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GREATER MALAISE

India loses several crores of rupees every year from the burden of diseases that have no treatment. India Today's Supriya Bezbaruah finds out the reasons behind the gross neglect.

With every halting step he takes, Sanjay's foot - a grotesquely swollen, heavy lump - screams out his tragic tale. Like 44 million Indians, he is a victim of lymphatic filariasis, 'elephant foot' in common folklore.

Caused by a simple worm infection, it has no quick effective cure, and costs the country $30 million dollars every year, estimates the World Health Organisation (WHO). Sanjay will, in all probability, die. But the greater tragedy is that no one has even tried to look for a cure for the disease that will kill him.

Nine times more money is spent trying to find cures to global and
lifestyle afflictions from baldness to 'obsessive shopping' than on such 'neglected diseases', according to a report by Medicins Sans Frontieres, a Nobel Peace Prize winning international organisation. Between 1975 -1999, 1,392 new drugs were introduced into the world market. Only 1% - 15 drugs - were for tropical diseases and tuberculosis. These affect one third of the world population. More than half of the affected are in India.

As a result, India loses several thousand crores every year from the burden of diseases that have no treatment. "It is absolutely essential that we create entities which develop drugs to suit the our needs," emphasises N.K. Ganguly, Director-General, Indian Council of Medical Research (ICMR). Now India is a key partner in an initiative to halt this trend. On 3 July 2003, ICMR joined hands with MSF, WHO, the Louis Pateur Institute in Paris and others to form an organisation dedicated to research in 'neglected diseases', called Drugs for Neglected Diseases (DND). MSF will invest $250 million over 10 years. The initial focus is on three diseases including leishmaniasis (Kala Azar) which has more victims - 1 lakh - in India than anywhere else in the world. ICMR has provided the expertise, and extensive infrastructure, in clinical research.

With support from WHO, ICMR has already started clinical trials for some promising drugs in this area. " India is important because it has everything - excellent scientists, a strong pharmaceutical industry, as well as the need," explains Bernard Pecoul, Director of MSF's Campaign for Access to Essential Medicines.

The figures tell their own story. To drug companies, health is indeed wealth - the health market was valued at $402 billion globally in 2002, according to a survey by the Harvard School of Public Health. North America, Europe and Japan account for 80% of the world drug market, while Africa, asia, latin America and the Middle East, representing 80% of the world's population, account for only 20% of the market. Between 1975 -1999, 1,392 new drugs were introduced into the world market. Only 1% - 15 drugs - were for tropical diseases and tuberculosis. These affect one third of the worl'd population. " And many of these were actually not meant to target tropical diseases. The substances are by-products of research for other disease indications, such as veterinary medicine," says Robert Ridley, co-ordinator, Tropical Diseases Research, WHO. In other words, animal drugs got more attention than some human diseases.

Less than 10% of global health research is dedicated to diseases that account for 90% of the world's health burden. The reason is simple. It costs $300 -$500 million to bring out a new drug. To survive, pharmaceutical companies have to ensure that their profits from the drug are greater. As one senior manager of a global pharmaceutical company points out, " Drug companies are businesses, not charities." So drugs for a bigger market - mainly North Amercia and Europe - get priority. " Even pharmaceutical companies in the developing world target drugs for the developed world, " says Ganguly. But public health organisations rarely have pockets deep enough to sustain the entire process of drug development.

As a result, for some common tropical diseases, there is no treatment. For others, like Kala Azar (leishmaniasis) or sleeping sickness (trypanosomiasis) the treatment is so toxic that it is almost as likely to kill as the disease itself. Some diseases like malaria or tuberculosis, where drugs are available, resistance to the drug can render them ineffective. Infectious and parasitic diseases account for 25% of the disease burden in low- and middle-income countries, compared to only 3% in high-income countries. Yet, says a World Bank study, eliminating communicable diseases would almost completely level the mortality gap between the richest 20% of the world population and the poorest 20%.

Medicins Sans Frontieres considered this need urgent enough to deviate from its normal focus on treatment, and has decided to use its Nobel winnings on research on neglected drugs. This has led to the global partnership that is DND. MSF will invest $250 million over 10-12 years on DND for development of new drugs. The idea is to lower the risk of investment by pharmaceutical companies, by doing the initial investigation. Once promising results are seen, the pharmaceutical industry will be involved. India will play a key role in both research and clinical trials.

The impact could be far reaching. Currently leishmanisis, which affects around a lakh of people in India, require a month-long hospital treatment with injectible drugs. Recently WHO-TDR, along with a small German pharmaceutical company, Zentaris, had developed an oral drug for the disease, miltefosine. TDR has also identified another potential drug against this disease, paromomycin. Clinical trials for both these drugs were conducted by ICMR in Bihar, and involved the Rajendra memorial Institute of Medical Sciences in Patna as well. As a result, local expertise is being built. The Patna institute is increasingly being recognised as an international centre of excellence for undertaking clinical studies.

The concept grabbed the attention of drug companies too. Pecoul expects companies like Ranbaxy and Cipla to be involved in DND. GlaxoSmithKline has partnered with WHO-TDR to develop a new drug against malaria, Lapdap. Ranbaxy has already entered into a collaborative research agreement with Medicines for Malaria Venture (MMV), Geneva, for the development of anti-malaria drugs. Recently Astra Zeneca inaugurated a new multi-million dollar research facility in Bangalore to focus on new treatments for tuberculosis, while Ely Lilly will manufacture some of their off-patent TB drugs in India. Drugs for smaller markets may be expensive, but in an inter-connected world, ignoring such diseases may prove far costlier.

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