LEPRA, with its experience in deformity management in leprosy, initiated similar interventions to address the disability care need among persons affected by lymphatic filariasis, (LF). The organisation initiated its interventions in lymphatic filariasis in 2006 covering Puri and Ganjam districts of Odisha. Currently, LEPRA is implementing eight LF projects covering 17 endemic districts of Bihar, Jharkhand, Odisha, Andhra Pradesh, Telangana and Madhya Pradesh states. The core activities of our LF project includes mapping and listing, morbidity management and prevention of disabilities (home and community based), self-support groups, foot care, treatment of complications, capacity building, support MDA implementation, socio-economic rehabilitation, social audits, networking for system strengthening and referral of hydrocele people for surgery and system strengthening.

Achievements:

– 34,095 people affected by LF (Grade 1, 2, 3) and 1,674 of leprosy (G1 and G2) were trained in self-care practices.
– LEPRA facilitated and formed 499 self-support groups were formed with 7,494 people affected by lymphatic filariasis.
– In an average lifetime, each person walks about 1,15,000 miles and 75% of people have foot problems at some point in their lives.
– We facilitated and mobilised around 2,065 persons for hydrocele surgery at government institutions.
– 133 of 6,320 persons were having complications of LF and 34 of 6320 were tested positive for microfilaria.

The following are some key project details:

Restoring Lives of Forgotten People is a five-year project (2015-20) funded by Big Lottery Fund and Effect Hope to enable 1,20,000 (116,000 people with LF and 4,000 people with leprosy) people living in poverty to lead healthier, more productive and self-sufficient lives through an integrated and holistic approach to tackling the health issues and stigma associated with lymphatic filariasis and leprosy.

During 2015-18 period

  • The project contributed to the timely treatment, care and support of 50,412 people affected by LF and/or leprosy.
  • During 2015-18; 34,095 people affected by LF (Grade 1, 2, 3) and 1,674 of leprosy (G1 and G2) were trained in self-care practices.
  • Provided 12,367 LF footwear and 756 footwear for leprosy affected persons for foot care.
  • Improved skills and capacities of public health staff (1577), rural medical practitioners (1127) and community-based institutions to suitably address health, social and economic needs of affected people; 3403 persons with LF and 851 persons with leprosy are linked with government schemes and entitlements.
  • 208 self-support groups are formed with people affected by lymphatic filariasis and leprosy.
  • Integrated approaches to LF and leprosy control such as Morbidity Management and Disability Prevention (MMDP) are embedded in five government health facilities of Samastipur district.
  • 2,073 persons with hydrocele are mobilised and facilitated hydrocele surgeries in government health facilities.

Sankalp – Odisha Project (2015-18) is an initiative to tackle lymphatic filariasis and leprosy with combined approaches, funded by Lepra UK. The overall objective is to contribute to breaking transmission, prevent disability and address issues of dignity and poverty of people affected by lymphatic filariasis and leprosy in seven blocks of Puri and Nayagarh districts of Odisha. The purpose is to enhance access to health services to people suffering from lymphatic filariasis (18,048) and Leprosy (650) with a focus on women and children.

Sankalp – AP project (2015-18) is a community-based health project addressing LF and leprosy funded by Hinduja Foundation and Lepra UK. The overall objective is to improve the health conditions of 4,846 people affected by LF and 2,000 with leprosy and to enhance their social and economic inclusion. The project coverage is Krishna, Guntur and Prakasham districts.

Sankalp – MP Project (2017-20) aims at reducing the disease burden of LF and leprosy in five Blocks of Panna District with intermediate outcomes – a) the health of 3,000 people affected by LF and 2,000 people affected by leprosy is improved; b) strengthened leprosy and LF programmes at sub-district and district level and c) reduced stigma in communities for people affected by leprosy or LF.

Accelerating impact in India through Women’s Self-Help Groups is a pilot project (2018-19) ensures improved WASH (coverage and access) and increased awareness on NTDs for vulnerable and at-risk populations in 128 villages of Andhra Pradesh and Odisha in NTD endemic and WASH poor districts to be protected from acquiring and transmitting NTDs, consequently improving their health and productivity, and in the longer term, contributing to a decline in new NTD cases.

