The Leprosy Mission Remembers the Impact Diana made

As the concert organised by the Princes to remember their mother is shown around the world, one of the beneficiary charities recalls the impact she made on its work.

By reaching out to people with leprosy Diana, Princess of Wales brought their plight to the world’s attention and helped to fight the stigma of the disease. When television broadcasts in November 1989 showed Diana shaking the hands of leprosy patients at a hospital in Sitanala, Indonesia, against the advice of officials and the press, a neglected and ignored disease was thrown into the spotlight.  She recognised that more than medicine, patients needed the healing power of touch.

Dr Ruth Butlin CBE, who was superintendent of Anandaban Hospital when Diana visited Nepal as Patron of The Leprosy Mission in March 1993, observed Diana’s effect on the patients. ‘When they heard about her coming visit, the in-patients were delighted. Most did not know she was English nor that she was married to the heir to the throne, but they understood that she was a foreign Princess. After the visit we found they were not disappointed; perhaps a little surprised at her informality, but overwhelmed by her kindness - the way she paid full attention to the patient in front of her, ignoring staff, reporters and dignitaries to listen to their story.

‘Because of the Royal visit, Anandaban Hospital appeared in the news on prime-time Nepali television. The consequent publicity resulted in several previously undiagnosed patients voluntarily coming for treatment over the next few weeks.

‘At the time and afterwards some people said “no Nepali Princess would do this” whereas in fact Princess Shanti had visited earlier and Princess Shruti visited a few years later. The difference was perhaps that they came to see the hospital whereas Diana quite obviously came to see the patients.

Diana gave the gift of time.  Shovakhar Kandel, superintendent of Anandaban Hospital, says, ‘She was interested in patients’ stories and was curious to know how surgery had made a difference to their lives.

‘Before, dignitaries had come to see the hospital from a distance, but Diana came closer. Her heart was for the people.’

Diana said, ‘It has always been my concern to touch people with leprosy, trying to show in a simple action that they are not reviled, nor are we repulsed.’ Her involvement in The Leprosy Mission’s work broke down barriers for people with leprosy and inspired staff and supporters.

The Leprosy Mission is mindful of Diana’s contribution as we continue to fight stigma and care for people affected by leprosy, even after they no longer have the disease.

Background

Diana, Princess of Wales was Patron of The Leprosy Mission from 1990 until her death in 1997. The Leprosy Mission is one of the beneficiaries of Concert for Diana.

very two minutes someone finds out they have leprosy. If it is not treated in time, leprosy can leave people with disabilities, in poverty and isolated from their communities. Stigma can be one of the worst effects of leprosy.

The Leprosy Mission offers hope to people affected by leprosy. We work in around 30 countries, restoring sight and mobility through surgery and rehabilitation, advocating to end stigma and providing training for employment.

Click here to read more about how the concert raised the profile of Leprosy

PRESS RELEASES

30 May, 2007

China Announces $49.7m Budget to Renovate Leprosy Villages but Questions Still Remain

Photo: HANDA

China’s 600 leprosy villages will be renovated over the next two years, according to an announcement by China’s Health Ministry.

A resident of one of China’s 600 leprosy villages

The National Development and Reform Commission, the top planning body, has approved a massive budget of 276 million Yuan (NZ $49.7 million) for the renovation of over 600 isolated leprosy villages, the Health Ministry said.

The move by the Chinese government will improve the living conditions of around 20,000 residents who live as outcasts in poverty in isolated rural areas. Nearly half of the recovered leprosy patients are living in houses that are dilapidated and dangerous. Medical services are seriously lacking, and without proper health care, the villagers suffer increasing disability and deformity.

The Ministry said, “The plan is to revamp the infrastructure, install necessary living facilities and medical and rehabilitation equipment as we adjust or merge the existing villages in 1-2 years to improve the inhabitants' quality of life.”

People affected by leprosy still live in isolated villages in China after being exiled forcibly by the government – a practice which ended when a hugely successful multi-drug therapy was introduced.

Reactions to the decision have been optimistic but cautious.

