example, with adequate measures to promote treatment adherence, appropriate infection control and reasonable social support. The court held that the imprisonment of the patients was unconstitutional in the circumstances. It ordered the government to develop an appropriate policy on the involuntary confinement of persons with TB and other infectious diseases.Daniel Ng’ etich v Attorney General, Petition No. 329, 2014
In 2016, a working group of experts convened by the Global Fund comprehensively defined programmatic responses to address human rights and gender-related barriers to TB services. The Tuberculosis, Gender and Human Rights Technical Brief specifically recommends, in addition to the programmes promoted for HIV:
The Task Force aims to protect and promote human rights in pursuit of universal access to TB prevention, diagnosis and treatment through global frameworks and strategies that address the human rights dimensions of TB and that prioritize: