Re: Ethical questions regarding screening in villages

[Guest guest]

Dear Madhu, Your effort to understand the HIV situation is noteworthy. We all

agreee with you that screening for HIV in villages is not easy. But we are also

keen to hear from you on ethical issues of screening for HIV in Indian villages.

What are the ethical issues of screening for HIV in village settings, how you

identify and deal with those issues. It appears that we need to have a much more

detailed discussion on this issue. Please share your experience with the forum

subscribers. Thank . [Moderator]

_____________________________

Dear Forum Members,

There are some ehical issues raised by forum members regarding screening in

villages.

Screening for HIV in villages is not easy. There are many practical problems

attached to it. The HIV epidemic has slowly and steadily spread into villages

and the numbers are on the rise in the villages. The second interesting point is

that it has spread to the general population in addition to high risk groups.

The two important reasons why the disease is spreading among villagers are

poverty and illiteracy. Let me tell you about a hamlet called LK Tanda ,situated

near Nandyal in AP. It is a tribal hamlet with a population of 1500. It boasts

of one school and about 4 TV sets. Almost 56 years after Independence there are

no roads and there is no health care center in this village.

There are thousands of such " villages " in India. So far about 12 have died of

" pedda rogam " (AIDS) in the last 2 years. So we did a survery with an

organization called HOPE. We interviewed about 100 people in the village. Of the

100 people, only 40 know what HIV disease is. Of these 40 , only 10 know that

the disease could be prevented by condoms. In most the villages AIDS is

synonymous with TB. We carried out an awareness program, the attendance of which

soon started to dwindle as we started telling them about HIV.

We changed our strategy next time. We conducted family welfare programs. Our

team consisted of a paediactrician, OBGYN, and a pretest counsellor trained by

AP state. Again the organization " HOPE " came to our rescue. They provided us

with a jeep, 4 social workers. We conducted mother-child check ups and slowly

gained the villagers' confidence.

Then we carried out our screening program with consent for testing. The

Secretary for HIV prevention program in AP is very particular about this.There

was no other choice for us since we were using pretest counsellor provided by

the State. The Rotary club of Nandyal gave us money to buy kits to test for HIV

virus.

We screened 200 villagers over a 2 month period. Of the 200 screened 4 were

positive for HIV virus and were referred to the nearest Govt General Hospital.

Our post test counselling was far from satisfactory.

Our Govt and NGOs should turn their focus on villages and spread the message

about prevention. 75% of India's population lives in the villages. We are in

for a disaster if we are not aggresive now. We have thousands of LK Tandas in

our country.

Madhukar

E-mail: <madhukurnool@...>

[Guest guest]

Dear Forum members,

This is yet another accurate but indicative report about process and the

sensitisation that is so necessary when implementing a protection initiative, be

it in a village or a town.

Of course information is necessary but who delivers the messages is even more

important and also how confidential the messengers appear. Teams in a Jeep seems

a bit of a highlighted performance.

I note of course that the Post test counselling was " far from satisfactory " .

Isn't it everywhere in India? Post test counselling is supposed to offer hope

and a care and support and encouragement strategy with a range of good news

options rather than the present post test counselling that can be summarised as

" this is how you will feel and these are the steps you will go through and there

is nothing we can do to provide much for you and you will eventually die and I

wish you well "

Now I want those who provide post test counselling to positive people to expand

on this analysis because it is a summary of the counselling experience of many

who have shared their experience with me. I hope that right now it can be a much

more improved presentation.

If screening is to weed out those infected to protect those who are not then it

has ethical implications. What happens when the next positive vector comes back

to the village. What about the supports in the community for those who are

unfortunate to be tested positive. How thankful are they going to be that they

were screened, either with or without their consent. What about their children

and their schooling. The track record for schools is abysmal even for those kids

who are not positive but come from a family with one or both parents that are.

Just examine educated and informed Kerala to get the latest on this by product

of HIV/AIDS positive testing.

There is an awful lot of damage control to do in the cities and it will be even

more so for the villages where privacy is just completely unknown.

Communities need to be very well prepared before anyone tests positive as a

general health education message and when they are comfortable with the

realities that HIV/AIDS is not infectious and just transmissable by a very

limited range of behaviours, the learning skills will be as easily absorbed as

learning how to drive the auto rickshaw or pump the village well.

Only then should screening be carried out and only when there is a supportive

community already well briefed and a health centre whose staff is also debriefed

on universal precautions and the fact that unless they intend to have sex with

their patients or be careless in their injecting practices, they have absolutely

nothing to fear. AIDS does not contaminate it just transmits.

Well that's my contribution to this ethics debate and I hope others will do

likewise.

Geoffrey

E-mail: <gheaviside@...>

[Guest guest]

Dear Dr. madhukar,

We all agree that basic health care facilities are lacking in many villages and

there is a sense of urgency to deal with the HIV/ AIDS situation. And you have

rightly identified that lack of awareness and poverty accelerate spread of the

disease. But there are certain things if not dealt with properly can result in

the very things that we want to avoid. In this case, when people were so

resistant to even listen to HIV, one can imagine the level of stigma that

already exists. And if one does not work on it, it will be disastrous not only

for people who test positive, but also for long- term prevention activities.

In fact dealing with people's awareness about HIV is the very first thing to do

and this in itself is a long process. Simultaneously providing information about

where testing and counselling services are available should encourage people to

seek voluntary testing. This perhaps would be sustainable, long- term

and an ethical strategy to deal with HIV prevention and this is something what

national and international agencies also reccommend.

Akhila

Akhila Panchamukhi

E-mail: <akhila_punch@...>

[Guest guest]

(Moderator note follows the meesage)

Dear All

I agree with Akhila and Geoff about this issue. (Ethical questions regarding

screening in villages) It is true about HIV spreading to villages and the need

for measures to control and prevent.

I would support voluntary counselling and testing rather than screening (if i

have understood it correctly).

Especially with shortage of counselling (even in cities and big hospitals like

CMC, Vellore), screening could open up a whole new set of problems in the face

of stigma and discrimination.

Villages in India are small and open communities where one cannot hide much.

When stigma is difficult to handle in cities, how equipped is this village to

cope with discrimination of people if they are tested positive?

Ruth

E-mail: <r_katts@...>

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This is an important issue and it appears that there is also sufficient interest

in this issue to continue the discussion for few more days. The Moderator would

like to invite contributions from the readers on the following issues.

1) Can we identify and list all the key ethical issues in screening for HIV in

Indian villages?

2) Are they different from universal ethical issues/ issues of screening in

Urban settings ?

3) Are you aware of any policy guidelines on HIB screening in rural settings

from NACO, ICMR or any other such agencies?

4) If there is no such guidelines, what we can do develop such a guideline?

5) Experiences in developing capacity to analyse the ethical implications of

screening for HIV in rural settings.

Thanks

Joe

[Moderator]