Health

Preparedness & Resilience for Emerging Threats Initiative (PRET Initiative)

Context: World Health Organisation (WHO) launched PRET initiative to improve pandemic preparedness.

PRET Initiative

  • PRET Initiative is an innovative approach launched by World Health Organisation (WHO) for improving disease pandemic preparedness and prevention by providing guidance on integrated planning for responding 
  • Uses a mode of transmission approach to guide countries in pandemic planning.  
  • Aims to strengthen existing systems and capacities and fill gaps in existing systems. 
  • PRET's first module will aim at boosting pandemic preparedness for respiratory pathogens such as influenza, coronaviruses or respiratory syncytial virus. The process for identifying next group of pathogens like arboviruses is underway. 
  • Recognises three tiers of systems and capacities relevant for pandemic preparedness:
  1. Cross-cutting for all or multi-hazards
  2. Relevant for groups of pathogens (respiratory arboviruses)
  3. Specific to a pathogen

RESPIRATORY PATHOGENS PARTNERS ENGAGEMENT FORUM (R-PEF)

  • It is an informal coordination forum convened by WHO to strengthen networking for respiratory pathogen preparedness planning.
  • R-PEF enables WHO and partners to exchange information on planned activities, lessons learnt, gaps and needs, reviews and other developments relating to pandemic preparedness for respiratory pathogens.
  • R-PEF will focus on elements common to respiratory pathogen preparedness. It does not advise or provide inputs for purposes of norms and standards setting to WHO. 

Respiratory Pathogens Pandemic Resource Pack (R-PRP)

  • Updated resources for respiratory pathogens with pandemic potential will be collectively houses in R-PRP, web-portal.
  • Objective of R-PRP is to support a harmonised approach to planning for future pandemics caused by respiratory pathogens.
  • This resource pack will:
  1. Incorporate lessons learned from respiratory pathogen epidemics and pandemics such as influenza, MERS-CoV-2, SARS-CoV-2
  2. Provide a broader respiratory pathogen focus with pathogen specific elements where needed.
  3. Leverage new modalities for partner engagement and shared learning.
  4. Capitalise on current momentum to strengthen national functional capacities for preparedness and response. 

Significance of PRET Initiative

  • Given the ongoing COVID-19 pandemic and possible threat of avian influenza, this module will enable countries to critically review, test and update their respiratory pandemic planning efforts to ensure they have functional capacities and capabilities in place.
  • One-Health Approach: PRET is based on the philosophy of One Health which recognises that most new pathogens originate first in animals and that preventing, preparing and responding to emerging threats requires multi-sector action.
  • Focus on Mode of Transmission: PRET focuses on Mode of Transmission of pathogens to guide countries in pandemic planning, rather than a focus on specific diseases. 
  • Makes way for Pandemic Accord: PRET can also serve to operationalise the objectives and provisions of the Pandemic Accord, which is currently being negotiated by Member States of WHO.

National Health Accounts

Context: The Health Ministry released the National Health Accounts Estimates for India (2019-20) and noted that there has been significant decline in share of out-of-pocket expenditure (OOPE) in total health expenditure.

National Health Accounts Estimates for India (2019-20): 

  • Total Health Expenditure (THE) for India is estimated to be around 3.3% of GDP and ₹4,863 per capita.
  • Share of Out-of-Pocket Expenditure (OOPE) in Total Health Expenditure declined from 62.6% in 2014-15 to 47.1% in 2019-20.
  • Share of Government Health Expenditure in Total Health Expenditure increases from 29% (2014-15) to 41.4% (2019-20).
  • Government Health Expenditure’s share in country’s total GDP increases from 1.13% (2014-15) to 1.35% (2019-20).
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Government Health Expenditure and Out-of-pocket expenditure as % of Total Health Expenditure (%)

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                      Government Health Expenditure as % of GDP

Despite the significant increase in government expenditure on Health, it is still way below the target of National Helath Policy (2017)- 2.5% of GDP.

Need for Government Health expenditure

  • Preventive Healthcare: Unlike private Health expenditure, public spending invests heavily on preventive health care services like Immunization and Nutrition which ultimately reduces the expenditure burden on curative Healthcare. 
  • Reduce Catastrophic expenditure: In a country like India whose workforce is predominantly concentrated in informal sector and devoid of social security net, there is more probability for incidence of catastrophic health expenditure on its population. Hence, significant public spending on health is necessary to reduce catastrophic health expenditure and incidence of poverty as a result of it.

Limitations of Private participation

  • Affordability: Since private institutions require heavy investment in infrastructure, advanced equipment and quality professionals, health services are not affordable. This causes heavy out-of-pocket expenditure by households, especially in secondary & tertiary care. 
  • Issues in Private insurance: Adverse selection (asymmetric information between buyer and insurer) and moral hazard (reckless attitude of insured consumers), lead to higher pay-out by insurance companies. This cost is adjusted by increasing premium prices, which makes health insurance less attractive for the majority of Indians.
  • Issues with private participation in public-funded health protection schemes:
  • Supply-induced demand: When patients are protected under schemes like PMJAY, private hospitals can resort to over-prescription of medication, non-standardised tests, and a longer duration of therapy to generate additional revenue.
  • Low-reimbursement tariffs set by the government deter genuine private hospitals to be part of such schemes.
  • Overpriced drugs: Private firms have invested heavily in R&D for new drugs, especially for secondary and tertiary care; hence, the price of patented drugs is passed on to consumers.

