Various issues are discussed in the form of questions and answers. Many of these issues have, in fact, been repeatedly raised as questions to me. I would like to emphasize that the views and opinions presented here are solely my responsibility.
HIV, short for Human Immunodeficiency Virus, is a retrovirus that attacks and destroys a vital component of the human immune system: its host cells are the CD4 T-lymphocytes, a type of white blood cells. Once the immune system is effectively destroyed, all sorts of infections normally kept at bay (called opportunistic infections) take hold and kill the individual. This final stage, when the immune system is highly compromised, is called AIDS (Acquired Immune Deficiency Syndrome). HIV's only known host is the human, and it survives in the bodily fluids -- blood, semen, vaginal secretions, breast milk. It is, therefore, transmitted by sex with an infected person, from mother to child at birth or via breast milk, or by contact with infected blood. The latter can occur by transfusion of contaminated blood, use of contaminated needles or surgical instruments, or when sharing needles as by IV drug users. Thus, an inadequate/corrupt/uncaring medical-dental establishment poses a significant risk of infection to all the population irrespective of whether an individual has risky sexual behavior and/or IV drug usage or not. HIV is very fragile outside the human body and is easily destroyed by contact with air, water, soap, etc.. Nevertheless there is a tiny risk of infection through use of (i) infected razor blades when visiting barbers, (ii) infected needles when getting tattoo's, (iii) puncturing of skin with infected needles during ear, nose piercing.
HIV is a very fragile virus -- its fast spread in any society is, to a very large extent, facilitated only if there already exists a breakdown in the educational, social, and political infrastructures and not just the medical. Unfortunately, since all four play a role, stopping the spread will require "fixing" the relevant problems in each. Some of these issues are elaborated on later.
So far as we know, almost all people infected with HIV have progressed to AIDS if they are not being treated with anti-retroviral drugs. Certain groups of people, called long term non-progressors, offered a hope for cure and vaccine as their immune system was somehow resisting the advance to AIDS. Unfortunately, after 15-17 years, they too have started to suffer from diseases indicative of AIDS. So at present there is no evidence of remission or escape. We do not have a cure either -- the very costly treatments using anti-retroviral (ARV) drugs only keep the disease under control and it is not yet clear if, in time, even these will fail to protect. Worse still, these drugs are completely beyond the reach of over 99 percent of the Indian population. Even if the drugs were cheaply available, their prescription requires very careful monitoring of effectiveness and toxicity by a specialist, and a very strict schedule of ingestion. These requirements do not exist in India. Lastly, the consensus amongst researchers trying to find a vaccine is that there is very little hope for a low cost, high efficacy vaccine in the next 5-10 years and perhaps for much longer. So prevention is, at present, our only hope.
Having said that current ARV therapy is not a solution to the long term goal of stopping the spread of HIV/AIDS in developing countries, it is also equally essential to understand that we absolutely need these drugs to be available cheaply. There are a number of reasons for this. As more and more HIV+ patients come into hospitals with serious opportunistic infections that are not immediately life threatening, the doctors need the ARV therapy to control HIV so as to speed up the recovery from the other infections. Otherwise the hospital stay of the patient can become indefinite, leading to frustration amongst the doctors and misery for the family. Second, in cases where the HIV infection is diagnosed very early, ARV therapy can keep the patient healthy and functional for a much longer period of time so that they can remain productive and take care of their family. Lastly, the human race survives best when there is hope, and ARV provides the best we have to offer at the moment for anyone who does get infected. Removing hope can lead to severe emotional trauma and I fear will result in a very high social cost.
Fortunately, the way to stop the spread is completely in our hands if we have the will. If people abstain from risky sex (unprotected sex with casual partners whose HIV status is not known) and the medical-dental community implements very strict control over blood transfusions and sterilization of instruments, the spread of HIV/AIDS can be stopped overnight.
In reality both these are proving very hard to carry out. For example, cheap anonymous sex is one of the very few pleasures available to the poor, and over time they have gotten used to the prevalence of sexually transmitted diseases like syphilis and gonorrhea and know that these can be treated easily. So the morbidity of a new disease, HIV/AIDS, that is incurable and kills after a long infectious, but largely asymptomatic, period of years has not sunk in. Furthermore, risky sex abounds in all socio-political segments of society. The elaborate call-girl rackets and schemes for willing/unwilling induction and seduction are so many that one could fill many evenings narrating them. The tragedy is that while these are considered fun topics for conversation at social gatherings and the elite are in general very familiar with these practices, the disastrous consequences of such risky behavior has not sunk into even this elite.
