by Navneet Anand and Anuradha Singh, GreyMatters Communications
GreyMatters Communications to run a media awareness program on Lymphatic Filariasis (LF) in India. We took a group of journalists to two affected villages in Odisha to provide them exposure about the problem as well as help them evaluate challenges towards its complete elimination.
The Global Network for Neglected Tropical Diseases, an initiative of the neglected tropical diseases (NTDs).
Often falling beyond the purview of mainstream media, like many other compelling problems in the country, LF has severe enormity and has persisted in India as well as other countries of the world for many years.
Not many would be aware that LF is the world’s second leading cause of long-term disability. Although filariasis does not kill, it causes debility and imposes severe social and economic burden to the affected individuals, their families and the endemic communities. According to one estimate at one point in time 120 million people in 83 countries of the world were infected with lymphatic filarial parasites, and it was estimated that more than 1.1 billion (20% of the world’s population) are at risk of acquiring infection. Over 40 million people are severely disfigured and disabled by filariasis and 76 million are apparently normal but have hidden internal damage to lymphatic and renal systems. According to the World Health Organization, India, Indonesia, Nigeria and Bangladesh alone contribute about 70% of the infection worldwide.
Indigenous lymphatic filariasis cases have been reported from 20 Stateshttp//www.mohfw.nic.in/', 'Ministry of Health');" target="_blank">Ministry of Health.
It is rather heartening to note that the overall microfilaria rate has reduced from 1.24% in 2004 to 0.29% in 2013 (Prov.) at national level. Out of 250 districts 203 districts have reported overall microfilaria rate to less than 1%. Out of remaining 52 districts, 31 need high priority for focussed intervention as these districts have been persistently reporting microfilaria rate above 1%. Ganjam and Puri in Odisha, where we travelled, are also among the high-incidence districts in the country.
It was rather painful to come across two cases of Lakhender Swain and Kointa Swain in Kapileshwarpur village in Puri. Afflicted with this distressing disease, the two have wasted their most productive years attending to deal with this disabling disease. “I had a dream for my life but the tyranny of this disease was such that I was rendered helpless. For over 20 years now, I have lived with this heaviness in the leg and associated problems including social taboos and boycotts,” rued Lakhender, who is 45 only. Kointa, in her 60s, recalls how at one point she was extremely active and used to work “effectively” till destiny willed otherwise.
“NTDs like lymphatic filariasis hold people back not just physically, but also socially. Misunderstandings about what causes the disease, how it is transmitted and what its effects are can lead to stigma and social exclusion. This lack of understanding can cause communities to push LF patients to the margins, excluding them from employment or educational opportunities, from community festivals or celebrations and making it difficult to marry. The impact can go beyond the LF patient to also affect family members of LF patients. Self-stigma is also a problem and can impact a patient’s mental health. Social isolation compounds the impact of the infection, keeping people from trying to achieve their aspirations or have hope for the future. Although LF tends to be visible in rural and poor communities, LF is spread through mosquitos, like dengue and malaria, so anyone can be infected,” said Nandini Pillai, Programs and Operations Officer, GNNTD.
However, thanks to some serious and sustained intervention by the government as well as work by agencies like GNNTD as well as NGOs like CASA (Churchs Auxiliary for Social Action), the problem is well contained and India may well be on the verge of soon eliminating the disease altogether.
One of the key programs of the Government is Mass Drug Administration where all those at risk are administered medicine free of cost.
“The treatment is a weight-based dose of diethylcarbamizne (DEC), and a single pill of albendazole, to everyone over the age of 2 years and not ill or pregnant. Both drugs are anti-parasitic medications which prevent and expel parasites. These medicines also protect from intestinal worm infections. The treatment is safe and free and delivered to communities through ASHA workers and other community-based drug distributors. The drugs are donations from major pharmaceutical companies, like GlaxoSmithKline (GSK), or procured in India from WHO approved companies. They are completely safe,” informed Shaliesh Vaite, National NTD Advisor, GNNTD.
The 2015 MDA is underway nationwide from December 14-20.
