Women At The Heart Of Change In Fight Against Neglected Tropical Diseases

The onset of the catastrophic climate change, paired with the devastating challenges posed by Neglected Tropical Diseases (NTDs), detrimentally impacts not only the health but also the socio-economic situations of individuals – particularly the underserved, low-income sections of society. NTDs are a group of diverse health conditions caused by a variety of pathogens, most of which are vector-borne and often related to environmental conditions. According to the World Health Organization (WHO), over 1.6 billion people across the world are in dire need of treatment for at least one NTD each year.

How Women Are Taking Centrestge In Fight Aginst NTDs

In India, one of the most prevalent NTDs is Lymphatic Filariasis (also known as elephantiasis or Hathi Paon), caused by filarial parasites transmitted to humans through mosquitoes. Lymphatic Filariasis remains a persistent challenge for people residing in tropical or sub-tropical areas, especially in regions with poor sanitation and limited access to healthcare. Nearly 740 million Indians are at a heightened risk of contracting the disease, with significant incidence rates in Uttar Pradesh, Bihar, Jharkhand, West Bengal, and Odisha.

A particularly vulnerable sub-group among those at risk is women. Several studies highlight the inequitable impact of climate change, with women and children bearing a larger brunt of the challenges. It is imperative to note that while many women suffer from Lymphatic Filariasis, societal barriers, lack of awareness, and preconceived reservations about diseases and healthcare further aggravate the issue. These factors often prevent women from reporting the occurrence of symptoms and seeking help.

While the Ministry of Health & Family Welfare (MoHFW) is consistently implementing extensive measures to eliminate Lymphatic Filariasis by 2027, using the Mass Drug Administration as a key tool, there is a need for continuous social mobilization, collective action, and the promotion of health-seeking behaviour among communities, especially women, across LF-endemic districts.

How Collective Action Is Strengthening Community Mobilisation

The filarial parasite can severely damage the lymphatic system, leading to swollen limbs, pain, and severe disability. However, it is important to note that simply consuming the anti-filarial medicines—provided entirely free of cost during the mass drug administration rounds —can stop both the disease's transmission and progression. Patient networks, support groups, and self-help groups have become key catalysts in fostering an environment of support for those affected and at risk.

To facilitate the urgent attention, diagnosis, and treatment needed to combat Lymphatic Filariasis, a multifaceted approach has been implemented in Uttar Pradesh and Bihar, placing patients at the heart of these efforts. LF patients and survivors are encouraged to share their lived realities, thereby empowering others to seek support and assistance through mechanisms such as primary healthcare facilities, which enable quicker diagnosis, treatment, and relief.

In the first six months starting from July 2021, 26 Patient Support Groups (PSGs) were formed with 260 members, which has gradually grown in the last three years to 618 PSGs with 7,492 members across 57 blocks in 21 districts of Uttar Pradesh and Bihar. Women constitute 62% of PSG members. This has translated into impactful action with 938 women educators (61% of total educators) who not only manage their own health but are also actively educating the public about the risks of LF and available diagnostics.

Women living with filariasis have been seizing every opportunity to be seen, heard, and acknowledged. For many, the PSGs have provided a space where they can openly speak up and share their journey of pain and suffering without any fear of being mocked or ridiculed. This space of bonding and mutual respect fosters solutions not only for the individual but for the entire community striving to end filariasis and other vector-borne diseases. They are not only getting respite from their pain but also experiencing a sense of healing and greater self-efficacy. Ramawati from the Sankat Mochan PSG in Kanpur shares, “After washing my legs and doing exercise daily, the condition of one leg has greatly improved with the swelling reducing and the wound healing to an extent with the applying the cream, and I have had no acute attacks.”

Lesser-Known Consequences And Social Stigma Attached

Some of the early obstacles that women across endemic regions face, such as societal stigma, lack of resources, and initial resistance from their communities still lack complete acknowledgement. These women have been struggling with LF and community members have offered little to no empathy. The lack of social support has intensified as patients get older. Patients suffer because of the lag in gender-based sensitization for LF.

Krishna Devi, a survivor of Lymphatic Filariasis, said, “Living with Filariasis, I have faced a lot of problems in the initial phase of the disease. When I had a fever and would go to the doctor, my mother-in-law would not believe me and said I was pretending to be sick.”

Even close family members and spouses have subjected the survivors to discrimination, and apathetic behaviour, falling for the myth that the disease is transmitted through touch. These stigmas are more realized when we go through the personal account of Jailas Devi of Muzaffarpur, who recounted, “Everyone in my family would often taunt me, saying a lot of money is spent on you—where did you get this disease from? After my husband’s death, I had to work as a wage labourer, and whenever I had an attack, I could not work. Because of that, my children and I had to sleep hungry for days.”

Empowerment Through Solidarity

All the Network members have developed a strong commitment and conviction about the importance of the twin pillars of the LF elimination program - Mass Drug Administration and Morbidity Management and Disability Prevention. Much of this has stemmed from a paradigm shift achieved by taking them from being completely unaware of the disease that they were afflicted with to getting fully oriented on the disease; from its cause, and transmission, to management through self-care, prevention through MDA with the support of experts from the government health department and technical partners. This has empowered patients, cutting across age, gender identity, and caste, to express themselves with great confidence on different platforms and occasions.

One key takeaway from the Patient-Survivor Network is that if you can facilitate patients-survivors to translate their adversity into an opportunity for claiming and reclaiming their sense of selfhood through a newfound mission as the agents of change and the face of the solution, then we can tap into the resoluteness and conviction that is much-needed to stop transmission of infection, build bridges with and strengthen care and support for those living with filariasis.

Regaining Selfhood

One of the most significant outcomes of the patient network has been the increased awareness regarding remedial practices. Patients connected with the network now act as a guiding source on the prevention and management of the disease. Facilitating an ecosystem where patients can safely and honestly voice the adversities they face has translated into a collective opportunity to reclaim their selfhood as agents of positive change, transformation and nation-building.

Inputs shared by Akhila Sivadas, Executive Director of the Centre for Advocacy and Research.