Hence, private participation can only complement but can’t replace public spending on Health to achieve the goal of Universal Health Coverage.

Vaccine Confidence Project (VCP)

Context: The State of the World's Children 2023 report by the UNICEF uses the Vaccine Confidence Index developed by Vaccine Confidence Project to reveal that public perception of importance of vaccines for children has declined since the COVID-19 pandemic in 52 out of 55 countries studied. Only three countries have shown an increase in vaccine confidence, China, India & Mexico.

About Vaccine Confidence Project

  • Vaccine Confidence Project was established in 2010 at London School of Hygiene & Tropical Medicine to better understand growing vaccine scepticism around the world.
  • Vaccine Confidence Index: To better understand and quantify, vaccine scepticism and hesitancy at the global level, VCP launched the Vaccine Confidence Index. 

Benefits of Vaccination

Children are less prone to illness.

  • Improved learning outcomes: Less illness means reduced absence from school and improved learning outcomes.
  • Women empowerment: Less illness means that parents particularly mothers need to take less time off work to care for sick children.
  • Saves money on caring for sick: Families of vaccinated children feel less emotional pain and are less likely to spend on costs of caring for sick children.
  • Herd immunity: Vaccinating children supports the health of the wider community by promoting herd immunity and helping to limit the spread of antimicrobial resistance.
  • Disproportionate gains from vaccination: Every dollar spent on vaccination delivers a return on investment of US$26.

Reasons For Decline Of Vaccination During Covid-19 Pandemic

  • Huge demand on health system: Covid-19 pandemic placed huge demand on an already underinvested public healthcare system. The entire focus was on the pandemic and reduced focus on other aspects of public health.
  • Shortage of health workers for vaccination: Most public health workers were diverted towards pandemic relief and management.
  • Vaccination is contact intensive: Covid-19 pandemic demanded people not to come into physical contact and demanded stay at home policies in this scenario, vaccination was not possible.

Ways To Build Vaccine Confidence & Reduce Vaccine Hesitancy

  • People centred vaccination: Vaccination interventions informed, designed and implemented by local communities can be powerful. Traditional and religious leaders should be also integrated into vaccination efforts.
  • Social data & Social Listening: Social listening refers to mechanisms by which policymakers can understand people's attitudes in real time by mechanisms such as regular surveys about attitudes, intentions and behaviours around vaccines.
  • Pro-vaccine education & public messaging: Educational interventions gaps with reliable, resonant, relevant information can check rumours, fill information gaps, parental concerns about safety and lack of awareness about benefits of vaccination.
  • Gender lens in vaccination: Understanding how gender impacts vaccine uptake can help with the design of more effective programmes, as well as education and information campaigns.

Other Steps To Improve Vaccination

  • Support frontline health workers: Community health workers at the frontline of delivering vaccinations face low pay, informal employment, lack career opportunities etc. They need to be empowered with full time jobs with good pays and working conditions.
  • Integrate vaccination with primary health care: Vaccination efforts should be focused around primary health care. For this the strengthening of primary health care network is also essential.
  • Financial commitments towards vaccination: Government is the largest contributor to immunisation. There is a need to keep vaccination as a priority allocation in annual budgets of both central and state governments.
  • New Vaccines: COVID-19 pandemic has helped accelerate vaccine development and the lessons learnt can result in faster vaccine development & approvals. Several new vaccines like malaria vaccine etc are emerging and need to be mainstreamed.
  • Innovations in vaccine supply chains: Small temperature-sensitive indicators on vaccine vials allow health workers to monitor vaccines for heat exposure. Drones are being successfully used to deliver health commodities in some African countries.
  • Digital technologies: Electronic immunization registries can ensure the right child receives the right vaccination at the right time. 

G20 health working group meet in Goa: Focus on comprehensive global health architecture, Minister urges G20 delegates

Context- Recently the second meeting of the health working group for G20 began in Goa.

Focus areas of discussion

discussions will continue on the three priorities set by the Indian presidency –

Three technical sessions were held on the first day of the meeting

  • The first session focused on health emergency prevention, preparedness and response, with delegates discussing collaborative surveillance systems supported by advanced networks of laboratories and relevant infrastructure.
  • The discussion also centred on embedding anti-microbial resistance as part of any health emergency governance system and it being complementary to such ongoing efforts at various levels of government.
  • The second session focused on creating better collaborations at various levels for access and availability of safe, effective, and quality medical countermeasures.
  • The discussions centred on methods such as public-private partnerships, and international collaborations through a network-of-networks platform.
  • In the third session, a discussion on the draft outcome document was done exclusively among G20 member states in an hour-long session afterwards.
  • It was emphasised that any consensus must be built through measures that are evidence-based, inclusive, fair, equitable, transparent and need-based.

India’s proposals

  • With plugging the gap of inequitable access and creating a global manufacturing network for medical countermeasures – vaccines, drugs, and diagnostics – being priorities for the health working group, India is likely to raise the issue of intellectual property rights during a public health emergency.
  • The discussion is likely to focus on voluntary licensing and technology transfer by pharmaceutical companies, according to officials in the know of the matter.
  • For digital health, India is likely to propose a digital toolbox under an intra-government agency like the World Health Organization that can be accessed by other countries as per their need India will open up its teleconsultation platform eSanjeevani to all, just like it offered the vaccine management system CoWIN previously.
  • India focused on the need for collaborative surveillance, community protection, safe and scalable care, access to medical countermeasures and emergency coordination.
  • focus on reducing the drivers of pandemic risk, to prevent them before they emerge, surveillance, lab systems and strengthening the public health workforce”.