Changing people's life styles regarding sex is hard in India since sex is a taboo subject and people don't like to discuss it. Many of the politicians, policy makers, administrators, senior doctors, industrialists are over 50 years old. They are not willing to accept that sexual freedom and experimentation is common amongst today's youth. (Indian youth are, today, going through their version of the sexual revolution that the US went through in the 60's. Needless to say, the timing could not have been worse. ) This elite believes that by denying it, they will somehow curb the explosion. They would like to believe in the existence of a high moral force that is generated spontaneously and is independent of the reality -- deep rooted and pervasive corrupt practices, get what you can as soon as you can attitude, complete lack of care for anyone outside a small group of relatives and friends, and the lack of role-models amongst their generation. Since the generation in control is in denial, it is no surprise that effective dissemination of information and awareness is proceeding very slowly.
Next, the lack of proper handling of blood and sterilization of instruments reflects the wide spread conditions of poverty and corruption endemic in India. One cannot expect the medical community alone to be honest and free of corruption when the rest of the society is not.
Therefore, to curb the spread of HIV/AIDS and many other diseases like tuberculosis and hepatitis, we will have to also address issues of poverty, marginalization of large segments of society, and corruption. Even issues like social conditions for women, for example eliminating sexual and physical abuse and providing them with the ability to negotiate better conditions at home and at work, play a crucial role. The more one reflects on the issue, the more it becomes clear that in the absence of a cheap and highly effective vaccine the solution requires re-inventing society. Given this Herculean task one should rightly ask why suddenly focus on this latest killer HIV/AIDS when the need to improve the economic, political, and social conditions in India has been apparent for decades and people are proceeding at some convenient pace. The reason is that the very rapid spread of HIV/AIDS we are seeing in India has dramatically reduced the time allowed unless we are prepared to lose a very significant fraction of the most productive segment of society. In addition, there will be millions of victims of contaminated blood and surgical instruments who will get infected in spite of the best of their precautions. Socio-economic status is not sufficient to eliminate all the risks for HIV infection.
To bring about the required change in a very short period of time needs a massive grass-roots movement as we have to educate one billion people and make them aware of the disease and its tremendous consequences for the individual and the family. This requires the status of a top national priority which can only be achieved by if there is political stability and there is the direct and personal involvement of the prime-minister.
The truth is that no one really knows exact figures because of inadequate surveillance and reporting. The latest official government estimate is 3.5 million at the end of 1998 (for details see NACO Web page http://www.naco.nic.in/naco/). These estimates are based on a statistical analyses starting from the number of cases reported by participating hospitals. The general pattern is that these are underestimates because many of the afflicted don't seek help as they are too poor or too marginalized. As a result, the true numbers maybe as high as 10 million. What is even more scary is that the rate of increase is very high: it could be as large as 1-2 million per year already with the total number of infected doubling every 2-3 years. Thus, if unchecked, there could be 100 million people that are HIV+ by the year 2010. A second tragedy is that due to poor health conditions in India, the mean life after infection is likely to be only 4-5 years. Thus, my estimate is that hospitals all over India will soon start to see large numbers of patients daily. This very disturbing and dangerous situation has already been reached in the states where the pandemic is more advanced -- Maharastra, Karnataka, Tamil Naidu, Andhra Pradesh, Manipur, and Mizoram. When asked, any doctor from Bombay, Bangalore, Chennai or Hyderabad will tell you of the increasing numbers of infected people, both rural and urban, coming in every day. In my home city of Ludhiana in Punjab, even private hospitals that were seeing maybe one AIDS case every few months in 1996 are now seeing, on average, two cases a week. The mean age of the patients is 25-30 years, and by profession they are mostly businessmen, servicemen, farmers, and truck drivers.
