Category Archives: NTDs

Lymphatic Filariasis: Why mainstream media must take note

by Navneet Anand and Anuradha Singh, GreyMatters Communications

_M6A7431Recently Global Network for Neglected Tropical Diseases (GNNTD) partnered with us at 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 Sabin Vaccine Institute, works to raise the awareness, political will and funds necessary to control and eliminate 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 States/UTs across 250 districts which were identified as endemic for filariasis with a population of about 600 million at risk. In India, a special program to eliminate lymphatic filariasis was launched in 2004 covering 202 endemic districts in 20 States/Union Territories and subsequently scaled up to cover all the 250 (now 255) endemic districts targeting a population of about 600 million.The population coverage during MDA has improved from 73% in 2004 to 83% in 2013, according to a document on National Roadmap for Elimination of LF by 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 (Church’s 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.

Eliminating Lymphatic Filariasis in Odisha

ASHAs in Ganjam District, Odisha, India

ASHAs in Ganjam District, Odisha, India. Photo: Naveen Pun / Sabin Vaccine Institute

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 Orissa POST and the Political and Business Daily.

Introducing Jessica Ellis, November’s END7 Student of the Month

jessicaellis

Each month, END7 honors one student who has made a significant contribution to our growing movement of student advocates dedicated to seeing the end of NTDs. We are very proud to introduce our November 2015 Student of the Month, Jessica Ellis, a sophomore biology major at the University of Texas at Austin. Jessica is the president of END7 at UT and a member of the END7 Student Advisory Board. She shares:

“I discovered END7 at UT during my freshman year, the day that I quit the track team and was frantically looking for new activities to get involved in at a campus organization fair. Right away, I was hooked by the idea of ending seven diseases, and was blown away by the statistics about NTDs and developments in the control and elimination effort that I learned about at END7 meetings. The scale of this effort and potential for transformation of entire communities through disease elimination fit with my view of – and hopes for – the world.

“By the end of my freshman year, I knew that my involvement in global health and NTDs couldn’t just be an extracurricular activity for me. I wanted to do as much as I could for this cause as a student, and hopefully someday make it my career. So, it’s been really exciting to serve as the president of END7 at UT and as an END7 Student Advisory Board representative this year.

“In October, I had was given the incredible opportunity to travel to Philadelphia to attend the American Society of Tropical Medicine and Hygiene (ASTMH) annual conference with the support of a scholarship from the END7 campaign. I got to hear presentations by NTD experts from all over the world at the event, and left the “NTD bubble” I had been immersed in for three days excited to communicate this information back on campus. I shared much of the new information I learned a talk I gave at an event hosted by UT student organization Advocates for Awareness, trying to instill the sense of urgency and excitement around this cause that I took away from my time with the powerful global health community that I met in Philadelphia.

“It was definitely a busy fall semester for END7 at UT. We hosted two new (and hopefully annual!) events on campus. We held an evening advocacy event – lit by candles, Christmas lights, and the iconic UT Tower – and collected more than 100 messages from students urging the UN to prioritize NTDs in the Sustainable Development Goals with a target and indicator. We also organized a variety of student organizations from across the UT campus to come together and fundraise for non-profits on Giving Tuesday. I can’t wait to see what these events turn into over the next few years. Next semester, we are looking forward to hosting our annual benefit concert – a must for any non-profit hoping to fundraise in music-loving Austin!”

We are so grateful for Jessica’s commitment to the fight against NTDs, and we are excited to see our community of student supporters like her grow. If you are ready to get your school involved in END7’s work, contact the END7’s student outreach coordinator at Emily.Conron@sabin.org to learn how you can get started!

National Filaria Week: Campaign to treat lymphatic filariasis may be one of India’s last

This week, the Indian government is leading one of the largest mass drug administrations (MDAs) to eliminate lymphatic filariasis (LF), a debilitating disease that threatens nearly 352 million people in India.

Also known as elephantiasis, or hathipaon in Hindi, LF causes swelling in the limbs and reproductive system. LF also causes acute pain, thickening of the skin in swollen areas and, left untreated, can lead to infection and disability. Symptoms are very slow to develop and may not appear until later in life, even if someone is infected as a child.

Though India alone accounts for more than 40 percent of the global burden of LF, the country has made remarkable strides since launching annual MDAs in 2004. Its annual LF MDA, led by the National Vector Borne Disease Control Programme (NVBDCP) , is considered one of the largest public health campaigns in the world.

This year, the MDA will take place nationwide from December 14-20. During this time, the government will distribute age- and weight-based doses of diethylcarbamazine (DEC) and albendazole — anti-parasitic medications that prevent and expel parasites. These medicines, which are given to everyone over age 2 and those whom are not ill or pregnant, also protect from intestinal worm infections. The treatment is safe and free and delivered to communities through accredited social health activists (ASHAs) and other community-based drug distributors.

Another Important aspect of prevention is knowing how LF is spread. In a recent op-ed, Dr. Madan Mohan Pradhan explained the misconceptions that lead to infection, social stigma and discrimination. He said, despite public awareness campaigns, he still encounters people who believe LF is caused by curses and genetics. As the joint director of health services for the NVBDCP in Odisha, an LF-endemic state, Dr. Pradhan has spent his career combating LF in India and knows from personal experience what it’s like to have the disease.

For its part, the Global Network is working to raise awareness of the disease and promote greater compliance among the public. This video PSA, created by the Global Network in partnership with the Ministry of Health & Family Welfare, Ogilvy & Mather Advertising and Little Lamb Films, highlights the importance and safety of taking the pills provided to treat and prevent LF.

These final few years of MDAs are critical to achieving success. Some states have already interrupted transmission of the disease and no longer need to provide medication to entire communities. Many districts in Odisha have also reached this goal.

To continue to make progress toward elimination, the remaining districts must have successful MDAs in 2015. The good news is India is on track. India will likely eliminate LF before the global target of 2020, due in large part to the government’s strong political commitment to combating this pernicious disease.