NACP III: A proposal for a public-private partnership to monitor HIV/AIDS

[Guest guest]

Dear Dr. Quraishi,

Thanks you very much for your deep commitment to stopping the spread

of HIV/AIDS in India.

I would like to propose a public-private partnership on monitoring HIV/AIDS in

India. The proposal is attached below. I believe it will create a system that

will be beneficial beyond just HIV/AIDS. It will help improve public private

cooperation in health care and development in general.

" Quantifying whether India is making progress on containing HIV/AIDS:

A public private partnership "

HIV/AIDS is going to be a very hard to eradicate. Stigma, taboos,

sexual transmission, and a very long asymptomatic period make it a

unique pandemic. These factors keep risky behavior underground and

prevent open discussion and intervention, especially in developing

countries. Success will depend on the formation of many NGOs and CBOs

to carry out all aspects of prevention and treatment (as outlined

below) in a professional and transparent way.

How do we monitor their success and the success of the national program?

There is continued discussion of whether India is making progress in

its attempts to control the spread of HIV/AIDS and how to quantify

efforts. Such discussion is very important but we need to develop

quantitative tools. To this end there is no alternative to

accumulating carefully collected and independently verified data.

Taking a long term view it is essential that we continuously assess

whether progress is being made by investigating indicators beyond just estimates

of the incidence and prevalence figures of HIV positive people.

I would like to propose a system of non-government sponsored

surveillance which, to my knowledge, never been put into place before.

However, with modern low overhead collaboration via internet this can

be done if there are enough NGOs willing to take up the challenge. I

am confident that India, with its large number of excellent NGOs that

are IT savvy, could create the first such system.

While on first sight such a system may lead to sensitivities and reluctance to

participate especially if an NGO is funded by government sources. However, I

believe that NACO and the government should encourage it as it will provide a

basis for the NGOs and CBOs to learn and engage in monitoring the situation and

become responsible partners. The feasibility will depend on whether enough NGOs

and CBOs covering most of the demographic regions are willing to participate.

I would, therefore, like to propose a yearly tally of the following

indicators. These have been divided into five categories, each of

which I believe is important and necessary.

Education and awareness

• What fraction of the population has received education on sex,

sexuality and sexually transmitted diseases?

• What fraction of the population understands the difference between

safe sex and risky sex?

• What fraction of the population is informed of modern methods of

reproductive health and hygiene and on prevention of sexually

transmitted diseases?

• What fraction of the population feels empowered (financially,

socially and from within the family) to use these methods?

• What fraction of the population believes that it is important to

remove stigma and taboos associated with HIV/AIDS – that it cannot be

spread by casual contact and people living with HIV/AIDS can have

productive meaningful lives.

• Poverty is a major driver of risky behavior. What fraction of NGOs

and CBOs working on development are also engaged in HIV/AIDS

prevention and vice versa.

Medical Infrastructure

• How many people have access to primary health care?

• How many people seek help for STIs from qualified practitioners?

• What are the incidence rates for various STIs other than HIV/AIDS

• How safe is the blood supply?

• How safe are invasive medical practices?

Harm reduction advocacy

• How many people believe that making sex work safer is more effective than

banning prostitution?

• How many peer groups are there for the LGBT populations.

• How many people feel that there is recognition, by the public and

policy makers, that different sexual orientations are part of the

diversity of human condition and minorities distinguished by their

sexual orientation and identity should not be marginalized?

• Do there exist adequate health care facilities and IEC trainers for

the most vulnerable – sex workers, IV drug users, migrant workers, and MSM.

• To what extent is there easy and free access to uninterrupted supply of

condoms. To what extent is there the commitment to achieving 100% use of condoms

for risky sex, i.e., there has to be free and easy availability and no room for

excuses for interruptions.

• How well are needle exchange programs for IV drug users working?

• How many detoxification and rehabilitation centers exist for drug

abusers and what are their success rates?

• Do the marginalized have protection against violence and criminal

exploitation from the law and law enforcement agencies?

HIV Testing and Counseling

• How many people suspecting HIV infection have free, easy and

anonymous access to testing and counseling?

• Do adequate referral services for medical care and counseling for

behavior change exit for those testing positive?

Care and Treatment

• Is there easy access to free treatment for opportunistic infections?

• Is there easy access to free ARV treatment for all, and especially

for all those having progressed to AIDS?

• How many support groups for HIV positive people exist?

DEMOGRAPHIC DISTRIBUTION:

Since India is a vast country with large

diversities of language, economic and social status, health and

education infrastructure, and behaviors it is important to collect

information based on dividing the country into meaningful demographic

units. Based on all the discussion in e-forum and official reports, my

recommendation is that the starting point for creating geographical units for

the collection of indicators should be districts (the list of 602 districts can

be found at http://districts.nic.in/) and urban conglomerates/cities with

population over 1 million (the list of 35 according to the 2001 census are

available at http://www.censusindia.net/results/eci_2.html). Some of the major

cities could be further divided into geographic units of 1-2 million

people.

What any organization willing to undertake such a study in their

environment would need to do to contribute is assemble independent

data. It would require filling a table that lists their region of

knowledge, their populations, and fractions and absolute numbers

representing answers to as many of the above questions as they have an

understanding of.

If there are organizations willing to undertake this study in a

scholarly fashion please let me know.

I would be very happy to create a web tool that would allow the participating

groups to enter the data that will then be collated and made available

automatically.

The tool will allow more than one group from any region to input data and the

displayed results could be selected by specifying a particular group providing

input or an average over all groups from the same region.

If nothing else, this information will give us a ground level view of the

pandemic and intervention in various parts of the country. It is obvious that

initially a lot of information will be qualitative and guesswork. However, over

time it will become more quantitative, and that change in the work of NGOs and

CBOs will itself be a measure of progress.

This system would not replace the government sponsored and approved

" official " analysis but would provide an alternate view. It would

facilitate transparency, validation and dialogue and at the same time

spread the knowledge of how such statistical analyses and data

collection are done to the NGO community. The same tool can then be

used for other social issues as well. It is also hoped that as the

systems (both government and non-government) start to work, the two

analyses would converge.

Sincerely

Rajan Gupta

rajan@...

http://t8web.lanl.gov/people/rajan/AIDS-india/