Hyderabad: Aggressive brain tumours, severe lung infections and neuro-psychiatric disorders require expensive drugs which are not easily accessible to patients.
Described as ‘orphan drugs’ by the pharma industry they claim that the government must focus on adequate production of these drugs and also create a strong regulatory framework to encourage companies to produce these drugs.
The term ‘orphan drugs’ comes from the fact that the pharmaceutical agent required to treat aggressive brain tumours, lung infections and neuro-psychiatric disorders is rare. But with increasing diagnosis and also awareness among patients, the cases which were once considered rare are now seen frequently.
Dr P.V. Appaji, director general, Pharmexcil explained, “Earlier these rare diseases were termed orphan diseases and hence the drugs were also considered very rare. But now there is a strong need to encourage research and develop initiatives for such drugs as the numbers are surprisingly high.”
The Pharmaceuticals Export Promotion Council of India (Phar-mexcil) has called upon experts to come forward with suggestions which can be submitted to policy makers to come up with a strong regulatory framework.
This move has come in the wake of definite policy guidelines in the country to regulate ‘orphan drugs.’ Industry feels that the untapped market will have scope not only at the domestic level but also overseas.
Most patients who suffer these rare diseases have to get their medicines from abroad or depend on a supplier who will source the drugs from the local market, experts said.
A good regulatory framework would help the industry ensure that there is adequate production of the medicines which can then be properly supplied through existing channels to required patients.
Dr Ram Krishna, senior neurologist of Osmania General Hospital explained, "The diseases are not very common and hence most patients are upset with the diagnosis. Added to this, if the required medicines are not available then the agony merely makes the disease worse."