Dr Michael Chen, leader of HANDA Rehabilitation and Welfare Association, a grass-roots organisation made up of and run by leprosy-affected people, is concerned that not all villages needing attention will be renovated. “They might rebuild villages at a prefecture level and then move some other villages into them. Will the villagers be asked their opinion about what kind of houses or facilities they need, or will they just be provided an institutional facility? In many areas, leprosy villages have become agriculturally based places where people live with their families and farm for a living. It will not be possible for them to live in an institutional facility.”

The Leprosy Mission New Zealand’s Harriet Sewell agrees. “While we applaud the commitment by the PRC [People’s Republic of China] Government to improve the living situation of those affected by leprosy, we encourage grassroots organisations, such as HANDA, to ask questions about the process. One main area of concern is: to what extent are the people affected by leprosy consulted in any new plans, and are their opinions counted as most important?”

Dr Chen also asks, “If the villagers don't want to move from their village where they have been living for decades, will the government help to renovate their houses and improve other facilities? Or will they just be forced to leave?”

He points out that there are many remote communities that were not set up by the government but formed when those affected by leprosy grouped together and eventually settled to create a new village. “These kinds of villages are not included in the 600 villages from the government statistic. However, their situation is even worse than that of the villages set up by the government. Can these kinds of villages also be included in the renovation project?”

TLM New Zealand partners with HANDA in China

Leprosy is curable but many people in China are still superstitious and see it as a curse. They often hide their symptoms from their family and community and so it is important that leprosy work reaches out beyond the medical symptoms. Along with preventing disability, TLM’s work seeks to partner with the leprosy-affected people, encouraging them to advocate for their rights and those of their communities.

The Leprosy Mission New Zealand works with HANDA Rehabilitation and Welfare Association, an indigenous grassroots organisation made up of and run by people affected by leprosy. Their goal is to advocate for human rights and to encourage community participation in leprosy villages in 2 of the areas where it works, Guangdong and Guangxi provinces. In 2006, HANDA focussed on recruiting volunteers, who are mostly students or social workers. By working in or near the leprosy villages, they create opportunities to decrease leprosy stigma and educate their own families, who are often afraid for their children’s well-being because they have become involved with leprosy. These volunteers actually go and live in the leprosy villages, and this has a major impact on neighbouring villages where people are now less superstitious and afraid of visiting them. Efforts have been made to educate surrounding villages to encourage them to visit and accept leprosy-affected people as part of their wider community.

31.01.07

Novartis Threatens Worldwide Access to Cheap Drugs

The Leprosy Mission International has joined forces with Médecins Sans Frontières (MSF) in urging Novartis to drop its law suit against the Indian Government, which is seeking to make changes to India’s patent law. Millions of people worldwide could face significant price hikes on Indian-made pharmaceuticals if this case proves successful.

“Novartis supplies the drugs used for leprosy free through the World Health Organisation to India and other countries,” says David Hall, Director of The Leprosy Mission NZ. “Leprosy is a disease of poverty, and without the drugs some 800,000 poor people each year could end up being deformed from leprosy. As one of the organisations in the forefront of the fight against leprosy, we have very much appreciated the support of Novartis in supplying the basic leprosy drugs free for the last 5 years. However, it does seem quite hypocritical for Novartis to provide leprosy drugs for poor and marginalised leprosy-affected people in India, yet take action against the Indian Government to prevent a whole range of affordable medicines being made available to millions of poor people, including drugs for HIV/AIDS, TB, and malaria.”

Five years ago Novartis and 38 other companies took the South African government to court in an effort to overturn the country’s medicines act, which was formed to decrease drug prices. Now India is the target.

According to a statement issued by MSF, “India produces affordable medicines that are vital to many people living in developing countries.  Over half the medicines currently used for AIDS treatment in developing countries come from India and such medicines are used to treat over 80% of the 80,000 AIDS patients in Médecins Sans Frontières projects.”

If Novartis succeeds in this case, it opens the door for patents to be granted in a much more liberal way, making it difficult or even impossible for Indian manufacturers to produce generic versions of new drugs. In the case of HIV/AIDS medication, this could negatively impact the growing number of AIDS patients who have become resistant to existing drug combinations and need newer combinations to protect them. Newer drug combinations are even now more expensive than older treatments, as Indian manufacturers are reluctant to start production of drugs that may receive a patent in the near future.

