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Row Puts WHO Leprosy Target in Doubt - NGOs - Global policy Forum Row Puts WHO Leprosy Target in Doubt
By Katherine Arie
AlertNet
November 21, 2002
A row over the elimination of leprosy, one of the oldest and most dreadful diseases known to man, has erupted between the World Health Organisation and an army of NGOs, and could jeopardise the multi-sectoral cooperation some experts believe is essential to combat the disease.
A statement made at the annual congress of the International Leprosy Association (ILA) in August challenged the main assumptions on which the WHO has based its decade-long elimination strategy, widening the gap between NGOs and the public bureaucracy spearheading the effort.
In 1991, the WHO publicly announced it would eliminate leprosy as a public health problem by 2000. It has since moved the target date to 2005, and NGOs doubt that it will meet the new deadline. "The declaration is a warning to everyone, to governments and agencies, to say leprosy elimination is not as far along the road as we thought," said Terry Vasey, chief executive of the U.K.-based Leprosy Relief Association (LEPRA) and president of the International Federation of Anti-Leprosy Associations (ILEP).
Vasey told AlertNet: "The bulk of leprosy cases have been found and cured, but the number of new cases is not dropping, and the question is whether the current methods are having the impact we hoped they would. The WHO thinks we’re at a mopping up stage, but scientists do not."
The WHO’s strategy is to reduce the prevalence of the disease to just one in 10,000 by providing multi-drug therapy, a combination of antibiotics, free of charge to leprosy patients worldwide.
The WHO wagered that the transmission rate of the disease would automatically decrease – and would continue to decrease – without the need for further intervention.
Not so fast, NGOs now say. According to research conducted by 16 experts from 11 countries presented at the ILA’s meeting, there is no evidence that leprosy will die out once the one-in-10,000 target is reached, meaning the disease will continue to be a problem for years to come.
"The one-in-10,000 prevalence was chosen arbitrarily," said Dr. Diana N.J. Lockwood, a consultant physician at the Hospital for Tropical Diseases and senior lecturer at the London School of Hygiene and Tropical Medicine."Senior epidemiologists agree that there is no data to support it, but the WHO has stuck by it and refuses to engage in discussion on the elimination target, which I think is a great shame."
ELIMINATION OR ERADICATION?
In September, LEPRA publicized the ILA’s findings in a statement called: "The Leprosy Elimination Myth – Leprosy Experts Challenge WHO". The charity questioned the wisdom of relying on the "false" assumption that leprosy would die out, an assumption which could, it believed, lead governments to cut funding of leprosy services for patients.
"We think the WHO’s pronouncements about elimination are confusing," said Vasey.
The WHO, which believes its credibility and professionalism have come under fire, admits that the one-in-10,000 target was chosen arbitrarily and says it never said leprosy would die out.
In an official response to LEPRA, the WHO said that though there was evidence from rich countries that the disease tended to die out when leprosy cases fell below the target level, this had not been proved and was not part of the organisation’s policy. "What we are trying to do is reduce the burden of leprosy to the maximum extent possible," Dr. Denis Daumerie, group leader of leprosy elimination program at the WHO, told AlertNet. "We know that we cannot eradicate the disease. No one has the tools to eradicate the disease."
Although the WHO failed to eliminate leprosy by 2000 as planned, and although the disease remains endemic in six countries -- Brazil, India, Madagascar, Mozambique, Myanmar and Nepal -- the organisation has chalked up a list of successes.
It has eliminated leprosy at a global level (fewer than one person in 10,000 worldwide is infected with leprosy) and drastically reduced the disease in 89 countries. In the past 10 years, nearly 12 million people have been cured.
On the other hand, as the WHO moves into what it now calls the final push to eliminate leprosy by 2005, detractors say some of its figures look rosy compared to reality.
"Eliminating leprosy at a global level is meaningless for people who live in countries where the disease is still endemic," said Vasey. "The global level includes everyone, including people from the U.S., Russia and Canada, where leprosy did not pose a public health threat to begin with."
As for the fall in the number of leprosy patients worldwide, from five million in 1985 to 0.7 million in 2001, that, too, can be viewed in a different way. "The WHO changed its definition of patient," Vasey said. "In 1991, the definition included patients under surveillance, which could last up to five years. Now it applies only to people on the multi-drug therapy."
DISABLING EFFECTS CONTINUE
Furthermore, people who have finished the multi-drug treatment continue to suffer from nerve damage or the disabling effects of leprosy and often still need care. "A patient with foot ulcers still considers himself a patient, and he’s still a burden on the health system," Lockwood said.
The WHO says it has not changed the definition of patient but shortened the duration of leprosy treatment, allowing it to move patients off the books in just a year.