The medical approach to defeating NTDs is through a set of medications donated by major pharmaceutical companies for free distribution to communities in need. “In India, state governments locally procure some medications and submit their requests for donated drugs to the central government, which then works with WHO to order and deliver the drugs. Community drug distributers are responsible for going door to door to hand out the drugs and ensure that people take them properly. This grassroots method for treating and protecting against NTDs takes the partnership of the whole community working in tandem, and ensures that nobody is left behind,” added Kelly Toves, Communications Officer, GNNTD.
Along with this, if media also undertakes to write more often and inform people about the ways to deal with this scourge, the process of elimination will be faster.
This post was originally published on Communicate, Connect.
by Dr. Madan Mohan Pradhan
During the late 1990s, I was infected with lymphatic filariasis (LF), or elephantiasis, a neglected tropical disease (NTD) that can cause extreme pain, crippling disability and disfigurement. LF is one of 17 NTDs recognized by the World Health Organization (WHO) as a group of parasitic and bacterial infections, which primarily affect people living in extreme poverty.
The incident occurred after I completed my medical degree. I was eager to work in Odisha and help some of its most vulnerable and under-served communities. It was during this time that I began working on an LF project, making nightly visits to endemic villages to collect blood samples from fevered patients. I knew how LF was transmitted, but had limited knowledge on the preventive aspect. As is typical in most cases, I didn’t present symptoms until years later. When I saw my right foot swelling with redness and pain four years later, I immediately diagnosed the disease and took the full course of diethylcarbamazine (DEC) tablets. I was cured and never had a recurrence again. Though I was fortunate enough to stop the disease at an early stage, many are not as lucky.
During my tenure as a medical officer in rural Odisha, I saw a number of patients with LF. Many of them lived in the poorest communities, with limited resources and support from their families. Social stigma and discrimination, along with misconceptions about transmission of the disease, often made matters worse.
As we observe National Filaria Week from December 14 to 20, it is important to raise greater awareness about this disease, which threatens nearly 352 million people in India. It is particularly important to know the source of transmission of LF. It is not caused by a curse or deeds from a past life. And it is not hereditary.
Lymphatic filariasis is caused by a tiny parasite, which is transmitted by Culex mosquitoes. Globally, more than 120 million people are affected by this disease. People living in poor environmental and unhygienic conditions are vulnerable to the infection as the Culex mosquito breeds in these places. Most LF infected people may not have any symptoms and are found apparently healthy. But the LF parasite can be transmitted from these asymptomatic people to healthy people through mosquitoes. LF affects the lymphatic channels of the body due to which there occurs swelling of breast, lymph nodes, genital organs, and at later stage these swellings can result in disfiguration.
Although LF isn’t fatal, it can lead to disfigurement, disability and chronic pain. As a result, many people with LF are unable to make a living for themselves and their families. Social stigma and discrimination also limit the quality of life for those affected by LF. It is not uncommon for parents to be unable to marry off children with LF.
To facilitate greater progress in combating the disease, the WHO launched a global program to eliminate LF by 2020. They adopted the intervention known as mass drug administrations (MDA), in which two drugs — DEC and albendazole tablets — are co-administered in a single dose. These drugs are cost-effective and safe, and can be administered by trained community volunteers.
If more than 85 percent of the eligible population of at-risk communities consume the drugs once annually for five to seven years, the risk of LF infection will be minimal to zero. That is why the Indian government has prioritized efforts to eliminate LF through the National Vector Borne Disease Control Programme.
Besides the MDA, there are other components for LF elimination and morbidity management, including hydrocele operations. Government and non-profits are working to increase the knowledge and skill of LF-affected persons and family members on home care. For the success of both MDA and morbidity management, community involvement, participation from other government departments and active involvement of civil society organisations is essential. This requires high level political and administrative commitment and raising awareness through community participation
In Odisha, the MDA will be conducted on December 19, followed by two days of mop up rounds. Following 10 districts: Deogada, Boudh, Angul, Dhenkanal, Bhadrak, Jajpur, Jagatsinghpur, Nayagarh, Ganjam and Jharsuguda will be covered under 2015 MDA. During this time, drug administrators such as ASHA workers and other community volunteers, will make door-to-door household visits to administer the two drugs used in MDA. They will explain the safety and importance of taking the drugs and ensure that people consume drugs after eating; and monitor any adverse effects. If we continue our momentum and efforts in Odisha, we can eliminate LF within the next few years. Together, we can help create a filaria-free reality in Odisha and India.
