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Policy shame: sick, rare and ignored -Shilpi Bhattacharya
-The Hindu

If the Indian government is serious about its commitment to realise the rights of its citizens to universal and equitable health care, it cannot ignore rare diseases. The draft National Health Policy, 2015, makes no mention of them

Rare diseases are a diverse set of over 7,000 different conditions that afflict an estimated 1 in 20 Indians and 350 million people worldwide. Put simply, it means that every bus on the road with a full complement of passengers possibly has two people with a rare disease.

Rare diseases are often congenital, chronic, debilitating and fatal. For instance, muscular dystrophy is a group of rare muscle diseases that cause progressive weakness because the body is unable to produce healthy muscles. Therefore, patients gradually lose their ability to walk, carry out daily tasks or even swallow and breathe. A significant proportion of rare diseases occur in children, many of whom do not survive beyond their fifth birthday. Most rare diseases have no cure or treatment and for thousands of rare diseases, there is no ongoing research effort to develop a treatment.

 The rarity of such diseases and the complexity of associated symptoms — many rare diseases breach traditional disciplinary boundaries of medical specialities — result in frequent misdiagnosis, and, more worryingly, damaging treatments. Even when there is a diagnosis, treatment options are just not available, or are far too expensive; this situation will continue without adequate government intervention. For example, in 2014, Mohammed Khan, then seven years old, was diagnosed with Gaucher’s disease, a hereditary disease in which the metabolism and storage of fats is abnormal. It results in bone fragility, neurological disturbance, anaemia, and enlargement of the liver and spleen. With no means to pay for his medication and faced with little help from the government, his parents petitioned the Delhi High Court. The Delhi government was directed to make treatments accessible to him [“A shy smile hides all those mortal fears”, The Hindu, April 6, 2014; http://goo.gl/k45aBK].

Under Article 21 of the Constitution, the Indian state guarantees equitable and non-discriminatory access to health care to all as part of each citizen’s right to life. Yet, the draft National Health Policy, 2015, makes no mention at all of rare or genetic diseases.

A priority in the West

Overseas, the European Commission has declared rare diseases to be a public health priority and more than 19 European countries have adopted rare disease strategies in the past few years. The United States was the first to give policy preference to rare diseases through the enactment of the Orphan Drug Act (ODA) in 1983. These drugs are called “orphan” because under normal market conditions, the pharmaceutical industry has little interest in developing and marketing products intended for only a small number of patients. ODA is said to have facilitated pharmaceutical interest in rare diseases in the U.S. with approximately 400 such drugs being developed after 1983; it was around 10 between 1973 and 1983. However, ODA has been criticised for allowing pharma companies to charge exorbitant prices. An Indian rare disease policy should make it financially attractive for the private sector to evince interest in rare diseases while being careful not to allow pharma companies to exploit any incentives given to them.

Tackling rare diseases requires planned effort, which must be guided by an overarching national rare disease policy to facilitate coordination between patients, scientists, doctors, regulators and the pharma industry. In this, India woefully trails many countries. It doesn’t as yet define and catalogue rare diseases, a prerequisite for any concerted policy response. The objectives of such a policy will best be implemented through the establishment of a national rare disease organisation, which can act as a nodal authority to increase capacity building in rare diseases. For instance, certain hospitals can be given resources to develop expertise in a set of related rare diseases. This organisation could serve as a repository of information to assist doctors and patients looking for expertise in particular rare diseases. It could also disseminate information to primary health-care workers in rural areas where there is little rare disease awareness. It could help in other, much-needed aspects of research such as collecting and analysing data on the incidence and prevalence of rare diseases in India and their geographic and socio-economic distribution.

If the Indian government is serious about its commitment to realise the rights of its citizens to universal and equitable health care, it cannot ignore rare diseases. Some State governments, such as Delhi, have established a panel to tackle rare diseases. However, any State-level intervention must be guided by a comprehensive national policy to ensure that the entire rare disease-aflicted community benefits.

(Shilpi Bhattacharya is with World Without GNE Myopathy (India). E-mail: wwgm.india@gmail.com)