Interview with Dr. Ashok Rau, Freedom Foundation.

[Guest guest]

Dear Colleagues,

Recently, the moderator of AIDS INDIA e FORUM met with Dr. Rau in Bangalore. Dr.

Ashok. Rau, one of the most visible and compassionate- civil society faces of

India's campaign against HIV and AIDS. He is the Executive Trustee and CEO of

the Freedom Foundation (FF), an NGO with its head office at Bangalore working in

the field of substance abuse and HIV/AIDS in India and Nigeria, and in Botswana.

Dr. Rau is a highly resourceful professional of regional and international

repute with a vast experience of more than two decades. An experienced

psychotherapist, Dr. Rau established the Freedom Foundation in 1992 in

Bangalore.

The following is an excerpts of a free flowing long interview, touching on

various aspects of Civil society response to

HIV and AIDS in India.

Dr. Rau is a special guest on the AIDS– INDIA eFORUM.

AIeF: How would you describe your work in the area of HIV/AIDS?

The Freedom Foundation's vision has been to understand HIV/AIDS from

a development perspective, as a " Pandora's Box " …… which needs an

inclusive multi pronged approaches of addresses it. The foundation

started its intervention in the HIV/AIDS sector with a comprehensive

care and support strategy.

Today the foundation's strategy encompasses an entire spectrum of

services like care and support, prevention, PPTCT, PPTCT plus, legal

rights, advocacy, care and support for children, home based care,

self help groups, income generation, networks and alliances of

children, women, and men living and affected by HIV/AIDS,

Insurance/Health financing, TIs, ART, Diagnostics, etc. etc. to name

a few.

The foundation's touch stone is an evolving and inclusive need based

approach. What has helped is the constant learning curve process

allowing flexibility, change and replication. The foundations

comprehensive care and support model is a documented UNAIDS " best

practice " , some of the other initiatives are also considered as best

practices which have been replicated in India and other countries.

AIeF: What is the story of Freedom Foundation? What prompted you to

establish FF?

This is along story. I started Freedom Foundation more as a personal

calling and initiative. My father a very successful person, was also

an alcoholic who tried his best to seek help, But, he ultimately died

with a bottle in his hand in a hotel room in Germany were most of his

business interest were.

Way back in 1985/06 while I was finishing my training on substance

abuse and HIV/AIDS, a couple of my very close friends tested

positive. One of them a young girl who was very close to me. She and

her family had to go through so much of suffering. She soon died of

AIDS related illnesses. This was in the US and in the mid 80s stigma

and discrimination was huge in the US.

These two events had a major impact on me .On my return from US in

89, I found that substance abuse, if ever addressed was from a

straight jacketed medical perspective. But, in the context of

HIV/AIDS, I found that we were in an absolute state of denial and there was no

meaningful intervention on HIV/AIDS in the country

(Government, private or civil society).

As a matter of coincidence my brother in-law tested positive in 1992, who lived

with the infection for 14 long years, but he passed away in July last year.

In 1990 I sold my music system and my prized collection of Bob Dylan

tapes and along with my friend (late) Karl, started Freedom

Foundation, as a comprehensive bio psycho social 12step model for the

treatment and rehabilitation of people with a substance abuse problem

and offered help for families with therapeutic input on codependency.

We also used to talk about HIV/AIDS as part of awareness with our

clients and the community at large (this was a major challenge, as

ignorance, fear, stigma and discrimination was absolute in those

days) In 1992 we had our first client who had come in for a substance

abuse problem also testing positive for HIV (in those days we used to

get our testing for HIV done at the Kings institute in Chennai, one

of the couple of places were testing for HIV was available in the

country). We found that there was no place in the country that we

could refer our client for addressing HIV +ve related issues, be it

medical, psychological or social. We realized that we will soon be

dealing with many more clients from the substance abuse sector with a

dual problem (substance abuse & HIV/AIDS)

In 1993, having established Freedom Foundation as a registered

charitable public trust, I was fortunate to meet two young beautiful

ladies (who had the dubious distinction of being the first two

reported and identified HIV cases in the country) who were housed in

the remand home (rescued from the brothels of Mumbai) at Chennai and

in Bangalore. I spent many a wonderful evening with theses two lovely

ladies. I also had the pleasure of befriending a couple of others who

had tested positive, who later on became the founding members of a

network that is now called INP +. The net result was that they all

helped us develop our initial HIV/AIDS care and support strategy.

