Transcript of DG, NACO: Ms. Sujatha Rao’s speech at the Asia Society, New York

[Guest guest]

Dear Forum,

The following is the transcript of DG NACO, Ms. Sujatha Rao's speech

at the Asia Society. The Next Wave: New Strategies and Responses to

HIV/AIDS in India, China, Russia 5/30/2006. Asia Society, New York,

N.Y. This event, sponsored by the Asia Society, highlights India,

China and Russia's unique corporate, government and non-governmental

organization efforts to stem the spread of HIV, share lessons

learned across some of the world's longest borders, and recommend

strategies and possible solutions to decision makers and

stakeholders. The archived web cast and the transcripts are

available on the following url. [Moderator]

http://www.kaisernetwork.org/health_cast/hcast_index.cfm?

display=detail & hc=1750

Thank you, ambassador. Ladies and Gentlemen,

I am extremely honored to be here this morning, to be able to share

with you some of my experience with what work we are doing on

HIV/AIDS in India, which is a concern globally, largely because

after South Africa, we have the largest number of people infected

with HIV/AIDS. In terms of proportion to population, 99-percent of

India's population is still uninfected. We have 0.9-percent of the

people infected with this terrible infection.

India's response has been very comprehensive and one needs to study

in from a historical perspective, in terms of how the first

infection was detected in 1986 and how India has been responding to

the infection. Phase I was largely from 1986 to 1999. It took us

almost a decade to really understand what HIV was about. We went

through the typical phase of denial. We did not understand its

relevance, we did not understand its importance, and we did not

understand its epidemiology.

During the first phase, '93 to '99, we spend much of our time and

resourced trying to look at access to safe blood. At that time, data

showed that 9-percent of the infection transmission was through

infected blood. We had to set our house in order and show that we

provided safe blood; so much of our attention went into modernizing

blood banks and trying to see that the access to safe and

uncontaminated blood was ensured.

We brought the infection down to about 1.5-percent; that's the

latest data, which is a pretty good record. We also had spent a lot

of time on trying to raise awareness, and that brought us to a lot

of challenges. India is a very traditional society, particularly

when it comes to talking about sex. It's the land of Kama Sutra, so

it's not that we don't know about sex. So it's foolish to say that

we don't know all about sex.

But the point is talking about it; these are just simply dos and

don'ts that are conventionally put on board on how children behave

in the families, how the families are structured around these

issues, what you say and what you don't say in schools. Even now,

when we go to schools and some of the places and tell them, " You

must tell about sex and sexual education. " The parents react by

saying, " Don't tell our children all about those dirty things. "

So this is the kind of response that we still get, but it's come a

long way, certainly it has come a long way. Those were the days when

we were battling with trying to understand how to raise awareness on

the infection and the way it was spreading.

In 1999, we went into phase II. In the first phase, we had

experimented and carried out, very successfully, some pilot projects

and the lessons learned were that infection was really concentrated

among the high-risk groups, namely commercial sex workers.

We found a very concerted policy plan, and this experiment was

carried out in Calcutta where a very high, 6,000 to 8,000 sex

workers lived in the brothel, one of the largest brothels after

Bombay. There the infection rates really came down because there was

universal acceptance of use of condoms. STD rates came down and

infection rates were contained.

As contrasted to Bombay, which again had a huge brothel in Bombay

itself, I think of over 80,000 sex workers. There almost 55-percent

of the commercial sex workers were infected. Anecdotally, now a

large number of them have died. They couldn't get access to this

information and condom use was very low. Each sex worker tended to

have anywhere between 5 and 10 partners a day, so that's how the

infection was spreading in the country.

We said, " This needs to be looked at and this is an area where we

really need to focus our energies. "

Phase II really got into a really comprehensive strategy to work

closely with these commercial sex workers, injectable drug users,

particularly in the Northeastern part of the country Manipur,

bordering the Myanmar and Burma, where a lot of drugs get imported

into the country. You'd find in the tiny state of Manipur, I'm told,

that at least 40,000 youngsters in the age group of 18 to 24

infected with HIV, largely because of injectable drug use. So it's a

huge social program, therefore IDU also became one of our important

areas of concern.

