More funds sought for rare diseases patients

Bengaluru: The Organisation for Rare Diseases India (ORDI) organised a round table here on Friday to attract the attention of the state government on the plight of patients awaiting treatment.

“The state had released Rs 4 crore last year for the treatment of patients suffering from rare diseases and they have benefitted from it. We are now waiting for funds for the next year, which will help another set of 12 patients,” said Prasanna Shirol, co-founder, executive director, ORDI.

“After a PIL was filed, the Karnataka High Court directed the government to provide funds for treatment of rare diseases patients. The initial allotment has helped and the treatment has impacted the life of patients positively. We appeal to the government to release further funds to treat all the patients, adding value to their lives. Since the treatment of rare diseases, specifically LSDs, is very expensive, majority of the patients cannot afford it. The government’s intervention is necessary. We have already lost two children who were waiting for treatment.”

Dr Meenakshi Bhat, Consultant in Clinical Genetics, Professor, Centre for Human Genetics, said, “Enzyme Replacement Therapy (ERT) is the established treatment for LSDs and works by replacing the missing enzyme in the affected cells. Unfortunately, it is expensive and cannot be afforded by a majority of patients, which makes them get delayed or no treatment. The lack of timely and appropriate treatment hampers their daily lives, making them unable to conduct routine activities. Measures need to be adopted to ensure that the treatment is accessible for all.”

Advocate Ashok Agarwal, a social jurist, said, “Health being a state subject, the states should have their individual policies. The Karnataka government has already taken a step in drafting the policy, but its implementation is still awaited.

Under the National policy, a Rs 100 crore has been allocated and now it is the states’ responsibility to request for funds from it for the treatment of rare diseases. With the Karnataka policy on its way, the funds need to be requested without further loss of time.”

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