In honor of International Women’s Day, I’m sharing the stories of a group of women living in Orissa State, India. Last month, I had the opportunity to travel to a community center in Banamalipur run by the Church’s Auxiliary for Social Action (CASA), an NGO that works on a range of development and health issues, including morbidity management and disability prevention from lymphatic filariasis (LF). LF is a painful and disfiguring neglected tropical disease (NTD) that impacts more than 20 million people across India.
At the community center, I was introduced to a group of women suffering from the impacts of long-term LF infection. Many of them were grandmothers and mothers, and while we needed a translator to speak to each other, we were full of smiles and eager to learn about one another.
The women I met spoke openly and honestly with me about the challenges they face as women living with LF. Some of the women described how their disease impacted not only themselves, but their daughters as well.
Sulochana Behara, 43, from Dhalapathar village, for example, has five healthy daughters for whom she’s having trouble finding grooms; many people incorrectly believe that the swelling of her leg caused by LF is hereditary and that her daughters will also develop this same disability.
The visible signs of LF, which include swelling and inflammation of the extremities, often do not present themselves until adult age. In fact, the average age of the individuals with LF that CASA works with is about 57. Yet one woman I met explained she began noticing symptoms when she was only 12 years old. Now 40, she explained with tears in her eyes that she never married because of the stigma she faced.
In addition to the social stigma, LF also makes it hard for women to work and live comfortably. Many women explained that even working at home was difficult and that they couldn’t sit in certain positions for long periods of time because of the pain they suffered.
For these women, CASA is a welcomed respite from the stigma and challenges they often face as women living with LF. Staff and volunteers who work at CASA help the women wash and care for their swollen legs. The health workers carefully cleanse the women’s skin to remove bacteria. This process can reduce or reverse skin or tissue damage. This type of care does not cure, but can manage, the symptoms and progression of LF.
Unfortunately, the experiences of the women I met are not unique. Millions of women in India are living with or are at risk of contracting LF. As a whole, India bears 45 percent of the world’s population living at risk for LF.
I am hopeful that with the support of our celebrity Ambassador, Abhishek Bachchan who accompanied me on the trip, we can help give voice to the stories and experiences of these women and end the stigma that they face. I am also hopeful that India’s efforts to eliminate LF will help protect millions of women from having to deal with the pain, disability and stigma of LF.
This International Women’s day, let’s share these women’s stories and raise the awareness needed to ensure that no woman lives a life of pain and stigmatization due to this preventable disease.
photos by Vivek Singh
Tomorrow is the second anniversary of the tipping point for the world’s poor.”
The London Declaration has served as a roadmap to improve the lives of the 1.4 billion people worldwide affected by NTDs, most of whom are among the world’s poorest. Since then, regional committees, endemic and donor countries, NGO and pharmaceutical partners throughout the world committed to and prioritized controlling and eliminating NTDs. Eliminating NTDs is understood to be one of the most cost-effective and comprehensive ways to achieve development goals and eliminate poverty. While we still have a long way to go, measured progress has been made and we’re feeling optimistic about the route to 2020, and we know that with increased funds and political commitment, the number of people needlessly suffering from NTDs will decrease.
In Asia this past year:
- 6 countries started the process to verify elimination of lymphatic filariasis (LF) – an extremely painful and debilitating NTD
- 6 countries reached the global target of deworming at least 75% of school-aged children
- India’s Joint Secretary in the Ministry on Health, Dr. Anshu Prakash, stated the country’s commitment to the controlling and eliminating of NTDs – an important announcement considering India bears 35% of the world’s burden for NTDs
- Following the launch of the Regional Strategic Plans for WPRO and SEARO, more than 10 countries across Asia and the Pacific updated their national plans and renewed their commitment to end NTDs, and East Timor is preparing to launch its national program this year.
- The called for increased domestic investment in NTD control and elimination
- The World Health Organization’s (WHO) 63rd
passed a regional strategic plan to accelerate achievements
- Three African countries launched national integrated master NTD plans – Uganda in September – totaling more than 30 African countries with such plans.
- This spring, we learned that Togo is soon to become the first sub-Saharan African country to eliminate LF
And in Latin America and the Caribbean:
- The Organization of American States (OAS) passed a resolution in June 2013 endorsing the Pan American Health Organization’s (PAHO) goal of control and elimination of NTDs by 2015
- In July 2013, Colombia became the first country in the Americas to receive certification of onchocerciasis elimination – and as of the end of 2013, 25 million children at risk for intestinal worms received treatment and 10 out of the 12 million people requiring treatment for LF are receiving it
- Central American forums and committees highlighted the importance of NTD treatment – including the Council of Ministers of Health of Central America and the Dominican Republic (COMISCA) who recognized the importance of NTDs in regards to the 2020 sustainable development goals.
