Since the end of January marks the ‘leprosy eradication day’, while setting future goals for keeping the leprosy burden low, we must acknowledge how well Pakistan has done and remember Dr Ruth Pfau’s unparalleled services in this regard.
Dr Ruth left Germany in 1960 and only within three years of her arrival in Pakistan she founded the Marie Adelaide Leprosy Center (MALC) with the support of Dr. Zareena Fazalbai. Despite conflict over housing ‘lepers' in the residential area, Dr Pfau succeeded in strengthening MALC. Her efforts led to MALC partnering with the Pakistan government in establishing a leprosy control programme in 1968. It was her dedication and national effort combined that made Pakistan the first country in WHO’s Eastern Mediterranean Region (EMR) to have controlled leprosy. As per WHO’s recent report ‘Global leprosy update, 2019: time to step-up prevention initiatives’, Pakistan is not listed within the 23 top global priority countries for grade 2 disability G2D leprosy cases, which is indeed an achievement.
Grade 2 disability G2D associated with leprosy, is defined as ‘visible deformity of the hands and feet; and severe visual impairment with vision worsening than 6/60’.
Leprosy, the curse of untouchables
Leprosy also known as the Hansen disease; is the mildly infectious disease affecting skin, mucous membranes of the throat, nose and eyes; along with peripheral nerves. The causative agent mainly is the bacillus ‘Mycobacterium leprae’ and in 2008 ‘Mycobacterium lepromatosis’ was also found to cause the disease with slightly different symptoms. The bacilli are responsible for damaging peripheral nerves and the body tissues of the infected individual, resulting in physical deformities of limbs and adverse impact on eyesight. It however remains characterized as ‘mildly infectious’ because the infection is difficult to contract as 95% of people are unsusceptible to bacillus and in few individuals contracting the disease, it will be self-limiting and even patients with early symptoms will self-heal eventually. The causative bacterium cannot pass on via casual touch, eating together even sexual contact and does not pass to fetus from the expecting mother. In both the conditions i.e immune response towards the bacillary infection and no effective immune response; the M.leprae can unleash havoc.
In case of immune cells crowding around bacteria, no effective clearance of immune cells occurs, which persist sealing of the bacterium in the form of tubercles causing ‘tuberculoid leprosy’. Such intense cellular response is often seen in the forearm or the lower leg. The cellular reaction begins in the skin, the tissues, the sweat glands, hair follicles and the nerve endings. Gradually, the main nerves in the body are affected, resulting in the loss of sensation and motor control in the trunk. In the second case where there is no strong immune response, bacteria freely multiply in tissues and spread widely to other organs such as face, ears, nose and cheeks. In bad cases of high bacterial load, the M.leprae laden soft tissues are dissolved, leading to severe organ damage.
Leprosy control situation in Pakistan
According to WHO, Pakistan has been grouped in the Eastern Mediterranean region EMR which has lower disease burden than the South East Asian region which has the highest case detection rate (per million population) i.e 70.4, followed by Americas (29.5), African (18) and then EMR (5.8). India, the next door neighbor to Pakistan, on other hand is not only enlisted in the 23 red alert countries but also alarmingly has the highest number of cases detected in 2019 i.e. 114,451.
Generally, in the WHO’s recent report countries have been grouped based on number of cases at the end of 2019. India, Brazil and Indonesia have the most alarmingly large number of leprosy cases, exceeding 10,000. Then there are countries with 1000-9,999 cases including Nepal, Bangladesh, Myanmar, Philippines, Ethiopia, Congo, Tanzania, Angola, Madagascar and Nigeria.
Pakistan stands in line with countries that have recorded cases between 100 and 999; i.e. China, Thailand, Vietnam, Papua New Guinea, Venezuela, Paraguay, and the United States. The least number of leprosy cases were reported from Afghanistan, Iran, Saudi Arabia, Syria, Libya, Morocco and Peru. Meanwhile, no new cases of leprosy were reported during 2019 from Iraq, Uzbekistan, Azerbaijan, Jordan, Romania, Hungary, Czech Rep. Slovakia, Germany, Norway, Finland, Australia, Iceland and Chile. No data on leprosy cases is available for Russia, Kazakhstan, Mongolia, Canada and Greenland as per the WHO record.
Acknowledging leprosy control institutions in Pakistan
The Leprosy control in Pakistan has been made possible due to the institutions working towards its eradication and control. The two big names regarding leprosy control intervention all over Pakistan are “Marie Adelaide Leprosy Cente” (MALC) in Sindh and “Aid to leprosy Patients” (ALP) in Punjab. A total of 175 leprosy control units across country are found. About 157 leprosy centers are run by MALC while ALP, a sister organization is a hub of 18 leprosy centers. The 175 leprosy control centers are functional in Sindh, Balochistan, Khyber Pukhtunkhwa, Azad Jamu Kashmir, Gilgit Baltistan and Punjab. The efforts of provincial governments are commendable in supporting the recruitment and pays of the paramedical workers in these centers. However, MALC and ALP contribute their fair share in managing the logistics, anti-leprosy medicines at the respective centers. The leading institutions are found in Sindh, Khyber Pakhtunkhwa (KP) and Punjab since the disease is more prevalent in Karachi and some areas of KP.
Within Karachi, Leprosy patients welfare trust (LPWT) is a charitable organization providing free treatment to leprosy patients. The idea of Marie Adelaide Leprosy Center MALC originated in 1956 when ‘leprosy technicians’ funded by the German Leprosy Relief Association GLRA, began travelling in search of leprosy patients and following them till their complete recovery. In 1965, the first batch of 16 leprosy technicians officially started at MALC. In 1974, the institute got affiliated with Sindh Medical Faculty and in 1983, National Institute of Health NIH in Pakistan recognized MALC as ‘the NIH for leprosy’. In NWFP there are currently 38 centers, most in Malkand and Hazara region, the leading names include ‘Leprosy center of Lady Reading Hospital Peshawar’ and the ‘Leprosy Hospital district Mansehra’. The oldest facility dedicated to leprosy treatment is in Rawalpindi, Punjab, known as the ‘Rawalpindi Leprosy Hospital’. Initially founded by the British Leprosy Mission in 1904, now the hospital is run by Aid to Leprosy Patients (ALP). This oldest facility currently is functional with 97 beds for leprosy patients, with treatments for leprosy associated co-morbidities, skin disorders, psychological counseling and rehabilitation of the affected individuals.
Leprosy misconceptions and cures
Historically, the stigma associated with the disease was enormous -- to the extent that an infected individual, reduced to a social outcast ‘leper’, was isolated in ‘leper colony’. But in today’s world, just as a cured cancer patient isn’t ‘cancerous’ anymore, a cured leprosy patient isn’t ‘leprous’. Nevertheless, stigmas and misconceptions remain, as it is assumed the disease may spread by skin to skin contact, via respiratory tract through droplets or even insect bite. As a matter of fact, leprosy cannot be transmitted via mouth, lungs, digestive tract or unbroken skin. It is however transmitted through the intact lining of the nose and via breaks in the skin.
Treatments of leprosy
Oil of the chaulmoogra seeds (Hydnocarpus wightianus) remained in use in China and India for centuries. Eventually, researchers after the 1930s found sulfones effective enough to replace the chaulmoogra seeds oil as leprosy medication. Later, a combination of bacteriostatic and bactericidal drugs (dapsone, clofazimine and rifampicin) remained in use till multi-drug therapy (MDT) which is the preventive and curative medication to date, was hailed as the best strategy against leprosy.