In India, NGOs struggle to fight an 'eliminated' disease

In early April, the Law Commission of India submitted a draft law to stamp out discrimination against people afflicted with leprosy. Indeed, nearly a decade after leprosy was “eliminated” in the country, there remain some laws that allow being afflicted with the infectious disease as grounds for divorce, firing and even refusing someone a train seat. The World Health Organization defines elimination as having less than 1 new case per 10,000 people. In 2005, new cases in India plummeted from a high 57.6 in 1983 to just 0.95 in 2005. But this doesn’t mean the disease has been completely eradicated; more than 50 percent of the world’s new leprosy cases each year come from India. So while nongovernmental organizations in the country welcome the draft law, they remain concerned that last-mile efforts to tackle the disease are being derailed. Donor funds are sliding, government money is caught in red tape, and NGOs are being forced to scale down their programs, even as cases remain underreported, with many patients likely slipping through the cracks. It was in fact WHO’s declaration that leprosy has been eliminated as a public health problem in India that marked the beginning of funding problems, according to Sunil Anand, country director of the The Leprosy Mission Trust India. “Donors started pulling back their funds and putting it into other programs,” Anand told Devex. A local affiliate of The Leprosy Mission International, TLMT India has seen funding from its partners — which tap churches and donors such as the U.K. Department for International Development — slide 25 percent annually over five years. Leprosy has dropped down the list of donor priorities, while individual givers “think the disease does not exist anymore,” the country director explained. Poor health systems, ‘stagnation’ in case detection For the past six years, new leprosy cases in India hovered between 135,000 and 127,000, 10 percent of which are children. The government’s latest report for 2013-14 pegged the number to 127,000 new cases, of which 12,000 were children and 5,000 had permanent disabilities. But these statistics reveal just a fraction of the burden, according to Anand. They only count people treated by government health centers and NGOs, but many leprosy patients go to private practices or get drugs from pharmacies, while stigma stops some seeking any help, he said. WHO says 80 percent of new leprosy cases are found in nine of India’s 29 states and seven territories: Andhra Pradesh, Bihar, Chhattisgarh, Gujarat, Maharashtra, Madhya Pradesh, Odisha, West Bengal and Uttar Pradesh. In many, public health facilities lack staff and resources. The need to address these broader health system challenges is critical “for India to achieve elimination in those states and districts,” Nata Menabde, WHO representative to India, told Devex. Odisha, Chandigarh and Lakshadweep islands all recorded prevalence rates of more than 1 per 10,000 people in 2013-14, despite previously having achieved elimination. Children meanwhile accounted for more than 10 percent of cases in 13 states and territories; in Dadra and Nagar Haveli, children comprised 24 percent of new cases during the period, up from 15 percent in 2008-09. A WHO-supported review of the government’s National Leprosy Eradication Program looked at factors causing “stagnation” in case detection and an increase in visible deformities among new cases. Menabde said there “was no evidence indicating that the program is failing.” The major recommendation was detecting “all cases” early, which, as no vaccine is available, is seen as the only way to stop the disease from spreading and disabilities from occurring. The NLEP has prioritized early detection since 2012 under the government’s 12th five-year plan but it “doesn’t prescribe a model,” Anand said. He said cases are still not being diagnosed early in many areas, with people coming to clinics “already deformed.” “Obviously the infection is still around and actively being spread,” he said. Complicating matters, symptoms can take 40 years to appear, making it hard see the impact of program changes, said Mohammad Arif, country head of Netherlands Leprosy Relief’s local affiliate NLR India. Swiss Emmaus Leprosy Relief Work India CEO John George meanwhile believes widespread surveys are needed to find hidden infections. At the height of elimination, there were nationwide media campaigns and surveys. Now surveys are done as a “one-off” in endemic areas because they’re seen as “not cost effective,” George said. Underfunded, NGOs stretched to meet all needs Donor funding flowed into India at the height of elimination, with nearly 300 national and international NGOs pitching in. The U.S. Agency for International Development, Swedish International Development Agency, Norwegian Agency for Development and Danish International Development Agency supported the extension of multidrug therapy treatment — which cures leprosy and has been provided free worldwide since 1995 by the Nippon Foundation, and now by pharmaceutical company Novartis. WHO continues to extend MDTs in India today. The World Bank tipped in 4.6 billion rupees ($72 million) to support India’s leprosy program until 2005, after which the government funded it — doubling the budget in its 12th five-year plan from 2.5 billion to 5.7 billion rupees. But only about 50 percent of the money has been used each year — of 510 million rupees earmarked, just 260 million rupees were spent in 2013-14. This “impacts on the program,” as well as NGOs supporting it like TLMT India, Anand noted. He said money budgeted for NGOs working on leprosy has yet to materialize since the 2012 plan came in — blaming it on red tape and the disease no longer being a priority for states and districts. Swiss Emmaus India, NLR India and TLMT India are among nine international NGOs — all members of the International Federation of Anti-Leprosy Associations — partnering with the government to strengthen the NLEP. They run some of the 50 government-recognized NGO hospitals doing reconstructive surgeries, the rest belonging to national NGOs. They say they’re stretched trying to meet all the needs. On the ground it’s not uncommon to find leprosy posts vacant, no funds allocated for district programs, health workers not trained and MDTs unavailable, George said. Surveying 140 of India’s up to 800 remaining leprosy colonies, NLR India found 43,000 people needing help for disabilities — from wheelchairs to livelihood support. “They were resorting to begging,” Arif recounted. NLR India could only help 12 percent. Swiss Emmaus India, TLMT India and NLR India say falling international donor funding for leprosy is a widespread concern among NGOs tackling the disease in the country. They’re expanding fundraising departments to tap local donors, which comprise up to 30 percent of their funding mix. For TLMT India, it comes after reducing programs for the past five years, said Anand. “This year we will not downscale, we will try and see whether we can raise funds within the country,” he said. International donor funds for leprosy have not been wiped out entirely. The Nippon Foundation pledged $20 million from 2013 to 2018 for the Bangkok Declaration to free the world from leprosy. And one national Indian NGO, Hind Kusht Nivaran Sangh, secured first-round funding. Even if donors boost funding, however, without strong local health systems, India looks set to battle the disease for years to come. How can the global health community strengthen last-mile efforts to eradicate leprosy in India and elsewhere? Let us know by leaving a comment below. Check out more insights and analysis for global development leaders like you, and sign up as an Executive Member to receive the information you need for your organization to thrive.