Category Archives: India

Highlighting the Women of Orissa on International Women’s Day


Anupama standing with the women she met at the Church’s Auxiliary for Social Action (CASA)

Anupama standing with the women she met at the Church’s Auxiliary for Social Action (CASA)

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.

Women in Orissa State, India

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.

WOMENSDAY (1)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

How a Polio-Free India could Pave the way for an NTD-Free India


Photo by Esther Havens

Photo by Esther Havens

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 once thought to be the most difficult country in which to achieve polio eradication.  Today, 71 percent of children in India have received the polio vaccine, and India has become one of the world’s largest donors to global polio eradication 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.

New Policy Briefs Highlight Importance of NTDs for G20 and BRICS

In March 2013, heads of state and senior ministerial officials from Brazil, Russia, India, China and South Africa will gather in Durban, South Africa for the fifth annual BRICS Summit. Later in the year, in September, G20 leaders will meet in St. Petersburg, Russia for the G20 Summit.

These upcoming meetings represent a huge opportunity for the NTD community. By pooling resources, expertise and influence, these influential international bodies have an opportunity to raise the profile of the NTD problem and galvanize concerted action at the global level on behalf of hundreds of millions of marginalized people who do not have a voice.

Efforts by the BRICS and G20 countries to improve food security, education and economic growth are all issues undermined by NTDs. Recognizing this, two new policy papers prepared by the Global Network for Neglected Tropical Diseases ahead of the BRICS and G20 summits, a G20 call to action and a BRICS call to action, highlight the need to include NTDs in broader development and economic policies.

As a group, the BRICS countries have unique, fresh perspectives to share with NTD endemic countries and other development partners, drawing on the valuable technical expertise they have acquired while addressing their own public health challenges, including efforts to combat NTDs.

Similarly, while world leaders will focus on economic growth and job creation at the upcoming G20 Summit, this group has an opportunity to elevate issues like NTDs and malnutrition, which hinder economic growth in countries around the world.

International political advocacy is one way we can help promote change needed to end inequality and suffering caused by NTDs. Interested in the subject? End the Neglect readers are encouraged to read through and share these call to action papers.

Here they are again:

G20 call to action

BRICS call to action

To read more about the social and economic impact of NTDs, please click here:

The Hudson Report – November 2012

Lymphatic Filariasis: Taming the Attacks


This case study was compiled by IMA World Health as part of the lymphatic filariasis morbidity management programme. We’ve included an excerpt here, but you can can access the full case study at this link. See Monday’s blog post for more about the program.

Mahara Bawa showing us the ointment she uses for her leg

One of the biggest difficulties a Lymphatic Filariasis (LF) patient faces is the occasional acute attacks that can literally cripple the person for a few days. CASA staff visited patients to discuss these acute attacks and the impact on their lives living with LF.

‘Whenever I do laborious work, and exert myself I am likely to fall sick,’ said one patient.

‘When I do some work,’ said Mahara Bawa of Sarapari village under Sarapari panchcyat (Tangi Block) ‘I feel if I did not have this disease, I could give my 100 percent.’ Mahara Bawa a lady in her fifties regrets not being able to give her full energy. Some 10 years back Mahara suddenly had a fever; there was pain in her legs followed by swelling. The neighbours suspected it was Lymphatic Filariasis, the doctor confirmed it.

‘No, I didn’t feel bad,’ she replied when we asked what her initial reaction was, ‘but yes, I was a little down, after all this could happen to anyone.’ Mahara’s father too had Lymphatic Filariasis.

Mahara’s both legs are swollen due to the infection, she however can manage to live with it, but she dreads the acute attacks.

‘During the acute attacks, there is tremendous shivering and high fever,’ she literally demonstrated it as she spoke, ‘for 3-4 days I cannot do anything.’ But even after her fever subsides the following 2 weeks she finds it extremely difficult to walk around. ‘It’s very painful,’ she explained.

But after CASA initiated work in this area, things began to look better. ‘I didn’t know that we have to take special care of our legs.’

‘How did CASA’s health workers ask you to take care of your foot?’ we asked her.

‘They showed me how to wash the legs with soap in cold water and then carefully dry it,’ she replied adding that she does this regularly.

‘And what about ointment?’ we questioned back.

‘Oh yes!’ she nodded her head saying, ‘I apply that too.’

Mahara said she used to have frequent acute attacks but for the last year or so she didn’t have a single acute attack ‘Yes I still have some pain in my legs and back sometimes,’ she admitted, ‘but after 2-3 days it goes away.’

This patient story was particularly encouraging to CASA because few patients report such remarkable success after starting home based care.

Continue reading