{"id":285044,"date":"2024-02-29T19:00:09","date_gmt":"2024-02-29T13:30:09","guid":{"rendered":"https:\/\/forumias.com\/blog\/?p=285044"},"modified":"2024-03-04T14:29:57","modified_gmt":"2024-03-04T08:59:57","slug":"rare-diseases-in-india-explained-pointwise","status":"publish","type":"post","link":"https:\/\/forumias.com\/blog\/rare-diseases-in-india-explained-pointwise\/","title":{"rendered":"Rare diseases in India- Explained Pointwise"},"content":{"rendered":"

\"Rare<\/p>\n

Recently, the tragic death of 19-year-old child actress Suhani Bhatnagar<\/span>, due to a rare disease called dermatomyositis<\/span> which causes muscular inflammation, has put the spotlight on the severity of rare diseases. Despite, rare diseases in India accounting for one-third of the global rare disease incidence<\/span>, there has been apathy of the government and society in general towards these diseases.<\/p>\n

\"Rare
Created by Forum IAS<\/figcaption><\/figure>\n\n\n\n\n
Table of Content<\/strong><\/td>\n<\/tr>\n
What are rare Diseases? What is the status of rare Diseases in India and the World?<\/a>
\nWhat are the Challenges posed by Rare Diseases in India?<\/a>
\nWhat are the Government initiatives for rare diseases in India?<\/a>
\nWhat are the problems in the implementation of policies used to treat Rare Diseases?<\/a>
\nWhat Should be the Way Forward?<\/a><\/td>\n<\/tr>\n<\/tbody>\n<\/table>\n

<\/a>What are rare Diseases? What is the status of rare Diseases in India and the World?<\/span><\/strong><\/h2>\n

Rare Disease-<\/span><\/strong> A rare disease is a health condition which has a low prevalence and affects a small number of people. It includes genetic diseases, rare cancers, infectious tropical diseases and degenerative diseases. Only, 5% of the over 7,000 known diseases worldwide are treatable.<\/p>\n

However, there is no single<\/span>, agreed-upon definition of Rare Disease<\/span>. Different countries have different definitions of rare disease.<\/p>\n

WHO’s Definition-<\/strong><\/span> Rare diseases are the diseases which have a prevalence of 1 or less in every 1,000 people or less.<\/p>\n

Other Country’s Criterion of Classifying Rare Diseases
\n<\/strong><\/span><\/p>\n

\"Rare
Source- I.C.Verma Committee<\/figcaption><\/figure>\n

Rare Disease Definition in India-<\/strong><\/span> India, like many other developing countries, currently has no standard definition<\/span> of rare diseases.<\/p>\n

Rare Disease Burden in India-<\/span><\/strong> India accounts for one-third of the global rare disease incidence.
\na.<\/strong> According to the National Policy for Rare Diseases document, India has close to 50-100 million people<\/span> who are affected by rare diseases or disorders.
\nb.<\/strong> There are over 450 identified diseases in India<\/span>, ranging from widely known ones such as Spinal Muscular Atrophy and Gaucher\u2019s disease to lesser-known ones such as Mucopolysaccharidosis type 1 and Whipple\u2019s disease.
\nc.<\/strong> There are about 8 crore-10 crore Indians<\/span> suffering from rare diseases in India, with over 75% of them being children<\/span>. High morbidity and mortality rates of these life-threatening diseases are a leading cause for the majority of these children not reaching adulthood.<\/p>\n

<\/a>What are the Challenges posed by Rare Diseases in India?<\/span><\/strong><\/h2>\n

1. Unavailability of treatment-<\/strong> Less than 50%<\/span> of the 450-odd rare diseases<\/span> identified in India are treatable<\/span>. Most patients typically receive only basic treatment that alleviates symptoms.<\/p>\n

2. Unaffordable Treatment Costs-<\/strong> Some rare disease’s treatment, requires exorbitantly priced antidotes<\/span> and supportive medication, which poses the challenge of affordability.<\/p>\n

3. Low Focus on R&D for drug development- <\/strong>The rare disease is not considered as a significant market by the drug manufacturers, as the number of persons suffering from individual rare diseases is small. Hence, these diseases are treated as \u2018orphan diseases<\/span>\u2018 and the drugs are treated as \u2018orphan drugs<\/span>\u2018 by the pharma giants.<\/span><\/p>\n