Abortion Laws in India

Context: A District Judge in Texas, the US has suspended the approval of the abortion pill mifepristone, which will essentially make sales of the pill illegal in the US.

About Mifepristone

  • Mifepristone is a medication that is commonly used for medical abortion. It is a synthetic steroid compound that blocks the action of the hormone progesterone in the body.
    • Progesterone is necessary for maintaining the lining of the uterus during pregnancy, so by blocking progesterone, mifepristone can effectively terminate an early pregnancy.
  • Mifepristone is typically used in combination with another medication called misoprostol. This is taken after mifepristone and helps to expel the pregnancy from the uterus by inducing contractions. 
  • Both mifepristone and misoprostol are taken orally as pills and are typically used up to 10 weeks of pregnancy. Mifepristone’s popularity lies in the fact that:
    • It is a non-surgical option for abortion, considered to be the safest option for aborting early-term pregnancies.
    • Since it is a pill, it allows individuals to have more privacy and control over the abortion process. 

Roe v. Wade

  • In 1973, the U.S. Supreme Court’s ruling in Roe v. Wade recognized that the decision of whether to continue or end a pregnancy belongs to the individual, not the government. 

Abortion Laws in India

  • Under Indian Penal Code, voluntarily causing a woman with a child to miscarry is an offence attracting a jail term of up to three years or fine or both unless it was done in good faith where the purpose was to save the life of the pregnant woman. Since this provision was highly restricting the reproductive rights of women, a law was passed to give exemptions from the above criminal provision. 

Medical Termination of Pregnancy, Act (1971)

This act allowed voluntary termination of pregnancy under the following conditions:

  • Continuation of the pregnancy would involve a risk to the life of the pregnant woman or cause grave injury to her physical or mental health.
  • Substantial risk that the child if born, would be seriously handicapped due to physical or mental abnormalities.
  • Pregnancy is caused by rape.
  • Pregnancy is due to the failure of contraceptives in a married woman.
  • Maximum time limit to terminate the pregnancy – 20 weeks though the law granted abortion rights to some extent, there were some issues with it and there was a need for an amendment. 

Need for amendment of MTP Act, 1971 

  • Unsafe abortions: Rigid conditions and time-limit for termination of pregnancy legally forced many to resort to illegal unsafe abortions. E.g., According to a study published in Lancet Global Health, 15.6 million abortions occurred in India in 2015 of which 78% of these were outside health facilities.
  • Time delay at judiciary: Those who wish to terminate pregnancy beyond the legal time limit had to seek the court’s permission. This often leads to judiciary delay and prevents women from terminating their pregnancy at the right time.
  • Technological advancements: Most of the foetal anomalies that are detected late and the MTP Act, of 1971, had not kept pace with the changing times, needs and advancements in medical science. With the advancement of medical technology, there is a scope to increase the upper limit for terminating pregnancies, especially for vulnerable women, and in cases of severe foetal abnormality.
  • Discriminatory to unmarried women: Lack of choice for abortions to unmarried women due to failure of contraception.

Keeping in view of these challenges, an amendment was made to the Act in 2021. 

MTP Amendment Act, 2021

  • Increased legal time limit: Increases the time for abortion from 12 weeks to 20 weeks with the advice of one registered medical practitioner (RMP) and allows abortion beyond 20 weeks for rape survivors and beyond 24 weeks in case of substantial foetal abnormalities thereby preventing illegal abortions beyond 20 weeks through quacks involving risk to maternal health
  • Equal rights to unmarried women: Replaces “any married woman” with “any woman” undergoing termination of pregnancies resulting from contraception failures, thus destigmatising pregnancies outside marriage and accepting modern-day relationships.
  • Reduces delay by setting up of medical boards: The amendment sets up state-level Medical Boards to decide if a pregnancy may be terminated after 24 weeks in cases of substantial foetal abnormalities.
  • Confidentiality: Medical practitioners are barred from revealing the identity of women who wants to terminate pregnancies thus ensuring their right to Privacy. However, there is still a long way to ensure full reproductive rights for pregnant women.

Limitations of Medical Termination of Pregnancy (Amendment) Act, 2021

  • Section 19 of the POCSO Act requires any person aware of a minor engaging in sex to report the matter to the local police even if it was a consensual act as the law pegs the age of consent at 18 years. Often, they are denied safe and legal termination of pregnancy due to fear of police harassment.
  • It does not cover victims of marital rape under the category of rape survivors thereby limiting the right of women to terminate pregnancies.
  • There is no change in the process for terminating pregnancies due to rape that have crossed the 24-week limit and the only recourse left is to get permission from SC/HC through a writ petition.
  • Lack of government healthcare clinics or medical professionals in remote areas leads to the prevalence of illegal abortion facilities thereby defeating the purpose of the MTP Act.

