6 ways to tackle stigma on leprosy

Dhondhi (third from the right) with his friends and neighbors showing their government-issued Job Cards. Five years ago, Dhondi was diagnosed with leprosy but didn't develop deformities because of early treatment. Photo by: ILEP

Your hands tingle, the skin feels tight and reddish patches appear on your arms.

The good news is that you will be cured by a six-month course of treatment. The bad news is that you have contracted leprosy, one of the world’s most stigmatized diseases: Sufferers were cast out from society in biblical and Koranic times; in some countries, they are still excluded.

On World Leprosy Day — Jan. 25 — the International Federation of Anti-Leprosy Associations is calling for the repeal of all discriminatory laws affecting people with leprosy.

Some 19 countries have laws on the statute book preventing people with leprosy from working in certain jobs, remaining married or traveling freely. They stem from the days when quarantine was thought to be the response to leprosy: Go to the island of Spinalonga, Crete, and you can still see the tunnel for people banished to this leprosy colony, in use until the 1950s. It was known as Dante’s Gate, because patients did not know what was going to happen to them when they arrived.

In 2005, an inquiry in Japan awarded compensation to leprosy patients who had been forcibly quarantined up to 1996 — a policy without scientific justification, since the disease is not highly contagious, has been curable since the 1940s and most countries stopped isolating leprosy patients in the 1960s.

The 2010 U.N. General Assembly called for governments to repeal discriminatory laws with the adoption of a resolution on the elimination of discrimination against persons affected by leprosy. Some states, including Greece, China, Ethiopia and Ecuador, have now repealed their laws, while in others the stigma remains.

In India, people with leprosy have reportedly been turfed off public transport. In Pakistan, people have been repatriated from Gulf states as soon as they are diagnosed with leprosy. In Bangladesh, a recent survey showed that 3 out of 10 people would refuse to purchase items from people with leprosy. In Nepal, a recent attempt has been made to introduce a law providing for annulment of marriage on grounds of leprosy.

But women and men affected by leprosy are fighting back.

In Nepal last month, 300 of them lobbied parliamentarians against the new law. Nongovernmental organizations working with leprosy briefed officials at the Ministry of Justice that a law against a disease that is both curable and pretty difficult to catch does not make sense. Such laws, whether enforced or not, reinforce ancient stigmas against people affected by leprosy.

Discriminatory laws against leprosy reinforce this stigma. But change is happening.

Ethiopia not only repealed its laws, but on World Leprosy Day each year the government — fronted by the Ethiopian National Association of People Affected by Leprosy — supports a regional public education campaign targeting traditional practices, for instance that women and men affected by leprosy cannot own land or marry.

And Egypt and India too are reviewing their own national laws on leprosy.

Last week Bill and Melinda Gates’ annual letter rightly highlighted cost-effective ways that neglected tropical diseases such as leprosy are being tackled. Medical treatment for leprosy is free; it is the social cost of stigma that is high, excluding the poorest people with leprosy from earning a livelihood and benefiting from society.

Every year, more than 200,000 new cases of leprosy are detected. The treatment is simple — but getting rid of the stigma of the disease is impossible while discriminatory laws remain. By World Leprosy Day 2016 they could all be repealed if the following six steps were taken:

1. Communities: Groups of women and men affected by leprosy are supported to organize and negotiate for their rights.
2. States: Existing discriminatory laws on leprosy are reviewed and abolished.
3. Media: Stop using offensive words such as “leper” and take up cases of people affected by discriminatory laws.
4. Human rights groups: Advocate for the implementation of the 2010 U.N. General Assembly resolution on the elimination of discrimination against persons affected by leprosy.
5. The United Nations: If the U.N. sustainable development goals are to “leave no one behind,” then their impact on key vulnerable groups, including people affected by leprosy, must be measured.
6. Donors: Fund programs to tackle the social, as well as the medical, consequences of leprosy.

On World Leprosy Day 2015, we call for more visibility to be raised among the international development community to eliminate discriminatory leprosy laws — and rid sufferers of the age-old stigma.

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About the author

  • Marie Staunton

    Marie Staunton became chair of the Crown Agents Board in July 2015. She has over 25 years of experience in the international development and human rights sectors including chief executive roles at Amnesty U.K., Plan U.K. and Interact Worldwide. A qualified lawyer with considerable commercial experience, she has also been a chair and trustee of a variety of local, national and international organizations including the Disasters Emergency Committee, the EU Fundamental Rights Agency Equality and Diversity Forum, Grow Up Free From Poverty Coalition and Amnesty International.

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