National Policy for Rare Diseases, 2021

Rare Diseases: WHO defines a rare disease as a lifelong disease or disorder that often highly weakens an individual. It has a prevalence of 1 or less per 1000 population.

• Example: Haemophilia, Thalassemia, Sickle cell anaemia, auto-immune diseases among others.
• However, every country has its own definition for rare diseases.
• The US defines rare diseases as a disease or condition that affects fewer than 200,000 patients in the country.
• Likewise, the EU defines rare diseases as life-threatening or chronically debilitating (weakening) conditions. It should affect no more than 5 in 10,000 people.

About National Policy For Rare Diseases,2021:

• Aim: The policy aims to lower the incidence and prevalence of rare diseases based on an integrated and comprehensive preventive strategy.
• The strategy includes awareness generation, counselling programmes, providing affordable Health Care among others.

Key Features of the National Policy For Rare Diseases, 2021:

• Categorisation: The policy categorizes rare diseases into three groups:
  • Group 1: Disorders amenable to one-time curative treatment;
  • Group 2: Diseases requiring long term or lifelong treatment; and
  • Group 3: Diseases for which definitive treatment is available, but challenges are to make an optimal patient selection for benefit.
• Government Support:
  • The government will provide Financial support of up to Rs. 20 lakh under the Umbrella Scheme of Rashtriya Arogya Nidhi for treatment of those rare diseases listed under Group 1.
  • Moreover, Beneficiaries for such financial assistance would not be limited to BPL families.
    • About 40% of the population, eligible under Pradhan Mantri Jan Arogya Yojana, will also be eligible for assistance.
  • For group 2, the State Governments can consider supporting specific patients.
    • It includes a rare disease that can be managed with special diets or hormonal supplements or other relatively low-cost interventions (Diseases listed under Group 2).
• Voluntary Crowdfunding: The government has said that it will assist in voluntary crowd-funding for the treatment of Group 3. It is because it will be difficult to fully finance the treatment of high-cost rare diseases of Group 3.

Rashtriya Arogya Nidhi scheme:

• It provides financial assistance to patients living below the poverty line and who are suffering from major life-threatening diseases, to receive medical treatment.

National Policy for Rare Diseases, 2021

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.

Initiatives for treatment support for patients of rare diseases under the Policy are as follows: -

• 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 (diseases 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.
• 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 (Diseases listed under Group 2).
• Keeping in view the resource constraints, and a compelling need to prioritize the available resources to get maximum health gains for the community/population, the Government will endeavour to create alternate funding mechanism through setting up a digital platform for voluntary individual and corporate donors to contribute to the treatment cost of patients of rare diseases.
• Voluntary crowd-funding for treatment: Keeping in view the resource constraint and competing health priorities, it will be difficult for the Government to fully finance 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/ contribution through 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 utilized for treatment of patients suffering from rare diseases, especially those under Group 3. Conferences will be organized with corporate sector companies to motivate them to donate generously through digital platform. 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 in the Schedule for CSR activities.

Treatment cost of the patient will be first charge on this fund. Any leftover fund after meeting treatment cost can be utilized for research purpose 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 specialty facilities / Government tertiary hospitals is 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 Rupees 25 Crore.

National Policy for Rare Diseases, 2021 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 Department of Health Research (DHR) with ICMR as a member.

National Monetization Pipeline

• In the Union Budget 2021-22, the Finance Minister announced the National Monetization Pipeline.
• The National Monetisation Pipeline comprises a four-year pipeline of the Central Government's brownfield infrastructure assets.
• The Union Finance Minister announced launch of a “National Monetization Pipeline” of potential brownfield infrastructure assets stating that Monetizing operating public infrastructure assets is a very important financing option for new infrastructure construction.
• As part of the National Monetization pipeline, assets created by PSUs such as NHAI, PGCIL, Railways etc. would be sold and money raised would then be used for the creation of new infrastructure assets.
• Presently, we have around 2 publically listed InVITs ( IRB InVIT and India Grid) both of which have been sponsored by private companies. Now, the PGCIL has become the first PSU in India to sponsor its own InVIT to monetize its assets.
• The Minister informed that an Asset Monetization dashboard will also be created for tracking the progress and to provide visibility to investors.
• The National Monetisation Pipeline will serve as a medium-term roadmap for the Asset Monetisation initiative of Centre, besides providing visibility to the investors.

Some important measures in the direction of monetisation are as follows:

• National Highways Authority of India and PGCIL each have sponsored one InvIT that will attract international and domestic institutional investors. Five operational roads with an estimated enterprise value of Rs.5,000 crore are being transferred to the NHAIInvIT. Similarly, transmission assets of a value of Rs. 7,000 crores will be transferred to the PGCILInvIT.
• Railways will monetize Dedicated Freight Corridor assets for operations and maintenance, after commissioning.
• The next lot of Airports will be monetised for operations and management concession.
• Other core infrastructure assets that will be rolled out under the Asset Monetization Programme are:

1. NHAI Operational Toll Roads
2. Transmission Assets of PGCIL
3. Oil and Gas Pipelines of GAIL, IOCL and HPCL
4. AAI Airports in Tier II and III cities,
5. Other Railway Infrastructure Assets
6. Warehousing Assets of CPSEs such as Central Warehousing Corporation and NAFED among others and
7. Sports Stadiums.

Infrastructure Investment Trust (InvITs) Infrastructure and real estate are the two most critical sectors in any developing economy. A well-developed infrastructural set-up propels the overall development of a country. It also facilitates a steady inflow of private and foreign investments, and thereby augments the capital base available for the growth of key sectors in an economy, as well as its own growth, in a sustained manner. Given the importance of these two sectors in the country and the paucity of public funds available to stimulate their growth, it is imperative that additional channels of financing are put in place. An Infrastructure Investment Trust (InvITs) is a Collective Investment Scheme similar to a mutual fund, which enables direct investment of money from individual and institutional investors in infrastructure projects to earn a small portion of the income as a return. The InvIT is designed as a tiered structure with the Sponsor setting up the InvIT which in turn invests into the eligible infrastructure projects either directly or via special purpose vehicles (SPVs). The InvITs are regulated by the SEBI (Infrastructure Investment Trusts) Regulations, 2014.

SAMPANN Project

• SAMPANN – ‘System for Accounting and Management of Pension’ is an ambitious project of the Government of India being implemented by the Controller General of Communication Accounts, Department of Telecommunications, Ministry of Communications.
• It was dedicated to the nation by Prime Minister Shri Narendra Modi on 29th December 2018.
• It is a seamless online pension processing and payment system for Department of Telecommunications pensioners.
• It provides direct credit of pension into the bank accounts of pensioners.
• The system has helped the Department in faster settlement of pension cases, improved reconciliation/auditing and ease of accounting.
• SAMPANN has also been instrumental in settling close to 76000 BSNL Voluntary Retirement Scheme 2019 cases in a short span of 6 months.
• SAMPANN is a system with a flexible design which enables it to accommodate ever-expanding requirements.
• More than One Lakh pensioners are currently being serviced by Principal Controller of Communication Accounts/ Controller of Communication Accounts offices all over India via SAMPANN which has improved the service delivery to pensioners by providing a single window setup ensuring the following benefits:
  • Timely settlement of pension cases
  • Provision of e-Pension Payment Order
  • Login for each pensioner enables access to key information like payment history
  • Online submission of grievances and timely SMS alerts.

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