Dr. Madan Mohan Pradhan is the joint director of health services for the National Vector Borne Disease Control Programme in Odisha, India.
This story originally appeared in the Political and Business Daily.
When we talk about the effects of neglected tropical diseases (NTDs), we have a tendency to focus on the physical and economic impacts alone, ignoring a major side effect of these conditions. In recognition of World Mental Health Day on October 10, we are taking a look at the unseen consequences of one of the most devastating NTDs.
Lymphatic filariasis (LF) is a disease transmitted by mosquitoes that leads to painful, debilitating swelling of the limbs or genitalia, inspiring the disease’s other name, elephantiasis. Though LF is easily prevented with medication, if left untreated, the severe swelling is irreversible. Individuals suffering from advanced LF are often unable to work and can suffer social stigma as a result of the disfiguring disease. Many are ostracized or even shunned by their communities.
The connection between LF and mental health has not received much attention in the scientific literature. A new paper released this summer by David H. Molyneux, Charles Mackenzie and Thanh G.N. Ton is the first to estimate the global psychological burden caused by the disease. Based on the few studies that exist on the topic, they estimate that 50 percent of clinical LF patients suffer from depression – roughly 18.1 million people. This is a conservative estimate, given that a study in India, which bears the largest burden of LF in the world, found that 97 percent of LF patients suffer from depressive illness.
When calculating the true burden of LF, Molyneux and his colleagues argue that the psychological effects on caregivers, which have not previously been quantified, need to be factored in as well. Based on a study of caregivers of blind individuals, which found that 48 percent had depression, they estimate 25 percent of caregivers of individuals with severe LF to be depressed, for an estimated total of 1.25 million people. That brings the total number of individuals suffering from depression as a result of LF to 19.35 million.
In 2013, the Global Network’s Emily Conron traveled to Lèogâne, Haiti, to interview patients with advanced LF. “These individuals told me over and over again that the hardest part of their condition was their isolation from family and friends and the shame they felt when they went out in public, where strangers would stare at their affected limb and make cruel comments,” Emily writes. In a country with one psychiatrist for every 200,000 people, access to traditional mental health care in Haiti is a near impossibility.
The feelings of social isolation have medical implications as well as psychological. A 2007 study conducted in Sri Lanka found that those suffering with severe LF avoided clinical treatment due to the embarrassment of being seen in public with the condition.
When it comes to tackling NTDs, treatment must address psychological challenges as well as physical symptoms. Though the World Health Organization began testing support programs for LF patients in 1998, such programs are still not widespread. Morbidity management – a basic package of services aimed at preventing disability in individuals already infected with advanced LF, ideally including measures to prevent disability from the mental health implications of LF – has not been scaled up to meet the needs of patients. Despite the fact that WHO’s Global Programme to Eliminate Lymphatic Filariasis, launched in 2000, includes LF morbidity management as a twin strategic goal of preventive chemotherapy to prevent new LF cases, only about one-third of national LF programs have established morbidity management measures.
Patients with advanced LF are, sadly, some of the most neglected patients of all those affected by neglected tropical diseases. Much more should be done to ensure that patients for whom the goal of eliminating LF transmission will be realized too late receive the healthcare they need for the physical and psychosocial effects of LF.
During the month of October, END7 student supporters are celebrating NTD Success Stories — spreading the exciting news that many countries around the world have already made incredible progress towards the control and elimination of some NTDs. In recent weeks, there have been many new successes to celebrate, like the announcement two weeks ago that Mexico has become the third country to officially eliminate river blindness, and the exciting news Monday that William Campbell and Satoshi Omura were awarded the Nobel Prize in medicine for their discovery of ivermectin, a drug used to treat and prevent onchocerciasis and lymphatic filariasis. This month, in addition to these exciting announcements, we want to highlight four countries — Haiti, India, Sierra Leone and the Philippines — that have achieved success fighting NTDs. Each country has overcome their own challenges, ranging from earthquakes to the Ebola epidemic, to make sure communities receive the medicine they need. We think these stories help communicate not just the scope of the suffering caused by NTDs, but the hope we have of ending these diseases for good.