See also: Daily Current Affairs by Rau's IAS

Inside the cult of Biohacking

Context: Experts have noted that the pandemic has led to an unusual spike in interest in health and fitness among Indians, and nowhere is this more noticeable than the early-adopting tech circles, always in search of the next great hack for not just getting their health in order but staying sharp and focused at work, increasing productivity, beating stress and anxiety, and even aspiring to live longer. 

Biohacking

Biohacking refers to the practice of manipulating biological systems through nutrition, supplements, technology and lifestyle changes to optimize health, well-being and performance. Biohackers self-experiment to find what works best for their body and mind.

Some common goals of biohacking 

  • Improving cognitive performance, memory and focus. E.g. using nootropic supplements, meditation, exercise.
  • Increasing health and longevity. E.g. tracking biomarkers, using supplementation and stem cell therapies.
  • Boosting productivity and optimizing sleep. E.g. monitoring sleep cycles, limiting blue light exposure, power naps. 
  • Improving mood and mental well-being. E.g. sunlight exposure, diet changes, transcranial magnetic stimulation.

Common biohacking methods and tools

  • Wearable technology like fitness trackers to monitor metrics like steps, sleep, heart rate, etc. Some trackers also measure temperature, UV exposure and other data.
  • Genetic testing to understand risks and customize diet or supplements based on DNA. 
  • Nutrigenomics - Choosing foods and supplements based on individual genetic profile for optimal health. Nutrigenetic testing can provide diet recommendations based on DNA.
  • Transcranial direct current stimulation (tDCS) - Using mild electric currents to stimulate specific parts of the brain. Aims to improve cognition, mood and performance. Also called brain stimulation or neurostimulation.
  • Nootropics or 'smart drugs' - Taking natural or synthetic substances to boost brain functions like memory, motivation, creativity, alertness, etc. Nootropics include supplements like piracetam or modafinil.
  • DIY Biology - Amateur biohackers conduct experiments in makeshift biology labs to modify biological systems or engineer new lifeforms. Raises ethical issues but some aim to open-source scientific tools.  
  • Fasting and calorie restriction - Cycling between fasting and eating periods to maximize health benefits. Believed to increase longevity, improve insulin sensitivity and cognition. Methods include intermittent fasting, bone broth fasts, etc.

The biohacking movement aims to take control of human biology and optimize it using scientific techniques.

However, critics argue that it raises safety, ethical and regulatory concerns especially around DIY Biology and brain stimulation. An unregulated community poses risks. Biohacking as a practice is still in infancy with limited evidence behind some methods. But interest in it continues to grow worldwide.

Why Bedaquiline patent decision could hold key to 2025 TB goal

Context: The Indian Patent Office has recently denied Johnson & Johnson's (J&J) request to extend their patent on Bedaquiline, a tablet-form drug used for treating drug-resistant tuberculosis (TB), beyond July 2023. This decision paves the way for other drug manufacturers to produce generic versions of Bedaquiline, which is anticipated to be more economical and aid India in achieving its target of eradicating TB by 2025.

What is drug-resistant TB?

  • Drug-resistant tuberculosis (TB) occurs when the bacteria causing TB become resistant to the medications used to treat it. There are different types of drug-resistant TB, including multi-drug-resistant (MDR) TB and extensively-drug-resistant (XDR) TB, which are much harder to treat than regular TB.
  • MDR TB is resistant to at least two of the most commonly used drugs for TB treatment, while XDR TB is resistant to even more medications, making it much harder to treat. The incidence of drug-resistant TB is a major obstacle to eliminating TB in India and globally, and efforts are needed to strengthen TB prevention and control measures, increase awareness, and improve access to effective treatments.
  • Drug-resistant tuberculosis (TB) is a serious global health challenge that occurs when the bacteria causing TB become resistant to the medications used to treat it. 
  • India has a high burden of drug-resistant TB, including MDR TB and XDR TB. According to the World Health Organization (WHO), India accounted for around a quarter of the world's cases of MDR TB and XDR TB in 2019.

How is drug-resistant TB treated?

  • Drug-resistant TB is a form of TB caused by bacteria that have become resistant to the medications used to treat it. Treatment for drug-resistant TB is more complex and longer than for regular TB.
  • TB is typically treated by following a strict schedule of drug doses and frequencies prescribed by a physician. Failure to adhere to this schedule can lead to drug-resistant TB. However, deviations from the schedule can occur due to drug side effects that decrease quality of life or inadequate access to necessary drugs.
  • One of the primary drugs used to treat pulmonary MDR TB is Bedaquiline. In 2018, the World Health Organization recommended an oral regimen that included Bedaquiline, replacing two injectable drugs for MDR TB.
  • Although Bedaquiline had not completed phase III trials, the recommendation was based on smaller trials, outcomes in TB elimination programs, and the difficulty of treating MDR TB. Patients receiving the drug were closely monitored.

How effective is Bedaquiline in treating drug-resistant TB?

