Govt to introduce laws against discrimination on account of communicable diseases including TB, HIV and Filariasis

The incidence of leprosy in Sri Lanka according to medical statistics is 2000 cases per year. With the cultural stigma and the physical ravages the human body undergoes, the task launched to mitigate the social and administrative concerns that confront leprosy patients, is commendable.

The Ministry of Health is scheduled to unveil new laws to protect the rights and prevent discrimination of patients with communicable diseases, particularly leprosy, tuberculosis, human immunodeficiency virus, AIDS and filariasis.

The proposed laws with a new Act, will repeal and amend certain Sections of the Lepers Ordinance No. 4 of 1901 introduced by the British, amending the clause in Section 1:2 in Chapter XXIII of the Establishments Code dealing with the provision of special leave for public and civil servants suffering from leprosy to instead grant two weeks of paid leave if the patient consents to such and for any additional time to be given as per medical advice.

A committee that comprised of the Anti-Leprosy Campaign (ALC), the Chief Epidemiologist, the Deputy Director General (Public Health Services), the legal department of the Ministry of Health, consultant specialists in community medicine and human rights (includes civil rights) lawyers made the recommendations.

The harrowed body of a leper according to Deputy Director of the ALC Dr. Priyantha Karunarathna manifests the anatomy in the blighted skin, the stunted scabby stumps of shrivelled limbs and stubby digits and caved in visages.

As seen in the images of pain from Persian poetess, Forough Farrokhzad’s ‘The House is Black’, a documentary about the everyday life of a leper colony, the story is of human sadness, damnation, and non reprieve, like no other.

The tragedy of this is that the leper becomes the spook of the collective unconsciousness. There is however no need for such demonization. These people of the earth are individual persons, complex, multifaceted human beings who are part of a community and not wretched sub-human grotesqueries, simple stereotypes, obscene objects or helpless caricatures. They require empathy not pity disguised as ersatz sympathy.

What is leprosy?
Leprosy is a chronic infectious disease caused by mycobacterium leprae a bacteria which affects the skin and the peripheral nerves causing weakness in the nerve supply. Transmission of leprosy occurs by droplet infection. The disease is transmitted from human to human. Whether there is a hereditary component to the disease is being investigated although there is no evidence to connect genes to the disease thus far, according to Dr. Karunarathna.

Leprosy is tied with socio-economic conditions. Though leprosy spread  the spectrum, it is more prevalent in impoverished areas, densely populated slums and  the underprivileged. Poor nourishment and poor ventilation due to overcrowding in spaces are conditions favourable for the spread of the bacterium which spreads slowly.

This leads patients to query as to when they were first exposed via very close contact, a work colleague and how they contracted it.

Leprosy is easily diagnosable, treatable and curable.  Treatment with antibiotics depends on the severity of the disease. For the mild and incipient form of the disease,  six months of treatment is needed while for more advanced cases  where the bacterium load is high, treatment may be  for one year. Patients no longer remain transmitters of the disease 48 hours following the commencement of treatment.

A major issue associated with leprosy is the development of disabilities leading to a loss of productivity and social stigmatization. Patients sometimes lose their employment, housing and place in society. It is high time that such wickedness and monstrosities in the form of discrimination were put an end to. These disabilities result from reactions occurring at any stage of the disease. The disabilities could be prevented by early detection and treatment.

Around 2000 new patients are being reported every year for the past decade from 26 districts. Last year, the majority were from the Colombo district and the Western Province. Sri Lanka has a high percentage (9%-10%) of patients with visible deformities at the time of diagnosis, attesting to the fact that it was only after six months since the symptoms had appeared that patients presented themselves for diagnosis. Approximately 50% of the new patients had been diagnosed late. This is indicative of a lack of public awareness in this regard. Children below the age of 15 years with leprosy, percentage-wise being 9%-10%, attest to the fact that there has been continuous active transmission through undiagnosed patients.

Colonizing the Leper – Govt response
Meanwhile, Deputy Director of the ALC Dr. Priyantha Karunarathna said that there were approximately 30 patients at the Hendala Leprosy Hospital who had no homes and were doomed to wait out the rest of their days in the hospital. He said that there are cases where spouses upon finding out their partner’s leprosy status, filed for divorce.

