“To deny people their human rights is to challenge their very humanity.”- Nelson Mandela, South African civil rights activist
This is probably the most applicable statement to patients suffering from XDR-TB in South Africa. Current health legislation in SA empowers authorities to detain patients with infectious diseases until the disease no longer poses a public health threat, thereby allowing quarantine restrictions to be enforced for a limited period (“SAMRC position statement on detenction of XDR TB patients | Health Systems Trust”, 2017). Herein lies the dilemma: XDR-TB patients suffer from an untreatable disease and confinement will be until death. Patients who have defaulted on their medication on more than two occasions face imprisonment for the rest of their lives. Not quite Pollsmoor prison but similar; a demarcated area, fenced in with barbed wire, a lock on the gate, guards on duty at all times of the day, no contact visitors, hospital gowns for clothes and allocated meal times. No so different from criminal treatment. South African Medical Research Council (SAMRC) argues that such prolonged isolation violates several constitutional rights, including the right to dignity and freedom of movement, and international human rights law (Baleta, 2007).
Initially, prolonged isolation for a second-time medicine default seemed fair to me. It could have been prevented by the patient themselves, hence they placed themselves in this situation. They are noncompliant with the health system. Maybe they do not take their health or the health of others seriously enough. Yet after a few discussions in class, I am quickly humbled as my judgement on people and their situations is highlighted, making me realise that I am no better than the fence and barbed wire that confines these patients making them prisoners. It is not for me to judge the reasons for patients’ defaulting. No one wants to suffer from TB, especially people who have already suffered from it and have experienced the horror of it. I am convinced that they would never wish it upon themselves again and would do anything in their power to prevent it. No one defaults willingly on their medication. Maybe they live in difficult conditions where it is not easy to gain access to their medication. Or taking their medication makes them feel so unwell that they cannot work inhibiting them from providing for their family. I realise that I am guilty of trying to justify the violation of XDR-TB patients’ human rights. No matter the patient’s personal circumstances or situation, it is never okay to violate their human rights and challenge their humanity.
But how could it be fair to the public if XDR-TB patients are free to roam, inevitably spreading the disease to whomever is in a close enough proximity to the moisture droplets they exhale? Public anxiety coupled with the risk that XDR-TB may rise to epidemic levels in SA is putting increased pressure on government and public health authorities for quarantine of patients and coercive measures to curtail the spread of XDR-TB (“SAMRC position statement on detenction of XDR TB patients | Health Systems Trust”, 2017) The power vested in public health legislation is accepted. The state intervenes and limits individual rights when the unlimited exercise of such rights results in harm to the greater community, given the ethical and legal obligations of the state to ensure that communities are protected against the consequences of an infectious disease TB (“SAMRC position statement on detenction of XDR TB patients | Health Systems Trust”, 2017).
The utilitarian approach, advocating that government policies be directed to provide for the greatest good to the largest component of the population, certainly makes sense from a public health perspective. Nevertheless, the humanitarian approach in which patient dignity, equality and freedom constitute core values, also needs to be taken into account for management of XDR-TB. This disease can in large part be traced to the failure of implementation of government policies. Had the government succeeded in the implementation of their policies, these patients could have been TB-free today. They do not deserve the inhuman treatment that they are currently receiving. The challenge to all South Africans therefore is to develop an ethically justifiable framework for management of XDR-TB based on sound legal principles.
Baleta, A. (2007). Forced isolation of tuberculosis patients in South Africa. The Lancet Infectious Diseases, 7(12), 771. http://dx.doi.org/10.1016/s1473-3099(07)70281-5
SAMRC position statement on detenction of XDR TB patients | Health Systems Trust. (2017). Hst.org.za. Retrieved 13 April 2017, from http://www.hst.org.za/news/samrc-position-statement-detenction-xdr-tb-patients