Patients suffering from rare diseases concerned due to expensive treatment

Bengaluru

Patients suffering from rare diseases are facing severe difficulties due to delays in receiving timely financial aid and rising treatment costs that exceed the limits set by the central government.

Around 7,000 rare diseases have been identified in the country, but only 5 percent of them have definitive treatments, while the remaining 95  percent require lifelong supportive care. To support affected individuals, the ministry of health provides free treatment and medicines up to Rs 50 lac per patient under the revised National Policy for Rare Diseases-2021. However, in most cases, the treatment costs exceed this limit within a short period, pushing families into financial distress.

Late diagnosis, lack of awareness, and limited treatment options make it difficult to identify patients. As a result, only 15,000 people have registered under  Ministry of Health’s database. Since treatment for these diseases requires significant financial resources,   government has also enabled donors to contribute towards patients’ medical expenses through a dedicated portal.

In Karnataka, 308 patients are receiving treatment at   Center for Human Genetics, which operates under Indira Gandhi Institute of Child Health.  

Diseases such as haemophilia, thalassemia, Pompe disease, Gaucher disease, and sickle cell anaemia are categorized as rare diseases. While the exact number of rare disease patients in Karnataka is unknown, the Center for Human Genetics estimates that around 12 lakh people in the state are affected. So far, around 40,000 patients have received treatment at the center.

My daughter has been diagnosed with Gaucher disease and was receiving treatment at the Center for Human Genetics. However, as financial aid has exceeded its limit, it has become difficult to procure the necessary medication. She requires medication once every 15 days, said the father of a 12-year-old girl, expressing his distress.