As another world AIDS day passes by and the epidemic shows no sign of end, we need to evaluate the status of AIDS in India. Our country is one of the hotspot of acquired immunodeficiency syndrome (AIDS), an incurable syndrome that eventually befalls on large fraction of human immunodeficiency virus (HIV) positive individuals. While globally the number of AIDS patients has started to stabilize but epidemic is nowhere close to being over. This global epidemic has already turned out to be a major killer of humankind on an epic scale comparable to black death and smallpox. As per the latest estimates by UNAIDS, it is the fourth leading cause of death. In India, the state of affairs is so unsatisfactory that we still have frequent cases of mass infection of poor patients due to the negligence of hospitals, horrible mistreatment of HIV positive individuals and lack of even basic care for millions of AIDS patients. While the problems of AIDS in India are manifold and would require efforts from all the sectors of Indian society, in this article we want to bring forward key failures of the Indian government. We focus on five core issues that require immediate attention, if we wish to see the tail of this AIDS epidemic:
1) Demographic and epidemiological understanding
3) Screening and counseling
4) Treatment facilities and medicines
5) Need to develop indigenous cures
Demographic and epidemiological understanding: In India, it is difficult to trust the total number of AIDS patients, as grossly contradicting government figures makes one wonder if the actual magnitude of the epidemic is even larger than what is currently reported. The latest estimates released by the National AIDS Control Organization (NACO), an organization run under the auspices of the ministry of health, indicates that national adult HIV prevalence in India is approximately 0.29%, which corresponds to an estimated 3.4 million plus people living with HIV in our country (Annual report NACO 2009-2010). In contrast in 2005, NACO reported 5.21 millions HIV positive individuals. One can only wonder if such a change in the figures is an effort to put lipstick on the pig or there was a fundamental error in one of the two estimates. There has been some beating around the bush, blame laying and unsatisfactory explanations in response to this contradiction but if there was a genuine error then what is conclusively being done to avoid future errors, is currently not clearly known. Apart from getting the right overall numbers, what is also needed, is detailed demographic and epidemiological data. Different strains of HIV are prevalent in the different parts of the world and progression of AIDS is also different in people of different genetic background, for example there is a very small fraction of people that innately do not contract AIDS. Such trends of immunity to AIDS are either absent or currently not known in the Indian population. It is rather appalling that in India, the land that holds genetic diversity next to the continent of Africa, we for some silly reasons have been using data solely from the White Caucasian populations. This over dependency on western data is wrong for three reasons: 1) The strains of HIV prevalent in different regions are different, 2) The genetic diversity of India makes comparison to one ethnic group meaningless and 3) Apart from the Anglo-Indians with significant European heritage, no ethnic group in India, whatever be their surname and notions of self identity, share that close of genetic identity with the European populations to justify the current usage. What is needed is to understand the spread of different strains of HIV in India and the progression of diseases in individuals with a different genetic background.
Awareness: The first case of AIDS in India was diagnosed way back in 1986. Subsequently some apparent movement of bureaucratic and political machinery took place that in the following year resulted in the formation of National AIDS control program (NACP). In reality, the understanding of Indian government and media on the danger of this disease was largely missing until recently and is still rather poor. Even till late nineties, it was not entirely uncommon to hear voices in the Indian media claiming that AIDS is likely a trouble of promiscuous foreign lands and not of a conservative India. The media and the government forgot that this land of billion plus is first the land of Kamasutra and then of Gandhian moral curtains. Such ethnic biases that come wrapped in moral judgments cost lives everywhere. Even in the United States, initially AIDS was largely thought to be a disease of homosexuals and Afro-Americans, a curse of God for the decadent. In India, the lackadaisical approach in dealing with AIDS was also due to undermining the spread of HIV through blood transfusion and not realizing the severity of needle sharing by drug addicts and poor hospital administrative/clinical measures. As an addition to the existing policy, firstly the government needs to be aware of the full cost of AIDS and then it needs to take action to better inform the health care professionals and public at large. Media also adds to the trouble by rarely looking beyond less glamorous issues than some odd cricketing century of Tendulkar or birth of Bachchan granddaughter, occasionally mentioning somewhat sensational denial of basic services to HIV positive individuals or some innocent people being infected at a mass scale, instead of serious discussion of issues. Serious discussions, even when managing to creep in from the nooks and crannies of the sensational mainstream news, fails to gather attention beyond one media cycle.
Is this lack of information spread, a result of lack of resources or is it due to lack of political will? A significant chunk of taxpayer’s money on AIDS, like any other resource in India has been squandered with significant chunks making it to the chauffeurs of the corrupt. Lack of adequate money is definitely a problem, but a relatively minor one, compared to the mismanagement of the available resources. An approach for awareness, with low cost and huge promise, is the proper training of health care professionals. Mandatory improvements in the syllabus of medical schools and compulsory training of health care professionals to be better deal with immunocompromized AIDS patients, providing all medical services to HIV positive patients and to counsel patients on screening and precautions can be a game changer. While some namesake changes have been made in some medical curricula of advanced training but none to the internationally acceptable standards and barely any that impact primary care providers dealing with majority of patients. Formulation and implementation of laws against discrimination of HIV positive patients is also needed urgently. Another dimension of information dissemination and care is to focus on special groups. Recent international attention and support from charitable organizations along with government of India’s initiatives on free distribution of condoms to sex workers has been very productive. Successful select programs are currently targeting high-risk populations like truck drivers and sex workers but the biggest group with this affliction is currently ignored. This group is of the displaced urban poor migrant workers who are forced to work in non-native cities and seek sexual favors in questionable places. In a nation, that is busy unsuccessfully dealing with the symptoms of poverty and displacement, by the means of handouts that reach only select few and harassment to silence dissent, one needs to cure the actual disease of poverty that accentuates problems such as AIDS by means of holistic socio-economic development.
