24 June 2016 - Nairobi, Kenya - The Stop TB Partnership, in collaboration with KELIN and the International Human Rights Clinic at University of Chicago Law School, held a regional workshop on 24-25 June to promote the use of rights-based and community initiatives in TB work. The event, "TB, Human Rights and the Law", brought together 70 participants, including judges from countries in West, South, and East Africa as well as India and Australia; TB survivors; and legal, medical and public health experts to discuss the relationship between human rights, TB, and the law.
"I have attended numerous human rights conferences. This particular one was unique. It was unique in that it had a real feel and unmistakable sense of urgency," said Justice Key Dingake, judge of the Botswana High Court, in his closing remarks. "We now know, those who didn’t, that TB is one of the greatest killers. It is highly infectious. The statistics are chilling. The pain is unimaginable. The tears shed would fill up rivers. For the last two days, the sharp and decisive question we have been trying to answer is how do we integrate issues of human rights in fighting TB. We don’t have solutions to all the questions posed - but we have found common ground - that human rights lie at the center of an effective TB response. [...] Only when we act together - with human rights as our tool of trade, can we succeed."
Diagnosis and treatment of TB often suffers from a double standard: cost considerations in resource-poor areas prevent the highest available standards of care from being implemented. The right to health asserted in most countries’ constitutions calls for quality, non-discriminatory TB treatment and testing, however this is often not the reality. "I was lucky, but why should access to health care be the exception?" said TB survivor and activist Phumeza Tisile. "It is not an easy journey to fight TB. The number of drugs that you take, under knives sometimes, under fear, with death facing you, you can imagine that kind of trauma, and no love," said survivor-activist Paul Moses Ndegwa.
The human rights-based approach to TB addresses inequities in treatment by emphasizing the rights of people living with and vulnerable to TB, including the rights to life, health, nondiscrimination, privacy, informed consent, housing, food and water. People affected by TB need to be able to claim their rights to information, participation, and informed consent; and win greater protections against discrimination through litigation and advocacy based on constitutionally derived human rights. There is a dearth of case law when it comes to TB as people have not exercised their right to protections against discrimination in employment, access to healthcare, and the armed services for example. In HIV there is explicit prohibition of discrimination based on HIV status through legislation in several countries but this is not the same for TB. If people are informed, they can use the rights approach to reduce stigmatization and increase their participation in policy decisions affecting their health.
"Participation by those affected is indispensable - for reasons of principle and practicality - the patient / person affected is not the enemy! The sad consequence is that a determined and enraged lobby is lacking. In South Africa, gay men were often in the lead in advocating human rights protections and treatment. Where will we find comparable fierce advocates for those with TB? Judicial leadership - evidence-based, reasoned, principled." said Justice Edwin Cameron of the Constitutional Court of South Africa.
"We were addressed by many TB patients whose dignity and humanity was restored by medicine. Judges are used to facts being told through the medium of affidavits - which to some extent is impersonal - affidavits never drive the message home as powerfully as the people who stood before you and articulated what they went through. This approach made me realize that no cause/struggle can succeed if those infected or affected are not brought on board," said Justice Key Dingake.
The implementation of human right based strategies in the fight against TB is now increasingly important. "It’s a an amazing privilege for us in the Stop TB Partnership Secretariat to partner with University of Chicago Law School, KELIN and the Global Fund in order to bring people from all perspectives together for the workshop. We remain committed to increasing awareness and push for integration of human rights approaches, so people with TB do not suffer even more stigma and discrimination. We are currently working with many of our partners, including the Global Fund, UNDP, WHO and communities affected by TB on a human rights strategy which will serve as a roadmap to achieve Global Plan objectives," said Lucica Ditiu, Executive Director of the Stop TB Partnership.
The African regional workshop was the latest in a series of meetings advancing rights-based TB initiatives, including the "TB, Human Rights and the Law" judicial workshop conducted in New Delhi, India (December 2015), the "Developing a Rights-Based Approach to TB" conference (December 2014), and the "TB Activist Training Session" (September 2014) all organized by the International Human Rights Clinic at the University of Chicago Law School.
A full list of participants can be found here.