I must mention at this stage, in 1993 our intent of talking about

HIV/AIDS and setting up the care and support center resulted in a

couple of my collogues and me getting beaten up, arrested and

jailed " for disturbing the peace and questioning the morality of our

people " . (That's what the First Information Report FIR) of the police

said) This just strengthened our resolve. Or may be I was just being

stubborn!.

Society's general response continues to be judgmental, stigmatizing

and discriminatory. This till today is a major challenge in providing

services to marginalized communities or others affected by HIV/AIDS.

In 1994 we started the foundations first comprehensive care and

support center at Bangalore. The media credited this as the first

care and support center in the country. The units focus was care and

support, creating and promoting networks of people living with

HIV/AIDS and prevention.

Our belief till today is that care and support will mitigate

prevention. The strategy is to have an inclusive approach with an

emphasis that all interventions (be it care and support, TIs, other

prevention activities, newer technologies, awareness, treatment,

etc.) would have an equal focus, intensity and priority. This has

been the foundation experience. Much of this philosophy has

demonstrated in many ways through the foundations various

interventions.

It was a huge achievement for us since all this was with whatever

personal resources were available and from a lot of support from our

clients and well wishers.

The Freedom Foundation got its first small external grant only in

1998. Under the leadership of Mr. Prasada Rao the then Project

Director (PD) and special Secretary of National AIDS Control

Organization (NACO). NACO recognized the foundations care and support

center at Bangalore as an ideal facility. I am told that the

guidelines for NACOs low cost community based care and support scheme

was derived from Freedom Foundation first facility at Bangalore.

NACOs first low cost community care and support center grant was

given to Freedom Foundation with the suggestion this model was to be

replicated in other parts of the country.

Today having gone through various hurdles and set backs the

foundation has grown from its humble beginnings to be one of the

largest service delivery organizations in the substance abuse and

HIV/AIDS sector in the country operating a whole plethora of

interventions from more that 40 physical rural and urban sites in the

states of Karnataka, Tamilnadu, Andhra Pradesh, and Goa in India. In

2006 the foundation was contracted to replicate its strategies in

Nigeria, This year the foundation hopes to do the same in Botswana.

AIeF: What is the major impact of FF in India (On policy, on Program)

This is a difficult question to directly respond too. Modesty apart-

most of the Freedom Foundation core initiatives have been pioneering

innovative and demonstrative in nature, all interventions have an

inbuilt rights based perspective. Most of our work is on a community

need based level and not necessarily driven by donor agencies, the

few overseas and national donors we work with have continued to

support whatever strategy that the foundation has established.

A point to note would be that at the time of inception of most of our

activities donors had no funds year marked for such innovations our

activities. A case and point would be our care and support model,

established in the early part of 1993, care and support was not

considered a priority. In 2000 when we started our ART roll out

program, ART was not a viable option. In 2002 when we started our

PMTCT (PPTCT) initiative in the public and private sector, there were

no national schemes on PMTCT. A pilot initiative on Health

Financing/Insurance for people living with HIV/AIDS started in 2005.

Government of India/NACO is now seriously considering a national

insurance scheme for people living with HIV/AIDS. The example are

many on the various innovations that the communities that we reach

out to, the foundations program managers and their team members have

conceptualized and implemented.

Today the foundation through its activities in India on a

conservative minimum average, reaches out to more than 70 to 75, 000

children, women and men annually.

As per our records some of our programmes in the substance abuse and

HIV/AIDS sector in India have constantly till today attracted many

overseas clients from all over the world

The foundation has represented its self through its representatives

in various districts, state, national, and International committees,

expert groups, task force, forums etc. on policy and program over the

years. We would like to believe that all the above mentioned has had

some influence and impact in policy, program design and formulation

in India and else were.

AIeF: What are the major challenges of AIDS NGOs in India?

This again is a tricky one. Well, with a bit of candidness; I must

admit that the first major challenge is to learn to sit and talk to

each other as part of an ongoing sharing and learning process. It

constantly pains me to see how suspicious we are of each other. It is

said as a joke (a fact) that the only time NGOs from the same city,

region, state or country meet each other is at International

conferences! We must quickly learn to trust each other and

collectively work towards addressing our common collective goals.