"We don’t make or change definitions," said Daumerie. "A patient is someone who needs treatment and we have recommended a shorter treatment."
Nevertheless, other figures expose the bleakness of the situation in many of the world’s poorest countries. According to the WHO’s own Weekly Epidemiological Record, the prevalence in 15 countries -- mostly in Africa and Asia -- remains far higher than the WHO’s one-in-10,000 target. In addition, more than 700,000 new cases of leprosy are found each year, and, according to Lockwood, in the six countries where the disease is endemic, the incidence of new cases is rising.
The WHO agrees that its toughest battles are yet to come. "The six remaining endemic countries are the most difficult ones," Daumerie said.
"Again, we’re aiming at 2005 and it’s too early to say now whether we’ll succeed or not. In some countries we might fail, mostly because of political situations, sometimes because of war, and so we cannot guarantee that we will succeed, but we will continue to do everything we can."
The current dispute has its roots in differences of opinion regarding the best way to handle leprosy and leprosy patients.
The WHO believes leprosy should be treated the same as any infectious disease, and that it can and should be managed by primary health care workers, which it believes will help reduce the stigma still associated with the disease.
"In the past, leprosy was almost always treated by special groups of people, in special institutions," said Daumerie.
"What we’re trying to do is simplify the diagnosis and the treatment of the disease so that it can be taken care of by any general health worker."
NGOs WERE MISSIONARIES
"Most NGOs were missionaries, and kept leprosy patients in leprosaria and leprosy hospitals. In some countries, there were the only ones dealing with leprosy. There were many advantages and some disadvantages to this approach. "Today, the main disadvantage is that their coverage is very limited – they treat a small number of patients for a very long time -- and their tendency is to keep leprosy in hospitals and make it more complicated than necessary.
"Leprosy patients should not be stigmatized and isolated; they should be treated in their families not in hospitals. We are trying to convince NGOs to expand their coverage, to all the districts and general health services. It’s not always easy."
Most experts believe that integration of leprosy patients at some level is important and NGOs agree, but they worry about the dispersal of skilled staff and say leprosy is not always easy to diagnose. "Leprosy is a complex disease, more complex than tuberculosis, for example," Lockwood said. "In integrated settings, leprosy is difficult to diagnose and it will be a burden on primary care givers."
Lockwood believes new cases will go undetected, more people will fall through the cracks, patients will be diagnosed later and nerve damage will be greater. "I view the future with apprehension," she said.
From the NGOs’ point of view, the public health control of leprosy has taken precedence over the rehabilitation of people with complications and disabilities, or people who are unemployed, unable to work and stigmatized.
Between one and two million people are permanently disabled as a result of leprosy, according to the U.S.-based Centers for Disease Control. "We were always taught that a good control policy included caring for disabilities and deformities," said Vasey.
Perhaps not surprisingly, the two camps have had trouble finding common ground, so they have continued to work, often side by side, sometimes together, mostly apart.
GRAPHIC PICTURES
One sticking point, according to Daumerie, is the use of graphic pictures of leprosy patients in NGO fundraising efforts.
The WHO believes that its approach -- treating leprosy like any other infectious disease, and thereby reducing the stigma -- threatens the NGOs that rely on such fundraising to survive. "They say that in order to continue their fundraising, they need to display negative images of the disease," Daumerie said. "My interpretation is that this makes things complicated. We are trying to say it’s not needed and just contributes to the stigma."
NGOs do raise large amounts of money from the public -- about $70 million last year alone -- which irks the WHO. "Since 1995, the treatment has been given free of charge by the WHO to all patients in every country, and this is not even mentioned in NGO marketing materials, which is a bit irritating," Daumerie continued.
As for concern that the current rift between the WHO and NGOs could damage future relations, Daumerie is philosophical. "My personal opinion is that controversy is always good, and I’m not convinced that collaboration is always necessary. "We could be more effective by conflicting rather than collaborating."
Vasey, who believes collaboration is useful, demurs respectfully, pointing out that the International Federation of Anti-Leprosy Association still has official relations with GAEL. "We’re trying to divorce what’s going on politically with what’s going on in the field," he said.
Whether the WHO is feeling political pressure to speed things up to meet the new deadline is anyone’s guess. "I honestly don’t know what’s going on," Vasey said. "There are a lot of rumors, and we could guess until the cows come home. We even heard that the WHO -- which was hammered every which way -- felt pressure to come up with a success story."
"The fear is that politics is driving it. That doesn’t mean the strategy wasn’t a good one -- 12 million patients have been cured, but what happens to people after 2005?"
Daumerie, however, is undeterred. "We are not under political pressure. If we don’t meet our target, we’ll continue. And I’m convinced that the drugs will continue to be provided, for free."
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