  • Bedaquiline is typically prescribed for a period of six months, with a higher dose in the first two weeks followed by a lower dosage for 22 weeks. This is shorter than the treatment routines for pulmonary MDR TB, which can last between 9 to 24 months.
  • Results from a phase II clinical trial showed that Bedaquiline was effective in converting a patient's sputum culture from positive to negative, with durable results observed at 24 weeks and a high likelihood of response at 120 weeks.
  • Compared to other second-line treatment options that are injected and can have severe side effects like permanent hearing loss, Bedaquiline is available in tablet form and is less harmful. However, it has potential side effects of its own, such as toxicity to the heart and liver. As such, it is recommended only when other treatment options for MDR TB have failed.
  • In India, Bedaquiline use is governed by guidelines under the Programmatic Management of MDR TB as part of the National TB Elimination Program.
  • However, the WHO's decision to recommend Bedaquiline before it completed its phase III trials raised ethical questions about the safety threshold for pharmaceutical companies producing drugs for desperate patients and the use of insufficiently tested drugs on compassionate grounds.

Why was the patent application for Bedaquiline production rejected?

  • Johnson & Johnson (J&J) filed a patent application for the production of a fumarate salt compound to create Bedaquiline tablets, but it was opposed by two groups:
    • 1) Network of Maharashtra people living with HIV and 
    • 2) TB survivors Nandita Venkatesan and Phumeza Tisile, supported by Médecins Sans Frontières.
  • The groups argued that J&J's method to produce a "solid pharmaceutical composition" of Bedaquiline was obvious and didn't require an inventive step. The Indian Patent Act 1970 requires an invention to be "not obvious to a person skilled in the art" to be granted a patent.
  • In addition, they claimed that J&J's application lacked information about foreign patent applications, their specifications, and priority dates, among other details required under Section 8 of the Act.
  • They also argued that the current application drew heavily from a previous patent, WO 2004/011436, which discussed a similar compound on which Bedaquiline is based, and whose priority date (2002) preceded the new application.
  • The Patent Office rejected the application on several grounds, including Sections 3d and 3e of the Act, which state that a "new form of a known substance which does not result in the enhancement of the known efficacy of that substance" and "a substance obtained by a mere admixture resulting only in the aggregation of the properties of the components thereof" are not patentable."

Why is the rejection notable?

The rejection of J&J’s patent application for the production of the fumarate salt of Bedaquiline tablets is notable for several reasons. India has the world's largest population of people living with drug-resistant TB, and J&J's patent enabled them to charge $400 (Rs 33,000) for the six-month treatment, in addition to the cost of other drugs. With the rejection of the patent, the cost of Bedaquiline is expected to drop by up to 80%.

The Indian government has directly procured and distributed the drug through state-level TB programs, and since 2016, India has also received free donations of Bedaquiline from J&J and the US Agency for International Development.

The rejection of the patent application is also significant as it addresses the issue of 'evergreening,' where patent owners continuously extend their rights and apply multiple patents for the same product.

The rejection of the patent application was due to various grounds, including the fact that J&J's method for producing the solid pharmaceutical composition of Bedaquiline was deemed "obvious" and did not require an "inventive step."

In addition, the application did not provide the necessary information about foreign patent applications and their specifications, and it was found to be significantly based on a previous patent, WO 2004/011436. Furthermore, the application violated Indian law, which disallows "evergreening." J&J's current patent is set to expire in July 2023.

India needs a national programme on autism

Context: World Autism Awareness Day was celebrated on 2nd April Which highlights the fact that more than one crore Indians are affected with autism which requires the intervention of the government.

What is autism? 

Autism is a developmental disorder with symptoms that appear within the first three years of life. Its formal diagnostic name is autism spectrum disorder (ASD). The word “spectrum” indicates that autism appears in different forms with varying levels of severity. That means that each individual with autism experiences their own unique strengths, symptoms, and challenges.

How autism spectrum disorders are described?

Psychiatrists and other clinicians rely on the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) to define autism and its symptoms. The DSM-5 definition recognizes two main symptom areas: 

  • Deficits in social communication and interaction Restricted, 
  • Repetitive behaviours, interests, or activities.

These symptoms appear early in a child’s development—although diagnosis may occur later. Autism is diagnosed when symptoms cause developmental challenges that are not better explained by other conditions. 

Autism symptoms and behaviours 

Individuals with autism may present a range of symptoms, such as: 

  • Reduced eye contact 
  • Differences in body language 
  • Lack of facial expressions 
  • Not engaging in imaginative play 
  • Repeating gestures or sounds 
  • Closely focused interests 
  • Indifference to temperature extremes 

These are just a few examples of the symptoms an individual with autism may experience. Any individual could have some, all, or none of these symptoms. 

Keep in mind that having these symptoms does not necessarily mean a person has autism. Only a qualified medical professional can diagnose autism spectrum disorder. 

Each person with autism has their own strengths, likes, dislikes, interests, challenges, and skills, just like you do. 

How autism is diagnosed? 

There is no known biological marker for autism. That means that no blood or genetic test can diagnose the disorder. Instead, clinicians rely on observation, medical histories, and questionnaires to determine whether an individual has autism. Physicians and specialists may use one or several of the following screening tools: 

  • Modified Checklist for Autism in Toddlers, Revised (M-CHAT), a 20-question test designed for toddlers between 16 and 30 months old. 
  • The Ages and Stages Questionnaire (ASQ), a general developmental screening tool with sections targeting specific ages used to identify any developmental challenges a child may have. 
  • Screening Tool for Autism in Toddlers and Young Children (STAT), an interactive screening tool, comprising 12 activities that assess play, communication, and imitation. 
  • Parents’ Evaluation of Developmental Status (PEDS) is a general developmental parent interview form that identifies areas of concern by asking parents questions. 