Today though we are quick to criticize government of its various

vertical programs, we need to take a hard look at ourselves, I see

that we (barring a few exceptions) in the HIV.AIDS civil society

sector have been guilty of the same, we have not been able to

synergize and connect our programs and initiatives with each other as

part of the much needed continuum of services.

I would also agree that the government suffers from the same inertia.

I have over the years heard this never ending debate on how messed up

NACO or the various SACs are. There is also the on going posturing of

who needs whom. At times certain leaders both at the level of

government and Civil Society have felt that they can do without each

other. Here too there has been too much of mistrust and egos played

out. I think we need each other and Government and civil society

cannot work in isolation.

Today it is sad to note that we do not have a National coalition of

NGOs in the HIV/AIDS sector in the country. This is a challenge when

it comes down to a representative national voice of civil society in

the HIV/AIDS sector. A national coalition would help in various ways

of voicing concerns and articulating the needs of our communities

from the ground, advocacy, formulation of policy and programs,

developing meaningful partnerships with Govt. and International

agencies etc.

The biggest challenge is for civil society in the HIV/AIDS sector is

to deal with the various glitches and dysfunctional systems with the

administration and management of the various SACS and NACO. At the

state and national level. While in the resent past there is an

abundance of financial resources, but, there are perpetual delays of

fund disbursement. It takes an average of 3 to 6 months on some

count or other for fund disbursement. This has lead to unnecessary

mismanagement at the SACS and NGO level, grossly affecting the

program implementation.

I am sure that the various SACs have their own issues viz viz NGOs.

But, the challenge is how we come together on a common platform on a

level playing field. One should not get into a divide and rule

strategy or just keep pointing fingers at each other to justify our

individual, organizational or program dysfunctionality.

There is an increasing top to bottom directive approach with NGOs

from most SACS. The scope for true meaningful innovative partnerships

with government and civil society is almost non existent.

Unfortunately, most civil society organizations are in a drastic

survival mode.

Seeking the expertise of civil society at the state level seems to be

a thing of the past. Though a few leading NGOs have managed to

position themselves as the face of civil society, they have not

really been able to reach out and nurture the larger fabric of civil

society in building a more consensual and functional relationship

between the SACS and civil society at large in the HIV/AIDS sector.

Another challenge is that a few overseas International agencies

(many of who call themselves as NGOs with local entities) coming in

with a preconceived agenda, an all knowing attitude of expertise and

flush with resources has further complicated things. External

agencies need to understand that civil society is invariably the

first to respond on issues that affect our communities. There needs

to be a dialogue with civil society to understand local issues and

concerns and design programs by all donors, International agencies

and Governments. Civil Society needs to also understand that there is

a lot that International agencies and Governments can bring to the

table.

In fact, I see a strange kind of complex among NGOs, & CBOs; on the

ground. For the survival needs, I see many NGOs and CBOs have

compromised their own convictions and beliefs on what works best for

the communities that they work with, and to accept funds from some of

these International agencies.

While some of these International agencies are willing to honestly

appreciate the ground realities and expertise of the NGOs and CBOs,

there are many who operate on the same top to bottom directive mode.

The other challenge is the sustenance of the old guard of committed

and dedicated workers from management to grass root level. The

compensation packages and other program cost of the schemes and

programs at the SACS level are no match in comparison to the

compensation the packages offered by the various International

agencies.

Many NGOs and CBOs have lost valuable people. Civil Society is

reeling under this new crisis of lack of quality human resources. We

(Civil Society, Governments, International agencies, Private Sector)

have to sit together and set some standards to address this issue.

While, we as the civil society talk about the challenges in dealing

with highly opinionated & egocentric individuals and systems at the

level of government and other agencies, I see us as civil society in

many ways having the same characteristics.

Many of the well established and leading NGOs, CBOs, and other

agencies are just not doing enough to mentor the ever increasing

number of good credible smaller agencies in the Civil Society and

Private Sector. It constantly appears to be a process of " the

survival of the fittest " . An ever increasing self centered self

centric attitude.

I am hoping that through this interview- talking honestly about all

this will help us all collectively to focus on some key issues an act

on it. It is time we bury the hatchet and try and come together in

the hope of creating a more proactive response, to fight a disease

that does not wait for us to get our act together.

