Health – Human Rights :: TB

UNAIDS Press Release
Declaration of the Rights of People Affected by Tuberculosis launched
16 May 2019
Tuberculosis (TB) is the world’s number one cause of death from an infectious disease and remains the leading cause of death among people living with HIV, despite being preventable and curable. Reacting to the unacceptable burden of disease and death caused by TB, a new network of TB survivors and affected communities, called TB People, compiled the Declaration of the Rights of People Affected by Tuberculosis, with the support of leading human rights lawyers and the Stop TB Partnership.

The declaration, launched on 14 May at the Global Health Campus in Geneva, Switzerland, will guide countries to implement the commitments made at the 2018 United Nations High-Level Meeting on Tuberculosis and will inform the last board meeting of the Global Fund to Fight AIDS, Tuberculosis and Malaria (Global Fund) before its replenishment meeting in Lyon, France, in October…

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Declaration of the Rights of People Affected by Tuberculosis
STOP TB Partnership, TB People
May 2019 :: 27 pages
[Excerpts]
Article 4. Right to the highest attainable standard of physical and mental health(right to health)
Every person affected by tuberculosis has the right to enjoy the highest attainable standard of physical and mental health.

This includes the right to available, accessible, acceptable and high quality health care for tuberculosis, as an integral component of universal health coverage, including child-friendly fixed dose combinations and testing and preventive therapy for tuberculosis infection for members of key and vulnerable populations, from the moment of presentation with presumptive tuberculosis, to the completion of treatment, and beyond for people requiring continuing care, delivered by trained health care workers, at the community level, when appropriate, in a respectful, dignified, manner, free
from coercion and stigmatization, on a nondiscriminatory basis, regardless of age, birth, color,
culture, citizenship status, disability, ethnicity, financial status, gender identity, language, legal status, political or other opinion, presence of other diseases, national or social origin, race, religion, sex, sexual orientation or any other status, including for people detained by the State or otherwise deprived of their liberty, with special attention to tuberculosis key populations.

Article 5. Right to freedom from torture and other cruel, inhuman or degrading treatment
Every person affected by tuberculosis has the right to be free from torture and other cruel, inhuman or degrading treatment or punishment.
This includes the right to health care for tuberculosis on a nondiscriminatory basis, at State expense, for all people detained by the State or otherwise deprived of their liberty. It also includes the right to dignified, safe and hygienic conditions of detention, free from overcrowding, with adequate ventilation and provision of nutritious food. The right also applies to the treatment of people with tuberculosis by health care workers in public health facilities that rises to the level of torture or other cruel, inhuman or degrading treatment.

Article 6. Right to equality and freedom from discrimination
Every person affected by tuberculosis is equal before the law and entitled, without any discrimination, to the equal protection of the law and to be free from all forms of discrimination on any ground, such as age, birth, color, culture, citizenship status, disability, ethnicity, financial status, gender identity, language, legal status, political or other opinion, presence of other diseases, national or social origin, race, religion, sex, sexual orientation or any other status.
This includes the right of every person affected by tuberculosis to be free from all forms of discrimination in all areas of their life, including, but not limited to, access to social security and public entitlements, child birth and motherhood, education, employment, health care, housing and marriage.

Article 7. Right to liberty and security of person
Every person affected by tuberculosis has the right to liberty and security of person. No person with
tuberculosis shall be deprived of their liberty except on such grounds and in accordance with such procedure as are established by law. And every person affected by tuberculosis deprived of their liberty shall be treated with humanity and with respect for their inherent dignity.
Involuntary detention, hospitalization or isolation of a person with tuberculosis is a deprivation of liberty and violation of the security of person. Involuntary hospitalization or isolation is therefore only permissible as a measure of last resort, in narrowly defined circumstances, for the shortest duration possible, in accordance with Chapter 15 of the World Health Organization’s Ethics Guidance for the Implementation of the End TB Strategy, when a person, based on accurate medical evidence:
:: Is known to be contagious, refuses effective treatment, and all reasonable measures to ensure adherence have been attempted and proven unsuccessful; OR
:: Is known to be contagious, has agreed to ambulatory treatment, but lacks the capacity to institute infection control in the home, and refuses inpatient care; OR
:: Is highly likely to be contagious (based on laboratory evidence) but refuses to undergo assessment of his/her infectious status, while every effort is made to work with the person to establish a treatment plan that meets their needs.

Moreover, in accordance with the United Nations Economic and Social Council’s Siracusa Principles on the Limitation and Derogation Provisions in the International Covenant on Civil and Political Rights, the deprivation of liberty involved in the involuntary detention, hospitalization or isolation of people with tuberculosis is only justified if it is:
1. In accordance with national law in force at the time of the deprivation;
2. Based on, and proportionate to, a legitimate objective in response to a serious threat to the health of the population or individual members;
3. Strictly required by the exigencies of the situation;
4. The least restrictive means available to achieve the objective;
AND
5. Not arbitrary, abusive or discriminatory.

