HIV/AIDS in India

Internationally, HIV / AIDS threatens to become the global health crisis of the 21st century. It is spreading exponentially around the world, decimating countries and economies. Even though we know how it spreads, health systems have been unable to educate people effectively in prevention. Twenty years into the epidemic and there is no cure for HIV/AIDS. Medicine is at least a decade away from a vaccine. Anti-retroviral therapies, the front line medications, basically keep the virus at chronically low levels in the body, slowing the development of opportunistic or secondary infections. The disease is bringing economic and social issues, medical shortcomings and pharmaceutical greed, and the pressures of massive fear, stigma and discrimination into the forefront of global awareness.

Sub-Saharan Africa has already been decimated by the HIV virus, with estimates of infection rates up to 50% in some countries and life expectancies falling into the 30s! India has been cited as being the country most in danger of following Africa’s experience over the next 20 years, unless significant and decisive action is taken immediately. There is a small and rapidly closing “window of opportunity” where effective intervention is still possible.

Exact statistics and incidence rates are not available for the Indian sub-continent, where 60% of the population do not consult a physician during their lifetime, relying instead on indigenous remedies and traditional approaches, and establishment of exact causes of death is rare. However, anywhere from 4.5 million (NACO official estimates) to 25 million people are infected with the virus, giving India the largest population of HIV positive people of any country in the world. If one considers that each infected person has at least 10 extended family members who are affected, then it follows that up to 250 million Indians (1/4 of the population) are already directly affected by HIV/AIDS. Of those who are infected, only perhaps 5% are aware of their HIV positivity, and few of this 5% are receiving counseling, useable information, or treatment of any kind. They and their families live in ignorance of the time bomb that is set to explode in their midst.

In India the HIV virus is not confined to marginalized groups, as it was at first in the west, but is spreading rapidly through the general population. HIV / AIDS is most prevalent in young adults, from 20 – 35, the prime years of productivity and childbearing. The loss of these people threatens to strike at the productive heart of India. At this point the primary source of spread is through men, who are contracting the virus through multiple-partner sexual activity and bringing it home to infect their wives and unborn children. Women currently have the fastest rising infection rate. Often their positivity is discovered as a result of testing during pregnancy.

A further major contributing factor to HIV spread is the use of unsterilized needles in health care settings. One eminent researcher estimates that 1 out of 2 injections given in India are unsafe. Women and children are, again, most at risk of receiving these injections.

A major contributing factor to the virulence of HIV / AIDS in India is a lack of basic hygiene and sanitation at rural village levels. A recently released report by Water Supply and Sanitation Collaborative Council cites India as having the worst sanitation record in their study. 72% of the solid waste excreta in the country are not being disposed of safely. As a direct result of this, India has the highest number of children dying from poor hygiene in the world – 519,500 per year!

The rural diet (rice, chapattis and dhal) leads to under-nourishment and malnourishment in children and adults, as well as a skyrocketing rate of diabetes from too much sugar. These factors make rural children and women especially at risk of succumbing rapidly to HIV / AIDS infection, and tremendously susceptible to other disease conditions.

India has a National AIDS Control Organization (NACO) and state level organizations, at least on paper, for every state. These organizations are meant to assess the situation, set policy, distribute funds, develop infrastructure, train professionals, and monitor programs. Set up as a central clearing house, they have been slow to respond to the epidemic, and much given to “cosmetic solutions.” For example, for the first 8 years of NACO’s existence, they were reporting HIV cases in the 10s and hundreds, because their statistical sample was government hospital Sexually Transmitted Disease Departments, where few except the most desperate went. As another example, NACO has claimed to train thousands of counsellors to work in the epidemic, but their “training” consists of a 3-day “course” giving facts, which they then parrot, to clients. Quality, effective, on-the-ground programs have been very rare.

The national and state AIDS programs deliver money to approved non-government organizations (ngos), which develop and carry out programs. While some are excellent and dedicated, many are looking to make money from the HIV “fat cow.” There is little monitoring of programs, or coordination between ngos. The flow of funds from national and state levels to these organizations is sporadic, and programs may be left without funding for months.

Recently there has been much publicity about major funds for HIV coming to India from the Bill and Melinda Gates Foundation, the Global Fund for HIV/AIDS, TB & Malaria, UNAIDS, and other international funding. Most of this money is being channeled through the federal and state government apparatus and little is yet in evidence on the ground. What is there is mostly targeting marginalized populations and centered in urban areas, while the epidemic has moved like a flood around these interventions and into the general population.