The third problem is that in most cases the patients are seeking medical help at very late stages of the infection when they are already debilitated by a serious opportunistic infection (AIDS). At this stage they need hospitalization, and over the 10-15 days in which their HIV status is ascertained and the family comes to grips with the situation, their hospital bills have zoomed to at least Rs. 50,000 - 100,000. This sum is significantly greater that the family's savings and assets. At this point they have no option but to take the patient home to die. In addition, the family is left in debt which they have no way of paying back (money lenders are routinely charging 20% interest per month). Solutions are gut-wrenching -- for example selling off the young children for sex work, or for bonded labor. Even if the children escape this gruesome future, they still live a stigmatized life. For example girls have a hard time getting married. In short HIV/AIDS is destroying not just individuals but entire families.
Another worrisome trend is the number of people from the armed services and the police that are showing up. Given the "macho" complex that is common in these communities, the long periods of time they spend away from families, and the power of exploitation that the police have over the poorer commercial sex workers, a high rate of infections is not unexpected. However, the fact that the lead group has already advanced to the stage of AIDS implies that this serious social and political situation is already at our door steps.
Because of the many social, economic, medical, and political ramifications, stopping the spread of HIV/AIDS should be considered a national priority. It my opinion it constitutes a national emergency as it has the potential to create social, economic, medical, and political chaos throughout the nation, including the possibility of a collapse.
The largest spread of HIV/AIDS is amongst the most sexually active who are also the most productive people in the prime of their lives (age 15 - 50). The mean age of people currently coming to hospitals is between 25-30 years. Society is, therefore, losing the bread winners and at the same time having to take care of increasing numbers of orphans and the elderly. Thus, to consider HIV/AIDS as a form of population control, an unfortunate suggestion that some people have made to me, is completely misguided and misinformed. HIV/AIDS causes a growth in an unproductive sector (orphans) and a depletion in the most productive. Second, a more important issue is that the rate of infection is increasing rapidly and may soon overtake the population growth.
It is true that the human race is very resilient. People will survive, just as Germany and Japan survived World War II. However, the cost was very high. They had to restart from scratch, and the survivors paid a very high price in terms of losing loved ones, watching their property and assets destroyed. Germany got divided and it took 50 years to recover. The misery of HIV will be greater as people watch their loved ones die slowly over years and then leave behind children as orphans and elders without any means of support. I don't believe that enduring such misery is the way to move ahead, especially since the well-being of society itself is at risk.
The second issue is medical. HIV/AIDS is the first fatal sexually transmitted disease in recent times. Historically, society has a very poor track record in overcoming and eliminating sexually transmitted diseases. Even the developed nations are struggling to eliminate gonorrhea, herpes, chlamydia, etc., since sex is a closeted subject. In spite of the fact that HIV is not easy to transmit (syphilis, gonorrhea, hepatitis, etc., are 10-100 times more virulent), nevertheless, we are witnessing an explosive spread of HIV worldwide. In addition, HIV by attacking and destroying the immune system is allowing the proliferation of many other opportunistic diseases that are killers. For example tuberculosis, and especially multi-drug resistant TB, is being seen in increasing numbers in conjunction with HIV, as are certain other rare diseases like toxoplasmosis. With modern day global mobility, these communicable diseases will spread worldwide into the general public.
Lastly, the world is far more interconnected and interdependent now. The explosion of HIV throughout the developing world could create a panic in the global economy leading to global economic and political chaos. Note that four of the regions where the spread of HIV is now exploding are the countries of the former USSR, India, Pakistan, and China. These regions have unstable political systems, contested borders, restless citizens, strong armies, and nuclear weapons. Thus, in my opinion, HIV can accelerate and spark a very volatile situation.
At some point this will happen. However, the long and in many cases essentially asymptomatic period before the onset of AIDS, and the ways of spread (sex, blood transfusion, contaminated needles and surgical instruments) make it very hard to predict when this point will be reached in the developing and third world countries. For example, in almost all of Sub-Saharan Africa, including South Africa with its large infrastructure of medical and educational institutes, 10-26 percent of all adults in the age group 15 - 50 are already infected and even so the rates of infection are still increasing. While some may argue that the risk factors in other developing countries are no where as severe as in Sub-Saharan Africa, I feel that the risk in all of Eastern Europe and Asia, including south-east Asia, are sufficiently high to create a very scary situation for the whole world. Even in the most developed countries, Australia, western Europe, Canada, USA, and Japan, we are no where near having solved the problem. For example in the US there now are a steady 40,000 - 50,000 new infections a year. Thus, the total burden of the HIV infected is growing as drugs are keeping people alive longer but cannot cure them. It is unfortunate that the success of ARV therapy has lulled us to sleep for the moment.