The poorest country in the Western hemisphere, with the highest infant mortality and lowest life expectancy, Haiti is a country with many challenges. But the story of Haiti’s success against NTDs is a powerful reason for hope. Nearly the entire population is at risk of contracting lymphatic filariasis (LF), a mosquito-borne NTD. Caused by thread-like filarial worms that live in the lymphatic system, LF causes painful swelling of the extremities (a condition known as elephantiasis) and genitals (a condition known as hydrocele). The high prevalence of NTDs like LF persists, in large part, because of poor access to water and sanitation. About nine out of ten Haitians in rural areas do not have access to clean, safe water, and almost half lack access to adequate sanitation facilities. These circumstances were compounded in the wake of the 2010 earthquake that killed at least 200,000 people and destroyed much of the nation’s infrastructure. Despite these challenges, Haiti is making incredible progress against NTDs and expanding its national NTD control program with the goal of eliminating LF for good.
Under the leadership of the Haitian government, a range of partners have assisted with the annual distribution of drugs to help prevent the spread of four NTDs: LF, whipworm, hookworm and roundworm. A critical aspect of the success of these efforts has been the training of more than 30,000 local community leaders to organize, promote and carry out mass drug administration (MDA), distributing medicine to everyone in at-risk communities.
Until the 2010 earthquake, Haiti’s Neglected Tropical Disease Control Program conducted MDAs only in the areas of the country where LF was most prevalent. The crowded capital city of Port-au-Prince, with relatively low levels of LF infection, was thought to be too difficult a setting to carry out MDA. But after two million people were left homeless following the earthquake, internal migration threatened to redistribute the disease. The Haitian government then decided to focus on national MDA coverage, with the aim of completely eliminating the disease and preventing redistribution.
By late 2011, at least one round of MDA had been conducted in all endemic areas of Haiti except the capital, Port-au-Prince. From November 2011 to February 2012, an MDA was conducted for the first time in the crowded metropolitan area. delivered its one billionth treatment worldwide at a ceremony in Saint-Louis-du-Sud, Haiti, a testament to the country’s commitment and progress in the fight against NTDs.
Haiti is also an example of an integrated approach to combating NTDs, having successfully integrated its LF and soil-transmitted helminth (STH) control programs, which previously operated in separate units at the Ministry of Health. To supplement expanded MDA efforts, the country is also scaling up efforts to address the needs of Haitians already incapacitated by LF and to fortify table salt with medicine to prevent LF, an approach that has helped countries like China eliminate the disease. These efforts are supported by dedicated partners including the Pan American Health Organization, the Inter-American Development Bank, the U.S. Centers for Disease Control (CDC), USAID, the University of Notre Dame Haiti Program, IMA World Health and CBM.
Haiti is one of just four countries in the Americas where LF remains endemic, accounting for 80% of people at risk of the disease in the region. If the country can succeed in their effort to eliminate LF by 2020, it would be a major milestone in global efforts to end the disease. As Dr. Patrick Lammie, an immunologist with the CDC, told NPR, “If a country like Haiti, with all of the challenges that theyve faced over the last few years, is able to achieve full national coverage, I think that is an important example for other countries, which are struggling to scale up their programs as well.”
Certainly, a country that has not just maintained, but expanded efforts against NTDs in the face of political instability and crippling natural disasters is a powerful example to the rest of the world. Haiti’s success demonstrates the power of country ownership, government leadership, partnerships and integrated and holistic public health programs in the fight against NTDs.
END7 supporters are excited to celebrate Haiti’s unfolding success story, a narrative of perseverance in the face of challenges — and the first of four inspiring NTD Success Stories in a month that’s already offered many reasons to celebrate!