Read about Neelam Kshirsagar, Head, Project Development, Impact India Foundation (India), interviewed by Wilma Mui, program associate at the World Faiths Development Dialogue (USA).

WM – Can you tell me a bit about Impact India and how you came to work for the organization?

NK – Impact India Foundation was launched in 1983 by the Government of India, and I joined in 2001. The United Nations set forth a mandate to address disability reduction and we emerged from the House of TATA, which is a big business enterprise in India that operates through the principle that their profits should be reinvested in acts of philanthropy. Impact’s first Chairman, A. H. Tobaccowala, and Founding Director, Zelma Lazarus, were also Chairman and General Manager, Corporate Communications, of VOLTAS, a TATA group company, and they were assigned the task of addressing the mandate and that is how Impact India formed.

Agnès Soucat [a moderator for a panel, WHO], hit the nail on the head when she called me a social activist, which I am at heart. I used to work with a civil society organization for the city of Mumbai: Action for Good Governance & Networking in India (AGNI), where I found a lot of the city’s middle class, who lived in high-rise apartments complaining about migrants from rural areas that lived in the city’s slums. I would hear these complaints and get so angry because slum dwellers were the people who provided domestic help to the wealthy middle class – working in their homes to take care of their babies, to cook their meals, to drive their cars, and to do other jobs. They thought slums were a sore sight because they lived in high-rise apartments and wanted scenic surroundings, not slums. But, they benefitted from their labour. When I met Zelma Lazarus and she told me of Impact India’s mandate for disability reduction in rural India, I said, “That’s what I want to do, to contribute in my own way to help address the inequities by paying attention to rural India through the health sector.” Rural India has not really progressed. Everyone says that India is a developing economy, and that’s true in the cities, which are flourishing, but in the rural areas, the progress is slow. The disparity is huge.

WM – Can you tell us about Impact’s projects?

NK – We began by looking at immunization strategies and conducted a Polio- free Madras campaign in the city now known as Chennai, in the mid-1980s which was widely successful. This was at a time when the people and the health ministry officials in general did not know much about the need for immunization. Impact India vaccinated about 300,000 children against Polio in that city and we replicated this initiative in Bhavnagar and in Bombay (now Mumbai) which laid the foundation for the Government’s immunizations against all childhood diseases. We were amongst the pioneers for Polio immunization in India and it took so many long years for the Polio immunization campaign to develop momentum and involve other stakeholders for the country to be declared Polio-free in 2014.

Soon after, the idea of the train occurred. In the 1980s India had the largest railway network in the entire world. We had tried using medical mobile buses for health treatment, but there was a limit to procedures they could undertake and how far they could go; the last mile reach was nearly impossible. We capitalized on the existing large railway network and used it to our advantage. That is how the Lifeline Express – the World’s First Hospital Train – started in 1991 in partnership with the Government of India’s Ministry of Railways.

Today the train is 26 years old and it has grown from three used old wooden carriages to five new steel carriages in 2007 to seven carriages in 2016. Since 1991 the Lifeline Express has served over a million disabled poor in rural India thanks to the “donated” services of about 200,000 medical professionals and sponsors. It is a way to bring quality healthcare free-of-cost to the rural masses. We have two Operation Theatres, fully fitted with state-of-the-art equipment on the train, each with their own Recovery areas. We have Specialists from Delhi, Mumbai and other metros who volunteer on the train, for about 10 stops a year to conduct corrective surgeries on reversing disabilities: Cataracts, Hearing impairments, Cleft lips and Burn contractures, Orthopedics – Post Polio contractures, Club Foot, and Cerebral Palsy cases. In addition, we treat patients for Epilepsy, and Dental problems. We provide health education and counseling. We have an auditorium for Continuous Medical Education for local health professionals and where we can show preventive health films, so when people are waiting for their dental treatment they are exposed to these health messages. We also talk to schoolchildren about the importance of dental care. In India we have a bad habit of chewing tobacco, which results in all types of tumors and Oral cancer. In the last few months we have added diagnostics for Oral, Breast, and Cervical Cancers and have conducted Cancer surgeries too. Also recently introduced are Family Health services, which include counseling and the use of devices for the spacing of births and the conduct of procedures.

Spurred on by our success with the Lifeline Express we felt the need to also address prevention. Unless you look at prevention, the problem of disability is not going to stop. In the early 2000s, we commissioned a scoping study that looked at areas in India that had the worst health and disability indicators.  Three States in the country were identified as the most in need of help: Odisha, Karnataka, and Maharashtra. Impact India commenced a Disability Reduction Project in Odisha – the worst affected State.  

About that time the Lifeline Express came to Mumbai, the capital city of Maharashtra, for periodic overhaul and we held an exhibition placing the train on public display. We invited the Government, corporate donors, and people in general, so they could see this “Magic Train” for themselves. After all, the Lifeline Express – the world’s first hospital train – has been replicated by four Lifeline Express trains in China, inspired two trains in South Africa, a river-boat hospital “Jibon Tari” in Bangladesh and Lake Clinics in Cambodia.

The Government of Maharashtra came and saw the Lifeline Express and was impressed. They asked us for help. Maharashtra has many tribal pockets with chronic malnutrition affecting pregnancies, infants and children under- five years.  In response Impact contracted the Tata Institute of Social Sciences (in Mumbai), to conduct a Baseline Survey in a tribal area located about two hours to the North of Mumbai in 2004, and soon after commenced the ‘Disability Reduction Project’. We re-named the project ‘Community Health Initiative’ (CHI) knowing that to reduce the incidence of congenital disability an integrated approach would be required to address the health of the community as a whole. The CHI has been through three phases.

WM – Can you tell us about the progression of the three phases?