The two example we know of amongst the developing world where progress has been made are Uganda and Thailand. In both these countries the respective leaders of state, president Yoweri Museveni and prime minister Anand Panyarachun, personally led the campaign and impressed the message (behavior change, condom use, sex education, and the need to remove corrupt practices in all walks of life) on the public continuously via newspapers, billboards, radio, and TV. In India, in spite of the efforts of many, overall we are still in a state of denial. Prime minister A. B. Vajpayee addressed the National AIDS conference in Delhi on December 12, 1998 and highlighted the gravity of the situation (the full text of the speech is available from http://www.nic.in/naco/). This speech was not even carried by the newspapers. In May 1999, when a parliamentary report revised the figures from 3-4 Million (PM Dec. 1998) or 5 Million (UNAIDS) to 8.2 million, there was just a 6 line statement in the Hindu. The current political instability (6 governments in seven years) and the war in Kashmir have, unfortunately, diverted the attention of the politicians. Thus, we have so far failed to mount even the kind of campaign that was necessary in the much smaller countries, Thailand and Uganda, to have a positive effect. Until we make such an all out effort, it is not possible to answer the question how well even an all out effort will succeed in India. What is nevertheless clear is that if we don't try, India faces the potential of a collapse under the burden posed by the current health pandemics of TB, hepatitis, malaria, and HIV/AIDS.
An example of failure is South Africa. It is a country with an educational and health infrastructure like India's. Last year UNAIDS estimated that 13% of all adults (that is 1 in every 7-8 adults) were already HIV+. In spite of such large numbers President Nelson Mandela, one of the most visionary leaders of the 20th century, did not publicly speak on the issue until late 1998, or set in motion an intervention strategy. The real numbers today could be much higher and are projected to reach 25% in the next few years. Imagine a country with one in every 4-5 productive adults already waiting to die in the next few years, leaving behind millions of children and elderly with no one to take care of them. We certainly do not want India or any other country to face a similar disaster.
Inspite of the past, I believe that President Mandela can still play a major role in spreading awareness. He has such a unique and commanding stature that were he willing to travel across Sub-Saharan Africa talking to people and the heads of the various countries, he would have a tremendous impact. My hope is that he is somehow convinced to do so.
There are many reasons I believe this. First, the problem is huge and its causes have deep roots in society. Only the direct involvement of the prime minister can send a very clear message to the entire population, and in particular to the medical establishment and to the bureaucracy, that this issue has the utmost priority. It came as a jolt to me during my last two visits to India when many top Indian Administrative and Foreign Service (IAS and IFS) officials refused to accept the magnitude of the problem and some went so far as to call it an American plot to subvert the integrity of India. Second, it will make available the required financial support within India, mobilize the political machinery, and draw much more support from the international funding agencies. Third, in a land where we look up to our leaders for all the solutions, it will give courage to all to shed their religious, moral, and social prejudices, and to come together to fight this scourge. Finally, the ensuing open discussion and acceptance of the fact that HIV cannot be spread by casual contact will prevent the panic, fear, and victimization of the marginalized, which I fear will otherwise result.
The grass-roots education and awareness campaign that I am advocating aims to provide information on a variety of diseases and not just HIV, and how to protect oneself against them. Understanding and practicing prevention will reduce the load on an inadequate health care system and improve general hygiene. For example, the use of a condom campaign in Thailand has not only curbed the spread of HIV but reduced the incidence of syphilis and other STD's from about 30 percent to about 10 percent already. Second, women bear a much larger burden of sexually transmitted diseases, and are much less in control of their destiny in poor countries. Education leading to their ability to attain better conditions at home, a say in the size of family, and better employment opportunities will have an impact far beyond the control of HIV/AIDS. Lastly, I believe that all Indians are already aware that the circle of corruption will one day jeopardize every citizen's life, and that we must have the courage to stop corruption. All we need to do is translate this knowledge into action -- each one of us should start on our own to work towards the collective good rather than waiting for others to take the first step. In short, I can say with confidence that every ruppee we invest into the education and awareness campaign will be returned a hundredfold. In fact it may be the difference between a strong and prosperous India and no India.