Core components of our LF programming:

The elimination of lymphatic filariasis programme provides only the consolidated lymphedema and hydrocele data which is available for district and state. This data is also not updated and there is no gender segregation or disability grade information.

To ascertain the actual data and information on residual morbidity disaggregated by age and gender is identified as an important activity and mapped and listed 59,175 people with lymphedema and hydrocele with disability grades.

In Puri district, the ELF programme reported 11,646 lymphedema and hydrocele cases. The project mapping listing exercise brought to surface over 13,320 LF cases ( of which 3400 hydrocele affected) in only three blocks (out of 11 blocks of the district) which reveals gap and missed out cases in the government data.

LEPRA used KoBo mobile technology for collecting this baseline data and promotes combined data collection for leprosy also. LEPRA shared its LF data to the concerned district officials for inclusion in their reporting system. The NVBDCP Odisha adopted the patient card of LEPRA and being implemented in other endemic areas for data collection.

Lymphatic filariasis leads to permanently disabling conditions and self-help are more relevant and considered as the most effective solution. A group of people suffering from a particular disease can form a peer group. Apart from taking care of self, the group can also be a collective force to be used beyond the ambit of self-care. Further, these persons are empowered and trained on self-care practices, rights and entitlements and the emerged leaders from these groups as acting as change agents. Formation of Self-care group utilising this concept, and promoting as the instrument to solve LF related problems has been the prime innovation of LEPRA through its ongoing projects. These Groups would comprise of persons with lymphedema and hydroceles involving the local ASHAs, multipurpose health workers, PRI members and community volunteers. The members of these Self Care Groups would vary from village to village but in normal circumstances, the number should range between 10-15 members. These Groups in addition to self-care would act as the fulcrum for taking the responsibility of prevention and cure of the disease with close collaboration with the mainstream agencies and other support providers. Till date, LEPRA facilitated and formed 499 self-support groups were formed with 7,494 people affected by lymphatic filariasis and leprosy.

An important aspect while dealing with the lifelong consequences of LF is to prevent worsening disability caused by LF disease. Early case detection and treatment are the most effective interventions for preventing disability. For secondary prevention, self-care is the key to prevent worsening of impairments amongst people who have an irreversible neural impairment or secondary impairments such as wounds and entry lesions. Simple and cheap methods have been developed for managing lymphedema, using water and soap along with oil massage, and occasionally supplemented with antibiotics. Experience shows that such methods have significantly improved the quality of life of affected persons. Morbidity management and disability prevention primarily focus on the care of acute infections, lymphoedema including LF and hydrocele. Promotion of ‘self-care practice’ (maintaining the hygiene of affected limbs) has been a very successful approach to reduce the suffering due to a disease or other conditions. This activity was almost non-existent in the operation area before the project. LEPRA emphasises on promoting self-care practice to reduce morbidity using home-based and community-based management. In addition, we organise Integrated Prevention of Disability (IPoD) camps at a peripheral level in the rural villages and urban blocks to prevent and reduce disability in the persons affected with lymphatic filariasis (LF) and leprosy through a community-based approach. We reached and treated 46,368 persons reached for prevention and reduction of disability due to lymphatic filariasis through morbidity management and prevention of disabilities programme.

In an average lifetime, each person walks about 1,15,000 miles and three-quarters of people have foot problems at some point in their lives. People with LF are 20 times more likely to have foot problems than the general population.

LEPRA recognised the need for the provision of footwear as an essential element of the management of disabilities, adopted by various podiatry techniques and practices in providing protective footwear to the persons affected by lymphatic filariasis. This has become an integral component of our referral centres. The LF footwear is made of EVA (Ethylene Vinyl Acetate) and found to be effective in protecting the feet of 19,420 persons with lymphedema received customised footwear and use of footwear through regular follow up has prevented the worsening of deformities.

For improved access of the community to the service required for disease and to sustain the services, the project has taken steps to train all the cadres of health functionaries in the operation area. The project trained 2,500 medical officers, government health staff and multi-purpose health workers, 3,500 Anganwadi workers, Accredited Social Health Activists, community volunteers and PRI members on various aspects of the disease. These programmes addressed key issues like – skills and knowledge on LF management, self-care, and issues pertaining to stigma and discrimination.