- 17 of 20 priority countries in the region have either launched comprehensive NTD plans or have drafts
While the progress in these regions is promising, more needs to be done by both endemic countries and partners. If we are to truly eliminate poverty and the diseases that perpetuate it, we need sustained support from all stakeholders: endemic countries, donors, regional and global committees, NGOs and more. As managing director of the Global Network, Dr. Neeraj Mistry, recently stated in an op-ed, NTD control and elimination efforts must also integrated into broader efforts to eliminate poverty and achieve global development goals:
“By including NTDs and specific targets in the post-2015 development agenda, we will support country-led efforts to reach control and elimination goals, improve the health and well-being of hundreds of millions of people, and accelerate progress in global poverty reduction.”
Ending the 10 most common NTDs by 2020 was an ambitious goal but the progress of the last two years proves the global community is up for the challenge, and will continue to fight until NTDs no longer exist.
By Dr. Mirta Roses Periago, NTD Special Envoy
Monday marked the three-year anniversary of the last reported polio case in India a landmark achievement for a country that reported the highest number of polio cases in the world in 2009. A formal declaration of India as polio-free is expected later this year by the World Health Organization (WHO).
According to the Global Polio Eradication Initiative, India was as reported by Time magazine.
India’s successful polio eradication program illustrates the leadership role that India can take in the global effort to control and eliminate neglected tropical diseases (NTDs). Similar to polio eradication programs, successful NTD control and elimination programs rely on well-organized and large-scale mass drug administration and surveillance activities. India’s national lymphatic filariasis elimination program reaches more than 300 million people each year, making it the world’s largest NTD program. India has a long history of ending the suffering caused by many communicable diseases, including smallpox, guinea worm and yaws. These remarkable achievements have been possible because of the concerted efforts and commitment of leaders in the Indian government and across civil society.
Despite these successes, India needs to do much more to achieve national and global NTD control and elimination goals. India accounts for 35 percent of the global burden of all NTDs, and currently less than half of the population living at risk for these diseases is being reached by mass drug administration programs. India must reinforce its commitment to eliminate NTDs like lymphatic filariasis, trachoma, kala azar and leprosy, and ensure that the necessary resources and capacity exist to scale-up and sustain operations until control and elimination goals are met.
Three years polio-free demonstrates that India has the expertise, capacity and resources to be a world leader in ending the burden of NTDs. There will be human and financial resources freed up from this victory ready to be channeled with renewed enthusiasm and determination to the fight against NTDs. India is a striking demonstration that elimination is possible. By reducing the NTD burden within its borders, India can contribute to a big reduction in the global NTD burden and its example will be an extraordinary push for all the countries still affected. As we celebrate India’s contribution to the global fight against polio, let’s also encourage continued leadership and success on NTDs to reach the World Health Organization 2020 goals.
This blog post by Ann Varghese, M.Sc., Senior Program Officer at American Indian Foundation blog and was reposted with their permission. Visit End the Neglect later this week to see case studies on lymphatic filariasis morbidity management, also from IMA World Health.
An estimated one billion people worldwide are affected by one or more neglected tropical diseases (NTDs). These diseases disproportionally affect poor and rural populations who lack access to clean water, sanitation, and essential medicines. They can cause chronic suffering, disability, compromised mental and physical development, and social stigma.
Lymphatic Filariasis (LF) is a highly disabling disease that is endemic in 83 countries with over 1 billion people at risk. It poses a major health issue in India; almost 45% of people at risk for LF globally live in India . The disease is a parasitic infection spread by mosquitoes. It is caused by thread-like parasitic worms that damage the human lymphatic system. The disease can cause severe disfigurement with swelling of the limbs and breasts (lymphoedema) and genitals (hydrocele). LF prevents individuals from experiencing a normal working and social life, furthering the cycle of poverty. The WHO global strategy for elimination of LF as a public health problem is based on two key components:
- interrupting transmission through annual large-scale treatment programmes, known as mass drug administration (MDA), implemented to cover the entire at-risk population;
- alleviating the suffering caused by lymphatic filariasis through morbidity management and disability prevention. Continue reading