The government has finalised National Policy for Rare Diseases, 2021 and put in the public domain, The Union Minister of State for Health and Family Welfare, Dr Bharati Pravin Pawar informed the Lok Sabha today.
According to Dr Pawar, the policy aims at lowering the incidence and prevalence of rare diseases based on an integrated and comprehensive preventive strategy encompassing awareness generation, premarital, post-marital, pre-conception and post-conception screening and counselling programmes to prevent births of children with rare diseases, and within the constraints on resources and competing health care priorities, enable access to affordable health care to patients of rare diseases.
He added that the policy provides for National Consortium for Research and Development on therapeutics for Rare Diseases with an expanded mandate to include research & development, technology transfer and indigenization of therapeutics for rare diseases. It will be convened by the Department of Health Research (DHR) with ICMR as a member.
Delving on specifics, MoS informed that the initiatives for treatment support for patients of rare diseases under the Policy are financial support up to Rs 20 lakhs under the Umbrella Scheme of Rashtriya Arogaya Nidhi shall be provided by the central government for treatment, of those rare diseases that require a one-time treatment listed under Group 1. Beneficiaries for such financial assistance would not be limited to BPL families, but extended to about 40% of the population, who are eligible as per norms of Pradhan Mantri Jan Arogya Yojana, for their treatment in government tertiary hospitals only.
Also, state governments can consider supporting patients of such rare diseases that can be managed with special diets or hormonal supplements or other relatively low-cost interventions listed under Group 2. Keeping in view the resource constraints, and a compelling need to prioritise the available resources to get maximum health gains for the community or population, the government will endeavour to create an alternate funding mechanism by setting up a digital platform for voluntary individual and corporate donors to contribute to the treatment cost of patients with rare diseases.
Keeping in view of the resource constraint and competing health priorities, he said that it will be difficult for the government to fully finance the treatment of high-cost rare diseases. The gap can however be filled by creating a digital platform for bringing together notified hospitals where such patients are receiving treatment or come for treatment, on the one hand, and prospective individual or corporate donors willing to support treatment of such patients. The notified hospitals will share information relating to the patients, diseases from which they are suffering, estimated cost of treatment and details of bank accounts for donation or contribution through the online system. Donors will be able to view the details of patients and donate funds to a particular hospital.
This will enable donors from various sections of the society to donate funds, which will be utilised for the treatment of patients suffering from rare diseases, especially those under Group 3. Conferences will be organised with corporate sector companies to motivate them to donate generously through digital platforms. The Ministry of Corporate Affairs will be requested to encourage PSUs and corporate houses to contribute as per the Companies Act as well as the provisions of the Companies (Corporate Social Responsibility Policy) Rules, 2014 (CSR Rules). Promoting health care including preventive health care is included in the list the Schedule for CSR activities. The treatment cost of the patient will be the first charge on this fund. Any leftover fund after meeting treatment costs can be utilised for research purposes also.
At present financial assistance to poor patients, living below threshold poverty line and also to the population, who are eligible as per norms of Pradhan Mantri Jan Arogya Yojana under Ayushman Bharat, suffering from specified rare diseases for their treatment at Government Hospitals or Institutes having super speciality facilities or government tertiary hospitals are being provided under the Umbrella Scheme of Rashtriya Arogya Nidhi (RAN). The budget allocation for the current financial year 2021-2022 for rare diseases is Rs 25 Crore.