A large part of the spread of HIV/AIDS is now in the industrial and agricultural work force, especially the migrant worker. This labor force is about 200 million strong in India. These workers live in desperate conditions in slums around industrial areas and often resort to sex with commercial sex workers, hoping to forget their misery for a short period. Once infected they carry the disease back to their family in the villages. A large fraction of cases we are now seeing in hospitals are HIV+ pregnant wives of migrant workers.
A great saving in designing intervention strategies to educate the migrant workers would have been possible if the associated commercial sex workers were localized. One could then have approached the problem from both ends, i.e., have programs to educate both. Unfortunately, in addition to the localized brothels in some of the larger cities, a large fraction of the sex workers are also migratory. This makes it very hard to locate or identify them. This inability to reach the sex workers puts additional burden on industries as they have to assume full responsibility for protecting their workers. In this regard my investigations suggests that training and developing peer groups amongst the workers to spread the word is one of the best strategies available to us. There is a very strong network between the migrant labor -- even though people from a village may work and live in different parts of a city, they get together very often, discuss issues important to them, and have a very strong communal bond.
A consequence of the fact that the infection is diagnosed very late is that most often both parents are already infected by this time. Once both parents die as a result of HIV, even the uninfected children are doomed as they are very often left without anyone to take care of them, and eventually become victims of sexual and physical abuse. Worldwide 14 million people have already died of HIV/AIDS and in addition have left behind 9 million orphans. So HIV/AIDS is killing our present and future generations of skilled labor force in one go. Lastly, one should not fool oneself into believing that risky sex is only practiced by the poor. It is equally prevalent in the highest political, administrative, industrial, and social circles.
In my opinion, Indian business is in a state of transition. It is emerging from the psychology and mentality of a family owned concern to professional organizations looking at global markets. Only recently have corporations begun to truly realize that their workers are their biggest assets. This is much more relevant to small companies where each worker is crucial and absenteeism causes interruptions in production. Also, there is a popular delusion that, due to India's large population, labor is easy to come by. My conversations with many industrialists in India reveal that this notion is false. It takes 1-4 years to train and gain confidence in a new worker. (What is true is that there is a surplus of warm bodies, NOT of workers that can be trained and can become skilled in a reasonable amount of time.) Thus, retaining their workforce and keeping it healthy should be one of the foremost priorities of the management. It is this mutual interdependence between the owner and the worker that I am using as the basis of my intervention work with industries. Until recently, health care of the workers was not considered the responsibility of the management. I am trying to convince them otherwise. Surprisingly the owners/CEO's have been very quick to recognize this, and that, as the pool of skilled labor shrinks due to HIV, the survival of their business will be threatened. The challenge now lies in translating this awareness into action whereby the owners/management takes responsibility for the protection and welfare of their workers.
In my opinion the all out effort I am advocating will actually have the very opposite effect. HIV/AIDS is a global problem and all developing nations will have to come up with strategies to curb it. Foreign investors will pay very close attention to countries that take the necessary steps quickly and act decisively. Such action will send a very clear message that India means business and has the infrastructure and the will to take care of its problems and deliver the goods. At this point HIV prevalence in India is still relatively small; as a percentage of the total population it is about one percent. Foreign investment and tourism will therefore not be affected in the short run, however, if the current growth patterns in the spread of HIV continue for even a few more years, the situation will be very different and we may see foreigners and foreign capital staying away from India.
There are additional benefits to the educational and awareness campaign. For example, if industries start taking care of their workers and make them feel a part of the team, productivity and quality of product will improve. This will invite more and not less investment. Considerations of such correlated benefits make me say with confidence that any investment we make will be returned a hundredfold.
The solution to health pandemics lies in the behavioral change of a very diverse and multi-faceted population of one billion people. Even in much smaller countries with a far more homogeneous populations like Thailand and Uganda, it took 5-10 years after the start of the full scale campaign to show definite reversal in the rise in the rate of infections. So, even if we start today, we are very likely looking at 100 million or more infections, largely in the most productive segment of society (mean age 25-30 years) before we see a definite turnaround. Any business person, analyzing the situation from a purely financial point of view will, I believe, come to the same conclusion: there is a need for immediate and all out action as any delays will prove to be increasingly more costly.
