EDITORIALS & ARTICLES
5th April 2021
National Policy for Rare Diseases 2021
Recently, the Union Minister of Health & Family Welfare has launched the National Policy for Rare Diseases 2021.
- The Government of India has formulated a National Policy for Treatment of Rare Diseases (NPTRD) in July, 2017.
- The Public Health and Hospitals is primarily a State subject and a limiting factor in its implementation was bringing States on board and lack of clarity on how much Government could support in terms of tertiary care.
- The policy had implementation challenges and gaps, including the issue of cost effectiveness of supporting which made it not feasible to implement.
- An Expert Committee was constituted by Ministry of Health and Family Welfare in November, 2018 to review the NPTRD, 2017.
Key Highlights of National Policy for Rare Diseases 2021
- The Centre of Excellence (CoE) will be provided one-time financial support of up to Rs 5 crores for upgradation of diagnostics facilities.
- A provision for financial support up to Rs. 20 lakhs under the Umbrella Scheme of Rashtriya Arogya Nidhi is proposed for treatment.
- The beneficiaries for such financial assistance would not be limited to BPL families, but the benefit will be extended to about 40% of the population, who are eligible under Pradhan Mantri Jan Arogya Yojana.
- It will cover about 40 per cent of the population who are eligible under the Pradhan Mantri Jan Arogya Yojana.
- The policy envisages creation of a national hospital based registry of rare diseases so that adequate data is available for definition of rare diseases and for research and development.
Significance of National Policy for Rare Diseases 2021
- The policy aims to lower the high cost of treatment for rare diseases with increased focus on indigenous research with the help of a National Consortium.
- The increased focus of research and development and local production of medicines will lower the cost of treatment for rare diseases.
- It focuses on early screening and prevention through primary and secondary health care infrastructure such as Health and Wellness Centres and District Early Intervention Centres (DEICs).
- It aims to strengthen tertiary health care facilities for prevention and treatment of rare diseases through designating 8 health facilities as Centre of Excellence.
- It envisages a crowd funding mechanism in which corporates and individuals will be encouraged to extend financial support through a robust IT platform for treatment of rare diseases.
- The funds so collected will be utilised by Centres of Excellence (CoEs) for treatment of all three categories of rare diseases as first charge and then the balance financial resources could also be used for research.
Need for National Policy for Rare Diseases 2021
- The field of rare diseases is very complex and heterogeneous and prevention, treatment and management of rare diseases have multiple challenges.
- The early diagnosis of rare diseases is a major challenge owing to a variety of factors that include lack of awareness among primary care physicians, lack of adequate screening and diagnostic facilities etc.
- There are fundamental challenges in the research and development for the majority of rare diseases as relatively little is known about the pathophysiology or the natural history of these diseases.
- The rare diseases are also difficult to research upon as the patients’ pool is very small and it often results in inadequate clinical experience.
- The availability and accessibility to medicines are also important to reduce morbidity and mortality associated with rare disease.
Sankalp se Siddhi
Recently, the Ministry of Tribal Affairs has launched the ‘Sankalp se Siddhi’.
Sankalp se Siddhi
- It is an initiative of Tribal Cooperative Marketing Development Federation Ltd (TRIFED), Ministry of Tribal Affairs.
- It is a Village and Digital Connect Drive.
- It is a 100 day drive which will entail 150 teams (10 in each region from TRIFED and State Implementation Agencies/Mentoring Agencies/Partners) visiting ten villages each.
- The 100 villages in each region and 1500 villages in the country will be covered in the next 100 days.
- The primary objective Sankalp se Siddhi is to activate the Van Dhan Vikas Kendras in these villages.
- It is expected that Sankalp Se Siddhi will aid in effecting a complete transformation of the tribal ecosystem across the country.
Frequent Forest Fires in India
Recently, Uttarakhand has witnessed over 1,000 incidents of forest fire over the last six months, including 45 in the last 24 hours alone.
Incidents of Forest Fires in India
- The January month saw prolonged fires in Uttarakhand, Himachal Pradesh (Kullu Valley) and Nagaland-Manipur border (Dzukou Valley).
- The Simlipal National Park in Odisha saw a major fire between February-end and early March.
Why Indian Forests are prone to fire?
- According to the India State of Forest Report 2019 (ISFR), about 21.67% (712,249 sq km) of the country’s geographical area is identified as forest.
- The tree cover makes up another 2.89% (95, 027 sq km).
- The Forest Survey of India (FSI) has stated that the forests of the Northeast and central India regions are the most vulnerable areas to forest fires.