NK – Phase one, from 2005-2012 centered on winning the confidence of the reclusive tribal communities. The Lifeline Express proved to be our best goodwill ambassador. We brought it in to the CHI area seven times over seven years treating all kinds of disabilities. We brought down existing disabilities by 72%, including 80% of people with cataracts, 100% of all existing and willing cases of cleft lips, and 50% of the hearing impaired.

The second phase of the CHI from 2012 to 2016 focused purely on prevention. We established connections, earned trust, and built relationships. One Primary Health Center (PHC) area was identified by the Government as being one of the most challenging in the District.  India’s National Rural Health Mission states that each PHC in a tribal area is to serve 25-30,000 people. The PHC that the Government assigned to us served 60,000 people and was located in a remote forest area. Within one year of initiating work we increased footfalls from 2,000 to 16,000 patients at the PHC by recruiting local residents and training them as change agents and to be peer influencers. This center was earmarked for special funding from the Government, for which it became eligible only after the number of child deliveries at that center increased. This was a challenge because home births were the tradition.

We motivated pregnant women to register their child deliveries at the PHC or at the rural hospital, because home births by traditional ‘unskilled’ workers were not safe.  Institutional births provided an opportunity for Government health staff to monitor and recommend regular antenatal care, including immunization and breast-feeding, and to track the babies’ growth. We introduced 23 interventions in our second phase. Many of them focused on Reproductive Maternal Neonatal Child Health & Adolescent (RMNCH+A). We provided training to Government health workers on a range of topics including disability prevention. Impact encouraged them to conduct outreach health programmes for the community. This practice was internalized by the Government. Community health workers used home visits to address anaemia, which is a large issue especially among pregnant women, through early pregnancy identification and providing iron and folic supplements. However, these proved to be short-term fixes and did not address the root problems of malnutrition.

Phase three of the CHI commenced in 2015 with a focus on the adolescent girl and nutrition by capturing the attention of vulnerable and impressionable minds. We are now working with about 20,000 adolescents, including 9,500 girls in school, and a small percentage of girls who have dropped out of school. We implement a six-pronged approach:

  1. Health and Nutrition Education for both boys and girls, including topics on reproductive health, menstrual hygiene management, HIV Aids.
  2. Anaemia reduction- strategies are discussed, including the testing of Haemoglobin (Hb) levels against the normal range, ways to build up iron levels to counter the side effects of anaemia: fatigue, tiredness and low cognitive abilities that come in the way of maximizing current educational opportunities and its debilitating intergenerational effect. Iron & Folic Acid Supplementation is provided and De-worming, good Sanitation and Hygiene practices are advocated.
  3. German Measles or Rubella immunization.  Studies have shown a correlation between mothers being infected by German Measles and their children being born with a disability. One vaccination by a pre-teen female provides 25 years of immunity against the disease which covers her child-bearing years.
  4. Cultivation of Household Kitchen Gardens. The important thing is to use locally grown vegetables, for example, moringa, basella alba or curry leaves. They eat the pods of the moringa tree, but do not know that its leaves are rich in nutrients. We hold cooking demonstrations using the leaves in breads, curries, etc. to promote the nutritional value from this locally grown tree.
  5. Creating Village Health Committees (VHCs). This is required to form a supportive community and a sustainable and enabling ecosystem for adolescent girls. A prevalent social norm is to view a girl in the family as ‘outside wealth’. Therefore, why invest in her while she is with her family of origin for a short period of time, for she will soon be married and will belong to another family? In practice this means she eats last, is the first sibling to drop out of school to take care of domestic chores such as gathering firewood, washing clothes at the well, or working the fields to supplement the family’s income.

Impact aims to bring an attitudinal change in the community where girls are no longer marginalized, but are placed firmly in the center of their care, in acknowledgement of their value and as progenitors of future generations. The VHCs are sensitized on health and nutrition topics, on the Government health system – where to go for what service; the entitlements and schemes that tribals are especially eligible for. This is to empower them on their Right to Health to generate a demand for health services and, in the long run, to track the Government’s health system by making it accountable to the community.

  1. Capacity Building of Government Health & Education Staff. Training on vital health issues concerning the adolescent girl is paramount to build a mechanism for sustainability.

WM – What would help boost your project?

NK – Visibility. The funds we raise are utilised towards our project activities and evaluation studies. We do not have funds to publicize our projects, our achievements and to attract more support. If more people get to know about our work, we can go from 6 out of 10 girls being anaemic to our dream of making the country free of malnutrition. India has the largest youth population in the world, 800 million under age 35, but what is the health status of that population, when the majority is born to women who are anaemic?

The compromised health of our youth is a national resource going to waste. No one talks about this subject and it needs to be highlighted. We need to have an entire movement. Not just in India, but in South Asia, Africa, and beyond.

WM – What are your recommendations for youth- in both India and globally?

NK – Just like you joined the Peace Corps, I would like more and more volunteers to come forward. Impact attracts medical interns from across the world who volunteer on the Lifeline Express and in the CHI. We would love more people to come and visit our projects because they become our ambassadors. They should question and view our interventions offering new perspectives. The youth in cities need to know what a rural village in India looks like, what the population eats and lives on and on how little each family earns. Over 63 million of India’s population is pushed to poverty every year because of healthcare costs.  The youth are actors and leaders and they can help us find solutions to move forward.  

WM – What is your vision for the world in the next 30 years?

NK – My vision in the next 30 years is a world free of malnutrition and anaemia through the establishment of better health care systems.  Unequal access really hurts. It is something that I live with on a daily basis and defines my personal choices. I see the difference between the lifestyles of my grandchildren in the US and those in India’s rural villages and it is vast. The lack of opportunities in under-served India is a big challenge. This makes me angry and moves me to search for answers and it is why I am a social activist at heart.