Please write to Novartis in New Zealand to request a halt to the case:

Pharmaceuticals

Novartis New Zealand Ltd.

Private Bag 47909

Ponsonby, Auckland 1034

To sign the petition from Médecins Sans Frontières and find out more about the case, go to: www.msf.org/

28.01.07

Leprosy Strikes Disturbing Parallels with Yaws

20 February 2007, Auckland – As The World Health Organization announces it is again targeting the disease Yaws for elimination after it’s recent reappearance, Leprosy Mission leaders express concern that efforts to eradicate leprosy, like Yaws, will be abandoned before eradication is reached, leading to a resurgence in a few years time.

In the 1950’s and 60’s, WHO and UNICEF treated 300 million people and virtually eradicated Yaws, which is passed on by a bacteria through cuts in the skin. However, because of the absence of sustained monitoring of the disease, today some 50 million people are affected by it, and unless it is again targeted for elimination, that number will keep growing.

“It certainly supports the argument to continue to work towards eradication of a disease, even when it has become low endemic. For The Leprosy Mission it poses the challenge of maintaining leprosy control services in countries that have "eliminated" leprosy,” says The Leprosy Mission International’s Janet Walmsley, Director for Support and Development.

In 2005, India announced that it had eliminated leprosy, though it has the highest number of new cases per year, around 100,000. Concerns have also been raised regarding the number of actual new cases versus the number of cases being reported. After elimination is declared, efforts to diagnose and treat people with leprosy naturally decline.

Technically, elimination is considered to be less than 1 case per 10,000 persons. Although this is extremely low, it is not eradication, as in the case of Smallpox for example. It gives the opportunity for the disease to spread again, and the sad plight of people with undiagnosed and untreated leprosy, namely disability, could once more emerge, reigniting the stigma and rejection that go along with it.

07.09.06

Kiwi Turning Heads as New General Director of International Development Organisation

Aucklander Geoff Warne has been appointed General Director of The Leprosy Mission International (TLMI), a Christian development organisation based in London and active in 51 countries, employing more than 2,000 staff worldwide.

With 25 years experience in the not-for-profit sector, Geoff has gained a thorough understanding of the complex and challenging issues facing values-based organisations. For the last 16 years he has worked for The Royal New Zealand Foundation of the Blind, one of New Zealand’s largest not-for-profit organisations, most recently as Chief Financial Officer and Deputy CEO.  In addition Geoff has been Chair of the Board of Trustees of The Leprosy Mission New Zealand (TLMNZ) for the last 14 years and has served on the International Board of TLMI for the last 6 years.

Geoff’s involvement with TLMI started in 1981 when he was appointed as Finance Officer for TLM South Asia. Three years later he was appointed International Finance Director, based in London, until returning to New Zealand in 1990.

“My commitment to TLMI is life-long: its mission, its  values, its outstanding people, the needs of those in whose communities where it works – all these have gripped me from the beginning of my close involvement with this organisation, and continue to do so,” said Geoff. “TLMI is blessed with fine people internationally; both staff and volunteers, and I believe that with dependence on God I can lead them and the organisation through the changes and challenges ahead.”

David Hall, Director of TLMNZ, is pleased to see a New Zealander at the helm of such a longstanding and well respected international development organisation. “Geoff is ideal for this role – he not only has a Masters of Business Administration (MBA) from Auckland University, he is also a qualified accountant. But most importantly he has an excellent understanding of both the social and medical challenges faced today by people with leprosy. During Geoff’s time as Chair of TLMNZ, many significant changes occurred organisationally as we responded to the ongoing dilemma of social exclusion and stigma, loss of dignity and abuse of human rights. The financial support raised in New Zealand for TLMI’s work worldwide has nearly tripled during Geoff’s time as Chair. I am looking forward to continuing to work closely with Geoff in his new role.”

Geoff and his wife, Karen, relocate to London in early September. Their 3 adult children will remain in New Zealand.