Ineffective and insensitive
Leprosy, also known as Hansen’s disease (HD), is a bacterial infection caused by the bacteria Mycobacterium leprae and Mycobacterium lepromatous. Its incubation period ranges from 5-40 years. Symptoms that develop include granulomas of the nerves, respiratory tract, skin, and eyes. This in result leads to damaging the ability to feel pain and loss of parts of extremities by repeated injuries or infection due to unnoticed wounds. Weakness and poor eyesight is also seen in some cases.
Contrary to popular belief, it is not very contagious. Leprosy is less contagious compared to other infectious diseases caused by similar bacteria like tuberculosis. According to the centre for disease control (USA), 95 percent of the population has natural immunity against the disease. Therefore it is not a common disease. Its transfer is believed to occur through a cough or contact with fluid from the nasal secretions shed by sneezing or coughing of untreated patients of lepromatous leprosy. Leprosy occurs more commonly among those living in poverty with unhygienic living conditions. In Pakistan, majority of the cases are in Central Sindh, Balochistan and remote areas of KPK.
Today, leprosy is curable with a treatment known as multi-drug therapy (MDT), which is highly effective
Today, leprosy is curable with a treatment known as multi-drug therapy (MDT), which is highly effective. This treatment for multi-bacillary leprosy consists of rifampicin, dapsone, and clofazimine for 12 months. These treatments are provided for free by the World Health Organisation.
Globally in 2014, the number of chronic cases of leprosy was 189,000 and the number of new cases was 230,000. The number of chronic cases has decreased from some 5.2 million in the 1980s. Most new cases occur in 16 countries, with India accounting for more than half. In the past 20 years, 16 million people worldwide have been cured of leprosy. Due to the astounding work done in the field by Dr Ruth Pfau and her organisation Marie Adelaide Leprosy Centre (MALC), leprosy in Pakistan, the country is now awarded the “controlled” status and last year there were only 1000 new cases reported in the country.
Leprosy has affected humanity for thousands of years. The disease takes its name from the Latin word lepra, which means “scaly”, while the term “Hansen’s disease” is named after the physician Gerhard Armauer Hansen. In biblical times, this disease has been associated with devil and sins. It is reported in the Bible that Jesus cured a leper. Many religious scriptures speak of lepers as “unclean” and “impure” and are ordered out of the main population. The disease was reported as a wrath of God on those who led a sinful life. Separating people by placing them in leper colonies still occurs all over the world, especially in places such as India, China, and Africa, where there is a strong religious and social influence. In Pakistan, the biggest leper colony used to be in Manghopir, Karachi. Leprosy has always been associated with social stigma for much of history, which is a barrier to self-reporting and early treatment. Some consider the word leper offensive, preferring the phrase “persons affected with leprosy”.
During my meeting with Dr Pfau she explained that “95 percent of the human immune system is strong enough to fight off any leprosy related bacteria if it is transferred. Besides, Leprosy can only be termed as contagious until the first few doses are administered.” On another question she said, “While WHO recommends that doctors/medical practitioners use protective gear like gloves and masks when treating leprosy affected patients, me and my staff choose not to. What image am I giving to the family of the patient if I as his doctor keep layers of protective clothing between us? It’s all in the head. 60 years treating such patients and not one of my staff members has ever been infected with leprosy.”
Globally in 2014, the number of chronic cases of leprosy was 189,000 and the number of new cases was 230,000
In her opinion, Leprosy is a disease and absolutely curable one at that. It’s the effects it causes that may disable a patient for life. And having such discriminatory mindset is not only a reflection of the outdated thinking of the society, but also a blemish on her decades of work on the disease in Pakistan.
Dr Mutaher Zia, another practitioner working with Leprosy patients for the last 25 years opines, “Presently the available treatment, as recommended by WHO, is highly effective and renders the patients non-infectious in 3-4 days. Therefore once patients are started on treatment there is no need to isolate them, as they are not at risk of transmitting infection.” With reference to the current social and cultural stigma he emphasised that, “The disease leprosy does not make any person incapacitated or unable to perform marital duties and/or operate heavy machinery. In some cases, as an after effect there has been loss of feeling in hand or feet muscle, which make a person disabled, to which the normal disability laws apply.”
It is a unanimous voice of all medical practitioners who have dealt with leprosy patients that the current mindset of the country is not only impractical but also insensitive to a patient who has to face enough social ridicule to be treated by the law this way as well.
Note: This is part one of a two-part article. The second part can be accessed here.