In rare cases, individuals with autism reach adulthood before receiving a diagnosis. However, most individuals receive an autism diagnosis before the age of 8. 

Autism Prognosis 

Autism is a lifelong condition, and a wide variety of treatments can help support people with ASD. The symptoms and comorbidities—conditions occurring in the same individual—are treatable. 

  • Early intervention delivers the best results. Parents and caregivers should seek out the advice of a qualified medical professional before starting any autism treatment. 
  • Advances in understanding autism, its symptoms, and comorbidities have improved outcomes for individuals with autism. 

Co-occurring conditions 

When a person has more than two or more disorders, these conditions are known as comorbidities. Several comorbidities are common in people with autism. These include: 

  • Anxiety 
  • Depression 
  • Epilepsy 
  • Gastrointestinal and immune function disorders 
  • Metabolic disorders 
  • Sleep disorders 

Identifying co-occurring conditions can sometimes be a challenge because their symptoms may be mimicked or masked by autism symptoms. However, diagnosing and identifying these conditions can help avoid complications and improve the quality of life for individuals with autism. 

Why India needs a national programme on autism?

  • Cultural differences and diagnosis: The majority of children with an autism spectrum diagnosis within the United States and the United Kingdom are likely to be verbal, with average or higher than average IQ, and attend mainstream schools. In contrast, a significant majority of children in India who get a clinical diagnosis of autism often also have an intellectual disability and limited verbal ability. 

Autism is assessed behaviourally, and behavioural assessment tools (i.e., questionnaires or interviews with professionals) are the starting point for all research and clinical work on autism. Yet, most of the widely used autism assessment tools have limited availability in Indian languages.

  • Poor supply of specialists in India: According to the latest estimates, India has less than 10,000 psychiatrists, a majority of whom are concentrated in big cities. 

While the number of mental health professionals continues to grow, the current gap between demand and supply cannot be met directly by the specialists alone. 

This gap is not relevant for behavioural assessments alone but also for providing psychological interventions. Parallel efforts to widen the reach of diagnostic and intervention services by involving non-specialists (e.g., Accredited Social Health Activist (ASHA)/Anganwadi workers, parents/caregivers) and the appropriate digital technology (e.g., apps, smartphones) that can capture both self/caregiver report as well as observational data.

What should be the components of the all-India programme on autism?

A national programme on autism should aim at:

  • linking researchers, clinicians, and service providers to the end-users in the autism community in India. 
  • Assessment, 
  • Intervention, and 
  • Awareness. 
  • Promoting R&D in the Autism
  • Expansion of clinical and support service workforce by training non-specialists such that a stepped-care model can be rolled out effectively across the nation. 
  • Consultation with different stakeholders

Customs duty exemption for Rare Diseases

Context: Central government has given full exemption from basic customs duty on all drugs and food for special medical purposes imported for personal use for treatment of all Rare Diseases listed under National Policy for Rare Diseases, 2021. 

Customs Duty Exemption for Rare Diseases

  • To avail this exemption, individual importer must produce a certificate from Central or State Director Health Services or District Medical Officer/Civil Surgeon of districts.
  • Government has also fully exempted Pembrolizumab (Keytruda) used in treatment of various cancers from basic customs duty. 
  • Drugs/Medicines generally attract basic customs duty of 10%, while some categories attract concessional rate of 5% or nil.
  • This exemption will result in substantial cost savings and provide much needed relief to patients as it is estimated that for a child weighing 10 kg, annual cost of treatment for some rare diseases may vary from Rs 10 lakh to more than Rs 1 crore per year with treatment being lifelong and drug dose and cost, increasing with age & weight.

Salient Features of National Policy for Rare Diseases, 2021

Ministry of Health & Family Welfare has launched National Policy for Rare Diseases, 2021 for treatment of rare disease patients. 

Rare diseases have been identified & categorised into three groups:

