BENGALURU: Terming the draft national policy on rare diseases “unscientific”, the Organization for Rare Diseases India (ORDI) urged the Centre to make a budgetary allocation of Rs 400-600 crore for the treatment of such diseases and remove the Rs 15-lakh cap on the treatment cost.In its list of 15 recommendations sent to the Ministry of Health and Family Welfare in response to the draft policy which the Union government came out on January 13 inviting inputs from the public, the Bengaluru-based not-for-profit sought disease-specific financial packages, waiver of GST and import duty on essential drugs and medical devices.
“The draft policy does not speak about the central government covering the treatment cost of rare diseases and only depends on crowd funding which is not sustainable when the treatment runs into crores each year per patient. The earlier draft included a cost sharing between the state and the centre in 40:60 ratio which has been removed from the new draft,” ORDI co-founder and executive director Prasanna Shirol said.
ORDI urged the ministry to create a rare diseases fund and share the cost of treatment with the state government in 60:40 ratio. There should be centres for treatments in every state and a national treatment centre, it recommended, adding that state and central technical committees should meet annually and take stock of rare diseases, drug price and therapies.
It also demanded a clear definition of rare diseases and called out the policy for its “unscientific and biased way of randomly selecting a few diseases to be covered.” The organisation recommended putting orphan drugs (intended for treatment of life-threatening rare diseases) under price control. There must be a healthcare coverage for rare diseases, including recurring supportive treatment which is highly expensive, it advised.
“The lack of insurance coverage must change... It is unclear whether patients can avail assistance of multiple schemes such as Rashtriya Arogya Nidhi or Ayushman Bharat or both. There is no coverage for outpatient services,” it said.The organisation urged that the government encourage research and development for diseases which do not have any approved therapies.
“The policy must include pre-natal screening of high risk pregnancies and new born screenings which can identify rare diseases in the first few days of baby’s life and result in life-saving changes,” the submission explained, also urging the government to create awareness among clinicians, supportive care personnel and make special medical foods and special wheelchair affordable and available to patients.