Appeal to Union Health Department to release funds to treat rare diseases

Rare Disease India Foundation wants unspent money to be used to treat patients with Group 3(a) diseases

Rare Disease India Foundation wants unspent money to be used to treat patients with Group 3(a) diseases

The Rare Disease India Foundation has called on Union Health Minister Mansukh Mandaviya to close the gaps in providing lifesaving treatment to those in need.

In a letter to Mr. Mandaviya, the Foundation stressed that on February 28, which is celebrated as Rare Disease Day, the Rashtriya Arogya Nidhi (RAN) umbrella program should be made available to all patients in the group. 3(a) with treatable diseases. .

RDIF Co-Founder-Director Saurabh Singh said that the Union Ministry is currently providing a one-time grant of Rs. 20 lakh to Group 1 patients under the scheme. On occasions, the ministry has also extended its support to group 3(a) patients.

He suggested that the annual budget allocation of Rs. 25 crore under the RAN for 2021-22 which has not been spent could be immediately utilized to treat patients with group (3) diseases such as Gaucher, Pompe, Fabry disease and MPS I and MPS II.

He has requested a budget allocation of at least Rs 150 crore from the ministry to provide life-saving therapy to patients with lysosomal storage disorder, for which treatment approved by the Comptroller General of Medicines of India has been available for many years. years now. Mr. Singh suggested following the PM Cares model of encouraging and building support from PSUs.

Although the crowdfunding platform went live seven months ago, only Rs. 1,15,866 has been raised so far, an amount which is not enough to treat even a single patient, he said, adding that at least 236 patients are registered on the treatment support portal. Many of them have been diagnosed with LSD, which is classified as Group (3) of the National Policy for Rare Diseases.

The policy explained that a defined treatment was available for group 3(a) conditions. “In the absence of any government support for the treatment, several patients, mostly children, have lost their lives in the meantime,” he wrote.

Conservatively, nearly 45 patients died while awaiting treatment, he said, adding that several developing economies such as Argentina, Brazil, Algeria and Egypt had a mechanism for robust reimbursement or had allocated funds from the health budget for this purpose.

Maria J. Book