- Centre’s announcement providing full exemption from basic customs duty for all drugs and food imported for treatment of rare diseases listed under the National Policy for Rare Diseases.
What are rare diseases?
- Definition-The World Health Organization defines it as any debilitating lifelong disease or disorder with a prevalence of ten or fewer per 10,000 populations; other countries follow standards ranging between 1 and 10 cases per 10,000 to define a condition as a rare disease.
- Few people affected- Rare diseases as the name suggests are conditions that affect very few people. There are about 7,000 to 8,000 conditions globally that have been defined as rare diseases.
- Difficult to diagnose and test- With limited experience of these diseases, they are extremely difficult to diagnose and more difficult to test for.
Why are drugs for rare diseases so expensive?
- Not a good market for drugs- With a very small number of people suffering each of the 7,000- 8,000 rare conditions, they do not make a good market for drugs.
- Lack of research-Most pharmaceutical companies is reluctant to spend on research for treatments of the disease.
- No domestic manufacturers- At present, very few pharmaceutical companies are manufacturing drugs for rare diseases globally and there are no domestic manufacturers in India.