An estimated 250,000 people are infected with HIV, including 5,000 children in northern Indian state of Tamil Nadu. Over 17,000 deaths due to HIV has been reported in Tamil Nadu. Sunitha (name withheld) and her mother are among them. This is their story of resilience and courage in the face of all odds.
In partnership with the government of India, UNICEF with the support from MAC, is currently working on rolling out a telemedicine initiative for children, which will ensure quality services are made available to families such as Sunitha’s.
Sunitha (name withheld), lost her father when she was six years old. Her father was diagnosed with HIV in 2002, a year after she was born. Her mother, Kalaiselvi and elder brother, Subbu were also found to be positive.Fearing stigma and ostracisation from the community, Kalaiselvi and her husband refused to accept the fact and avail the treatment services. Death of Sunitha’s father and brother in 2007, forced Kalaiselvi to seek support from the Anti-Retroviral Therapy (ART) Centre, in Krishangiri district of Tamil Nadu
After the community came to know about the HIV status of Sunitha and her mother, they faced exclusion.After the death of her husband, Kalaiselvi works as a daily labourer, earning less than $ 2 a day. She often has to miss four to five days of work in a month due to opportunistic infections and visit to the health centre. An estimated 250,000 people are infected with HIV, including 5,000 children in Tamil Nadu. Over 17,000 deaths due to HIV has been reported in Tamil Nadu.
Travelling to the ART centre in Krishnagiri, located 50 km from her house in Opparapattii, is a monthly ordeal for Sunitha and her mother.It takes over two hours to reach the ART Centre. From their village they trudge 4 km to reach the bus stop. The return bus fare for both of them costs around $ 2.Infrequent bus service and long queue at the centre consumes their whole day. As a result, her mother loses a day’s wages.UNICEF is currently rolling out a telemedicine initiative, which will ensure quality services are made available to families living with HIV at the district level in the state. This will ease not only the travel issues but also the time and the loss of wages for people like Sunitha’s mother.
Sunitha, now 12 years, supports her mother with household chores. She fetches water from the community water supply point located 800 metres from her thatched house.
Sunitha, after coming back from school, grinds rice to prepare their staple food idli (steam rice pancake).
For Sunitha, her only friends are the chickens. She spends her free time playing with them and waits for her mother’s return from work.
Sunitha, after completing her household chores, goes to school everyday. Excepting the day she visits the health centre, she is always present in the school. Though she has a long path to trudge but she feels her indomitable will to be a teacher will be realised one day.
They are not just our patients, they become our friends, feels 25-year-old Dr Manali Lilani who works as a medical officer at the Paediatric department’s Paediatric centre for excellence for HIV tertiary care at the Lokmanya Tilak Municipal General Hospital in Mumbai.
“You are not just treating a child, you are treating the entire family. And the best part is the way the family reacts when the children get well. I find that gratifying,” Manali says with a smile.
Just three months after joining the centre, Manali has mastered the art of co-ordinating her team of 13 staff members, which treats children with HIV from the age of six weeks to 18 years. “My job entails clinical assessment, checking patients for infections and prescribing the required medicine during their visit to the centre,” she explains.
Manali also takes care of her administrative duties which involve co-ordinating with her department’s counsellors, nutritionist, pharmacist, doctors and research officer, to name a few. She also collects monthly data on patients, which then contributes to India’s national registry on children living with HIV.
Children affected by HIV sometimes suffer from gastroenteritis, tuberculosis and lower respiratory tract infections and end up as in-house patients. “Currently, we have three such patients with us. We pay more attention to these ‘special’ children and do not take any risks or think twice before admitting them in our ward,” she informs.
For as long as Manali can remember, she has always wanted to be a doctor. But being a doctor and working with children affected by the disease is far from easy.
Occasionally, Manali says, that some of the children have not been able to recover from the illness. “In medical school, we are taught to cope with death. For us, it is a part of growing up. You have to have the maturity to accept that,” she explains.
Manali throughly enjoys working with children despite the delicate and at times, challenging nature of the job. In medical school, some of Manali’s friends felt that kids are fussy and are unable to articulate their maladies. “So as a doctor, it is a big challenge to pick up clues and make a judgement about the course of treatment. Paediatrics is very gratifying.”
If you are nice to kids during a regular follow-up, they remember it and make you feel special the next time you see them, she giggles. “Most of the cases I remember in my short tenure here are because of the nature of interactions I have had with the children,” she adds.
Drawing competitions and puppet making workshops are arranged for the children by the department as a method of strengthening the cohesiveness amongst the patients, the families and the staff. “We also have our staff parties so we can bond with the team,” she explains.
We thank Dr Manali Lilani because she is our hero!
Photo by: UNICEF India/2013/Dhiraj Singh
Dr Mamta Manglani, Professor and Head of the Department of Paediatrics, Lokmanya Tilak Municipal General Hospital & Lokmanya Tilak Muncipal Medical College in Mumbai has come a very long way.
One of the pioneers of institutionalising treatment for children with HIV in the country, Dr Mamta has witnessed her department blossom into what it is today with the support of National AIDS Control Programme (NACO) and agencies like UNICEF.
“The hospital came across its first child with HIV in 1994. Subsequently, as more children began to report to us, we started the first Paediatric HIV clinic in December 1997,” she recalls.
The hospital, after negotiating with the Government through experienced doctors like Dr Mamta, set-up an Anti-Retroviral Therapy (ART) centre in August 2005.
Elaborating on the years of work and intense lobbying that went into establishing the paediatric centre, Dr Mamta explains, “the children then had to avail of the adult ART centre. At a meeting with NACO, we raised this issue stating that it was not good for the children. With the numbers of children living with HIV on the rise, we finally established our Regional Paediatric HIV Centre 2006 – one of the seven in the country.”
