Editorials/Opinions Analysis For UPSC 03 April 2023

 Contents:

1. Exemption from custom duties for drugs treating rare diseases
2. Rajasthan Right to Health Act

Exemption From Custom Duties For Drugs Treating Rare Diseases

Context: 

The centre recently announced the full exemption of custom duty for drugs, food imported for treatment of rare diseases.

Relevance:

GS-II: Social Justice (Health related issues, Governance and Government Policies, Issues Arising Out of Design & Implementation of Policies)

Dimensions of the Article:

1. Key points
2. What is a rare disease?
3. Provisions of the National Rare Disease Policy 2021
4. Criticisms of the National Rare Disease Policy 2021
5. Conclusion

Key points:

• Recently, The central government provided full exemption from basic customs duty for all drugs and food imported for treatment of rare diseases listed under the National Policy for Rare Diseases (and anti-cancer drug Pembrolizumab).
• It is a significant step towards its endeavour to address issues relating to the public’s welfare.
• How to avail:
  • To avail thus exemption, the individual importer must produce a certificate from specified authorities.
• Custom duties for medicines:
  • Medicines generally attract basic customs duty of 10%, while some categories of lifesaving drugs/vaccines get concessions or exemptions.
• Exemption of custom duties:
  • The exemption has already been provided to specified drugs for the treatment of Spinal Muscular Atrophy or Duchenne Muscular Dystrophy.
• Significance:
  • Treatment: While some of these diseases do not have any described treatment methodologies,
  • Underreporting of cases:
    • It is estimated that between 7,000-8,000 conditions; 450 of them have been reported from hospitals in India.
  • Cost of drugs: Wherever treatment exists, the drugs have to be imported and costs are prohibitive, putting it out of the reach of most people.
    • The NPRD estimates that for a child weighing 10 kg, the annual cost of treatment for some rare diseases may vary from ₹10 lakh to more than ₹1 crore per year, with treatment being lifelong and drug dose and costs increasing with age and weight.
    • The duty exemption will lead to substantial savings for patients.

What is a rare disease?

A rare disease, also referred to as an orphan disease, is any disease that affects a small percentage of the population.

• Most rare diseases are genetic, and are present throughout a person’s entire life, even if symptoms do not immediately appear.

Characteristics:

• Rare diseases are characterised by a wide diversity of symptoms and signs that vary not only from disease to disease but also from patient to patient suffering from the same disease. Relatively common symptoms can hide underlying rare diseases, leading to misdiagnosis.
• Most rare diseases are genetic, and are present throughout a person’s entire life, even if symptoms do not immediately appear.
• Haemophilia,
• Thalassemia,
• Sickle-cell anaemia,
• Auto-immune diseases,
• Pompe disease,
• Hirschsprung disease,
• Gaucher’s disease,
• Cystic Fibrosis,
• Hemangiomas and
• Certain forms of muscular dystrophies

Are some of the most common rare diseases recorded in India.

Definition:

While there is no universally accepted definition of rare diseases, countries typically arrive at their own descriptions, taking into consideration disease prevalence, its severity and the existence of alternative therapeutic options.

In the US, for instance, a rare disease is defined as a condition that affects fewer than 200,000 people.

The same definition is used by the National Organisation for Rare Disorders (NORD).

Concerns and challenges:

• Rare diseases pose a significant challenge to health care systems because of the difficulty in collecting epidemiological data, which in turn impedes the process of arriving at a disease burden, calculating cost estimations and making correct and timely diagnoses, among other problems.
• Many cases of rare diseases may be serious, chronic and life-threatening. In some cases, the affected individuals, mostly children, may also suffer from some form of a handicap.
• As per the 2017 report, over 50 per cent of new cases are reported in children and these diseases are responsible for 35 per cent of deaths in those below the age of one, 10 per cent of deaths between the ages of one and five, and 12 per cent between five and 15.

Provisions of the National Rare Disease Policy 2021

• Patients of rare diseases will be eligible for a one-tome treatment under the Ayushman Bharat Pradhan Mantri Jan Arogya Yojana (AB-PMJAY).
• Financial support up to Rs20 lakh 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) for their treatment in Government tertiary hospitals only. – (NOT be limited to below poverty line (BPL) families, but extended to about 40% of the population as eligible under the norms of Pradhan Mantri Jan Arogya Yojana (PMJAY))
• The policy has categorised rare diseases in three groups:
• Disorders amenable to one-time curative treatment;
• Those requiring long term or lifelong treatment; and
• Diseases for which definitive treatment is available but challenges are to make optimal patient selection for benefit.
• The government has said that it will also assist in voluntary crowd-funding for treatment as it will be difficult to fully finance treatment of high-cost rare diseases.

Criticisms of the National Rare Disease Policy 2021

• Though the document specifies increasing the government support for treating patients with a ‘rare disease’— from Rs 15 lakh to Rs 20 lakh — caregivers say this doesn’t reflect actual costs of treatment.
• The Policy leaves patients with Group 3 rare diseases to fend for themselves due to the absence of a sustainable funding support.
• What the policy doesn’t capture is that these are diseases that last a lifetime adding up to a huge amount of expenditure and many of the patients who can’t afford such treatment will be unable to even make it to the prescribed tertiary hospitals for treatment.

Conclusion:

• The NPRD underlining the magnitude of the disease, stressed on the need to judiciously use the available scarce resources considering the demand.
• Towards achieving the goal of affordable health care, the government must ensure that its directions are followed in full, besides staying the course to innovate solutions for this category of patients.