He also acknowledged there was no Government programme of reintegration, adding that leprosy patients who are poor, despite there being subsistence provided by the Department of Social Services, were not receiving support as those manning the points of distribution of the subsistence such as the post offices and the government agents discriminated and shunned the visits of the afflicted to collect their dues.

“When Public Health Inspectors visit the homes of patients and follow up to ensure compliance and to carry out contact tracing, they are made unwelcome. There is however the possibility that the others might get the disease. All of this is due to the stigma associated with the disease. The leper colony mentality prevails. Even Government officers fear losing their jobs. Employers think that it is not good to keep someone with the disease. Patients are traumatized. In this sense, these communicable diseases can be devastating. And we call ourselves civilized.

“Any workplace and any management must be open-minded. We don’t advise anyone with the disease to keep away from work or their routines, we encourage them to engage freely. Patients suffering must be cared for and treated with dignity,” Dr. Karunarathna pleaded.

Elsewhere, he pointed out that there are quite a few leprosy patients in prisons as well as beggars who commence treatment and subsequently default, thereby willfully escaping treatment.
“There should be a strategic plan with stakeholders. Mere talking won’t do. What is being done is wholly insufficient. This year, we are planning to develop peer groups with the view of establishing associations with leprosy patients. We are looking to form partnerships with people and groups who are willing to support us. This will add strength. Discrimination still exists. We have to address this. This is not a disease to be feared like dengue,” he further emphasized.

Patients must come to the health system and start treatment. They need additional support if they have a disability. If the disease is detected early it can be reversed, but if it has gone beyond the advanced stage, the disability may become permanent. On the other hand they must be morally, religiously and socially acknowledged and supported. The legislation cannot be completely overhauled as provisions of it deal with the management of the assets of patients. Their rights must be discussed. They must gain the benefits from the assets. It can be completely repealed after the best way to address these concerns is devised.

With regard to controlling the disease, self-reporting by affected patients, clinical management including case detection, reaction management, prevention of disabilities from arising and rehabilitation, improvement of accessibility to services, a process which involves consultant dermatologists, health staff including medical officers of health and those involved in public, preventive and curative health, the coordination, monitoring and evaluation of control activities, have to be focused on.

Wither  our humanity? There is no us or them. They are us and we are them. We must live among and we must live with.

Case studies in stigmatization and discrimination

The patient in this case was a boy in his early 20s from the Gampaha district. He had wanted to join the aviation industry as a pilot. He had been selected for a related course. During training, he initially noticed patches on the skin. He had not neglected the matter and had gone to a doctor and had been diagnosed as having leprosy and treated.

Because he was in training he had to inform others. Thus he divulged the condition to his teachers and supervisors. Initially, he had been given a grace period to stay at home and complete the treatment and return. Later, he had been deemed as not being suitable enough and without telling him directly his career there had been terminated.

In a school in the Colombo district some children who had developed the disease had been completely isolated from the others, not allowed to talk to the others and not permitted to dine with the others. All forms of harassment had been meted out to them. Such incidents have been reported from other districts as well.

A worker in a garment factory in the private sector had got the disease. In this instance however, when the factory management had come to know of the matter they had called in the ALC’s leprosy control programme and consulted them on what to do and how to proceed. As a result, the worker was able to keep his job. There are however many cases where patients, especially those in the Board of Investment industrial zones in pockets with highly endemic populations including those in the Colombo district, don’t tell their employers and request the ALC not to do so either. The ALC complies with the requests of these patients for obvious reasons.

Of the laws that can be deemed as applicable in cases where there is willful non-disclosure of the leprosy status, it must be noted that in the Penal Code in Chapter XIV on offences affecting public health and safety, Section 262 deals with any negligent act which is likely to spread the infection of any disease dangerous to life and Section 263 deals with any malicious act which is likely to spread the infection of any disease, both offences which are punishable by imprisonment or a fine or both.

“What will happen to the other workplace peers? This is not acceptable either. The other people must be screened as the disease tends to develop late. Everybody must be safe. There is a social responsibility,” Dr. Karunarathna elaborated.