I was recently asked the following five questions following India's first National Parliamentarians Forum on HIV/AIDS held on 25-26 July 2003 in New Delhi. At this meeting roughly one thousand members from the state and central governments met to plan a cohesive and effective response to the spread of this deadly scourge. The convention was addressed by the Prime Minister, many other prominent ministers, and Dr. Peter Piot, head of UNAIDS. Here are my thoughts on the questions asked.
While sex workers, truckers, MSM have been the buzz words, four factors have been the major contributors to the spread of HIV/AIDS in India. They are (i) the lack of a health care and education system that reaches and serves all people; (ii) marginalized and poor populations, (iii) risky sexual behaviors, and (iv) IV drug use. To ameliorate these four problems, international organizations and outside nations can draw attention to the problem, suggest intervention strategies, and provide seed resources to help implement them. The local governments (central and states) have to create the infrastructure, enact enabling laws, and commit resources; the bureaucracy has to assume responsibility for implementation; the medical community has to turn it into another chronic, expensive, terminal but manageable disease; the education system has to teach a curriculum on reproductive health, sexuality, sex, sexually transmitted diseases, and drug addiction before children start experimenting with these; condoms have be available freely, widely and easily; and the society has to overcome its irrational fears and remove stigma, discrimination and exploitation.
I believe India has enough intelligent people to understand the devastation in Sub-Saharan Africa, the reasons for international attention and funding, and the impact of the growing numbers. So I believe that international attention has made the intelligentsia aware. The reason they have not responded is not because they have not been told, but because strategic thinking is missing, narrow self-interests dominate thinking and action, and those in power and with money believe they will escape the devastation. Health is not a focus of the government, health ministries languish in political backwaters, health ministers without any background in health come and go, and these failings continue. I doubt if international agencies can "fix" these problems of India.
As regards international funding, almost all funding for HIV/AIDS intervention in India is from outside. I believe that unless India commits its own resources and takes ownership for solving the problem, they will not be able to stem the tide. Money, by any means, has become central to most [urban] Indians, especially to the politicians, therefore only by committing their own resources will India demonstrate it is ready to act. For those who claim there is no money, one must not forget that the government was able to INCREASE the defence budget by almost INR 120 billion (nine times the central government's budget on health) after the Kargil fiasco in 1999! So, clearly, health continues to NOT be a national priority.
Given the magnitude of the world-wide spread, how different countries are at different stages of the pandemic and have different levels of ability and resources to respond, it is difficult to expect international agencies to solve India's problem. India is of great historical, cultural, geographical, economic and strategic value to the world but the reality is it has to solve its own problems, especially that of HIV/AIDS. So I would put 90% of the responsibility on the shoulders of the Indian elite for choosing not to respond and 10% on international agencies for not being more involved.
"Education" and "general population" both need to be clarified. If education denotes a 30 minute lecture in which a teacher presents information on what HIV/AIDS is, what it does to the infected, how it is transmitted, the statistics of spread, and why not to have risky sex, then in my opinion about 20-30% of the population of India has been "educated". Most of this population is urban. If education means the ability and skills to abstain (or seek gratification in non-penetrative sex) when every cell in the body is focused on sexual gratification through risky sex, or to have the know how and empowerment to use a condom if one is going to have sex outside the one-to-one partner rule, especially when one is under the influence of alcohol and/or drugs, then at most one million people have been educated. (Many times more are relatively "safe" as they are unlikely to have risky sex but even these can be infected by the careless actions of others and exploitation.) Except for some of the very elite schools, most schools do not teach reproductive health or sexuality in any comprehensive way, so even if a lecture on HIV/AIDS is presented, people have little background, training or tools to translate the information into behavior.
In my 4.5 years experience of working with people ranging from elite school and college students to the most conservative and tradition bound villagers, I have not encountered any barriers to education by the public themselves other than, in a few cases, an initial lack of interest. (The barriers I am familiar with are often created by the meeting organizers, political opportunists, religious zealots on the sidelines, or by inadequately informed do-gooders.) The caveat is that you have to first develop trust with the audience. They have to perceive and feel that what you are telling them is correct, that you have come to help them and genuinely care for them, and the message should be delivered without judgment. To be effective, education should be supplemented with counseling. Once a person begins to think about the issues after being presented with information, she/he should have recourse to a counselor (within the family or circle of friends or a professional) to tailor that information to their life and to be able to formulate and take steps that will lead to behavior change or reduce vulnerability. If the latter is the desired level of "education", then it is almost completely missing.