  • Group 1: Disorders amenable to one-time curative treatment.
    • Disorders amenable to treatment with Hematopoietic Stem Cell Transplantation. Ex. Lysosomal Storage Disorders, Osteoporosis etc. 
    • Disorders amendable to organ transplantation. Ex. Glycogen storage disorders. 
  • Group 2: Diseases requiring long term/lifelong treatment having relatively lower cost of treatment & benefit has been documented in literature and annual or more frequent surveillance is required.
    • Disorders managed with special dietary formulae or food for special medical purposes. Ex. Phenylketonuria (PKU) etc. 
    • Disorders that are amenable to other forms of therapy (hormone/specific drugs). 
  • Group 3: Diseases for which definitive treatment is available but challenges are to make optimal patient selection for benefit, very high cost and lifelong history.
    • Sufficient evidence for good long-term outcomes exists. Ex. Gaucher Disease etc. 
    • Disorders for which cost of treatment is very high and follow literature is not available. Ex. Cystic Fibrosis, Spinal Muscular Atrophy etc. 
  • Centres of Excellence: Eight (08) Centres of Excellence (CoEs) have been identified for diagnosis, prevention & treatment of rare diseases. These are premier Government tertiary hospitals with facilities for diagnosis, prevention & treatment of rare diseases. For ex. AIIMS, New Delhi etc. These CoEs will be provided one time grant of upto Rs 5 crore each for infrastructure development for screening, tests, treatment etc. 
  • NIDAN Kendras: Department of Biotechnology under Unique Methods of Management of Inherited Disorders (UMMID) initiative has supported the establishment of Genetic Diagnostic Units i.e., National Inherited Disorders Administration Kendras (NIDAN Kendras) to provide comprehensive clinical care including diagnosis, management, multidisciplinary care, counselling, prenatal testing of rare diseases. 
  • Financial Support for patients of Rare Diseases:
    • Provision of financial support up to Rs 50 lakhs shall be provided to patients suffering from any category of Rare Diseases. Financial support will be provided to patients for treatment in any of the Centre of Excellence (CoE) under National Policy of Rare Diseases-2021, outside the Umbrella Scheme of Rashtriya Arogya Nidhi. 
    • State Governments can consider supporting patients of rare diseases that can be managed with special diets or hormonal supplements or relatively low-cost interventions (Group 2 diseases).
    • Digital Portal for Crowd Funding and Voluntary Donations for Patients of Rare Diseases. 
  • Prevention of Rare Diseases: Due to advancement in technologies, understanding of pathophysiological mechanism of rare genetic disorders has improved. This can done by:
    • Primary Prevention: Focusing on preventing birth of an affected child by avoidance of pregnancy in advanced age, or any other monogenic disorder by not marrying a carrier, carrier couples not reproducing etc.
    • Secondary prevention: Avoiding birth of affected fetus by prenatal screening and prenatal diagnosis, early detection of disorders and appropriate medical intervention to ameliorate or minimize manifestations of rare diseases by newborn screening.
    • Tertiary prevention: Provision of better care and medical rehabilitation to those rare disease patients who present at advanced stage of disease. 
  • Manpower: States to create department of medical genetics in at least one medical college in the State for imparting education and increasing awareness.
  • Affordability of drug related to rare diseases: 
    • ICMR, CSIR etc to focus on promoting R&D in the field of rare diseases for diagnostics and treatment of rare diseases. 
    • Focus will be on development of new drugs, repurposing of drugs and use of biosimilars. 
    • Finance Ministry to reduce customs duties on import of medicines for rare diseases.

Definition of Rare Diseases

  • WHO defines rare disease as often debilitating lifelong disease or disorder with a prevalence of 1 or less, per 1000 population. 
  • However, India lacks epidemiological data to be able to define rare diseases in terms of prevalence. To overcome this, a hospital based National Registry for Rare Diseases has been initiated by ICMR by involving centres across India that are involved in diagnosis and management of Rare Disease. This will yield much needed epidemiological data for rare diseases. 

Challenges with Rare Diseases

  • Rare diseases are very complex and heterogenous with new rare diseases and conditions being identified and reported regularly. 
  • Issues of Diagnosis of rare diseases: 
    • Early diagnosis of rare diseases is complex due to lack of awareness among primary care physicians, lack of adequate screening and diagnostic facilities. Traditional genetic testing includes tests that can only address a few diseases.
    • Lack of awareness about rare diseases in general public and medical fraternity leading to delay in diagnosis or wrong diagnosis. 
  • Issues of R&D about rare diseases:
    • R&D of most of rare diseases is difficult as little is known about pathophysiology or natural history of these diseases particularly in the Indian context.
    • Very small patient pool with rare diseases results in inadequate clinical experience and less research focus.
  • Challenges in treatment: 
    • Effective or safe treatment is not available for most rare diseases. Of the 7000-8000 rare diseases, less than 5% have therapies to treat them. 
    • Cost of treatment of rare diseases is prohibitively expensive.
  • Lack of epidemiological data: Data regarding rare diseases are not collected effectively in India which impedes understanding the extent of burden of rare diseases and development of a definition. 
  • Economic burden: Rare diseases place a major economic burden on resources of country. 

Suggestions for Rare Diseases

  • Definition of Rare Diseases: Currently, the definition of rare diseases is mostly prevalence based. There is a need to move beyond which focuses on regional specificity, rarity, severity and study ability of the disease.
  • Expanding genetic testing: Expanding genetic testing based on next generation sequencing or chromosomal microarray which are expensive and time-consuming process with interpretation and counselling issues at times.
  • Increasing awareness: There is an immediate need to create awareness amongst public, patients and medical fraternity for early and accurate diagnosis, standardisation of diagnostic modalities and newer diagnostic and therapeutic tools.
  • International & regional collaborations for research, collaborations with physicians working of rare diseases and with patient groups and their families. This will lead to better understanding about pathophysiology of rare diseases and access to wider patient pool. 
  • Incentives for Orphan drugs: On the lines of Orphan Drug Act in USA & Canada, India’s drug makers should incentivise drug makers to manufacture drugs for rare diseases. 
  • Prevention: Focusing on developing infrastructure by newborn screening, prenatal diagnosis and prenatal screening especially in children whose families have a history of rare diseases.
  • Epidemiological data: Epidemiological data should be collected at Centre of Excellence and share with ICMR. 

About Rashtriya Arogya Nidhi (RAN)

  • This scheme is being implemented by Ministry of Health and Family Welfare to provide financial assistance to patients, living below poverty line and who are suffering from major life-threatening diseases, to receive medical treatment at any super speciality hospitals/institutes or other government hospitals. 
  • Financial assistance is released to such patients in the form of ‘one-time grant’, which is released to the Medical Superintendent of Hospital in which the treatment has been/is being received. 
  • Under RAN Revolving Funds have been set up in 13 Central Government Hospitals/Institutions, located all over India for providing financial assistance for treatment up to Rs 2 lakh. In addition financial assistance is provided for individual cases referred by Government hospitals/institutions, which do not have a Revolving Fund and for cases referred by 13 Government hospitals/institutions with Revolving Funds for assistance exceeding Rs. 2 lakh.     