Since its inception, 20,100-odd children have received treatment at the Paediatric centre of excellence and HIV care. “In 2011, the centre was rechristened as Paediatric centre of excellence and HIV care as we were catering to children with special needs among the children affected by the disease,” she elaborates. Here, all medicines are free of cost, including those used for opportunistic infections.
Since there has been a huge acceleration in the roll out and uptake of ART since 2011, Dr Mamta is very optimistic about the future of her department.
Stressing the importance of access to ART, Dr Mamta observes, “From 1997 to 2005, the mortality rate was high because there was no ART available. But with ART access, thanks to NACO and UNICEF, the mortality rate is less than 3 per cent.”
Being a faculty member for about 26 years, Dr Mamta’s duties include not just teaching but patient care, academics and research and community-related collaborations. With 13 staff members, the department has branched into operational research since last year.
Dr Mamta and her team have analysed the quality of life of orphans with HIV who live in institutions or with their extended families. Another project that excites Dr Mamta and her department involves a telemedicine initiative, which will cater to patients with HIV.
“The telemedicine initiative will bring together four partners – Maharashtra State Aids Control Society (MSACS), National Rural Health Mission’s telemedicine infrastructure, Sion Hospital and UNICEF to improve quality of pediatric HIV care initially in 29 hospitals in Maharashtra with ART centres. We can consult and clinically evaluate patients and even dialogue with the concerned medical officer on a screen,” she elaborates.
After being a doctor for three decades, Dr Mamta continues to remain motivated. Drawing inspiration from her mother’s teaching of helping others, she plainly states, “The pleasure of helping people and the fulfillment of having taken care of someone’s suffering and pain are rewarding.”
We thank Dr Mamta Manglani because she is our hero!
Build public awareness and action from committed young people, individuals and organizations around the disastrous effects of open defecation in child and adolescent health – by linking the use of toilets with pride, dignity and aspiration to stimulate the creation of a new social norm where the environment is open defecation free because people are demanding to use a toilet.
Inspire governments, NGOs, private sector, media, academia and individuals to take bold actions that will contribute to the elimination of open defecation in India;
Leverage the campaign to reject open defecation by positioning young people’s catalytic power to drive nationwide change.
Support the goals and targets of the National Sanitation and Hygiene Advocacy and Communication Strategy, which sets out a national communication framework for awareness raising, communication and Social and Behaviour Change Communication for improved sanitation and hygiene.
The call to action for this campaign is to make people sign a pledge to the President of India. People can also donate towards UNICEF programmes that will help to support the cause against open defecation.
We plan to reach young people and create an active layer of advocates who can speak out against open defecation, further disseminate the message and influence their communities.
Through interactive social media components and initial on-ground activations across New Delhi, Hyderabad, Pune and Mumbai, the campaign will help to create the much needed buzz and noise about the need to see the nation free from open defecation.
Crafted in the language of young people - quirky, informative and inspiring – ‘Take Poo to the Loo’ aims to promote youth participation and, thus, will give different tools such us games and mobile applications to ‘put poo in its right place’, the toilet. Users will also have the opportunity to participate in interactive activities through www.poo2loo.com, www.facebook.com/poo2loo, www.twitter.com/poo2loo - #poo2loo and http://www.youtube.com/takepoo2loo, and show their commitment to end open defecation by signing a pledge to the Honourable President of India.
The reality is that those people who use toilets remain silent on the issue of open defecation.
This campaign, as correctly pointed out, is not targeting people who defecate in the open but those who actually have toilet and remain silent. With this three-month initiative, UNICEF India aims to do more than just create awareness on the issue. It also brings in youth participation by giving them power to put poo in its right place – the toilet.
This campaign talks to 600 million people in India who have toilets but have accepted the fact that their 620 million fellow countrymen defecate in open resulting in the death of thousands of children because of open defecation. Not to forget about millions of other children in India are stunted and malnourished.
This campaign intends to target the mindset that has turned a blind eye to people defecating in open. What we intend to do through the campaign is to create an active layer of informed advocates, who will speak out at every platform about open defecation and build pressure on key policy actors to seriously tackle the issue of open defecation. Advocates who will link the use of toilets with pride, dignity and aspiration to stimulate the creation of a new social norm where people don’t not defecate in open and demand a functional toilet.
Ending Open Defecation is a complex issue and there are no easy answers. Together all of us, as individuals, as civil society, private sector and youth organizations, academia, decision makers, UN agencies have to work together to put an end to open defecation. Together, we can, make the difference.
The Take the Poo to the Loo campaign is an innovative digital-led campaign focusing on putting an end to open defecation. With this three-month initiative, UNICEF India aims to do more than just create awareness on the issue. It also brings in youth participation by giving them power to put poo in its right place – the toilet.
UNICEF works with government in a number of ways to end open defecation. UNICEF developed the national sanitation and hygiene, advocacy and communication strategy for government of India. This strategy is released and UNICEF state offices are working with respective state governments to develop and implement state sanitation and hygiene, advocacy and communication strategies. UNICEF is also working with government to establish state open defecation elimination plans. The aim of developing these plans is to create an enabling environment that will support and improve the efficiency of the roll-out of the government’s sanitation programme NBA. UNICEF is also engaged in a number of advocacy initiatives including the present initiative on taking poo to the loo. UNICEF is also working with other departments of the government of India such as the Ministry of Human Resource Development and Ministry of Health and Family Welfare to improve the situation of WASH in schools and in health centres.