Not respecting confidentiality is unethical in TB Care

Not respecting confidentiality is unethical in TB Care

Why are people who might be having TB not going in for TB testing in Lesotho? "When it comes to confidentiality in TB care, going for testing often means that entire community comes to know of your TB status. This is a violation of human right" said Maketekete Alfred Thotolo, Treatment Literacy and Advocacy Coordinator at Adventist Development and Relief Agency (ADRA Lesotho) which works closely with AIDS and Rights Alliance in Southern Africa (ARASA). Alfred was sharing his experiences from Lesotho at the 40th Union World Conference on Lung Health.

People who might have TB need to have supportive and safe healthcare facilities that don't expose them to TB related stigma, says Alfred. Going for TB test is like taking a risk as healthcare facilities providing TB services are insensitive to the human rights of people who are seeking services from them.

"Normally we are told that somebody's illness is a private matter. But in clinics doctors identify TB patients violating confidentiality and trust. Lack of confidentiality further breeds stigma and discrimination related to TB for this patient" said Alfred. This fear of TB-related stigma and eventual discrimination at different levels, discourages people from going to existing TB-care services. We speak of intensified TB case finding, want people to complete anti-TB treatment successfully and prevent latent TB from becoming active TB disease by taking full course of isoniazid preventive therapy, but unless we address TB stigma and reduce discrimination, it will be difficult to achieve what we are aiming for in TB control, says he.

"In Lesotho, Isoniazid Preventive Therapy (IPT) to prevent latent TB infection from becoming active TB disease, is not available for ordinary citizens but only for health workers. Those people who have latent TB infection have a right to protect themselves and access IPT services to prevent latent TB from becoming active TB disease. I consider these people have a right to get IPT. Everybody has a right to health, when it comes to TB prevention" said Alfred. The Global TB/HIV Working Group of the Stop TB Partnership has clearly stated that: IPT works, IPT is safe, and IPT works with ART or by itself. TB is a major cause of illness and death in people living with HIV, even in those taking antiretroviral therapy. TB could be prevented in millions of people infected with both HIV and TB through the use of IPT. IPT is an important intervention for preventing and reducing active TB in communities affected by HIV - preventing active TB can prevent millions of people from being infected in the community and in health care services.

IPT is safe and effective and the treatment lasts for 6-9 months. It is only given to people who have confirmed latent TB infection (not to be given to those with active TB disease). Effective IPT treatment reduces the development of active TB disease in 40-60% of patients.

Despite of the potential public health outcomes of using IPT effectively in high burden TB countries, and IPT being one of the key interventions recommended by WHO in 1998 to reduce the burden of TB in people living with HIV, the uptake of IPT has been very low. Clearly there is a need to mobilize TB-HIV affected communities and other stakeholders to integrate IPT as part of the package of health services.

Everybody has a right to health - and this includes the right to access TB services - without any fear of healthcare facilities not respecting one's confidentiality or being denied IPT if one has latent TB and putting oneself at risk of developing active TB disease.

May be TB care and control programmes can get some lessons in reducing stigma and discrimination from other disease control programmes. Engaging community meaningfully at all levels of AIDS programmes has certainly yielded results - and reduced stigma, discrimination and increased access to AIDS services in different parts of the world. Community engagement is certainly suboptimal in TB care and control programmes in reality. There are good examples where genuine involvement of community, particularly cured TB patients, have improved TB programme performances in different parts of the world. But this is certainly not a generalized statement to the global TB control.

The WHO Global TB Strategy and the Global Plan to Stop TB (2006-2015) gives a major thrust to community engagement. The Patients' Charter for Tuberculosis Care (PCTC, The Charter) is an integral component of the WHO Global TB Strategy, as a tool to empower communities for advocating to achieve the International Standards of Tuberculosis Care (ISTC). Many national governments have adapted the Charter as official component of their national TB programmes. But in reality, genuine engagement of cured TB patients at all levels of TB programmes is a distant dream, despite of increasing number of examples where community has demonstrated their competence in improving TB responses locally. After all, why are governments reluctant to engage communities - which can address so many current impediments to TB care and control at local level?

A 2007 World Bank research report "The Economic Benefit of Global Investments in Tuberculosis Control" found that 22 countries with the world’s highest numbers of TB cases could earn significantly more than they spend on TB diagnosis and treatment if they signed onto a global plan to sharply reduce the numbers of TB-related deaths. Highly affected African countries could gain up to 9 times their investments in TB control. When the economic benefits of effective TB care and control are estimated to be greater than the cost, it is all the more reason for governments to not delay any further the improvement of TB responses by engaging communities with dignity as equal partners in TB care and control at all levels.