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INTERVIEW - Anjali Gopalan,
Executive Director, Naz Foundation (India) Trust |
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| "Caring for children infected and affected
by HIV/AIDS in India" |
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| In what ways are the issues for children
infected and affected by HIV being addressed in the country? |
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| A few initiatives are being undertaken. There was recently,
a meeting convened by UNICEF for Orphaned and Vulnerable Children
(OVC). Even NACO, for instance, has policy guidelines for affected
children. But these need to be followed up for effective interventions
to happen. What we need is a concerted effort and a strategy
in place. |
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| Naz Foundation (India) Trust (NI) runs an orphanage for children
infected and affected by HIV. But resources are scarce as care
services for HIV are not in the mandate of most donors in India. |
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| What are the specific areas where the National
response could be stepped up? |
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| The National response needs to look beyond Targeted Interventions
(TIs). TIs are important and serve their own purpose but they
need to be situated in an overall environment where they can
function effectively. Also, it is important to not differentiate
between prevention and care. Care needs to be looked at as an
essential component of prevention programs and activities. |
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| What has Naz India's experience been like
in working with positive children? What have been the key areas
of learning for you? |
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| I think we need to advocate in multiple areas
for children who are HIV positive to be accepted. So there are
issues of stigma and discrimination that we need to focus on.
When the children are sent to school, for instance we need to
keep their status confidential. |
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| Also, as far as treatment, care and support is
concerned, the mechanisms are not very clearly defined for children.
For instance, there are no clear guidelines on CD4 counts for
ARVs. |
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| The care systems for children need to be multi-faceted. It
is equally important to be able to care for children within
the home environment. Similarly, it's important to understand
what foster care would involve in a resource-impoverished country
like India. |
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| Institutional care at present is also not very geared up to
meet the challenges. We should not think of large institutions
but care in smaller settings of 15 children, where one can focus
on helping them live with dignity and self respect and contribute
to the society positively. |
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| Do you think a long-term commitment for
working with infected children is sustainable? What are Naz
India's plans to make this happen? |
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| It has to be sustainable. We have to make it sustainable.
In terms of Naz India's plans, given that traditional donors
don't fund care programs, there is a black hole. Some of them
have been pushed into prevention. So I think NGOs like us should
focus instead on building the corpus through private donors. |
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| Naz want's to focus on developing a sustainable and comprehensive
care and support program in the long-term. This would include
both institutional care and home-based care, with special emphasis
on women and children. |
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| What have been the specific medical and
treatment related issues vis a vis children that you have experienced? |
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| There are no clear guidelines for dosages and pediatric formulations.
Even in the area of monitoring, there is no way to measure accurately
the CD4 counts. |
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| The children at the Naz India's care home have much better
overall health and immunity than what we've seen in the Home-based
care program. I think regular monitoring makes a difference.
Strict adherence to the ARV regimen is much more possible in
institutional settings than in home settings. Also, children
with us get the best possible nutrition, which is mandatory
in case of ART. |
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| What suggestions do you have for HIV/AIDS
programming for children especially with the National AIDS Control
Program, phase 3 (NACP 3) round the corner? |
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| We need to look at the multiple needs of children, whether
they are in the community or are orphaned. There is a need for
pediatric formulations for children and also to create a protective
environment where they can be cared. This includes issues of
educating the children and placing their needs within the overall
framework of rights. |
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| About
Anjali Gopalan |
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