In order to enhance access to the persons with disabilities due to LF for treatment, we established and run eight clinics in the premises of the government health facility to sustain the services for prevention of disabilities and complications. Formal agreements were made with the district authorities for implementing these clinics.

During the intervention with LF cases, it was observed that there are a reasonably high number of hydrocele cases and only 15% of them underwent surgery for hydrocele. Considering this gap, LEPRA took the initiative for hydrocele surgery at government institutions. In 2009, a Memorandum of Understanding (MOU) was signed by LEPRA with four District Health Societies (DHS) in four districts in Bihar, viz. Munger, Bhagalpur, Samastipur and Begusarai for conducting hydrocele surgeries. The LF affected persons are sensitised to get linked with the existing health insurance schemes namely Rashtriya Swasthya Bima Yojana (RSBY) and Biju Krushak Kalyan Yojana (BKKY) and avail facilities for free hydrocele surgeries in Odisha. We facilitated and mobilised around 2,065 persons for hydrocele surgery at government institutions. This appears to be highly effective and has helped to improve the quality of life by lessening suffering.

LEPRA supports the government while implementing the MDA in our coverage locations. We contribute and support in planning the district level programme, training the front line workers on MDA campaign, mobilisation and conduct IEC before and during the MDA campaign. We also conducted post-MDA evaluations in some districts of Bihar and submitted the report to the government for action.

Lymphedema and hydrocele lead to permanent, long-term disability; they also often cause disfigurement, with serious psychosocial and economic consequences. The direct economic costs of managing acute and chronic manifestations are a burden on patients. LEPRA supported 75 beneficiaries with Socio-Economic Rehabilitation (SER) to become economically independent. In addition, linked 2,500 persons with various government schemes and entitlements.

In 2012, The South-East Asia Regional Office of WHO commissioned LEPRA to share the learning and expertise on managing morbidity and preventing LF related disability so that the knowledge would be made more widely available in the sector. Based on this, a ‘strategy on morbidity management and disability prevention in Lymphatic Filariasis’ was developed and published in 2013. This is the first of its kind of ‘technical assistance’ provided by LEPRA to WHO outside the leprosy programme and has opened up avenues of work with WHO in Neglected Tropical Diseases.

LEPRA identified as a partner to scale integrated approaches for leprosy and lymphatic filariasis programme in the state of Bihar from Director, National Vector Borne Disease Control Programme, Ministry of Health and Family Welfare dated 27th October 2016 (D.O. NO 8-72/2014-15/NVBDCP/ELF).

Globally 2.4. Billion people, about 1/3 the world’s population, lack access to adequate sanitation. 1 billion people practice open defecation. 664 million do not have access to safe drinking water; putting them at risk of infection and even reinfection with > 1 NTD. The effects of NTDs and poor WASH affect every aspect of life – health, nutrition, development, economy, dignity and empowerment, perpetuating an intergenerational cycle of poverty and deprivation.

NTDs, where transmission is most closely linked to poor WASH conditions, are soil-transmitted helminthiasis, schistosomiasis, trachoma, lymphatic filariasis, visceral leishmaniasis, dengue, chikungunya, and as early research from India suggests, even leprosy. WASH is also critical in the management and self-care of NTD related disabilities. Linking WASH and NTD programs, therefore, has the potential to impact multiple NTDs through a single area of intervention.

