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Health Ministry Releases “National Policy for Rare Diseases 2021”

What is the News?

The caretakers of patients with ‘rare diseases’ are not satisfied with the National Policy for Rare Diseases 2021. The Union Health Ministry recently released the policy.

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) condition. 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.
    • Further, 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.

Objections to the Policy:

  • The policy offers no support to patients awaiting treatment since the earlier National Policy for Treatment of Rare Diseases 2017 was kept on hold.
  • The policy has left patients with Group 3 rare diseases to fend for themselves. It has absolutely no consideration for Group 3 patients who require lifelong treatment support.

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.

Source: The Hindu


NITI Aayog launches “AIM-PRIME” to support science based startups

What is the News?

Atal Innovation Mission(AIM), NITI Aayog in association with Bill & Melinda Gates Foundation(BMGF) launch AIM-PRIME (Program for Researchers on Innovations, Market-Readiness & Entrepreneurship).

About AIM-PRIME:

  • AIM-PRIME Program aims at promoting science-based, deep technology. For that, it will provide training and guidance over a period of 12 months.
  • Implementation by: Venture Center – a non-profit technology business incubator.
  • Eligibility: The program is open to:
    • Technology developers (early-stage deep tech start-ups, and scientists/ engineers/ clinicians) with strong science-based deep tech business ideas.
    • CEOs and Senior incubation managers of AIM Funded Atal Incubation Centers that are supporting deep tech entrepreneurs.
  • Benefits of the programme:
    • The candidates selected for the program will get access to in-depth learning resources via a comprehensive lecture series, live team projects, exercises, and project-specific mentoring.
    • They will also have access to a deep tech startup playbook, curated video library, and plenty of peer-to-peer learning opportunities.

About Deep Technology:

  • Deep techs are very high cutting-edge and disruptive technologies. These technologies base on scientific discoveries, engineering, mathematics, physics, and medicine.
  • Examples: A new medical device or technique fighting cancer, data analytics to help farmers grow more food, or a clean energy solution trying to lessen the human impact on climate change.

Source: PIB


 “Maternal mortality” rose during pandemic: Lancet Report

What is the News? The Lancet Global Health journal releases a report titled “Effects of the COVID-19 pandemic on mothers and Babies”. It reports increasing maternal mortality as an impact of pandemic-induced restrictions.

About the Lancet Report:

  • The Lancet report is based on an analysis of 40 studies across 17 countries. It includes Brazil, Mexico, the U.S., Canada, U.K, Denmark, Netherlands, Italy, India, China, and Nepal.
  • The report provides a clear indication that the health of women and babies experienced worse outcomes due to the pandemic.

Key Findings of the Report:

  • Risk of maternal mortality during pregnancy or childbirth increased by more than a third compared with pre-pandemic instances.
    • Reasons: Global lockdowns, disruption in maternal health services, reduction in health seeking behaviour and fear of getting infected from health providers added to pregnancy risks and led to worsened health outcomes for women and childrens.
  • The chances of stillbirth have also increased by more than 28% compared with pre-pandemic instances.
    • Stillbirth: It means a baby born with no signs of life at 28 weeks of pregnancy or more.
  • The study also focussed on the maternal mental health. It has found an increase in postnatal depression, maternal anxiety or both during pandemic.

Impact of Pandemic on India:

  • According to HMIS data by Population Foundation of India, during the national lockdown between April and June in 2020 compared to the same period in 2019, there was a
    • 27% drop in pregnant women receiving four or more ante-natal check-ups;
    • 28% decline in institutional deliveries and
    • 22% decline in prenatal services.

Suggestions:

  • Policymakers and healthcare leaders must urgently investigate robust strategies for preserving safe and respectful maternity care.
  • Also, take Immediate actions to avoid rolling back decades of investment in reducing mother and infant mortality in low-resource settings.
  • The personnel for maternity services not be redeployed for other critical and medical care during the pandemic and in response to future health system shocks.

Source: The Hindu


SC Cautions Court against Granting Bail in Heinous offences

What is the News?

The Supreme Court cautioned courts against granting bail in heinous offences. The SC said that the seriousness of the charge is a basic consideration before releasing an accused on bail.

What was the case?

  • The Kerala High Court granted bail to a man accused of the murder of a 30-year-old dentist in front of her father.
  • The accused had gone absconding for several days before his arrest.

What did the Supreme Court say?

  • The Supreme Court set aside the Kerala High Court order of granting bail to the accused.
  • The apex court observed that the nature of the offense is one of the basic considerations for the grant of bail. The more heinous the crime is, the greater the chance of rejection of the bail.
  • Further, the court said that the power to grant bail under Section 439 of the Cr.P.C is discretionary. The court also stated that such discretion has to be exercised judiciously by courts.
  • In this case, the crime of the accused is heinous. Moreover, he could be arrested only after receipt of secret information by the investigation agency. Thus, granting bail was not justified.

SC judge stated

“while granting bail the court has to keep in mind not only the nature of the accusations, but the severity of the punishment”. 

  • Other criteria for bail include “reasonable apprehensions” of influencing witnesses or tampering of evidence.

Source: The Hindu


India contributes $300,000 to “UN Women”

What is the News?

 India contributes USD 300,000 to the UN Women to support gender equality and women empowerment.

About UN Women:

  • UN Women is the United Nations entity, dedicated to promoting gender equality and the empowerment of women.
  • Headquarter: New York
  • Established in: 2010 by the United Nations General Assembly to accelerate the progress on meeting women’s needs worldwide.
  • UN Women formed by merging the four previously distinct parts of the UN system which are:
    • Division for the Advancement of Women (DAW)
    • International Research and Training Institute for the Advancement of Women (INSTRAW)
    • Office of the Special Adviser on Gender Issues and Advancement of Women (OSAGI)
    • United Nations Development Fund for Women (UNIFEM)
  • Objectives of UN Women:
    • To support inter-governmental bodies, such as the Commission on the Status of Women in their formulation of policies, global standards, and norms.
    • To help the Member States to implement these standards, standing ready to provide suitable technical and financial support to those countries that request it, and to forge effective partnerships with civil society.
    • Furthermore, to hold the UN system accountable for its own commitments on gender equality. It includes regular monitoring of system-wide progress.
  • Headquarters: New York, United States

Source: The Hindu


Indian Army will participate in Exercise “Shantir Ogroshena-2021”

What is the News?

Indian Army will participate in a Multinational Military Exercise named “Shantir Ogroshena-2021” in Bangladesh.

About Exercise ‘Shantir Ogroshena-2021’:

  • Exercise Shantir Ogroshena (Front Runner of the Peace) is a multinational military exercise.
  • The 2021 edition of the Exercise will be held in Bangladesh. It is held there to commemorate the birth centenary of Bangladesh’s ‘Father of the Nation’ Bangabandhu Sheikh Mujibur Rahman.
  • Theme: The theme of the exercise is “Robust Peacekeeping Operations”.
  • Participating Countries: The participants of the Exercise are
    • The DOGRA Regiment of the Indian Army
    • A contingent of Royal Bhutan Army
    • Sri Lankan Army
    • Bangladesh Army.
  • Observers: The military observers from the USA, UK, Turkey, Kingdom of Saudi Arabia, Kuwait and Singapore will also present throughout the exercise.

Source: AIR

India-Bangladesh Relations- Explained Pointwise

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