“Of all forms of inequality, injustice in healthcare is the most shocking and inhumane.” Martin Luther King Jr’s famous saying found a mention in the initial observations of Justice Manmohan of the Delhi High Court, on April 17, 2014. The “inequality, injustice” that Justice Manmohan was referring to was the plight of a 7-year-old boy Ahmed, suffering from a little-known and very rare genetic disorder called Gaucher’s disease.
About Gaucher’s disease-
Gaucher’s disease is a rare, complex life threatening disease that occurs due to deficiency of an enzyme that helps in breakdown of metabolites in the cell of a body. It leads to loss of body function and intractably painful death. Enzyme replacement therapy is the cure.
For Ahmed’s father, it was a repetition of a familiar tragic story, as he had lost his 3 kids to Gaucher before. In 2000, his 4-year-old son’s abdomen swelled due to enlargement of liver but doctors could not figure out why. In 2002, tragedy repeated itself when his two month old daughter died under similar circumstances. The couple lost their third child in 2005, to realize that this disease was caused by recessive mutation of the gene, which means that the parents were carriers of this particular disease and thus it was dominant in their offsprings.
This rare disease was originated back in 1882, in France. But in India, the treatment has been available only since the 1990s.
In India, 7,26,11,605 people are suffering from rare diseases and 6,000 to 8,000 types of rare diseases are found, many of which still do not have a cure. Specific “orphan drugs” are developed to treat such rare medical conditions. But no Indian company has developed even a competing drug, at least not anything satisfactory. Orphan drugs are imported from global manufacturers.
Being the victim of such rare diseases, why are orphan drugs not manufactured in India?
"Most Indian biotech companies feel there's no market because this 70 million spans thousands of diseases. Some have an incidence of 1 in 2,000; others, 1 in a million. Rarity is relative. But orphan diseases need lifelong therapies, and that should be an opportunity for them," said Dr. Meenakshi Bhat, a clinical geneticist at the Centre for Human Genetics, Bangalore.
Pharmaceutical companies in India have little interest in developing and marketing products intended for only a small number of patients. It is calculated that return on investment for new chemical entities is just 6-7%.
Rare diseases are “rare” because of their infrequency of their existence. Presently, the demand may be less compared to other medical conditions like infections or malnutrition. But India is in a transitional phase where the morbidity and mortality due to such common diseases is gradually decreasing and large number of patients are being diagnosed with such rare diseases. But there is not adequate information regarding these diseases. Health professionals are often deficient in appropriate training and awareness to be able to diagnose and treat them. But the need of the hour is to focus on timely diagnosis and prevention of these rare diseases.
The treatment is expensive as the manufacturing includes extensive research but the issue cannot be neglected. Although the initial investment is high and there are challenges ahead for the pharmaceutical companies but orphan drugs are the key to recovery and stability in the market. The focus needs to shift to personalized medicines. Only then will it be effective.
The intersection of rare diseases and the inaccessible medicines to a vast majority of the population is a hurdle. But these challenges can only be faced when the policy makers accept the fact that the health care infrastructure is as essential, if not more as the physical infrastructure for the development of the economy.
A group of pharmacologists at a conference held by the Indian Drugs Manufactures Association in 2001 requested the Indian Government to institute the Orphan Drug Act in India. Yet, India has no regulations for rare diseases and orphan drugs.
The much hyped Union budget for the period 2015-16 16 allocates no more than Rs 33,152 crores to finance the health sector. It is a crying shame that this government decided to spend only about 1.3% percentage of its Gross Development Product (GDP), whereas in 2013-14 it was 4.3% of its entire expenditure.
Successive governments promised to transform the healthcare system, including PM Narendra Modi’s announcement of a Rs 24,000-crore national health protection scheme. But little has changed on the ground.
In the health sector, wide disparities exist in delivery and access between states, rural and urban population. It is a large sector in India, but dispatching of proper health care facilities at subsidized rates is reduced. The government needs to wake up to the reality that affordable medicines and procedures continue to remain inaccessible to a vast majority of the population. They ought to focus on devising schemes that focus on special requirements of the susceptible and hard to reach population.
Various NGOs along with the government have come forward to improve the situation. One such example is the Smile Foundation which has initiated a ‘Smile on wheels’ program which brings quality health care services to the doorsteps of the needy and promotes healthcare awareness among underprivileged.
Also, TATA and GE Health care announced a partnership to train 10,000 youth in various technical areas of healthcare over a three-year period. This partnership will focus on bridging the skills gap in healthcare technical or operating staff.
We must develop the health sector by refined equity-focused decision making because health is not a luxury and should not be in the possession of only a privileged few. Government is bound to ensure that poor and vulnerable sections have equal access to treatments, especially if there is a likelihood of a patient leading a normal life. The system has to be strengthened to detect and respond to outbreaks and new emerging diseases and there must be professional monitoring for the same.
The implementation of these principles with strengthened public health and primary-care services will help to ensure a more equitable healthcare for India's population.
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