PUNE: Although the State and Centre is spending crores of rupees on advertisements regarding various health schemes, the State Technical Committee (STC) to cater to patients suffering from rare diseases is yet to be formulated. Interestingly, last year, the Ministry of Health and Family Welfare (MOHFW) had issued directives to state governments to make a rare disease cell to cater to such patients.
Since the cost incurred by patients is huge, State government was expected to create a corpus to ensure benefits to these patients. However, neither has the STC been formulated nor any budgetary allocation been made for it.
In September 2017, a Central Technical Committee (CTC) at the ministry level was formed under the ‘National Policy for Treatment of Rare Diseases’. This committee, under the chairmanship of Directorate General of Health Services (DGHS), has six members.
The Delhi High Court, in its order dated August 11, has directed the Ministry of Health and Family Welfare (MOHFW) to constitute an Inter-Ministerial Consultative Committee to coordinate and steer the initiative of different ministries and departments on rare diseases as laid out in the National Policy on Rare Diseases in India.
Accordingly, on November 2, 2017, MOHFW passed an order clearly stating that it will constitute an administrative and technical committee at Central as well as State levels, for management of corpus funds. It would also develop technical guidelines and the criteria for which rare diseases are to be funded, review of treatment, etc.
Speaking about the state technical committee in Maharashtra, Dr Nitin Ambadekar, Joint Director at the State Health Department said that proposal for the State technical committee in Maharashtra is still with the state government. “The STC is yet to be formed. However, we are taking continuous follow-up. A lot of things need to be adopted from the Central government. There has to be budget allocation and funds have to be made available, which means there is more than one department involved in it and hence it is taking time. Once, it is formed, STC will decide which diseases are to be included in the rare disease cell,” said Ambadekar.
The GOI is also to set up an initial fund of Rs 100 crore for funding treatment of genetic diseases. The State shall also have a similar corpus at the state level and the GOI will contribute funds towards the State corpus in the ratio of 60:40.
Moreover, the order clearly underlines that the corpus fund will be dedicated for rare disorders. However, it will not fund treatment for blood disorders like Hemophilia, Thalassemia and Sickle-cell Aneamia as separate government programmes already exist for them.
The order also states that the International Classification of Diseases (ICD-11) by the World Health Organization (WHO) classifies about 5,000 rare diseases.
The directives by the Centre also mention that it has to create patients registry with information to practitioners and a reporting system of any patient diagnosed with rare diseases. All of which will be housed in Indian Council of Medical Research (ICMR).
WHAT IS RARE DISEASE?
- According to National Policy for Treatment of Rare Diseases, a rare disease is a health condition of low prevalence that affects a small number of people compared with other prevalent diseases in the general population. It is estimated that globally around 6,000 to 8,000 rare diseases exist with new rare diseases being reported in the medical literature regularly. However, 80 per cent of all rare disease patients are affected by approximately 350 rare diseases.
- So far, about 450 rare diseases have been recorded in India. Rare diseases are, in most cases, serious, chronic, debilitating and life threatening illnesses, often requiring long-term and specialised treatments/management. In addition, they often result in some form of handicap, sometimes extremely severe. Moreover, they disproportionately impact children, 50 pc of new cases are in children and are responsible for 35 pc of deaths before the age of one year, 10 pc between the ages of 1 and 5 years and 12 pc between 5 and 15 years. The impact on families is often catastrophic at emotional and financial levels, as the cost of treatment is very high.
- A few examples of diseases that may fall in this category include Haemophilia, Thalassemia, Sickle-cell Anaemia and Primary Immuno Deficiency in children, auto-immune diseases, lysosomal storage disorders such as Pompe disease, Hirschsprung disease, Gaucher’s disease, cystic fibrosis, haemangiomas and certain forms of muscular dystrophies.