India has the largest number of leprosy patients in the world. Half of all leprosy sufferers are to be found there. In addition to the hundreds of thousands of new sufferers that are registered each year, India is home to some two to three million people who have had to endure the disabilities caused by leprosy throughout their lives.
The number of cases of leprosy recorded by the official services has undergone a remarkably fast decline in recent years but hasn't changed significantly since 2006. Whereas in 2003, the number of new leprosy cases registered by the national programme was no less than 370’000. In the following years 2007 and 2008 approximately 135'000 new cases have been registered. Experts throughout the world questioned this steep decline and the following "plateau" on account of the fact that it is scarcely possible in medical terms and indicates possible inconsistencies in the reporting and registration. This suspicion is given extra credence by a 2007 study on the incidence of leprosy in the Mumbai region: an active search turned up 5-7 additional unregistered sufferers for each registered one. This study suggests the possible existence of a large number of undiscovered and untreated leprosy sufferers elsewhere in India.
Since 2003, every Indian leprosy patient has been entitled to be examined and receive treatment at a health centre. All health workers should possess adequate knowledge of leprosy. Unfortunately, however, they often lack the knowledge required to be able to diagnose leprosy or identify potential complications in good time during the treatment. As a consequence, many leprosy sufferers continue to turn to the leprosy hospitals that are still to be found throughout the country.
The hospitals we support in India treat almost 10’000 leprosy suffers each year. The majority are people with disabilities or acute leprosy-infected patients with complications during the treatment. Comparable services are available from very few state-run hospitals since they lack the technical resources on the one hand and the requisite surgical and physiotherapeutic know-how on the other, to be able to carry out complex treatments and rehabilitations.
A person crippled by leprosy will need lifelong help. Leprosy victims are particularly at risk of running sores, leg amputations and blindness. With their crippled and numbed hands and feet, these people have great difficulty working in the fields, the factory or the home and may loose fingers and toes as a result of repeated injuries.
Prevention is possible with simple means. At our hospitals, patients learn how to look after their numb limbs for themselves. We finance first aid kits and distribute simple shoes with special soles to protect the feet. After amputations, we provide artificial limbs for the patients. Severe muscle paralysis can be alleviated through complex operations that increase mobility. We also support social integration of leprosy victims through the provision of small loans. In this way, sufferers are able to build up a livelihood for themselves and lead an independent life despite disability.
Further information on leprosy
All of our hospitals in India started out as specialist leprosy hospitals. Today, however, they are open to all poor people who would not otherwise be able to afford medical treatment. Nowadays, the hospitals also treat general skin diseases, people with tuberculosis or sick infants and children. Many also offer assistance with complicated births and surgical emergencies.
For the very poor, treatment is free of charge; otherwise the treatment costs reflect the patient’s income. In this way, through flexible treatment prices, our hospitals endeavour to partly self-finance their services and become less dependent on our contributions.
Three-quarters of the population in India still live in rural areas. The influx of poor people to the cities still continues unabated however. The largest slums in the world are to be found in India, whereby Mumbai, the 15-million strong metropolis on the Arabian Sea, is particularly notorious. There, more than half of the population live in slums, some in quite well-established houses with modest infrastructure, the majority, however, in dilapidated huts. The slum dwellers often lack access to clean water and there are no sewers. Medical services are few and far between and correspondingly inaccessible.
The slum dwellers are less healthy than the rural population. Tuberculosis, typhoid, dengue fever, diarrhoea and pneumonia are particularly prevalent in the slums and often result in premature death.
Since 2006 we run a project for the people in the slums of Mumbai. In the current year we have also started working in Goa, looking at the realities beyond the spectacular tourist beaches. Local casual labourers, who work in the tourist industry, live in horrid slums with their families, lacking all dignity. Both FAIRMED India slum projects focus on women’s empowerment (check out the box on the left).
Women help the sick and improve the living conditions in their neighbourhood. That is the key to a better life in the Bainganwadi slum, a project coordinated by our local partner organisation (Lok Seva Sangam LSS) that we have been supporting since 2006.
In the meantime, several hundred women have joined together to form self-help groups. These groups advise the population of the importance of hygienic living conditions, ensure that the children regularly attend school, explain the dangers of tuberculosis and other illnesses, motivate people to attend the health services and get themselves inoculated.
The women in these self-help groups produce sweets and print greetings cards to sell in order to contribute to their family incomes. A shared emergency fund covers the costs in the event of unexpected problems such as a sick child. In addition, the women work as volunteers for the national tuberculosis programme.
They accompany tuberculosis sufferers during their treatment and give out medicines. Patients can collect their medicine three times a week from the women and are obliged to take it under supervision. Many day labourers would not otherwise be able to obtain treatment.
When they return to the slum after their work, the health centres are already closed, however, they can always consult the women in the self-help group. If a patient misses his treatment, the women seek him out and persuade him to come for treatment.
The LSS organisation helps the women. With our assistance, it has established a "Neighbour house” in the slum where meetings, consultations and training take place. Social workers assist the self-help groups, so that they learn how to handle finances and develop all-round better know-how and self-confidence.
LSS medical personnel operate mobile and fixed clinics. In LSS training courses, school dropouts learn a trade in order to enable them to earn a living for themselves.
LSS also helps the population represent their interests to the city authorities. In the meantime, the latter has learned to take the population of the slums more seriously. For example, the slum dwellers gained a better water supply and the muddy streets were asphalted, making life in the slums cleaner and healthier during the monsoon season.