-Source: The Hindu 

Rajasthan Right to Health Act    

Context:

Recently the Rajasthan government passed the Right to Health act that gathered significant opposition from the doctors of the state.

Relevance:

GS-II: Issues Relating to Development and Management of Social Sector/Services relating to Health, Education, Human Resources.

Dimensions of the Article:

1. Rajasthan Right to Health Act, 2022:
2. Reason for the protest:
3. What is Right to Health?
4. Health for All
5. Status of Health in India
6. Conclusion

Rajasthan Right to Health Act, 2022:

• The Rajasthan Right to Health Act, 2022, addresses key issues of access and affordability.
• It seeks to provide protection and fulfilment of rights, equity in relation to health and well-being for achieving the goal of health care for all through guaranteed access to quality health care for all residents of the State.
• It provides relief against any catastrophic out-of-pocket expenditure.
• The law, also provides for a social audit and grievance redress, gives every resident of the State the right to emergency treatment.
  • Private health-care institutions would be compensated for the charges incurred for such treatment.

Reason for the protest:        

• Unprecedented protest by the doctors of the state against the Right to Health Act that was passed in Rajasthan last week.
• They said that they were distrustful of the government’s promise of recompense for expenses incurred for treating patients during an emergency.
• The protesting doctors also claimed to be apprehensive of the government’s interference in their functioning once the law is enforced.
• To the charge that there is no detailing of the process, health right activists have pointed out that it would be a function of the Rules, not the law itself.

What is Right to Health?

• Right to Health is that no person seeking health care should be denied it, on the grounds of access and affordability, is an acceptable proviso.
• The Right to Health is in sync with the constitutional guarantee of right to life, and other components of the Directive Principles.
• Fundamental Rights: Article 21 of the Constitution of India guarantees a fundamental right to life & personal liberty. The right to health is inherent to a life with dignity.
• Fundamental Rights: Article 21 of the Constitution of India guarantees a fundamental right to life & personal liberty. The right to health is inherent to a life with dignity.
• DPSP: Part IV of the Constitution under the Directive Principles of State Policy (DPSP) ensures social and economic justice to its citizens. Therefore, Part IV of the Constitution directly or indirectly relates to public policy in terms of health.
  • Articles 38, 39, 42, 43, & 47 put the obligation on the state in order to ensure the effective realization of the right to health.
• International Conventions: India is a signatory of the Article 25 of the Universal Declaration of Human Rights (1948) by the United Nations that grants the right to a standard of living adequate for the health and well-being to humans including food, clothing, housing and medical care and necessary social services.

Health for All

• A healthy productive population is an enabler for sustainable development and hence it is critical that the Government remains committed to improve public health delivery, reduce health inequities and ensure affordable health care for all.
• Though India has made substantial progress, there are areas which require policy interventions to attain the goals of accessible, affordable and quality health care.

Status of Health in India:

• Health expenditure:
  • General Government expenditure on health as percentage of GDP in 2019-20 was 1.6% (up from 1.5% in 2018-19.
  • Out-of-Pocket Expenditure (OOPE) as a percentage of Current Health Expenditure fell down to 58.7% in 2016-17 from 60.6% in 2015-16.
  • Population with health insurance coverage: About 14% of the rural population and 19% of the urban population had health expenditure coverage.
  • Source of hospitalisation expenditure: Rural households primarily depended on their ‘household income/savings’ (80%) and on ‘borrowings’ (13%) for financing expenditure on hospitalisation. The figure is 84% and 9% respectively for Urban households.
• Life Expectancy: As per the 2019 Human Development Report released by United Nations Development Programme (UNDP), between 1990 and 2018, life expectancy at birth increased by 11.6 years in India.
• Child Health: As per estimates developed by the UN Inter-agency Group for Child Mortality Estimation:
  • Under-five mortality rate (U5MR) (deaths of children less than 5 years per 1,000 live births) has declined from 126 in 1990 to 34 in 2019, with a Annual rate of reduction (ARR) of 4.5 per cent in the time period 1990-2019.
  • Infant mortality rate (deaths of children less than 1 year per 1,000 live births) has declined from 89 in 1990 to 28 in 2019. o Neonatal mortality rate (deaths of children within a month per 1,000 live births) has declined from 57 in 1990 to 22 in 2019.
• Status of Immunisation among children aged 0-5 years:
  • About 97% of children across the country received at least one vaccination — mostly BCG and/or the first dose of Oral Polio Vaccine at birth, but two out of five children (40%) do not complete their immunisation programme.
  • Among States, Manipur (75%), Andhra Pradesh (73.6%) and Mizoram (73.4%) recorded the highest rates of full immunisation.
  • In Nagaland, only 12% of children received all vaccinations, followed by Puducherry (34%) and Tripura (39.6%).
• Maternal Health:
  • Institutional deliveries: In rural areas, about 90% childbirths were institutional (in Government/private hospitals) and in urban areas it was about 96%.
  • Pre and Post Natal Care: Among women in the age-group 15-49 years, about 97% of women took pre-natal care and about 88% of women took post-natal care.
  • Maternal Mortality Rate (proportion of maternal deaths per 1,00,000 live births reported) of India has declined from 130 in 2014-2016 to 122 in 2015-17.
• Profile of ailments: About 31% of the hospitalised cases had infectious diseases followed by injuries (around 11%), cardio-vascular (around 10%) and gastro-intestinal (around 9%).

Conclusion:

Having transformed a progressive ideal into law, Rajasthan should now strive to gain the trust of the doctors through demonstrable action. It is also incumbent upon the doctors to rise above the differences, and work with the government to save human lives.

-Source: The Hindu