- The forests in Assam, Mizoram and Tripura have been identified as ‘extremely prone’ to forest fire.
- The states with large forest areas under the ‘very highly prone’ category include Andhra Pradesh, Manipur, Meghalaya, Mizoram, Nagaland, Odisha, Maharashtra, Bihar and Uttar Pradesh.
- The Western Maharashtra, Southern Chhattisgarh and areas of Telangana and Andhra Pradesh, along with central Odisha, are turning into ‘extremely prone’ forest fire hotspots.
- The areas under the ‘highly prone’ and ‘moderately prone’ categories make up about 26.2% of the total forest cover.
Causes of Forest Fires
- It can be caused by a number of natural causes, but officials say many major fires in India are triggered mainly by human activities.
- The emerging studies link climate change to rising instances of fires globally, especially the massive fires of the Amazon forests in Brazil and in Australia in the last two years.
- The fires of longer duration, increasing intensity, higher frequency and highly inflammable nature are all being linked to climate change.
- In India, forest fires are most commonly reported during March and April, when the ground has large quantities of dry wood, logs, dead leaves, stumps, dry grass and weeds.
- Under natural circumstances, extreme heat and dryness, friction created by rubbing of branches with each other also have been known to initiate fire.
Forest fires difficult to control - Why?.
- The locality of the forest and access to it pose hurdles in initiating firefighting efforts.
- The timely mobilisation of forest staff, fuel and equipment, depending on the type of fire, through the thick forests remain challenges.
- It is impossible to transport heavy vehicles loaded with water into the thick forests.
- The wind speed and direction play a critical role in bringing a forest fire under control.
What factors make forest fires a concern?
- The forests play an important role in mitigation and adaptation to climate change and they act as a sink, reservoir and source of carbon.
- In India, with 1.70 lakh villages in close proximity to forests (Census 2011), the livelihood of several crores of people is dependent on fuelwood, bamboo, fodder, and small timber.
- The forest fires can have multiple adverse effects on the forest cover, soil, tree growth, vegetation, and the overall flora and fauna.
- The fires render several hectares of forest useless and leave behind ash, making it unfit for any vegetation growth.
- The soil quality decreases with the alteration in their compositions and soil moisture and fertility, too, is affected.
Efforts to protect forests from fire
- In 2004, the FSI developed the Forest Fire Alert System to monitor forest fires in real time.
- In its advanced version launched in January 2019, the system now uses satellite information gathered from NASA and ISRO.
- The real-time fire information from identified fire hotspots is gathered using MODIS sensors (1km by 1km grid) and electronically transmitted to FSI.
Haryana Assembly amended rules for conduct of business
Recently, Haryana has amended several provisions under its Rules of Procedure and Conduct of Business in the Legislative Assembly of the state.
New Rules in the amended provisions
- In Rule 76, a new provision has been added, according to which during every sitting of the House, presence of at least two ministers is a must.
- It was not maintained at times during discussion on certain Calling Attention Motions or other Business of the House.
- A new provision has been added, according to which the members “shall not tear off documents in the House in protest” in order to maintain decorum of the House.
- The Sub-Rule 46(11) that deals with Questions asked by the Members during the sitting of the House has been substituted.
- The new Sub-Rule states that the question shall not contain more than 150 wordsin any case either typed or handwritten on one side of the page.
- It has been done to have better clarity for the Ministers to give a specific reply to the query raised by the Member.
- A new provision has been added regarding Supplementary Questions which states that a supplementary question shall be held out of order by the Speaker if, in his opinion:
- It does not arise from the main Question or its answer;
- Instead of seeking information, it gives information;
- It seeks confirmation or denial of an opinion; and
- It infringes any of the rules regarding question.
New definition for Leader of the Opposition
- The new rules define Leader of Opposition as:
- Leader of a Legislative Party having the largest number of members other than the party/parties that has formed the government;
- The parties having the strength at least equal to the strength of the quorum of the House and recognised as such by the Speaker.
- It is subject to that if more than one party has got equal number of members competing for recognition, the number of votes polled to the which has polled more number of votes in the Assembly elections, shall be recognised as the official opposition and its leader as the Leader of the Opposition.
- It provided further that if the total number of votes polled to both the groups equal, then the Office of the Leader of the Opposition shall be held alternatively and the order in which they will hold Office shall be decided by draw of lots.