The Blue Peter Public Health and Research Centre (BPHRC), a research wing of LEPRA has been awarded a collaborative research project on Lymphatic Filariasis titled “Molecular epidemiology and host susceptibility of morbidity and co-morbidity of Bancroftian Filariasis in endemic states of India a community-based study” was initiated in partnership with Frie University, Berlin. Periodic mapping of active LF cases in Andhra Pradesh, India (Chintavalli, Kottur & Pedana), covered by the field programme of LEPRA has been carried out during 2010-12. All individuals are screened for the presence of symptomatic filariasis cases with complications and asymptomatic individuals with microfilaremia and/or circulating filarial antigen were mapped. Overall 6,320 persons from three villages of Krishna district of Andhra Pradesh were screened (male -2610, female – 2591, male child – 546 and female child – 573) for symptomatic and asymptomatic filariasis. All asymptomatic individuals were screened by night blood smears for microfilaremia and/or circulating filarial antigen. 133 of 6,320 individuals were having the complications of LF and 34/6320 were tested positive for microfilaria (either by smear, antigen or both). All individuals with microfilaremia and all symptomatic cases were further studied for host immunological parameters and genetic susceptibility factors (Collaborative research study funded by Indo German research training programme- GRK IRTG).

Operational research project: (under review for publication)

The study conducted aims to assess the economic impact of Lymphatic Filariasis on those suffering from the disease in the 2 states of Odisha and Bihar, India by estimating the differences in the expenditure on LF treatment with varying grades of Lymphoedema, the effect of acute attacks, work days lost due to LF, and its impact on males and females. The results showed that there was a prevalence of 22.8% of LF in the study community. The monthly LF expenditure was around 5% of the monthly income and 1/3rd of the total monthly health expenditure of the households.  A 7.7% and a further 23.3% increase in the money spent on LF from grade 1 to grade 2 and to grade 3 LF cases respectively with an additional 18.5% more money spent on dealing with the acute episodes. There is a 60% increase in the numbers of working days lost in cases with acute attacks. Patients who lost working days due to chronic or acute forms of the disease spend 31.5% more than those who did not.

There was a 10% increase in the numbers of acute episodes in the grade 3 compared to grade 1 or grade 2 Lymphoedema cases. There was no difference between the genders in the numbers of acute episodes but females spent more than males on Lf treatment. These estimates may help authorities to understand the cost of neglecting Lymphatic filariasis and motivate them to rethink and redesign their programmes.

Social exclusion, discrimination and self-stigmatization have always been axiomatically associated with NTDs. Especially in those NTDs with unpleasant physical manifestations and gross disability like Lymphatic filariasis, psychological distress forms a huge component of the suffering inflicted by the condition, which may not be always that evident. The Global Programme for Elimination of Lymphatic filariasis (GPELF) focuses on prevention of new transmissions (MDA) and physical management of morbidity (MMDP) but fails to address this hidden burden of the condition.

This study was conducted to understand the psycho-social impact of LF on people suffering from the condition along with a gender perspective in 2 endemic states of Odisha and Bihar, India and to compare cases with different grades of lymphoedema, as well as the presence or absence of acute attacks etc.

The results show that stigma, self-perception and social misperceptions about the disease are widely prevalent as 1/4th of the study population were not aware of the main cause of LF and almost 1/2 of the cases did not know if filariasis was a communicable disease or not. Only around 31%, 45% and 48% of cases knew about entry lesions, self-care practices and acute attacks respectively with more awareness among women than men (p <0.05). Whereas almost 20% of male cases receive support from their spouse for self-care practices, only 13% female cases get similar help from their spouses(p <0.05). More female cases rely on family/relatives (54%) and friends /health workers (7.9%) for support during self-care compared to males (46.7%), (6.4%). When only around 15% and 20% of grade 1 and 2 cases avoid major festivals, 30% of cases with grade 3 disease avoid such events (p< 0.05).

When the genders are compared, more female cases avoid major festivals (20%) and public places (23%) than male cases (around 11%). More female cases feel shame, embarrassment, unable to cope, like a burden, inferior, unattractive, economically insecure, frustrated, isolated and hopeless than males (p <0.05). Around 25% of male cases with hydrocele reported self-stigma and 12-14 % of them faced problem in their marital and sexual life. More than 20% of female cases felt that people with LF should not marry, avoid sharing food, should be isolated from family, should not attend social functions and should not engage in employment. More male cases think that females with LF should not breastfeed their babies (p <0.05). Around 10% of the cases do not seek treatment for LF at all. So it can be concluded that there is a general lack of awareness on some key issues about LF in the study population. There is also a difference in social and self-perception of their conditions between the genders with women bearing a significant social and psychological burden of the condition.