KSACS Actions: Is stigma reduced or induced due to these actions?

[Guest guest]

Dear Forum members,

It appears that the actions of Kerala AIDS Control Society (KSACS) need an

independent monitoring. Some of the recent actions taken by them is doing more

damage to HIV response than offering HIV prevention and care.

For instance, as part of giving translated Malayalam words for english

expressions KSACS released the book “I live” during the World AIDS Day with the

expansions for recently termed services as:

Jyothis (VCTC) - “Medical Counselling Center”

Ushas (ART Centers) - “Comprehensive ARV Treatment Center”

Pulari (STD Clinics) - “Healthy Sex is delightful”

Sneha (PPTCT) – Feather touch of love and

Prathyasa Kendram (PLHA Drop in Centers) as “Union of togetherness”.

(I have tried for a meaningful translation from Malayalam to English)

But when KSACS prepared and sent a sign board to the District Level Network

(DLN) run Drop in Centers in Kerala to display at the front of the building, it

is printed as “Prathyasa Kendram: Gathering of the HIV infected - Union of

togetherness”.

While terminologies for all other SACS services are so intentionally designed

against stigmatization, why it is not so for the infected ?

It will be further embarrassing to hear that it gives more visibility to the

programme. What SACS gains through such a visibility rather generate more

stigma. A general concern is all those who come to the Center will be assumed as

infected by the public; but there are more specific groups affected by this;

1. PLHAs accessing services but doesn’t want to disclose their status, PLHAs

referred from other service providers, DLN’s member PLHAs, staff PLHAs, DLN

Office bearers and board members/ PLHAs and other invitees coming to attend the

Support group meetings or other functions or meetings etc.

2. Network caters people in immediate environment of PLHAs also (Discordant

spouse, family members, friends, care givers etc.) at the center for many

support and extended services.

3. As a project center having networking as one of its main component there are

so many people from various fields/ agencies closely associate with the DLNs and

its projects like DIC, who frequently visit the Centers.

The problems arising from this kind of labeling are manifold.

Primarily it is against the basic right of a person to maintain confidentiality

about his/ her status. This labeling will act as a block for many PLHAs in

accessing the center. It is like a pressure factor to turn open if they need to

receive services from here.

We can presume what will happen then! Slowly there are chances of this center

reviewed as under-performed or unsatisfactory due to fall in targets,

performance and services. I couldn’t make myself believe that is not the aim of

KSACS especially in this age of privatization.

But I can say that the current labeling is just as tattooing them with the title

of HIV/AIDS.

And no body except KSACS force PLHAs to work in the society so explicitly

disclosing their status. But most of them do it for the incentive, from which

they find a livelihood; but ignore about the period after the project or

assignment tenure where their livelihood is not a commitment of the SACS or the

State.

There are reports from various places where rental building were not provided to

PLHA networks for office functioning and opening of DLN office opposed, all just

when public knew that it is some thing related to people infected with HIV.

Also the establishment of a care center (private sector) a rural area of south

Kerala was opposed by the people last year. It is functioning in the name of

Cancer and other palliative care now.

Any body think Kerala is that developed against stigma even now, when PLHAS are

denied specialized treatments and fixed surgeries are cancelled by Doctors in

Medical Colleges immediately after status disclosure. This was reported at

Trissur MCH last month - for a male PLHA project staff with an ENT problem.

I think it will not be a confrontation but hypothetical if PLHAs ask why we

disclose, as when they disclose status both for their and medical professional’s

safety, treatment mode changes from surgery to capsules or just termination.

Prasanthkumar Nellickal

e-mail: om_saivam@...