ABHA-based Scan and Share service

Context: The National Health Authority (NHA) under its Ayushman Bharat Digital Mission (ABDM) scheme is enabling digital interventions for bringing efficiency to the delivery of healthcare services. One such initiative is Scan and Share service. 

Scan and Share service

  • Scan and Share service enables instant registrations for patients at OPD (Out-patient Department) blocks of participating hospitals via direct sharing of their ABHA profile. 
  • The service works on a simple modality of QR-code based direct information sharing.
    • The participating hospitals display their unique QR codes at their patient registration counters.
    • The patients use their smartphones to scan the QR codes using the supported mobile Apps for the service (ABHA app, Aarogya Setu etc.)
    • The patient then creates their ABHA (Ayushman Bharat Health Account) or logs in to their existing account. Then, the patients can directly share their ABHA profile with the hospital to complete their registration without having to fill the form physically.
  • This paperless registration results in instant token generation thereby helping the patients skip the long queue by simply using their ABHA.

Ayushman Bharat Digital Mission

Ayushman Bharat Digital Mission (ANDM) aims to develop the necessary backbone to support integrated digital health infrastructure in India. However, the participation of citizens and healthcare facility is voluntary in ABDM. 

Components of ABDM:

  • ABHA Number: An individual/citizen/patient will be provided with a randomly generated 14-digit number known as ABHA for uniquely identifying a person in the digital health ecosystem, authenticating himself and linking his health records with consent across multiple systems and stakeholders.
  • Healthcare Professionals Registry (HPR): Comprehensive registry of all healthcare professionals involved in healthcare services across both modern and traditional systems of medicine.
  • Health Facility Registry (HFR): Comprehensive registry of health facilities (Hospitals, clinics, diagnostic labs, imaging centres, pharmacies etc.) across different systems of medicines including both public and private health facilities.
  • Unified Health Interface (UHI): An open protocol for various digital health services focusing on End User Applications and participating Health Service Provider applications such as appointment booking, teleconsultation, service discovery etc.

Nitrosamines

Context: European Food Safety Agency has recently warned that cancer-causing chemical compounds called nitrosamines have been detected in various everyday foods and could pose a health risk to consumers.

  • Nitrosamines are a class of chemical compounds that are known to be potentially carcinogenic (cancer-causing) to humans. They are formed when nitrites and amines, which are commonly found in many food and beverage products, react with each other under certain conditions, such as high temperatures or acidic environments.
  • Nitrosamines have been detected in cured meat, processed fish, cocoa, beer, and other alcoholic drinks.
  • Meat is the most important food group contributing to nitrosamine exposure.
  • Exposure to nitrosamines has been linked to an increased risk of various types of cancer, including stomach, colon, and pancreatic cancer. They can also have other adverse effects on health, including liver damage, respiratory problems, and reproductive toxicity.
  • To reduce the risk of exposure to nitrosamines, it is recommended to limit consumption of processed meat and other foods that contain nitrites, as well as to ensure proper storage and preparation of these products. Additionally, individuals can choose to consume organic and nitrate-free food products to further minimize exposure to nitrosamines.

STOP TB Partnership

Context: 36th Board Meeting of Stop TB Partnership took place in India.

About Stop TB Partnership

About Stop TB Partnership
  • STOP TB Partnership is a UN hosted organisation that aims for a world free of TB, until then, making diagnosis, treatment and care available to all who need it.
  • It was founded in 2001 to eliminate TB by 2030.
  • Secretariat: The Secretariat of Stop TB Partnership is hosted and administered by UNOPS in Geneva, Switzerland.
  • Union Minister for Health & Family Welfare is the current chairman of the Board of Stop TB Partnership.
  • Membership: Membership of Stop TB Partnership is open to national governments, NGOs, and scientific institutions.

Objectives of STOP TB

  • Ensure that every person with TB has access to effective diagnosis, treatment & cure.
  • Stop transmission of TB.
  • Reduce the inequitable social and economic toll of TB.
  • Develop, implement and increase access to new preventive, diagnostic and therapeutic TB tools, products & strategies.
  • Amplify the voices of people with and affected by TB and secure meaningful change through strategic advocacy & communication.

Initiatives by Stop TB Partnership

  • Global Drug Facility: Stop TB Partnership Global Drug Facility (GDF) facilitates global access to quality-assured, affordable TB diagnostics and treatments. GDF serves three objective:
    • Shape the market: GDF works with suppliers, donors & other stakeholders to ensure the availability of quality assured and sustainably priced products that respond to market needs.
    • Facilitate access to innovative medicines & diagnostics: GDF provides technical assistance to facilitate the introduction and uptake of innovative medicines and diagnostics in client countries.
    • Provide best in class procurement & supply services for tuberculosis medicines & diagnostics. 
  • TB REACH: This initiative aims to identify not diagnosed, not treated or not reported by providing funding to test pioneering approaches that reach more people with TB. TB Reach provides funding for projects that:

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