TB, law, human rights and gender equality
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Key populations are at higher risk of TB
Key populations in the TB response include:
- People living with HIV
- Prisoners and incarcerated populations
- Asylum seekers, refugees and other migrants
- Internally displaced people, and
- Indigenous populations.
Populations most at risk of TB infection are also often those who live in conditions of poverty, social inequality and marginalization. Key populations 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.
Miners in Southern Africa are at exceptionally high risk of TB and other lung diseases due to working in confined, humid and poorly ventilated conditions and prolonged exposure to silica dust.
Migrant mine workers in Southern Africa are dependent upon their employment for survival and have limited power to negotiate their working conditions. They often have limited access to health care services in their working environment and in their home environments, where they return once they become too ill to continue to work.
Prisoners are at high risk of HIV and TB exposure and infection. In many countries of the world, prisoners are kept in settings that violate their human rights – prisons are often overcrowded, lack hygienic sanitation and provide poor nutrition and limited access to adequate HIV and TB health care services and harm reduction measures.
Prison conditions may expose prisoners to violence and sexual abuse. Weak justice systems may result in awaiting-trial prisoners spending unnecessarily long periods of time in detention, exposing them to higher risks of infection. Criminal laws prohibiting same-sex sexual activity and correctional laws prohibiting sex in prisons are often raised as barriers to providing condoms in prisons; the failure to provide condoms in prisons places prisoners at further risk of HIV exposure.
Policies and activities that address critical enablers and that seek to, for example a) review and reform criminal and correctional laws and policies to allow for the provision of condoms and harm reduction programmes to prisoners b) strengthen access to justice to provide for measures to reduce overcrowding in prisons, and c) train prisoners on their rights and how to enforce them will support national efforts to reduce vulnerability to HIV and TB in prisons.
Once affected by TB, key populations experience further rights violations
TB patients report experiencing stigma and discrimination. 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 international human rights law.
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 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 international law – 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.
Heads of State gathered in New York on 26 September 2018 at the United Nations General Assembly’s first ever High-Level Meeting on TB, to accelerate efforts to #EndTB and reach all affected people with prevention and care. The theme of the meeting was “United to end tuberculosis: an urgent global response to a global epidemic.”
The High-Level Meeting should result in Heads of State endorsing an ambitious Political Declaration on TB to strengthen action and investments to end TB, saving millions of lives.
The United Nations Development Programme recognises that ending TB requires an enabling framework that protects and promotes human rights and gender equality. The Lancet Commission on TB similarly identified this recommendation, in identifying global actions necessary to #EndTB.
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:
- Advocacy, communication and social mobilisation
- Community and patient involvement in TB care and prevention
- Empowering people with TB and their communities, and
- Developing patients’ charters for TB care.
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:
- Ensuring confidentiality and privacy
- Mobilizing and empowering patient and community groups
- Addressing policies regarding involuntary isolation or detention for failure to adhere to TB treatment and
- Removing barriers to TB services in prisons.