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Health | Civil society without borders by Sreelatha Menon

Civil society without borders by Sreelatha Menon

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published Published on Aug 21, 2011   modified Modified on Aug 21, 2011

Leprosy is generally taken as almost a non-issue in the country now. But, the surprise is that there has been a spurt in leprosy cases this year. No one seems to be worrying aloud about it too much, except a strange old man from Japan who has made it his job to eradicate leprosy and empower leprosy-cured people in this country. Of course, he works on the same issue in Africa and South America too.

Yohei Sasakawa, the chairman of the Nippon Foundation speaks animatedly about the issue, though it is another matter that you can’t understand a word. It is all in Japanese. The translator there helps you understand.

But, who will translate the crisis of the health scene to the Indian government, which is yet to have a reporting system for old and new diseases. He persuaded health secretaries and Parliamentarians to a conference in Tokyo a couple of years ago to discuss the issue of discrimination to leprosy-recovered patients.

He is the World Health Organization Ambassador for leprosy and has been using that role to motivate the health ministry to focus its annual lepsory conferences of health secretaries on specific issues.

For the much-neglected leprosy-affected patients and those cured yet stigmatised, the target set by the government is to reach the level of one patient per 10,000 population.

In 2010-11, a total of 126,800 new cases were reported. And, of the global cases of 244,796, India reported 133,717. That is, 54.6 per cent of the new cases were from India.

Sasakawa Foundation, the NGO arm of Yohei Sasakawa and Nippon Foundation, set up a National forum representing patients living in 850 leprosy colonies in the country a few years ago.

It was registered last year and the forum comprises state representatives of these colonies.

Sasakawa now spends his time in various states negotiating with chief ministers on the various entitlements these people should get. To begin with, the forum is demanding pensions for senior citizens in these colonies. Some get Rs 200 as pension, in Bihar for example. They get Rs 1,800 in Delhi and Rs 1,000 in Tamil Nadu, he says. He says this should be reviewed.

National Forum is now doing a survey of what pensions are being received in each state, how many are getting it and how many are left out.

He said states did have numbers but they were invariably wrong. Bihar, for instance, claimed there were 24 leprosy colonies, but the foundation found 64.

As for the spurt in cases, he says that in India elimination has slowed down with states not even having leprosy eradication offices.

He also likes the fact that Anna Hazare and other Indian activists want a say for leprosy patients in policy making. He hopes the National Forum would be given a space to negotiate with the government for issues ranging from pensions to skill development and placement of cured patients as well as their stigmatised children.

According to P K Gopal, chairman of the National Forum for people affected with Leprosy, the spurt is caused by better reporting by people who are no longer shy to report.

He says the forum had made a petition to the Rajya Sabha seeking changes in laws to empower leprosy-cured people. Parliament set up a committee which has asked the ministry of health for a survey to find out the burden of the disease.

Sasakawa says his main offensive is against discrimination. He recently met the minister for social justice and the National Human Rights Commission chairman, seeking changes in the Marriage Act. Sasakawa does not reveal the extent of funding for India. But the forum gets Rs 30 lakh annually for its activities.

It’s a civil society without borders, one may say. When the whole country is swept by a force wrought by a section of the civil society, this certainly is another dimension.
 
 

The Business Standard, 21 August, 2011, http://www.business-standard.com/india/news/sreelatha-menon-civil-society-without-borders-/446495/


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