Screening and counseling: Roughly 85% of new infections are via the heterosexual route and efforts towards premarital counseling for HIV can reduce half to three fourth of this spread. In Goa and Andhra, the high prevalence states, the state governments proposed bills in 2006 to make HIV testing compulsory before marriage, but ethical concerns and political issues have thus far stopped the actual implementation. This issue of mandatory testing poses a real ethical concern as on one hand we do not have any patient confidentiality where people are denied their due rights due to their HIV status and on the other hand, who can justify the infection to innocent spouses, mostly females via their less than faithful counterparts? One needs to evolve a system where an employer and an insurer, cannot know the HIV status of the patient but a spouse can. It is not going to an easy nut to crack for any government, leave alone Indian, but the administration has not even started inching in the right direction of evolving such a mechanism.
Treatment facilities and medicines: National AIDS control program (NACP-III, 2007-2012) of India has a total budget of about 2.6 billion dollars but only a minor fraction of it is for the treatment. This is unacceptably low amount of money being spent on treatment, especially the amount that finally trickles down the bureaucratic apparatus. One may wonder what do we mean by treatment of an incurable syndrome? The progression of HIV positive individuals to AIDS is very different. Once patient contracts full blown AIDS his/her survival can vary from months to decades. This survival, apart from patient to patient variability, depends on the availability of antiviral drugs and treatment facilities. It is possible that India may have lost much of its potential to produce generic and cheap anti-retroviral relief due to twists in the international politics and India’s easy compliance with pressures. It is possible that recent aid to African countries to counter AIDS, has likely come with strings attached as they have almost stopped use of cheaper generic anti-retroviral drugs. Indian anti-retroviral drugs that were much cheaper than Western products have not just lost a market in Africa but their share in India is also tapering. We would recommend evolution of an informed policy that considers efficacy and costs of all compounds with the goal to save as many lives as possible.
Need to develop indigenous cures: Let us focus on vaccines, a preventative approach that actually holds a long-term cure of AIDS. While there have been some sporadic islands of successes in the ocean of failure in finding vaccine for AIDS, the international efforts are finding new promises and ruling out failed ideas with every passing day. We wonder why not a single significant effort worthy of mention is being pioneered in India? Given that we as Indians have become comfortably numb to the thought of India as a second or third grade country that is a recipient of high-end technology and fruits of scientific research, an average Indian, even if bluntly reminded of the state of affairs, howsoever offended, will not break sweat for long about the lack of innovation. The concern is far graver than the lack of innovation and the lack of national pride. If we need vaccine for AIDS, as soon as it is available in the West, unlike the case with polio or smallpox, we cannot take our begging bowl to world as we did in early years after independence or grossly overpay our way out, as we frequently do to procure any technology, ranging from our medicines to our warplanes. The problem with HIV vaccine stems from to the issues of demographics and epidemiology. Different strains of HIV are prevalent in different parts of the globe. HIV is very diverse, in fact some strains only show 40% homology between each other, not that different of genetic homology between you and a banana and in fact less than you and an earthworm. Thus to combat a hyper-mutable virus one needs to work on local strain and keep local population genetic profile and overall epidemiology in mind to solve the AIDS epidemic in India.
Will India rise to the challenge novel anti-retrovirals and indigenous vaccine? Likely not. Even in the well developed sectors like information technology, India only delivers small software packages for foreign products and does not manufacture a single major internationally recognizable product. This is not due to dearth of scientists or of money. In fact, India has very high numbers of biomedical scientists and research institutions spread across the country for the size of its economy. The problem is of incompetence, lack of management, corruption and nepotism. The political infestation of research is palpable in Delhi where corruption and lack of accountability permeates all levels of research epithet. One need not go into the obvious appointment of unqualified vice chancellors and administrators of universities and directors of research institutes based on proximity to political parties in power. A look at say, the University of Delhi University, a supposed prime University of India, can give you an idea of the political stooges running the show of research in India. Apart from corrupt management, there exist a large number of the so-called scientists who do not have a single major internationally known finding to their name but are busy sliding papers in “friendly” obscure journals and frequently get awarded national and regional honors. This abysmal state of affairs keeps very successful and patriotic scientists out of this Indian swamp that is sure to kill any good science.
In summary, current government efforts are either missing or misplaced and are largely wrought with corruption and inefficiency. A significant blow can be landed to AIDS epidemic with effective government policies. We hope that this article along with many other efforts raises awareness of public and its representatives for better combating the scourge of AIDS.
Dr. Sukant Khurana is a New York based scientist, innovator and author of Indian origin. He is known for his research in the field of sensory perception, addiction, learning and memory, apart from his recent involvement in many high tech sectors of India. He is active in campaigning for issues of corporate responsibility, education, scientific thinking and improving affordable healthcare. He can be contacted at email@example.com.
Dr. Gaurav Sharma is a postdoctoral scientist at the Department of Transplant Immunology and Immunogenetics of All India Institute of Medical Research. He has been successfully involved in the first demographic study, characterizing the progression phenotypes such as rapid and long-term non-progressors in India and HIV/AIDS related genetic determinants.