The Rare Disease India Foundation has appealed to Union health minister Mansukh Mandaviya to address the gaps in providing life-saving treatment to those requiring it.
In a letter to Mr. Mandaviya, the Foundation has pointed out that on February 28, which is observed as Rare Disease Day the umbrella scheme of Rashtriya Arogya Nidhi (RAN) should be made available to all Group 3(a) patients with treatable conditions.
RDIF’s co-founder-director Saurabh Singh said the Union ministry currently provides under the scheme a one-time grant of Rs. 20 lakh to Group 1 patients. However, in the past several times the ministry had extended support to Group 3 (a) patients as well.
He suggested that the annual budgetary allocation of Rs. 25 crore under the RAN for 2021-22 that has not been spent could be immediately used to treat patients with diseases under Group (3) such as Gaucher, Pompe, Fabry disease and MPS I and MPS II.
He has sought a budgetary allocation of at least Rs.150 crore from the ministry to provide life-saving therapy to patients with Lysosomal Storage Disorders, for which Drug Controller General of India approved treatment is available for many years now. Mr. Singh suggested following the PM Cares model by encouraging and building PSU support.
Though the crowd funding platform https://rarediseases.nhp.gov.in went live seven months ago only Rs. 1,15,866 has been raised so far, an amount that is not sufficient to treat even one patient, he rued, adding that at least 236 patients are registered on the portal for treatment support. Many among them have been diagnosed with LSD, classified as Group (3) in National Policy for Rare Diseases.
The Policy had explained that definite treatment was available for Group 3(a) conditions. “In the absence of any government support for treatment, several patients, mostly children, have lost their lives in the interim period,” he wrote.
Conservatively, nearly 45 patients had died while awaiting treatment, he said adding that several developing economies such as Argentina, Brazil, Algeria and Egypt had robust reimbursement mechanism or had allocated funds from healthcare budget for the purpose.
