Is TB a Human Rights Issue?

Last month, Daniel Ng’etich and Patrick Kipng’etich Kirui, two Kenyan farm workers, were arrested and sentenced to eight months in prison. Their crime?  Failing to take their medicine.  After serving nearly two months in prison, they were released only after human rights groups filed legal action.

Like more than 130,000 other Kenyans in 2008, both men have been diagnosed with tuberculosis. Treating TB requires at least four drugs and six months or more of treatment. When a patient is diagnosed with TB, the treatment plan usually involves close supervision while taking medications, called directly observed therapy (DOT), and measures to prevent the spread of infection. When patients do not receive the appropriate treatment or do not take all of their medications, they can develop drug-resistant TB.

Governments are increasingly concerned about drug-resistant TB as it is more complicated and costly to diagnose and treat, especially for people living with HIV. In response, several  countries have developed programs for treating TB patients within their own communities—a model which has proven very  effective to ensure patients complete their treatment regimen, while also preventing the spread of the disease. Typical programs enlist community health care workers who regularly visit TB patients to help them take their medications and provide them with food packages, transportation assistance, and education about the disease.

Adhering to TB treatment can be difficult if there are not adequate structures in place to support patients. In the case of Daniel and Patrick, both men were out of work and spent many days away from their homes in Iruru village, searching for employment. They could not afford to stay home and take their medicine under a DOT program. They could not even afford food. Community support structures were virtually non-existent in their village.

Instead of investing in community-based programs, Kenya is using its limited anti-TB funding to build expensive isolation facilities that require patients to leave their communities and jobs, and will not have the capacity to treat all patients who need treatment. And in the meantime, patients like Daniel and Patrick are simply put away in prison, where there is zero infection control among inmates.

Government health officials routinely cite TB as an example of when it may be justified to limit patients’ rights to protect the health and safety of the public. Daniel and Patrick were convicted under Kenya’s Public Health Act, which states that a person’s freedom of movement may be restricted for the purpose of protecting public health, but that such restriction is justified only when it is absolutely necessary and done in the least restrictive way possible. The law mirrors the internationally recognized Siracusa Principles, set by the UN Economic and Social Council and instituted in the World Health Organization’s guidelines on TB detention. These principles state that detention must not be arbitrary and should be evidence-based, least restrictive, carried out in accordance with the law, and subject to review.

Theoretically, such measures seem like sound practice. In reality, however, such policies have led to widespread human rights violations. The Siracusa Principles simply do not provide adequate guidance for governments on how they can develop policies and programs that both protect public health and respect the rights of patients. As a result, governments that detain drug-resistant TB patients do so in a sweeping manner that often violates basic human rights and actually threatens efforts to treat and prevent TB (How many people would voluntarily get tested if they knew a positive diagnosis could result in a prison sentence?).

In the case of Daniel and Patrick, it appears that Kenya has failed to meet the conditions laid out by the Siracusa Principles. It is a hard sell to claim imprisonment as the least restrictive option for the two men to complete their medicine regimen. At no point did a medical officer or doctor prescribe prison as the most effective treatment. Thankfully, the High Court agreed and ordered that the two men be released this week.

While the court opinion is a promising development for human rights in Kenya, all of this could have been avoided if more governments adopted community-based care as the standard for treating TB. Kenya should take a lesson from Lesotho, where the government worked closely with Partners’ in Health to establish a drug-resistant TB treatment program that uses community health care workers to provide information and treatment support to patients in their homes and communities. These types of programs have proven to be effective, are more acceptable to patients and communities, and are less costly than detaining TB patients.

The Open Society Foundations is working with the WHO, UNAIDS and the Stop TB Partnership to create a taskforce of clinicians, TB patients, civil society advocates, academics, and researchers to develop a human rights framework for TB prevention and treatment. Ultimately, we hope this framework can be used to determine whether countries are living up to human rights standards.

Until there is clearer guidance on TB and human rights, and more community-based care programs are established, we will support efforts to decriminalize TB and defend the rights of patients like Daniel and Patrick.

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Amazing work Erin. Thank you so much for working towards equal rights for all.

very important, informative, and impressively well written. thank you!

This clearly underscores the need to strengthen Community TB Care in the light of emerging Drug Resistant cases in most developing countries' communities. Kudos to the human rights activists.

very informative and come out clearly. thanks for sharing such important issue.

de-institutionalisation is the way to go for treatment of all diseases. Imprisonment is a blatant violation of indivdual rights and liberties.Successful DOTS in most countries Kenya included has demonstarted that TB can effectively managed at the community with the support of close family members and the patients themslves.
I am a graduate student at JKUAT - Institute of Tropical Medicine and Infectious Diseases ( ITROMID) carrying out a study on factors affecting compliance to TB treatment in informal settlements in Nairobi

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