There have been dedicated doctors and hospitals throughout India who have met the HIV challenge and developed programs and policies, which provide an effective medical response to the epidemic. Examples of these dedicated doctors include Christian Medical College in Vellore, providing the first testing, diagnosis and treatment program for HIV positive people; Dr. Sunithi Solomon and YRG Care Hospital in Chennai, pioneering in effective patient care; Dr. M. Samuel of MGR Medical University in Chennai, developing an early, rural Mother to Child Prevention Program; practitioners like Dr. S Punjari of Pune and K.S. Satish of Bangalore offering quality patient care and medical practitioner education.

Sadly, these programs are overshadowed by the general medical response in India, which has been one of fear, distrust and discrimination. Hospitals and doctors all over the country routinely deny treatment to HIV positive people, even performing illegal HIV tests without consent on all entering patients. Horror stories abound of patients denied life-saving surgery, and turned out to die. Most doctors believe an HIV positive diagnosis to be a death sentence and want nothing more to do with the patient. They are unwilling to treat even unrelated conditions (such as diabetes) believing the patient is soon going to die. Positive women in labour are turned away from medical facilities.

In 2003, the United Nations introduced a new “3 x 5” program, the goal of which was to get hundreds of thousands of people in third world countries on anti-retroviral (ARV) drugs within the next few years. While it is a laudable goal to finally make available the most recent and effective medicines available in the west, the program in India is poised to precipitate a major health crisis of unprecedented proportions.

ARV are costly, potent and potentially toxic drugs, which require very careful monitoring and an empowered and knowledgeable patient. The drugs must be taken daily, without missing a day or they will become ineffective and drug resistant viruses will emerge. If they are taken by someone who is malnourished, their effects are liable to be toxic rather than beneficial.

India currently lacks the infrastructure to deliver these medications to patients without fail, or to control the appearance of bogus imitations on the market (One drug company, CIPLA, states off-the -record that 30% of the drugs in the market bearing their name were not manufactured by them. Since ARTs are expensive, there is great profit in pirating and substituting placebos.) Further, most drugs are available at chemists and pharmacists without prescription.

Even if delivery of the drugs could be assured, monitoring equipment and tests are not available on any broad scale. The most basic monitoring (CD-4 counts and viral loads) is very costly and only selectively available. Private testing labs do not calibrate their tests and so even when tests are done the results are unreliable. Tests for viral resistance are, at the moment, only available in a few scientific study settings.

There would need to be a massive reeducation campaign of both doctors and patients in effective use of ARTs. Indian patients expect a “quick cure” from medical sources. They are not used to taking medications long-term. Tolerance for side effects is low - patients tend to switch doctors and medicines rather than working through the side effects. Indian doctors are not used to medications, which are prescribed long-term and require consistent monitoring. ARTs are currently being prescribed by many doctors with the same regimen as antibiotics: Take these for 5 days and you will be better.

The Indian government announced in January, 2005, that it was identifying key hospitals and projects as ART provision sites, where HIV positive people could receive free ART treatment. While such sites are slowly becoming operational, the in-take process is lengthy and cumbersome, and there are chronic problems obtaining a steady supply of drugs. Worse, counseling patients concerning side effects, costs, risks, etc., as well as monitoring, and educating patients to appropriate levels of drug compliance are being done very, very poorly.

Also in 2005, Government Hospitals began offering programs for pregnant women who are HIV positive. These programs are offering single-dose Neverapine to pregnant women during the last trimester of pregnancy, followed by a dose to the newborn within 72 hours. Experiments in Thailand have shown that, while single dose therapy is effective in significantly lowering the mother-to-child transmission rate, it also results in as many as 60% of the mothers becoming Nevarapine resistant, making it virtually impossible to put them on any standard first-line ART therapy when they require it. The study recommends the full three-drug cocktail for all pregnant positive women to prevent the development of HIV resistant viruses. The Indian official protocol is mono-dose therapy, effectively condemning the women to no treatment alternatives for their own HIV condition.

The widespread use of Anti-retroviral drugs in India today leads to extensive misuse of the drugs, which would, in turn, leads to an increase of premature HIV/AIDS deaths, enormous complications and side effects and, most important of all, the development and dissemination of drug resistant HIV viruses throughout India and the world.

