Delayed Diagnosis of HIV in Children in Manipur, Karnataka and Andhra Pradesh.

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Delayed Diagnosis of HIV in Children

Most children are diagnosed as being HIV positive after they are two

and a half years or older and most often they are tested only when

one or both parents report positive, says a study conducted by

Population Council in collaboration with the Social Awareness

Services Organisation (SASO), Asha Foundation and Freedom Foundation

in the high prevalence states of Manipur, Karnataka and Andhra

Pradesh.

The study, done between June and December 2006, through in-depth

interviews with 208 caregivers of HIV infected children at selected

treatment centres explores the barriers to accessing care for HIV

positive children. It also assesses the current level of adherence to

ART among children receiving treatment. The study acquires special

significance as an estimated 80,000 of the 27 million births that

take place in the country every year could be HIV-infected said Avina

Sarna, project leader and programme associate at the Population

Council. NACO has documented 5600 HIV-positive children but only a

small number of the infected children receive antiretroviral therapy

(ART).

Seventy seven percent of the children were more than 5 years of age,

and more than 80 percent had been diagnosed after the age of two and

a half years. The late diagnosis of the positive status of children

indicates a delay in treatment. It also means there is a gap with

regard to PPTCT (prevention of parent to child transmission) as an

entry point for diagnosis and access to treatment.

Among the key findings of the study were the difficulties faced by a

third of the caregivers in getting confirmed a HIV diagnosis and

getting referred to treatment centres. Since 60 per cent of the

infected are extremely poor, earning about Rs 3000 a month, and they

had financial problems to get the tests done and to access drugs.

A 27-year-old female caregiver from Hyderabad says " when we went to

get her tested for the first time they charged Rs 3000. Then they

prescribed medicine for which I spent Rs 1000. We used the medicines

but there was no improvement in her health so we took her to the

children's hospital. There we spent Rs 5000 for tests as well as

medicines. We had a lot of financial stress… "

Disclosure of HIV status to children is low and the reasons for not

informing the children varied from `the child being too young to

understand' to `fear that the child would tell others in the

community leading to stigma and discrimination by society.'

Though less than half the caregivers experienced stigmatization, they

did experience discrimination by the family… the positive child was

not allowed to attend school or play with other children.

A 27-year-old caregiver from Bangalore says " after confirming

husband's HIV status, I underwent a HIV test. The doctor asked us to

bring our child for diagnosis. He was also declared positive. The

news spread in our village, people started to isolate us. My

neighbours didn't allow my child to play with their child. The

village people didn't let us use the bore well 5-10 times. I was not

able to see this tragedy so I left my village. "

However, some of the earlier social myths about dealing with infected

people seem to be disappearing. Less than six percent of care givers

complained about health workers refusing to attend to their children

or having to wait longer than other patients to get attention. There

were also very few cases of people being tested without consent or

HIV status being disclosed without consent.

The study also found that the caregiver's knowledge of HIV

transmission was inadequate and knowledge of antiretroviral treatment

needs improvement. Several caregivers were also pessimistic about

continuing treatment life long. Seventy-one percent felt their child

would not to be able to continue treatment long term because they

were unsure of their own survival, survival of the child, had

financial problems and were unsure of availability of free ARVs for

years on end. " If I die no one will look after him, " said a 25 years

old caregiver from Bangalore.

The vast majority of children on ART, were receiving the first line

medications. The majority were using fixed dose combinations – a dose

in the morning and evening respectively. The average duration of the

treatment for children studied was 14 months. In Hyderabad children

had been receiving treatment for a shorter time, average of 6 month,

as the ART programme for children started recently. The average

duration of treatment in Bangalore was 24 months and 16 months in

Imphal.

Though the over all adherence to the treatment was high, three

reasons were cited for missing a dose—the child was unwell, the

caregiver forgot to give the medicine and both

(caregiver and child) were away from home. A caregiver from Hyderabad

said " yes, he missed once when we went to the village that was before

last month. I took the medicines along with me but I did not give

because I did not want all others to see me giving medicines to avoid

all their inquiries of why my child is taking medicines. "

Nearly half the caregivers reported difficulties in administering

medications to children. The three most commonly cited problems were

the child refusing to take medicines, breaking tablets to get the

correct dose as pediatric formulations are not available and children

spitting out medicines due to bad taste. " It is very difficult to

break tablet sir. There is no mark in any tablet. My child refuses to

take also because of nausea, bad taste etc. I think there should be a

medicine especially for children instead of this breaking, " says a 29-

year-old caregiver from Bangalore.

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Press releases on the research done by Population Council on HIV and

AIDS. The material was released on April 12 at a press conference.

Usha Rai

e-mail: <usharai1948@...>