Rare diseases may affect only a small percentage of India’s population – but because the population numbers more than 1.3 billion, this still adds up to a large number of people.
Seven crore (70 million) Indians suffer from over 14,000 identified rare diseases. This huge burden of rare, often complex and difficult to diagnose diseases has led to the passing of the National Policy for the Treatment of Rare Diseases. The bill was passed on 25 May, but has been in the works since 2009.
There are still numerous challenges ahead for the effective treatment of the population suffering from these diseases. Research into rare conditions must be increased according to the All India Institute for Medical Sciences (AIIMS).
Doctors at AIIMS note that many of the rare conditions are chronic and cause significant decreases in the life quality of those suffering from them. I.C. Verma, Head of Genetic Medicine, Sir Ganga Ram Hospital says that, “Tremendous progress has been made towards developing new therapies, which has drastically improved patients’ quality of life. A greater understanding of the underlying biology of the disease would enable researchers to develop more targeted therapies,”
Experts say that a potential 50 percent of those afflicted with rare diseases such as Gaucher Syndrome, Hunter Syndrome and Pompe are children. . They also claim that due to a lack of diagnosis, or ineffective treatment, 70 percent may die by the age of seven.
Many of the conditions will be rare diseases native to tropical climates and may also be more prevalent in rural areas. This may mean a number of diseases are simply slipping under the radar. Many more diseases that are documented and known to doctors will also slip by due to a lack of access to healthcare in rural regions.
The National Policy for the Treatment of Rare Diseases has suggested the allocation of Rs 100 crore for the treatment of genetic disorders, though this budget excludes blood disorders like Thalassemia and sickle-cell anaemia. States have also been accused of dragging their feet when it comes to the implementation of policy for rare conditions. Rajasthan, for example, has had a policy in the works since 2015 which is still yet to be drafted into law.
More attention is being paid to rare diseases, the Indian Council for Medical Research put out a proposal for a national registry of rare conditions. This would allow for a more comprehensive analysis of the conditions, along with the numbers affected. This may translate into more research and funding allocated to tackle the diseases. Though their uncommon nature may continue to put them at a low place on the government’s priority list, especially at a time when infectious disease remains common and non-communicable conditions are showing a sharp rise.