Discriminatory laws against people affected by leprosy still exist in more than 20 countries worldwide, including Australia.
These colonial-era laws are a relic of a time when leprosy was misunderstood, and its sufferers treated inhumanely. Today, they enshrine prejudice and discrimination against people affected by leprosy through outdated scientific beliefs about the spread of the disease and best practices for its treatment.
The Leprosy Mission advocates worldwide to educate Bureaucrats, duty-bearers, politicians and lawmakers about leprosy and overturn these discriminatory laws.
Times have changed for leprosy patients
In ancient times, people Influenced by all religious beliefs, thought that leprosy was a punishment for sin, which fostered fear, social exclusion and isolation. So acute was the suffering of those affected that leprosy was believed to be highly contagious and was mistakenly thought to be syphilis.
There was no cure for leprosy before Norwegian physician Gerhard Hansen identified the bacterium (Mycobacterium leprae) in 1873 as the causative organism for leprosy, defying the hereditary affliction theory of the disease. Then, in 1943, Guy Henry Faget and his co-workers at Carville, Louisiana, developed a treatment that, while imperfect, stopped the disease’s progression.
Left untreated, the disease goes on to cause significant permanent impairment and highly visible damage. But today, leprosy is easily curable, and treatment at an early stage can prevent the disease from advancing and causing disabilities. The World Health Organisation also provides Multi-Drug Therapy to leprosy patients free of cost.
We now know that while leprosy is spread between people, it is not highly contagious. Prolonged contact is necessary, and most people who contract the bacterium do not develop the disease. This is because 95 per cent of the human population has a natural immunity to leprosy.
We also know the loss of extremities often associated with leprosy is not a direct cause of the disease. Instead, it is an indirect result of the damage to nerve endings, which prevents sufferers feeling pain in the affected areas and increases the chance of injuries. These can develop secondary infections that can lead to the need for amputation.
Advocates target laws that lag behind modern medicine
Unfortunately, many laws discriminating people affected by leprosy have not been updated to reflect current medical knowledge and continue to stigmatise patients. For example, while India is leading by example and has been successful in amending more than 34 laws, 93 discriminatory laws, mostly at subnational (state) level, still remain.
In Malta, two leprosy-related pieces of legislation were repealed earlier this year when The Lepers Ordinance and the Lepers Regulations (Repeal) Bill replaced the Lepers Ordinance introduced in 1919, and the Lepers Regulations introduced 20 years later. *
The Lepers Regulations controlled leprosy patients by placing them in hospitals under a strict regime and limited their interactions with others. Patients discharged from the hospital faced further restrictions, including a ban on practising various professions, thereby limiting their economic prospects. The Lepers Ordinance prohibited non-citizens from entering Malta if leprosy affected them.
Frontline fighter of discrimination comes to Australia
Nikita Sarah is the Head of Advocacy and Communications at The Leprosy Mission Trust India. Nikita was in Australia recently as the international guest and keynote speaker at The Leprosy Mission Australia’s National Conference in Melbourne.
Nikita has over 20 years of experience in advocacy and communication, and her core areas of expertise include policy influencing, social and behaviour change communication, programme management, and forming a strategic alliance with the Government of India, state governments, NGOs, media and the private sector.
The event commemorated the 150th year Jubilee of The Leprosy Mission Globally. The program informed delegates about advances in eliminating leprosy, with clear action opportunities to work towards zero leprosy by 2035.
* Leprosy Mission Australia works to eliminate the causes and consequences of leprosy. One of its aims is to work towards a goal where the word ‘leper’ is not used any more. This word can be upsetting to those affected by leprosy and for the people who care for them.
The Leprosy Mission advocates for the term ‘people affected by leprosy’ to be used. The word ‘leper’ (although historically and legally accurate in its use in the context of this article) is derogatory and is associated with someone who has been rejected, ostracised, or regarded as an outcast.
Our hope is that everyone may consider ‘people affected by leprosy’ as the correct term and join with The Leprosy Mission to defend the rights and dignity of people who may be unable to speak up for themselves.
PHOTO CREDITS: Photos of Nikita at Conference by Rama Rusman, Leprosy Mission Australia’s Digital Content Coordinator.