Even with the best of intentions, the Indian government, the National AIDS Control Organization (NACO) and State AIDS Control Societies (SACS) cannot provide an adequate level of services, resources and care for such a huge affected population, let alone training for health care professionals. This is especially true in rural areas.

If anyone is to provide care and services for HIV positive people, it must begin with the affected people themselves, their families and friends, and their communities. We cannot wait for the government to take action, or for internationally donated drugs and funding. By the time such aid has trickled down to the affected people, it will be too little and too late.

Mahatma Gandhi has stated that rural Indian villages are the backbone of India. These villages are still potentially strong and cohesive, in spite of poverty, illiteracy, migration and official neglect. They can be mobilized to provide an adequate level of care and support for their community members - the willingness and the concern are there - direction and understanding of the need are only lacking. Throughout India village projects, such as Ralegan Siddhii and Jamked in Maharashtra, are mobilizing resources for the benefit of the community. Their experiences can be utilized with great effect in both prevention and care of HIV affected families and communities. Improving the health management of people living with HIV (PLHIV) and reducing the fears of the disease with knowledge and empowerment of communities is a powerful and as yet unutilized tool for prevention or slowing the spread of the virus.

HIV / AIDS is a chronic and manageable health condition, which must be managed holistically. Care and treatment of HIV affected families demands, first and foremost, basic understanding of hygiene, sanitation and diet. The whole family will benefit from simple changes in these areas. The principals of good nutrition, adequate hygiene and basic sanitation are fundamental to all treatment interventions. Medical treatments for opportunistic infections (OIs), Anti-Retroviral Therapies (ARTs), Ayurvedic and homeopathic interventions, coupled with good nutrition, hygiene and sanitation, can be increasingly effective in managing the long term progression of HIV / AIDS, allowing people to live decades with the disease in a symptom-free state, as well as building resistance to other, secondary infections. In addition, mother to child transmission of HIV can now be controlled to a significant extent through the provision of carefully timed and managed use of ARTs during pregnancy and the practice of exclusive breast feeding.

For these interventions to work, the HIV positive individuals and their families and communities must be active and informed partners in their disease management and treatment.

PPH believes that unless HIV is tackled holistically, as part of a broader program of awareness and intervention, both treatment and prevention efforts will prove largely ineffective. Medical intervention alone, and the availability of ARTs will not make a significant difference in the rural HIV epidemic,

Rural communities need to understand the danger they face, and how HIV spread can be prevented. They need to know that they are not significantly at risk by having HIV positive people living among them. They need to understand what can be done in the way of counseling and treatment. They must develop ways to talk about sex, alcohol and other uncomfortable topics.

Rural professionals need proper training and support in how to work with HIV/AIDS. They need to understand that their personal risks are minimal - that it is safe to treat HIV positive people in ordinary medical settings. They need to view HIV / AIDS as a long-term, chronic, manageable disease. They need to become aware of the advantages of professional and effective counseling.

Much of the response to HIV thus far has been on an individual level. Yet India is a country centered in family and community. Decisions about individual welfare and direction are made at the family level, not the individual one. Thus, HIV intervention needs to focus at this crucial family level, helping the family understand how to treat and manage the disease, prevent its spread, and keep the family together.

Rural India is severely lacking in infrastructure, services and a healthy economic base. Yet, rural India has strengths that can serve the county well: rural people can be tough and independent. They are used to making good use of minimal resources. They are deeply bound by tradition and by family and community ties. They are aware of the danger of HIV infection, but do not know what to do about it. When a community decides to act, the results are transformative.

The window of opportunity for effective intervention in the HIV/AIDS epidemic in India is rapidly closing. The obstacles to such intervention are formidable. Effective, coordinated, cooperative action at all levels is essential:

• The Government MUST become proactive at all levels and get behind an aggressive, comprehensive and creative plan of action with money, manpower and determination.

• Existing programs MUST be monitored, strengthened and supported with regular funding, materials and training. The leakage of corruption needs to be minimized.

• Medical infrastructure MUST be developed to monitor drug distribution and safety, provide testing and materials, ensure sterile injections, and provide professional counseling services.

• A massive health-care professional training program needs to be undertaken, stressing that HIV/AIDS is a chronic, manageable disease.

• Communities MUST be educated as to their role in HIV prevention and positive people support.

• Families MUST be involved in all prevention and treatment programs.

• HIV positive people need access to health care, counseling and education in prevention of spread and management of chronic long-term disease.