E-Paper
Haryana cabinet nod to monthly aid to rare disease patients
An official spokesperson said the scheme - ‘Financial Assistance to Persons Suffering from Rare Diseases’, comes as a response to the increasing prevalence of these diseases, and affecting families and communities across the state
The Haryana council of ministers on Wednesday approved a scheme offering monthly financial assistance of ₹2,750 to persons suffering from rare diseases.
An official spokesperson said the scheme - ‘Financial Assistance to Persons Suffering from Rare Diseases’, comes as a response to the increasing prevalence of these diseases, and affecting families and communities across the state. The National Policy for Rare Diseases 2021 identifies 55 rare diseases, causing undue financial strain and societal impact.
With an estimated 1,000 patients currently suffering from these rare diseases in Haryana, the government aims to alleviate the economic burden faced by affected individuals and their families.
This initiative was announced by the chief minister on May 11, 2023, at Yamunanagar.
The spokesperson said under this scheme, individuals suffering from rare diseases, and meeting the eligibility criteria will receive financial assistance of ₹2,750 per month which will be in addition to the benefit being availed under any other social security pension scheme by the applicant.
As per the 2021 national policy for rare disease, there is no universal or standard definition of rare disease. A disease that occurred infrequently is generally considered a rare disease. A country defines a rare disease most appropriate in the context of its own population, health care system and resources. India faces the limitation of lack of epidemiological data to be able to define rare diseases in terms of prevalence or prevalence rate, which has been used by other countries. To overcome this, a hospital based national registry for rare diseases has been initiated by Indian Council for Medical Research by involving centres that are involved in diagnosis and management of rare diseases. In the absence of epidemiological data on diseases considered as rare in other countries, it is not possible to prescribe threshold prevalence rates to define a disease condition as rare, says the policy.
As of now, certain groups of disorders identified and categorised by experts based on their clinical experience are described as rare disease. This included disorders amenable to one-time curative treatment such as hematopoietic stem cell transplantation, organ transplantation; disorders managed with special dietary formula or food for special medical purposes, disorders amenable to other forms of therapy like hormones or specific drugs, diseases for which definitive treatment is available but involve high cost and lifelong therapy.
Waiver of outstanding water charges approved
The cabinet on Wednesday approved a waiver of outstanding water charges, including surcharge and interest, amounting to about ₹374 crore. An official spokesperson said the move is aimed at providing relief to ₹28.87 lakh water connection holders in rural areas. However, this waiver does not extend to institutional, commercial, or industrial consumers falling under the public health engineering department.
Policy on eco-toursim development gets cabinet’s approval
The cabinet also approved a policy on development of eco-tourism with an aim to harness the state’s rich biodiversity, ecosystems, heritage monuments, and cultural diversity.
An official spokesperson said this initiative is a key step towards positioning Haryana as a premier eco-tourism destination, offering a harmonious blend of nature, culture, and community engagement. The government invites stakeholders, tourists, and nature enthusiasts to participate actively in realising the objectives of the eco-tourism Policy. The policy will focus on preserving state’s existing biodiversity, ecosystems, heritage monuments, culture, and traditions while promoting traditional ecological knowledge, and heritage values.
The policy emphasises the conservation of Haryana’s diverse landscapes, including two national parks, seven wildlife sanctuaries, two Ramsar wetland sites, two conservation reserves and five community reserves along with many a niche faunal habitat ecosystem including the old Aravalli hill range, Shivalik hills, rich biodiversity, dense forests, host of water bodies and scenic places. To facilitate eco-tourism activities, the forest and wildlife department has developed facilities at various locations in the state.
Transport inspectors get power to challans
The proposal to give powers to challan to transport inspectors under rule 225 of the Haryana Motor Vehicles Rules 1993 was also approved during the Cabinet meeting.
An official spokesperson said at present there were 114 positions for transport Inspectors with 66 officers already assigned to enforcement duties. These enforcement officers will be in addition to 22 DTO-cum-secretary RTA, 22 motor vehicle officers (enforcement), and 7 assistant secretary level officers.
Recognising the imperative need for expanded enforcement capacities, the Cabinet has approved that the powers to challan be extended to more transport inspectors. The transport inspectors will now exercise the authority to issue challans, in case directions are issued by the respective DTO-cum-Secretary RTA and with prior approval from the transport commissioner.
Amendments in Chowkidara (Watchman) Rules, 2013, approved
Amendments in Chowkidara (Watchman) Rules, 2013, to provide one-time financial assistance of ₹2 lakh to a ‘gramin chowkidar’ (watchman) after retirement were also approved by the Cabinet.
An official spokesperson said during a meeting held under the chairmanship of the chief minister a delegation of the ‘gramin chowkidars’ comprising Bhartiya Mazdoor Sangh and the state unit of gramin chowkidars had pressed for their demands.
One-time cash award for Air Marshal Manavendra Singh
The Cabinet approved a proposal to give a one-time cash award of ₹6.50 lakh for Param Vishisht Seva Medal (PVSM) awardee Air Marshal Manavendra Singh as a special case.
An official spokesperson said the veteran officer had been awarded PVSM by the President. The address of the officer at the time of joining the services on December 29, 1982, was Ludhiana in Punjab. His address at the time of the receiving of award on January 26, 2022, is Sector 2, Panchkula. Therefore, the Cabinet by giving a policy relaxation decided to release a grant of ₹6.50 lakh to the veteran Air Marshal.
Amendments in the Business of Haryana Government (Allocation) Rules 1974 get a nod
The Cabinet also approved amendments made in the Business of Haryana Government (Allocation) Rules 1974 pertaining to school education department.
An official spokesperson said the amendment was necessitated owing to separation of school education department from higher education department. The amendments aim to redefine the scope and responsibilities of the school education department, which is now officially distinct from the higher education counterpart.
