More focus needed on rare diseases, says Kodela

‘Timely and proper diagnosis is key to effective treatment’

Speaker Kodela Sivaprasada Rao (second from right) going through the newsletter of Indian Organisation for Rare Diseases at the national conference on rare diseases in Vijayawada on Sunday. —Photo: Ch. Vijaya Bhaskar

Speaker Kodela Sivaprasada Rao has stressed the need for a national policy on rare diseases and greater amount of research to save those suffering from debilitating ailments. He has called upon pharmaceutical companies to come forward to manufacture drugs for rare diseases on a larger scale though it might not be an attractive business proposition.

Participating as chief guest in the national conference on ‘rare diseases- raising awareness’ organised by Andhra Pradesh Medical Council (APMC) and Indian Organisation for Rare Diseases (IORD) here on Sunday, Mr. Sivaprasada Rao said timely and proper diagnosis was important for doctors to deal with the diseases effectively but most of them lack awareness due to which some tend to wash their hands off by doing a routine examination of patients.

On their part, pharmaceutical companies could reduce the suffering of patients by bringing down the cost of drugs that cater to the rare diseases, with due emphasis on development of orphan drugs.

In his speech as the guest of honour, NTR University of Health Sciences Vice-Chancellor T. Ravi Raju said the concept of rare diseases has to be taught extensively in medical colleges to spread awareness among the students.

Exorbitant costs

Out of 400–plus drugs identified by the US Food and Drug Administration as essential medicines for treating rare diseases, only about 30 were available in India necessitating their procurement at exorbitant costs, he added.

IORD president Ramaiah Muthyala said the focus was more on diseases like diabetes and heart attack (known as myocardial infarction in medical parlance). As a consequence, little attention was paid to rare diseases like thalassemia and hemophilia which were curable.

Patient advocacy groups needed support to take care of those who are either crippled for life or have their productive years wiped off by the diseases, he observed.

New Zealand Organisation for Rare Disorders president John Forman, Canadian Organisation for Rare Disorders president Durhane Wong-Rieger, APMC Chairman Y. Raja Rao, IORD office-bearers K. Gayathri and Srinath Buragadda and organising panel chairman Venkat Jasti and secretary K. Pattabhi Ramaiah were present.