Let me answer this question in three parts. First, I would like to outline what can and needs to be done. Next, I will state what I am doing and finally comment on what others can do. It is very important to understand from the very outset that re-inventing society is not going to be at all easy. Also, the magnitude of the problem is astronomical. One has to have a grand vision but be willing to live with small incremental steps. Influencing even a dozen people and bringing a change in their lives is a worthy cause and something anyone should be proud of. Aiming too far too soon can lead to disappointment, frustration and cynicism. We cannot afford that.
People through their actions, writings, discussions, contribution of time, money, and other resources, and voicing of opinions can contribute in the following ways.
I believe that stopping the spread will require both a grass-roots movement and direct involvement of the Prime Minister. With respect to the grass-roots movement, I am motivating, through lectures and forming core groups, the involvement of schools, colleges, hospitals and industry in India. The real work is being done by the local organizations, I am just a motivator. On the government front I am trying to convince as many friends and colleagues, who now are senior bureaucrats, that the health pandemics in India are very serious and pose a very real threat to stability. Hopefully, persistence, time, and delivery of the same message from many concerned activists, will result in the message reaching the PM, convincing him of the urgency, and precipitating action. Lastly, to reach school and college students and educate them on social issues, Vasant Valley School, New Delhi, and I are developing a non-credit course on Health, Environment, and Sexuality. The goal is to introduce these topics gradually, starting in the nursery and sustaining and developing them through the twelfth grade. This information based course will subsequently be made available, free, to other schools and colleges. It will also be available on a CD (or through the WEB where internet access is available) to any individual with a Personal Computer. They can access it and play with it just like a computer learning game.
The basis for prevention is education, spreading awareness, and changing social conditions that lead to conditions of poverty and destitution. This requires dedicated knowledgeable people and money, of which the first are, in my experience, in much shorter supply. The direct participation of people in intervention and awareness campaigns will require that they first educate themselves on particular aspects of the medical, social, political, and economic aspects of the problem, and then work tirelessly to bring about the needed changes in life-styles. NRIs to be fully effective may have to make frequent trips to India, find a "home base" for their activities in India, and build an organization there to sustain the effort. On the other hand, anyone can, by repeated exchanges of telephone calls, e-mails, and letters, communicate the urgency of the situation to their relatives, friends and associates in India. Hopefully some of them will become actively involved and the NRIs can then join in their efforts. Another approach is that there already are a large, but certainly not large enough, number of very good and dedicated people who have committed their lives to improving conditions in India and have a proven track record. These individuals and NGOs are struggling because of a lack of funds. It is relatively easy to identify these organizations and support them.
The intellectuals, academics, professionals (especially the medical community), and industrialists have a very critical role to play. Their collective voice provides guidance to politics and politicians. It may be very possible that the PM is acutely aware of the potential for catastrophe posed by HIV/AIDS, and yet may not be willing to take the lead and maintain personal involvement in the intervention campaign. He may have been warned of adverse political fallout due to the taboo against public discussion of sex in India, or he may not know how to proceed effectively. Through our writing in newspapers, discussions in public forums, conferences, advertisements in newspapers and on TV, we can create a very strong base of support for the PM (moral, intellectual, and political) that allows him to take the appropriate and urgently needed action with conviction and strength. In short, we, trained professionals, must assume responsibility for precipitating action by our commitment of time and resources.
My plea to the NRIs is that only by preserving a great nation can we keep alive the traditions and values of our parents and have something to offer to our children in terms of a heritage. India will continue to be a great place to visit and explore, its people ever willing to renew the bonds of love and affection, provided we can help it make the transition from poverty, disease, environmental degradation, and social and political inequalities to the economic and cultural giant we wish it to be.
For further information on HIV/AIDS and if you wish to explore ways in which you can help I can be reached by e-mail at rajan@lanl.gov. Links to information on HIV/AIDS and a summary of my work can be obtained from the web page http://t8web.lanl.gov/people/rajan/AIDS-india/