Today there are hundreds of recognized and un recognized good,

credible and committed NGOs & CBOs working in the field. Their

challenges are many. I have spoken about what are the most important

challenges and concerns that I have heard of at the level of the

larger fabric of Civil Society in the HIV/AIDS sector in India.

AIeF: Tell us about human resource training needs of FF and how this is being

taken care?

The Freedom Foundation as of today has about 330 full time paid

employees in India; this number is constantly increasing as we

continue to expand. There are two levels of training one external and

other is internal. Our emphasis is on our in-house mentoring process

wherein new recruits are mentored by our senior staff and

departmental heads with a clear focus on a on the ground practical

training process. There is also our exposure and exchange training

program with other sites in the country and overseas. Due to various

factors as mentioned earlier one of the Freedom Foundation concerns

is staff turn over. The last couple of years have been a challenge at

both, at the field level and the management level.

AIeF: What are your Comments on south - south collaboration, what is

the scope and challenges of south - south collaboration in HIV

response?

Although many capacity development activities are being undertaken by

the Ministry of Health & F.W. in India with the other developing

countries, it is difficult to categorize them under specific South-

South collaboration, except for a few activities. One can safely

assume that the collaboration and activities are quite useful in

developing the capacity of the providers in both recipient and

provider countries.

There are many common problems like HIV/AIDS in developing countries,

and there are many credible and promising practices being undertaken

in these countries. The best practices are not only to be documented

but also to be widely disseminated and emulated wherever feasible. It

has been observed that most collaborations are restricted to the

government agencies at the Ministry and departmental level.

It is ironical to note that even though the implementing agencies are

largely from the civil society sector, there is hardly any sustained

collaborations with the civil society. In fact the scope and

possibilities have not been included in any policy frame work on this

issue.

Governments and other international funding agencies are not doing

enough to facilitate the purpose of South-South collaboration. There

is a need for bilateral/ multilateral collaborative initiatives to be

brought under specific head entitled `South-South Collaboration'.

More exchange activities, emphasis on quality of care, dissemination

of information, sharing of best practices, capacity building of civil

society and consultants from developing countries need to be

undertaken for which both the Government and various international

agencies, donors and other agencies in the private sector must come

forward.

The set-up at the Ministry of Health & Family Welfare / NACO on this

count is rudimentary and needs adequate strengthening to keep track

of and promote South-South collaboration.

There have been a few one off civil society collaborating on training

and capacity building, but nothing on a sustained level.

This is not an exhaustive response to the question. More appropriate

information needs to be obtained from various players in NGO and

Public Sectors and other stakeholders.

AIeF: How do you see the experience of Indian AIDS agencies, being

shared with neighbouring Asian countries?

I think this is a real opportunity that has not been taped. For

example, The Freedom Foundation has been contracted by the Channari

Foundation and the Government of Nigeria to replicate its strategy

(as part of " Best Practice " ) in Nigeria. The foundation has started

with PMTCT and PMTCT plus. We hope to do the same in Botswana, very

soon.

The other example is the resent convergence of 5 leading

organizations (YRG Care (Chennai), Naz Foundation India (Delhi), Aids

Prevention Society (Guwahati), SOS Foundation (Nasik), and Freedom

Foundation (H.O. Bangalore) who have come together to form the

National Coalition on Health Initiatives (NCHI).

The idea of NCHI came into being as a need for a national civil

society coalition to act as an advocacy group on all health

initiatives in India and else where. NCHI also proposes to pool their

collective expertise to further harness the much need impact on the

epidemic in India by implementing programs that would have a large

scope and encompass a wider geographical area.

I think there are numerous organizations that have demonstrated best

practices in India and other developing countries in Asia and else

where. I am sure these kinds of effective partnerships would have a

dramatic impact on the epidemic in the region.

Dr. Rao could be reached at the following address:

Dr.Ashok Rau

Executive Trustee/CEO

Freedom Foundation-India, Nigeria, and Botswana

(Centers of Excellence- Substance Abuse & HIV/AIDS)

Head Office : 180, Hennur Cross, Hennur Main Road,

Bangalore - 560043, India

Phone (O) +91 80 25440134, 25449766, 2543061

Tele Fax (O) +91 80 25440134

e-mail: freedom@... cc to ashokrau@...