The third, which has recently come into our vocabulary, is men

having sex with men. I must confess that this was not really seen as

such a big problem until a mapping exercise was taken up of all the

commercial groups in 2002/2003, and we found that men having sex

with men is a very huge number of people in India. It is so

intertwined with the cultural practices that it's a very different

approach all together, so we really need to be addressing strategies

on how to access them with information.

So we focused a lot in this phase II on these three high-risk

groups, particularly the commercial sex workers. The coverage is

pretty good; almost 60-percent of them we've been able to access.

Condom use is almost 50-percent among them.

Infection rates of STDs have certainly come down. Now that we have a

mapping exercise, it's going to be possible to really to do a

saturation policy. A saturation policy is what we're going to be

launching.

Right now, we have over 1,300 NGOs working with these groups,

largely commercial sex workers in IDU. As I said, MSM is gaining

importance. We're trying to recognize this lifestyle, and we're

trying to develop capacity among the NGOs on how to address them and

how to access information. When we say information, it's not just

merely going and telling them about the condom, but telling them

about the infection, getting them access to services, getting them

access to services for treatment and condoms.

Also, in terms of getting access to getting their status tested

through VCTC, that's Integrated Counseling and Testing Centers. But

I must say that awareness among all these high-risk groups,

according to our surveys, is quite impressive at over 72-percent,

but behavior change is slow in coming. That's something that we need

to be working on.

As of today, the phase II has come to a closure where the officials

are trying to take stock of what we've achieved, what has been our

response, what do we do now, where do we stand? In October, we're

launching a phase III part of the project. Our stock-taking has

shown that we've come a long way. The epidemic has matured and so

has our response.

Today there are 5.2 million people infected according to the latest

survey, versus 5.1 million last year. If you look at the trend, we

have about 750 sentinel sites. I'm told that is the largest in the

world. At these sentinel sites we collect about 400 samples from

each that are anonymous and unlinked. These are then tested at a

national reference laboratory, so the quality is absolutely,

undoubtedly good. These sentinel sites have shown two or three

disturbing trends.

While the good news is that it hasn't really exponentially grown as

expected, I have a caveat that I'll come to later on that, it has

also shown a disturbing trend of feminization of the epidemic. We

have almost 38-percent of women infected, which is much, much more

than what it was a few years ago. It has gone into the rural areas.

About 57-percent of the infection is in the rural areas.

Previously, we had thought that HIV was a fairly urban phenomenon,

but now it is getting into the rural areas, the rural households.

This means it is really the rich populations, the migrant workers

and the truck drivers, who tend to come to chronic opportunities in

the cities and take back the infection to the wives.

If the epidemic is a little contained, it's possible that it's

because the wives are not, in turn, having several sexual

relationships; it's stopping at the home. But nevertheless, it's

creating a huge social problem in the highly infected areas of the

country of sub-epidemics within this epidemic.

In the highly infected areas, I hear very disturbing stories about

women and how the discrimination and stigma hurts them much, much

more. They are far more vulnerable than an HIV-infected man.

Families would sell their assets, their land, their goats or sheep,

whatever they had to provide medical treatment, for example, to the

man. But when it is his wife who is infected, or she is widowed, she

is often thrown out of the house or left without any security. I

hear, this is in pockets, stories about she has been forced to

prostitution just for her children and herself to subsist.

This has now provoked us to come up with a very strong law, which is

going to give extensive rights to children infected with HIV and the

women, and this draft law is almost ready. We are going to be

placing it on the table of the House in the monthly session of the

Parliament. I think that is going to be our major focus now to fight

stigma and discrimination and protect women and children. This is

the social out-fall of this epidemic, which is not very easily

understood or spoken of, but the feminization of the infection that

is causing me great concern and is something that we're certainly

going to be focusing on. The second is the young, 15- to 29-year-

olds, almost 35-percent of them belong to this age group.

In several pockets, sexual permissiveness has come again. Taboos and

inhibitions, as a whole, young people are getting more vulnerable to

this infection. We need to reach out to them quickly. We have a

strong school education program. We have a strong program that

reaches out to them in the universities, but it is the workplace and

it's those who are not attending a formal institution structure;

that's where our challenge lies. Among the young, the 15- to 29-year-

olds, HIV/AIDS is probably one of the highest causes of death. It's

the third of the fourth cause of death among this band of 15- to 29-

year-olds after accidents and other causes.