Amended Rule for protocol violation enquiry
- The Rule 297-A has been added by the amended provisions which states that:
- Any violation of the Instructions of the State Government and Instructions issued by the Department of Personnel Training, Central Government adopted by the State or any direction of the Speaker issued from time to time on observance of protocol and courtesies in dealing with the Members of the House shall be taken up by the Committee of Privileges for examination and Report.
Amended Rules pertaining to Ministers
- The Rule 204 (1) deals with members of the Committee of the Assembly.
- It says that the members of a Committee of the Assembly shall be appointed by the Assembly on a motion made, or nominated by the Speaker, as the case may be.
- A provision has been added under this Rule, which reads that:
- Provided that a Minister shall not be nominated as a member of the Committee except Business Advisory Committee and in case a member of the Committee is appointed as a Minister, he/she shall cease to be the member of the Committee from the date of such appointment.
Mukhya Mantri Chiranjeevi Swasthya Bima Yojana (MMCSBY)
Recently, the Rajasthan government has launched the registration process for its ambitious Mukhya Mantri Chiranjeevi Swasthya Bima Yojana (MMCSBY).
Mukhya Mantri Chiranjeevi Swasthya Bima Yojana (MMCSBY)
- It is the flagship scheme for providing universal health coverage in the state.
- Under the scheme, each family in the state is entitled to health insurance cover of Rs 5 lakh every year in all government hospitals and select private facilities.
- It is a cashless treatment for all which is aimed at providing medical relief to all residents of Rajasthan.
- It covers 1,576 packages and procedures for treatment of various diseases, and expenses for medical consultation, tests, medicine five days before admission and 15 days after discharge.
- Under the scheme, the state will provide health coverage up to Rs 50,000 for common ailments and up to Rs 5 lakh for more serious diseases.
- It is a part of ‘Rajasthan Model of Public Health’ (RMPH), under which a Right to Health Bill will be brought.
- The applicants who will be applying for Health Insurance under Rajasthan Government have to pay only 850 Rupees annually and after that they can avail the benefits.
- The eligibility under the scheme is NFSA Card Holder, SECC 2011 Registered Family, All Department Samvida Worker, Small Farmers and All other Family.
- The beneficiaries will be able to get cashless treatment from community health centres, district hospitals, satellite hospitals, hospitals attached to medical colleges, hospitals run by Centre such as AIIMS, railway hospitals and private hospitals empaneled with the health insurance scheme.
Chenab Arch Bridge
Recently, the project managers have announced that the half-a-kilometre long arch of the Chenab Bridge is all set to be completed.
- At present, the Kashmir link means a 25-km stretch from Udhampur to Katra, an 18-km stretch from Banihal to Qazigund in the Valley and thereafter the 118-km Qazigund to Baramulla line.
- The only missing piece in the link is the Katra-Banihal stretch, and the bridge over Chenab was the main engineering hurdle holding up the progress all these years.
- The bridge is part of an ambitious 272-km rail link project and is being constructed by the Northern Railway at an estimated cost of ₹28,000 crore.
Chenab Arch Bridge
- It is a 1.3 km-long bridge that is being built across the Chenab River.
- It is being constructed at a height of 359 metres from the riverbed.
- It will be at a height 35 meters more than the Eiffel Tower in Paris and at five times the height of the Qutab Minar in Delhi.
- It is being built on the Katra-Banihal railway line at village Kauri in the Reasi district.
- The bridge forms the crucial link in the 111-km stretch between Katra and Banihalwhich is part of the Udhampur- Srinagar-Baramulla section of the Kashmir Railway project.
- It is the seventh-largest arch-shaped bridge in the world as there is no support except on both sides of the river banks.
- The bridge will be able to withstand earthquakes with a magnitude of up to eight and high-intensity blasts.
Concerns associated with Chenab Arch Bridge
- It has been mired in controversy since its inception because it is bang in the middle of Seismic Zone IV.
- It is nestled in the young, folding Himalayas and making it a tough call for railway engineers.
- The biggest challenge was that the 550-meter arch, weighing 10,000 metric tons, had to stand only with the support from the two embankments and without any intermediate pier.
- A lot of precision artisanal work is also required because of which workers need to scale the heights with safety gear and perform the various jobs.
Chenab River
- It is the river of the Indian subcontinent in northwestern India and northeastern and eastern Pakistan.
- It is formed by the confluence of two streams i.e. Chandra and Bhaga, in the western (Punjab) Himalayas in Himachal Pradesh.
- It flows west through Jammu & Kashmir between the steep cliffs of the Siwalik Range (south) and the Lesser Himalayas (north).
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