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 socioeconomic circumstances place them at greater risk of TB infection and hinders their ability to realize their health rights voluntarily to access TB prevention, treatment, care and support services without discrimination.
Once affected by TB, patients and their families report 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. In the 2018 Risk, Rights & Health Supplementary Report, for example, the Global Commission on HIV and the Law notes the impact of punitive responses on people who use drugs: "People who use drugs often remain excluded from HIV, TB, and hepatitis treatments, or are subjected to coerced or confined TB treatment. Imprisoned patients are lost to follow up."
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; yet 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.
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 could not get Bedaquiline, a new generation treatment for multi-drug-resistant TB (MDR-TB) i, used when other treatments have failed. Why was she denied access to the treatment? She was not 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 Organization’s Global TB Report 2017, India is one of 7 countries who make up 64% of the global TB burden, followed by Indonesia, China, the 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. The 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 2017, 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, under 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.
- Daniel Ng’ etich v Attorney General, Petition No. 329, 2014 Details of a successful court challenge to the imprisonment of TB patients, purportedly in terms of the Public Health Act in Kenya, for failing to take their TB medication.
- YouTube: TB is not a crime
On 26 September 2018, Heads of State gathered in New York at the United Nations General Assembly first-ever High-Level Meeting on TB, to accelerate efforts to end TB.
The High-Level Meeting resulted in an ambitious Political Declaration on the Fight Against Tuberculosis to strengthen action and investments to end TB. At the closing of the High-Level Meeting, H.E. Mrs. María Fernanda Espinosa Garces, President of the 73rd Session of the UN General Assembly, remarked that 'The plan is on the table, the commitments have been made, the only thing left to do is to get up and do it.'
The 2018 Political Declaration consists of 53 commitments to end TB globally by 2030, in line with the targets set out in the Sustainable Development Goals. These includes commitments to protecting and promoting human rights as part of effective responses to TB. Here are five highlights of the ways in which Member States recognize and commit to human rights-based responses to end TB:
- The Declaration notes the challenge countries—especially developing countries—face in protecting and promoting the right to the highest attainable standard of physical and mental health and providing access to tuberculosis health services and to quality, safe, efficacious and affordable tuberculosis diagnostics and treatment.
- The Declaration recognizes the health of vulnerable populations as a human rights concern and commits to prioritizing vulnerable populations such as women, children, adolescents, indigenous people, health care workers, migrants, refugees, internally displaced people, people living in situations of complex emergencies, prisoners, people living with HIV, people who use drugs, miners, urban and rural poor, underserved populations, undernourished people, individuals who face food insecurity, ethnic minorities, people and communities at risk of exposure to bovine TB, people living with diabetes, people with disabilities, people with alcohol abuse disorders and people who use tobacco.
- The Declaration commits Member States to fulfilling the right to the highest attainable standard of health through providing universal access to quality testing for TB, the provision of preventive treatment, diagnosis, treatment care, and adherence support, with a special focus on reaching vulnerable and marginalized populations and communities.
- In so doing, Member States commit to protecting and promoting equity, ethics, gender equality and human rights; reducing stigma and discrimination in health care services, providing socioeconomic and psychosocial support, removing discriminatory laws, policies and programmes that create barriers to equitable access to prevention, diagnosis, treatment and care for TB and promoting human rights and dignity.
- The Declaration commits Member States to ensuring the strong and meaningful engagement of civil society and affected communities in the planning, implementation, monitoring and evaluation of the tuberculosis response.
Read the full declaration here
In 2018, the Global Commission on HIV and the Law emphasised the severe impact of tuberculosis on the lives of people with HIV and vice-versa. Globally, more than 13% of people with TB tested HIV-positive and TB is the leading cause of HIV-related deaths.
The Commission’s report noted human rights issues that affected people with TB, including evidence of stigma, discrimination and punitive public health responses to people with TB, as well as the lack of investment in research and development of new diagnostics and tolerable treatments for TB.
The Commission made strong recommendations for enabling legal environments to protect and promote the rights of people with TB from discrimination and to increase access to diagnostics and treatment for TB.
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
Stop TB Partnership TB and Human Rights Task Force (A link to information on the TB and Human Rights Task Force, explaining their composition and function and providing access to key documents.<)
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