Syllabus
GS Paper 2 – Issues relating to development and management of Social Sector/Services relating to Health, Education, Human Resources.
Applications where to apply?
When asked about
– National Rare Disease Policy,2021
– Universal Healthcare
– Inclusive Development
Context
Rare Disease Day, observed on the last day of February, aims to support individuals affected by rare medical conditions, this article highlights their plight of neglect and issues with National Rare Disease Policy.
Source
The Hindu | Editorial dated 29th February 2024
India’s fight against rare diseases
Rare diseases are a diverse group of conditions that affect a small number of people. They can be genetic, infectious, or environmental in origin, and can affect any part of the body.
Global Perspective on Rare Diseases
- According to the World Health Organization, rare diseases affect 1 or fewer per 1,000 population.
- Out of over 7,000 known diseases worldwide, only 5% are treatable, leaving many patients with basic symptomatic relief.
Rare Diseases in India
- India accounts for one-third of global rare disease incidences
- Over 450 diseases have been identified.
- An estimated 8-10 crore Indians suffer from rare diseases, with over 75% being children.
National Policy for Rare Diseases, 2021
The Policy aims at lowering the incidence and prevalence of rare diseases based on an integrated and comprehensive preventive strategy encompassing:
- Awareness generation
- Premarital, post-marital, pre-conception and post-conception screening and
- Counselling programmes to prevent births of children with rare diseases.
Initiatives for treatment support for patients of rare diseases under the Policy are as follows
- Financial support up to Rs. 20 lakhs under the Umbrella Scheme of Rashtriya Arogaya Nidhi
- Extended to about 40% of the population, who are eligible as per norms of Pradhan Mantri Jan Arogya Yojana, for their treatment in Government tertiary hospitals only.
- Voluntary crowd-funding for treatment: by creating a digital platform for bringing together notified hospitals and prospective individual or corporate donors willing to support treatment of such patients.
- Promoting health care including preventive health care is included in the list in the Schedule for (corporate social responsibility) CSR activities. Hence CSR amount can be sourced to obtain funding.
- National Consortium for Research and Development on therapeutics for Rare Diseases with an expanded mandate to include research & development, technology transfer and indigenization of therapeutics for rare diseases.
- It will be convened by Department of Health Research (DHR) with ICMR as a member.
- Centres of Excellence (CoEs):certain leading government hospitals as specialized centers for rare diseases.CoEs receive one-time funding from the government to strengthen their diagnostic and treatment facilities.
Challenges in Rare Disease Management
- Timely and accurate diagnosis remains a challenge, taking an average of seven years for rare disease patients.
- National Policy for Rare Diseases,2021 still faces issues such as:
- Lack of a clear definition of rare diseases and data insufficiency.
- Less than 50% of the identified rare diseases in India have treatable options, and treatments are limited to a few Centers of Excellence (CoEs)
- Disparities in fund utilization among CoEs and significant amounts remaining unutilized in CoEs.
- The NPRD guidelines offer limited financial assistance per patient, which is inadequate for lifelong management of chronic rare diseases.
- Budget allocations for rare diseases in India remain low.
Way Ahead
- Establishing a Standard Definition and Policy Framework: The government must take proactive steps to establish a standardized definition of rare diseases within the Indian context.
- This definition should encompass the prevalence, severity, and impact of these diseases on affected individuals and society at large.
- Additionally, a comprehensive policy framework needs to be developed to address the unique needs of rare disease patients, including access to diagnosis, treatment, and support services.
- Increasing Budgetary Allocations and Resource Allocation: There is an urgent need for the government to allocate sufficient financial resources to address the challenges associated with rare diseases effectively.
- This includes increasing budgetary allocations specifically earmarked for rare disease research, treatment, and support programs.
- Adequate funding will enable the development of innovative therapies, diagnostic tools, and patient-centered initiatives aimed at improving the quality of life for individuals living with rare diseases.
- Fostering Collaboration and Coordination: Expansion of Centers of Excellence (CoEs) dedicated to rare diseases is crucial to ensure widespread access to specialized care and expertise.
- Furthermore, fostering collaboration and coordination among healthcare providers, research institutions, patient advocacy groups, and government agencies is essential for sharing knowledge, resources, and best practices in the diagnosis, treatment, and management of rare diseases.
- Leveraging Public-Private Partnerships: Public-private partnerships (PPPs) can play a pivotal role in addressing the complex challenges associated with rare diseases.
- PPPs can also facilitate the development of sustainable funding mechanisms and innovative financing models to support rare disease research and treatment initiatives.
- Addressing Drug Accessibility and Affordability: government should explore measures to address this issue, including incentivizing domestic drug manufacturers to produce affordable treatments for rare diseases.
- Removing barriers such as GST on life-saving drugs and streamlining regulatory processes for drug approval can help improve access and affordability for patients in need.
- Investing in Research and Innovation: Continued investment in research and innovation is essential to advance our understanding of rare diseases and develop more effective treatments and interventions.
Conclusion
Rare diseases pose significant challenges globally and in India, necessitating comprehensive policy measures, increased funding, and improved access to treatments. Despite the complexities, concerted efforts can mitigate the suffering of rare disease patients and improve their quality of life.
Related Topics
Orphan Drugs
Orphan drugs are pharmaceutical agents developed to treat rare diseases. These diseases affect a small number of people, making it commercially unattractive for pharmaceutical companies to invest in their development without government incentives.
Rashtriya Swasthya Karyakram (RSK)
Rashtriya Swasthya Karyakram (RSK) or the National Health Mission (NHM), is a flagship program of the Government that aims to provide accessible, affordable, and quality healthcare to all citizens, especially the poor and vulnerable.
Components of RSK
- National Rural Health Mission (NRHM): Focuses on providing healthcare services in rural areas.
- National Urban Health Mission (NUHM): Focuses on providing healthcare services in urban areas
- Janani Suraksha Yojana (JSY): Provides cash assistance to pregnant women for delivery at health facilities.
- Aayushman Bharat (AB-PMJAY): Provides health insurance coverage to the poor and vulnerableexpand_more
- Rashtriya Bal Swasthya Karyakram (RBSK): Focuses on the health of children from birth to 18 years.
- Rashtriya Kishor Swasthya Karyakram (RKSK): Focuses on the health of adolescents from 10 to 19 years.
References
Practice Question
Discuss the challenges and policy initiatives concerning rare diseases in India. [250 words]
How to approach this question?
Introduction:
- Define rare diseases.
- Contextualize the issue in India.
Body:
Challenges:
- Discuss the lack of a standardized definition.
- Discuss the issue of funding utilization.
- Discuss the limited availability of therapies.
Policy Initiatives:
- Discuss the National Policy on Rare Diseases, 2021.
- Discuss the financial support provided by the policy.
- Discuss the research focus of the policy.
- Discuss the establishment of a national hospital-based registry.
- Discuss the early screening and prevention measures.
- Discuss the capacity building initiatives.
Conclusion:
- Summarize the main points.
- Discuss the future outlook.
Remember to provide a balanced answer, incorporating relevant facts and figures, and propose feasible solutions. Structure your answer well, with a clear introduction, body, and conclusion. Also, ensure that your answer is within the word limit specified for the exam. Good luck!