Declaration of rights & demand for social & political solutions from people affected by TB

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A declaration of rights and demand for social and political solutions from people affected by tuberculosis at the 2018 Union World Conference on Lung Health

October 2018

We are people affected by TB and advocates of human rights. We make this declaration in the context of the 49th Union World Conference on Lung Health in The Hague.

TB is preventable and curable yet it devastates our communities, claiming 1.7 million lives and making more than 10 million people sick every year. This slaughter persists despite well-known and cheap solutions because TB is at root a political and human rights issue that can only be eliminated through political will to drive a human rights-based response.

For that reason, we take heart in the theme of this year’s Union conference: “Declaring our rights: social and political solutions.” This conference also follows closely the United Nations High Level Meeting on TB held in New York in September at which the nations of the world committed in a Political Declaration to a TB response based on human rights. Now they must bring to bear all the science, law, policies, and funding that this commitment demands.

A human rights-based response to TB demands fidelity to the commitments made in the UN Political Declaration not as a matter of benevolence but rather as a moral and legal obligation. This obligation flows from the human rights codified in international and domestic law and that we as people affected by TB hold by virtue of our humanity.

We therefore take pause during this Union Conference to call on all countries and international institutions to fulfill their commitments and obligations in the Political Declaration on TB and to accountability mechanisms at the international and domestic levels.

To this end, we pledge our support to those efforts. We also pledge to hold to account those who fall short. We hope for and will pursue collaboration but recognize that accountability at times requires confrontation and we therefore embrace our right and moral duty to seek justice in the streets and courts when necessary.

The UN Political Declaration must be more than paper and the theme of this Union Conference must be more than rhetoric. They must result in dramatic change in the TB response or we will have squandered an unprecedented opportunity and condemned millions more people to senseless suffering and death for decades to come.

We therefore:

  1. Demand that countries and international institutions meet UN Political Declaration funding commitments, including on research and development for new TB treatments, preventive therapies and diagnostic technologies, including for vulnerable populations such as children and people living with HIV;
  2. Demand that countries recognize and protect in law the rights of people affected by TB including to life, health, movement, liberty, science, nondiscrimination, privacy, participation and information;  
  3. Demand that Johnson & Johnson drop the price of bedaquiline and that Otsuka drop the price of delamanid to a dollar a day so that exploitative prices will no longer keep the drug from people who need it;
  4. Demand transparency from manufacturing companies as to research and development costs;
  5. Demand that countries and originator companies embrace TRIPS flexibilities including compulsory and voluntary licenses and put in place mechanisms to delink the cost of production from price and eliminate monopolies;
  6. Demand that countries urgently implement the new World Health Organization recommendations on the use of bedaquiline in drug-resistant TB treatment;
  7. Assert that international institutions and donors have been distracted by gadgets that promise simple solutions to TB and must refocus attention and funding on people-centered solutions such as Community Health Workers and community-based accountability structures at the local level;
  8. Demand that the Global Fund, the Stop TB Partnership, and other funding institutions prioritize human rights and investment in building and bringing together civil society and communities in a transparent manner, including through the pursuit of innovative means to channel financial support to grassroots organizations who are best-placed to ensure accountability from the ground up;
  9. Demand that the World Health Organization revise its endorsement of the paternalistic strategy of Directly Observed Treatment (DOT) and instead focus on supporting law and policy that respects and promotes the dignity, privacy and autonomy of people with TB; and
  10. Invite our colleagues who practice medicine, law, science and other professions to be advocates and allies including by joining in these demands and our ongoing efforts to achieve true accountability in the fight against TB.