So what has been our strategy? India, if you really look globally,

India's strategy has really been one of the most comprehensive one.

I believe strongly that the strategy is sound; it is based on

evidence, epidemiology, and the way the epidemic is unfolding. It is

based on the reality that we see in India. The strategy really

consists of an uncompromising adherence to the policy of prevention.

We believe that preventing this disease is going to be the most

effective component, but certainly it cannot be that you only do

prevention. We are looking at the continuum of care, the care and

support where you provide treatment for opportunistic infections. We

provide treatment and access to other services and, finally,

treatment itself that is affordable. In the AIDS case, we provide

ART.

It is in this context that I would just like to run you through. The

prevention strategy is not only working among the high-risk groups,

it is raising of general awareness of people on HIV infection,

ensuring blood safety and ensuring access to STD services. The

prevention policy itself is whole package of basic healthcare and

basic services related to HIV. Also, those who are infected by TB

get access to treatment. As you know, we find that 50 to 60-percent

of our HIV-infected persons are succumbing to TB. We did a study and

we found that among them, they came to us so late that even after

being treated on DOTS, 58-percent of them died. So this whole co-

infection between TB and HIV is something that's getting a lot of

attention. We have about 11,000 microscoping centers where DOTS is

provided, and that's where we are now trying to train the lab

technicians to also do HIV rapid test and really and fully expand

access to rapid testing of the status of people who are infected

with HIV.

The final component, which is very critical in the prevention

strategy, was started two or three years ago and is gaining rapid

momentum and that is what we call ICTC, Integrated Counseling and

Testing Centers. This is where we have a trained counselor and a

trained lab technician. It is in these centers where we have done a

lot of advocacy. We are doing a lot of awareness and asking people

to voluntarily come forward and get themselves tested.

I'm not so sure about whether testing should be made mandatory or

not. The policy currently in India is that it has to be voluntarily.

The Civil Society is not willing to accept the concept of mandatory

testing. There are two states, one of them from where I come, and

the epidemic is the highest in my state, where the Chief Minister

has been making statements that he would like mandatory testing

before marriage.

He is responding to a social crisis in that state where young women

have gotten married to HIV-positive men and the men have died. They

have become widows and they don't know where to go. It's made a lot

of people say, " This man has cheated on us. " There are instances

where the man knew that he was HIV-positive and yet go married.

In response to this kind of crisis, there is the stock of mandatory

testing, but I'm so sure whether that would be a very efficacious

way of going about this problem, largely for two reasons. One is

that just before you are getting married you may make it mandatory.

First of all, because of the Hindu marriages, we don't have the

concept of registration. How many of them would really come in for

registration is one issue.

The second is that the infected person could be going through a

window period and may not get detected. So what is the whole point

of making this a mandated requirement? The third is even if it were,

the Civil Society is very concerned that even if you did have

mandatory testing and it is found that one of them is positive, the

blame is likely to come on the woman and the marriage or the

engagement would be broken off saying, " She has HIV. " So the

confidentiality of it all gets exposed and the woman is then

condemned forever as HIV positive. She can go to counseling or not,

but nobody will believe her.

So these are the kinds of apprehensions that go into this who

concept of making it mandatory. Therefore, we are vigorously

following this policy of expanding access very quickly, as fast as

we can, to ensure that people walk in and get themselves tested. The

response has been fantastic in the six states that we have set out

this policy in the last two years, more particularly in the last few

months; we've set up over 2,700 centers in these six states. We ran

a campaign for the ICTC in the last 15 months and we found a 40-

percent increase in people coming forward to take the test. That is

strongly indicative that with a strong demand generating policy in

place through the ICTC campaigns and by putting the supply position

in place, there will be people who want to come forward and get

themselves tested. It is very useful because we see the HIV-

positivity rate in these ICTCs to be 7, 10 or 12-percent. So this is

helping us to identify, counsel and also reach out to the HIV-

infected in time.

The care and support is the second segment of the whole continuum of

care. Here we have largely NGOs who run hospices, if I may put it

that way. Largely because men and women, particularly the poor are

infected. Either they're too poor to spend money and get themselves

treated, or they are being thrown out of the house, whatever the

case may be. But it is these people that are provided with treatment

in the hospices by the NGOs. They give them food, given them love,

give them care and it's very, very popular. Right now, we have 85 of

them. In this case, we are trying to link them up to the [inaudible]

centers with medical treatment of much better quality than the NGOs

have been able to provide and expand to 500 or so within the next

year or two. This is found to be very popular because people are

able to go there whenever they fall sick, get better and get back to

work, then they come back again if they fall ill and are taken care

of.