By holding of the Parliamentary Forum on the HIV/AIDS, India has taken the first steps and recognized it has a very difficult problem (social, economic, medical, and of national stability) that needs to be confronted with utmost urgency. The country's response so far was summed by Prime Minister A. B. Vajpayee who quoted a wise man as having said "The best time to plant a tree was 20 years ago. The next best time is now." These are indeed wise words. The problem is that the Prime Minister did not "plant the tree" even 20 years later but only talked about planting the tree. The same pattern of action-less talk was then adopted by Shri Manohar Joshi (Lok Sabha Speaker), Smt. Sushma Swaraj (Union Minister of Health and Family Welfare), and Ms. Sonia Gandhi (Leader of the opposition).
No new indigenous funds were allocated for health care or education. All politicians held out their hands to foreign organizations and nations, saying we are ready to act if you give us money. Shri Vajpayee said that "political parties in our country need to pay far greater attention to issues of health care than they do now." Politicians are survival artists with a nose for money, power and publicity. Unfortunately, so far in the fight against HIV/AIDS, most politicians and bureaucrats have appropriated money designated for intervention and the public forum for personal gain and promotion. The speakers did not address the issue of corruption or outline how they were going to change their own behavior. HIV/AIDS is not just a medical problem that a reasonable amount of money (few billion dollars for India) can solve. Its spread also represents a lack of social, medical and economic institutions. The biggest breakdown at the highest level of politics and bureaucracy is self-sacrifice, the concept of nation and society before self and party, and assuming responsibility for the welfare of the public. There was no evidence of a change of behavior in the speakers in this respect or of tangible personal commitment.
Even token but necessary actions were missing. No concession on making treatment a part of the National Policy. No progress on decriminalizing sodomy or prostitution. No statement on the status of development of a curriculum on health and life skills for schools, leave aside its implementation. All the discussion seemed to be on bureaucratic process.
The question "Do you anticipate dramatic decreases in the numbers of people being infected" is hard to quantify since even today surveillance of new infections is poor. My belief is that the actions of the government since 1986, when they first launched the National AIDS Control Program, may have reduced infections by a million people, i.e., there could have been 5.5 million infections if no money from any source, specifically targeted to HIV/AIDS intervention, had been spent. So, to first approximation, the pandemic is following its natural uninterrupted course and the political, bureaucratic, medical, educational and social machinery is still debating and designing road blocks rather than manning established road blocks.
The biggest barrier to be broken down is personal commitment and assuming ownership on part of the politicians, bureaucrats, medical doctors and nurses, and the well-to-do. If past history is an indicator, then the Parliamentary Forum is a necessary first step, but most likely everyone attending or speaking will believe they have done their share for the next year or two. When the numbers jump to 6 million, they will hold the next forum and at that time states which are showing unbelievably low prevalence rates (like Bihar, Jharkhand, Chhatisgarh, and Orissa which have essentially no credible surveillance) will start to appear on the radar screen. My prediction is that adequate social mobilization is unlikely to start before the 10 million HIV+ mark and the government will continue to beg for external funding rather than assume national responsibility. Meanwhile, there is neither a social barrier to limit the spread of HIV nor a barrier to its control if there is political and social will.
The pattern of spread of HIV/AIDS in India is a combination of what is happening in the Western countries and in Sub-Saharan Africa. I illustrate the dominant patterns with the following six examples.
In a broad sense, the spread amongst the poor is closer to Sub-Saharan Africa model and in the educated and well-to-do it is closer to what is happening in the black and Hispanic communities in the US. Unfortunately, the moralistic stance of India's ultra-conservative politicians, bureaucrats, and religious leaders attempts to lump all these causes into a single widespread belief that moral failure-perceived to be a result of corrupt Western influences-underlies the spread of disease. Unless the true dimension of how prevalent risky sex in all socio-economic strata is and has been prior to even HIV is recognized and accepted, India will not be able to mount an effective HIV/AIDS control.
The biggest shortage today to HIV/AIDS control is not money but caring, committed, knowledgeable people who are willing to work with the marginalized and the poor. One necessary step is to put money directly into organizations that work in a holistic way with the marginalized and the poor, and to develop peer groups. It will be a long time before government agencies are able to work effectively with marginalized and/or high risk populations due to a history of mistrust and the desire to maintain official propriety. Thus NGOs will have to do the bulk of intervention work, so it is important to train and monitor them and help graduate them from doing relief work and/or responding to crises to a holistic portfolio of sustainable development. The government should create laws that allow marginalized and poor communities to have the same human rights as the rest and to hold the law and order organizations responsible for guaranteeing these rights.
The determinants of whether India can control its HIV/AIDS pandemic will be whether there is a comprehensive curriculum on health and life skills that all children can access, the ability of women to negotiate sex safely (as wives, girl friends, or sex workers), whether sodomy and prostitution is decriminalized and corruption is brought under control, and whether children have homes in which they can grow safely with access to health care, education, and nutrition.