If justified, detention, hospitalization or isolation of a person with tuberculosis must: occur in a medically appropriate setting, with effective infection control measures, for the shortest duration possible, only as long as the above circumstances apply; the person must be provided health care on a voluntary basis; all other rights and freedoms must be protected; due process and appeal mechanisms must be available and accessible; and the State must meet, at least, the person’s basic needs, including, but not limited to, adequate food and water, as well any further needs as required to ensure
the restriction of their rights effectively serves its purpose.

Article 8. Freedom of movement
Every person affected by tuberculosis lawfully within a territory of a State has the right to liberty of movement and freedom to choose their residence.
Every person affected by tuberculosis is free to leave any country, including their own.
The above-mentioned rights cannot be subject to any restrictions, except those which are provided by law, are necessary to protect national security, public order, public health or morals or the rights and freedoms of others, and are consistent with the rights recognized in international human rights treaties, including the right to liberty and security of person in Article 7 of this Declaration.
This means tuberculosis cannot be used as a ground for denying entry or re-entry into the territory of a State, nor as a ground for deportation or removal from the territory of a State. It also means tuberculosis cannot be used as a ground for restricting movement or travel within the territory of a State, except in accordance with the narrowly defined circumstances established in Article 7 of this Declaration, in line with Chapter 15 of the World Health Organization’s Ethics Guidance for the Implementation of the End TB Strategy.

Article 9. Right to privacy and family life
Every person affected by tuberculosis has the right not to be subjected to arbitrary or unlawful interference with their privacy, family, home or correspondence, nor to unlawful attacks on their honor and reputation. Every person affected by tuberculosis has the right to protection of the law against such interference or attacks.
This includes the right of people with tuberculosis to keep their health status and personal health information and data private. It also includes the right to marry, found a family, and to have and care for children….

Article 11. Right to information
Every person affected by tuberculosis has the right to seek, receive and impart information.
This means information about tuberculosis infection and disease, including disease symptoms, tuberculosis medical research and health technology development, and prevention, testing and treatment services, including possible adverse events during treatment, must be fully available, accessible and acceptable, of good quality, age and gender appropriate, culturally-sensitive, and
imparted in a non-technical, comprehensible manner in a language understood by the person receiving the information.
It also means that every person affected by tuberculosis,
at a minimum, has the right to:
:: Request and receive official copies of their medical records;
:: Receive a timely, accurate and understandable explanation of their health status and diagnosis for tuberculosis disease or infection, especially for tuberculosis key and vulnerable populations;
:: Access voluntary counseling at any time from diagnosis to completion of their treatment; and
:: Receive an explanation of the benefits, risks and financial cost, if any, of their proposed treatment, including preventive therapy, as well as possible treatment alternatives, with complete
information about the specific drugs prescribed, such as their names, dosages, potential side effects and ways to prevent or reduce their likelihood, as well as possible effects from interactions with other drugs, such as antiretrovirals taken for HIV, when comorbidities or coinfections are present.

Article 12. Right to informed consent
Every person affected by tuberculosis has the right to informed consent.
This means respecting a person’s autonomy, self determination and dignity through voluntary health services delivery. It includes the right to informed consent—verbal or written, depending on the
situation—to all forms of testing, treatment and medical research associated with tuberculosis, with information provided in an age and gender appropriate, culturally sensitive manner, imparted in a non-technical, comprehensible manner in a language understood by the person receiving the information. For children affected by tuberculosis who lack capacity to give informed consent, all decisions made by their parents or legal guardians with respect to testing, treatment or medical research associated with tuberculosis must be made in the best interests of the child, based on accurate medical evidence.
The right to informed consent includes the right to refuse health care for tuberculosis, in accordance with Chapter 15 of the World Health Organization’s Ethics Guidance for the Implementation of the End TB Strategy. The Ethics Guidance establishes that it is never appropriate to force treatment of people with tuberculosis because, among other things, it amounts to an invasion of bodily integrity and may put health care workers at risk…

Article 23. Right to enjoy the benefits of scientific progress (right to science)
Every person affected by tuberculosis has the right to enjoy the benefits of scientific progress and its application.
This means every person affected by tuberculosis must be able to access scientific advancements, without discrimination, respecting and protecting indigenous peoples’ natural resources and individual and collective intellectual properties, whether these advancements are intangible things like knowledge and information or tangible outputs like new technologies for preventing, diagnosing or treating tuberculosis. It also includes the right to participate in the scientific process, from shaping research agendas, to participating in clinical trials.
The right to science also requires States to conserve, develop and diffuse science and its benefits. This means governments must: invest in and create legal and policy environments that enable research; make science and its applications widely available by, among other things, publishing results, establishing regulatory systems to evaluate new interventions, and basing public health programs and policies in scientific evidence; and ensure scientific progress and its benefits are preserved and maintained for future generations…