Voices of Children:What does Latha Want from NACP IV?
Posted by: Administrator
in Public health – developing countries
on Sep 03, 2011 
Augustine Veliath, who was a Communication Specialist with UNICEF for 23 years is India's leading voice on health communication and child participation
My name is Latha but my father used to call me Pushpa. I am 17 years old. I live in Krishna District of the Southern Indian State of Andhra Pradesh. I will soon be ready for college, having completed my higher secondary education. I have never failed my examinations. Neither have I repeated a class.
“Your names are poetic”, my favorite Telugu teacher used to say. My name means a creeper. The other name indicates a beautiful flower. Creepers need support of a strong, sturdy and stable tree or pillar near it. Otherwise, they do not bloom. That support, is what we, as a family always missed.
When my father named me Latha and called me Pushpa, he probably expected to be around to be that dependable support by me as I grow up.
This was not to be. My father died when I was seven and my brother Bhasker was three. Since then, my mother Parvati, has borne the brunt of bringing us up, educating us, and caring for my brother and me. Both my brother and I are on ART.
My mother works as a domestic servant in the neighborhood, washing clothes, cleaning utensils and doing other chores in well to do homes.
We have relations. But they do not visit us.
There is one thing that I want to do, complete my education and find a job, as early as possible so that I can relieve the burden of my mother and give her some rest. She has not known what rest is, for many years in her life.
That strong, stable and sturdy support that I am looking for in life walked into our home four and half years ago. She said her name was Sheela. She was a post graduate and extremely knowledgeable. What is more important? She knew what stigma was. Like my mother, my brother and me she too was HIV positive.
‘Sheela Akka1 ’, that is what other children and I called her as she was older than us, said she was an Out Reach Worker of a large national level care and support programme called Chaha.
Chaha, I know, is a Hindi word that means a wish. For us children and our families Outreach Workers like Sheela were truly a wish that came true.
Sheela Akka knew everything and everyone. She knew about HIV. She also knew what our entitlements are, and where the facilities were and who could help us. She created support groups among ourselves, fought her way through the local administration to find more help for us and to get us what is ours legally. She persuaded more groups and people to be our support.
Sheela Akka cared for 83 children were like me. There were……. such outreach workers in Chaha project.
I once asked her how come she knows so much about everything. She said “we are constantly trained, mentored and monitored by our project Chaha”.
This is what we children need. Outreach workers, who will reach out to us and programmes that make such outreach work possible.
(All names have been changed.)
NACP IV: The National AIDS Control Organization (NACO) has initiated the process to start the next phase of National AIDS Control Programme called as NACP IV which is planning to adopt the inclusive, participatory and widely consultative approach similar to that of NACP III and further build on the successes of the robust NACP III and ensure completion of the reversal of the epidemic through enhanced prevention linked with care support and treatment.
1Term meaning elder sister
written by Guy Noronha , September 15, 2011
That is the message that emanates from Mr. Veliath’s poignant story of young Latha. All too often the victims of AIDS are innocent. They play no part in catching the disease and have no say in their treatment – medically or socially. Policies are framed and resources allocated with little or no attempt to involve HIV sufferers in the process.
NACP IV is crucial to how the war against AIDS is fought over the next five years. The various departments and ministries of government, donors, sponsors and international NGOs are well meaning but they need to be inclusive when formulating plans and allocating resources.
All across the country – from Bangalore and Hyderabad to New Delhi – there are cries of unhappiness and frustration. Radiating from a wide section of stakeholders in the battle to control the AIDS epidemic these cries are from sex workers, people living with AIDS, vulnerable groups and community organisations. Many of the affected are AIDS orphans who have no voice.
They are asking to be treated as humans not just the end users of condoms and injections. Their situations have to be evaluated humanely because they need more. They need shelter, support, care and livelihoods. They need the same access to opportunities that the rest of us enjoy.
Solutions have to be carefully looked at with social inclusion high on the list. Through consultation and real involvement will the affected, whether they are sex workers or unwitting victims of AIDS, feel that they matter. It is the only way the programme will work.
The fight against HIV/AIDS has to be more than just prevention and medication. They are vital but the issues are also Inclusion and Involvement.
This is why Mr. Veliath’s narrative is so significant. He is voicing the cry of millions of Lathas.
Thanks Augustine for an interesting narrative. It highlights the needs of many children. I’ve been reading about the importance of this issue and would like to share few excerpts:
When HIV/AIDS is increasingly depriving children of their basic rights, the world has to act now, urgently and decisively, to ensure the next generation of children are AIDS-free-says UNICEF: A Call to action (2005). There is a need for solutions, which would cover both the medical and socioeconomic dimensions of the epidemic.
I feel the role of outreach health care workers throughout the world is crucial to an effective AIDS response for a number of reasons. Health workers contribute not only by providing essential health services that directly save and prolong lives but they are also critical in challenging discrimination and stigma that threatens an effective response to AIDS expresses Andy Seale, in his Blog1.
The Policy Framework for Children and AIDS, NACO, India has rightly identified targeting public service providers first specially the health workers (ANMs, anganwadi workers etc.) and making them aware of the rights of affected children which it says may help the society overcoming myths and misconceptions which lead to stigma and discrimination. And that is true in the sense that after all, who is better placed to talk about the challenges and realities of people living with HIV and AIDS outside the infected and affected communities themselves? Surely it must be the people who work most directly with people living with HIV and AIDS!!! The role of health care workers cannot be underestimated.
Growing evidence has shown that CHWs can reach the poorest, most excluded children, and save their lives by providing care when and where it’s needed most. If we can train health workers to distribute IFA tablets, carry out deliveries, distribute mosquito nets and promote healthy behaviors such as breastfeeding, appropriate care of newborns, immunizations of children, is it too difficult to train them to care for special needs of children? Robert Black and Henry Perry, faculty members in the Department of International Health at the Bloomberg School of Public Health, Johns Hopkins University state that an analysis of combined results of 18 studies of home-based newborn care provided by CHWs indicates that newborn mortality can be reduced by 24 percent using this approach.2
Yet, we all know that community health workers cannot do this job alone. They must be supported and supervised by well-managed and adequately resourced health system.NACP IV needs to plan and budget for training of health workers if we hope to actually achieve the results. Latha’s story has also emphasized the importance of training frontline healthcare workers to handle stigma and discrimination.
Also, it is crucial that the health care environment is soon free of HIV stigma and discrimination – placing considerable responsibility on NACP IV.
Can anyone share such examples from other countries? As we move towards NACP IV, I am sure we can learn from experiences across the world.
1.Seale, Andy .Front-line health workers - crucial to tackling TB and HIV related stigma and discrimination. Blog spot(May21,2005) Accessed 20 September,2011
http://acw-stigma.blogspot.com/2005_05_01_archive.html
2.Black, Robert & Perry, Henry. Community Health Workers: Key Agents for Saving Children. State of the World’s Mothers 2011