There are two others aspects that are important to the treatment.

The next part is the third part of the strategy's treatment. Two

years ago we started when we announced the public policy that we

would provide ART to our HIV patients; that was sometime in May 2004

and we launched the first AIDS centers. Today we have 52 centers.

Almost 30,000 people are getting free treatment. Another 10,000 to

20,000 are getting from the private sector on their own, largely

because they probably don't want to come to government centers for

HIV care, mainly because of stigma and fear of recognition and

probably they can afford to buy their own drugs.

Our estimate is that about 50,000 people in India are accessing

antiretroviral treatment. At present, right now, we have done the

training, we have the equipment, we've purchased the drugs, in a

month's time we should be expanding and opening another 46 centers,

taking the total number to 100 centers. We should be able to provide

feasible access to ART to 100,000 people.

The challenge is in identifying these people and ensuring that they

know their risk status, and that they're able to take advantage of

the availability of the service and come forward. I am quite sure

that that's not a big problem because, informally, I am told already

that almost 65,000 people have registered in the centers for

treatment. I am sure that I will be able to reach my target of

100,000 which, under the Global Fund Project, was put as end of 2007

or 2008. I think in a couple of months we should be able to reach

the target. This shows a huge demand for ART treatment and brings

alongside testing and counseling facilities. As people get to know

their risk status, they are coming forward to the government centers

and taking care and treatment from us.

What is really of concern, again, is that recently, in the last

couple of months, we've got the Indian Association of Pediatrics to

come up with a treatment protocol for children. We only have 1,300

children on treatment. Epidemiologically, the estimations show that

we should be having at least 30,000 to 40,000 of them. But we have

only 1,300, so that's a huge gap and we are aware of the gap. We now

have the treatment protocols done. In June, we are going to be

talking to the pharmaceutical industry and trying to get them to

manufacture the drugs and the medicine in children's dosages. Once

that's done, about 10,000 children will able to get access. The

Clinton Foundation has generously come forward to help us procure

these drugs. They are cheap by your standards, but by our standards

they are quite expensive for pediatric drugs.

I know in the US it is nothing much, but in terms of the Indian

Rupee, it's a lot. Therefore, I want to make mention of the Clinton

Foundation's generous offer. We are very grateful to them. The

Global Fund is also another source, but this was so ready that we

got plans done and the next day they said, " We are willing to help

you. " So I should be able to roll this out. Once the response picks

up, we should be ready for 30,000 because now the protocols are

done. We are also developing about 7 to 10 premier institutions for

allied health and developing the capacity among pediatricians and

the other staff. You need the critical equipment for the

backstopping of this whole activity.

Finally, the mother-to-child transmission should, of course, come

under the prevention, but since it is so involved with drugs, I tend

to keep it under treatment. That's another area of great focus where

we need to do a lot more. Mother-to-child transmission; here again,

we've changed our protocols and the treatment regimen. We were on a

particular treatment which is very, very, very inexpensive, but now

we have taken much more of the combination drug regimen. So that

[inaudible] again a whole capacity building in terms of training, in

terms of logistics, in terms of ensuring drug adherence, and in

terms of reaching out to the mothers.

Finally, what is of great inspiration to me, I would say while in

this program, is that there is a huge network of the PLHAs that

we've been able to form. Increasingly and rapidly, we are able to

get the people living with AIDS to work in the program with us. They

work with us as outreach workers and we want to formalize their

involvement right from top to bottom in all levels of our work. I

feel that they bring in a lot of compassion, a lot of feeling, a

human face to the whole program, and inspire their other colleagues

along also.

To the Civil Society and the GPA strategies, I think we have a huge

number of partners with whom we are working. Finally, the challenge

will be in trying to come up with a comprehensive that will keep a

fine balance between prevention, support, and treatment because all

three are critical and we just simply cannot give up any one of

those components. So that is the challenge. Thank you very much for

this opportunity. I am grateful to you for inviting me here.

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