Re: On Children Living with HIV

[Guest guest]

Dear Forum members,

The current incident in Kerala, proves my hypothesis ' more the

education... more the discrimination' and that's the reason discrimination is

more with medical caregivers. I have seen that those family members with, low

socioeconomic status, provide better care and without discrimination than those

with better socioeconoic condition.

In this case, the problem is basically with teachers/ school management. They

are discriminatory, but took back the children in school because of the court

order... not because they were convinced.

I faced a similar case in Mumbai about 3-4 years back. One of the social clubs

(Lions Club) conducted a free medical check-up camp for a school. In that camp,

among other medical problems, they found one child - 7 year old, to be

handicapped because of Polio. They decided to take-up the case of the child with

an orthopaedic suregeon for operation and meet the cost thro' the club as a

social responsibility. Surgeon tested the child for HIV as a pre-surgery

requirement (which is wrong) and accidentally found the child to be HIV+ve. As a

consequence the child was expelled from the school. The child was from a poor

family, father worked as a scooter mechanic and mother housewife. They stayed in

a slum. The case was refered to me for reconfirmation by the Lions club. After

confirming that the child was indeed +ve for HIV, so was his father and mother,

I took up the case of child's readmission to school.

After a couple of rounds of argument with the school management, they said they

were advised to expell child by a doctor; who was also member of parent-teacher

asso. (PTA) of the school. It took a while to convince the school that the

doctor who advised them was wrong, the surgeon who tested the child and then

declined the surgery was wrong, and Lions club also erred in being a party to

this episode. In toto despite involvement of too many social welfare agencies,

the child's fate was put in jeopardy and the child was happy being a physically

handicapped person than the social handicap imposed on him by all of them.

The school was run by missionaries and I succeeded in convincing them that they

had only one child infected with HIV, but I dealt with daily 15-20 HIV+ve

people, without getting infection, in my professional practice. The child was

reinstated, but all this without publicity!

I do not know, how this example will help the current case, as it is already

well publicised and has created lot of hostility in parents and teachers

community.

In a similar case in Florida during late 1980s, the villagers burnt the house of

three HIV+ve children when they were readmitted to the school following the

Florida Supreme Court order.

In Kerala, during early 90s, in one of the medical College hospital, the

Superintendent of the hosp. was detected HIV+ve and was disciminated in his own

hospital by his own staff. He was served medicines, milk and food plate with the

help of push by a stick and doctors refused to examine him. But that problem was

solved by a strong media campaign against the discrimination, that included my

telephone-interview in Matrubhoomi and Malayala Manorama; which was

published as a page-one story.

Dominic D'souza case in Goa was another example of extreme degree of

discrimination; when he was isolated in a 'sanatoria-turned-jail' in Mapuca

in 1989. We from PHO went all the way to Goa and fought the matter in Goa

legislature through addressing the Legislative Assemby with a special

permission of the then Speaker Dayanand Narvekar; filing a Public Interest

Litigation; public movement by organising demonstrations and media

campaign.

It was a a matter of less than a month and we saw a favourable change in

the Goa Public Health Act; which had provision for mandatory isolation of HIV

infected people. Adv. Anad Grover provided free professional service to

fight the case in Goa Bench of Bombay High Court. The success of Dominic

case was transgressed into birth of " Positive People " project of PHO and

then into the new NGO " Positive People " , as well as initiation of HIV Unit

of Lawyers' Collective.

We may see a similar transformation in Kerala in the near future, once we

handle this case to its logical conclusion.

Dr.I.S.Gilada

People's Health Organisation (India)

E-mail: ihoaids@...

[Guest guest]

Dear Dr.Gilada,

Thanks for your input. I am very new to this world of friends of PLHA.

When one of my 20 children was found positive by accident(she was having

high temperature for over a month and was constantly on several medicines

given by at 3/4 doctors, we admitted her to a nursing home in Delhi.Her all the

vital organs were infected by severe TB(As told by the doctor)and suggested the

TEST.I asked my daughter,she said yes and was very certain that nothing would

happen to her as she never entertained any customer without condom . She is a

positive person.

I paid 28,000/- for her 8 day stay in that nursing home and was threatened by

the doctors that if people come to know of this then she has to be thrown out

of the hospital.

I shouted at them and took her back home but was desperate as she needed

medicine immediately. I don't believe in any super power but Some thing

wonderful happened! I contacted 's Care and they admitted my child.She

was there for almost 6 months and was very happy. She knows her status and came

back home on 17th March,03.

She looks healthier but the doctors said her X-ray says nothing much improvement

has been achieved regarding her chest condition. She will be on medicine.Once a

week she will be going to the ]so Care & Will be with her Counselor.I

also need counseling to decide that whether to put her on medicine from now

which the doctors said has to be taken through out her

life.

I met one wonderful person called Ashoke Rao(Ashoka Fellow)in Delhi who

suggested that I should allow her to live as long as she can live without the

medicine & then it should be started. My only concern is as long as I am alive,

she won't be having any problem to get the money for her medicine.But she is 16

and I am 55.What should I do? Is there any institutional facilities to get the

medicine if she needs after?

I will be obliged if you guide me. I don't know how many of my children will be

detected positive as the most of them are from high risk situations.

Thank you

With Regards

Roma Debabrata

E-mail: romadeba@...