4. Late diagnosis-<\/strong> Rare disease takes on an average of seven years for their diagnosis<\/span> in India. Delay in diagnosis or a wrong diagnosis increases the suffering of the patients exponentially.<\/p>\n

5. Lack of trained healthcare professionals-<\/strong><\/span> Lack of trained healthcare professionals<\/span><\/span> to interpret the signs and symptoms of rare diseases<\/span> in the initial stages, has compounded the challenge posed by rare diseases in India.<\/p>\n

<\/a>What are the Government initiatives for rare diseases in India?<\/strong><\/span><\/h2>\n

Government of India has come up with several initiatives for rare diseases in India.<\/p>\n

1. National Policy for Rare Diseases 2021-<\/strong><\/span> It is an umbrella policy for treatment of rare diseases in India. Some of the major provisions and initiatives under the policy are mentioned below-<\/p>\n

a. Categorization of Rare Diseases into 3 Groups<\/span>
\n<\/strong><\/p>\n\n\n\n\n\n
Group-1<\/strong><\/td>\nDisorders amenable to one-time curative treatment.<\/td>\n<\/tr>\n
Group-2<\/strong><\/td>\nDiseases requiring long term\/lifelong treatment having relatively lower cost of treatment<\/td>\n<\/tr>\n
Group-3<\/strong><\/td>\nDiseases for which definitive treatment is available, but very high cost and lifelong therapy<\/td>\n<\/tr>\n<\/tbody>\n<\/table>\n

b. Centres of Excellence (CoEs) and Nidan Kendras-<\/strong>12 <\/span>Centres of Excellence (CoEs<\/span>) have been opened for diagnosis<\/span>, prevention<\/span> and treatment of rare diseases<\/span>, while Nidan Kendras<\/span> have been set up for genetic testing<\/span> and counselling services<\/span>.<\/span><\/p>\n

c. Financial Support-<\/strong><\/span> Provision for financial support of up to Rs. 50 lakhs<\/span> to the patients suffering from any category of the Rare Diseases and for treatment in any of the Centre of Excellence (CoE) mentioned in NPRD-2021.<\/p>\n\n\n\n
Read More- National Policy for Rare Diseases 2021<\/a><\/td>\n<\/tr>\n<\/tbody>\n<\/table>\n

2. PLI Scheme for Rare Drugs Manufacturing-\u00a0<\/span><\/strong>Department of Pharmaceuticals has been provides for financial incentives to manufacturers of Orphan drugs under the Production Linked Incentive Scheme.<\/span><\/p>\n

3. Tax waiver for Rare Disease Drug imported for Personal Use-<\/strong><\/span> Department of revenue has provided full waiver of Basic Customs Duty<\/span> (BCD<\/span>) and Integrated Goods and Services Tax<\/span> (IGST<\/span>) to imported drugs for personal use to treat Spinal Muscular Atrophy (SMA).<\/p>\n

<\/a>What are the problems in the implementation of policies used to treat Rare Diseases?<\/strong><\/span><\/h2>\n

1. Less number of diseases being treated under the Policy-<\/span>\u00a0<\/strong>The treatment process of only 20 rare diseases<\/span> have been approved by the Drugs Controller General of India. These treatments can be availed only from Centres of Excellence (CoEs).<\/p>\n

2. Less number of<\/strong> Centres of Excellence (CoEs)-<\/strong><\/span> There are only 12 CoEs which are unevenly distributed<\/span> considering the vast expanse of the country. Further, lack of coordination<\/span>, late diagnosis<\/span>, inadequate therapies<\/span> and lack of timely availability of medicines<\/span> at the CoEs, create further challenges.<\/p>\n

3.<\/strong> Lack of adequate budgetary support- <\/strong>Although, the budgetary support for rare diseases has increased over the years, to about Rs. 93 crore for 2023-24. However, there have been reductions to the tune of 75% from Budget Estimate stage to the Revised Estimates to 90% actual expenditure<\/span>.<\/p>\n

4. CoE’s inability to utilise the budget provided-<\/strong> More than \u20b947 crore of the \u20b971 crore financial assistance allocated to the 11 CoEs<\/span> for the current year remains unused<\/span>. CoEs are wary of beginning any treatment that they may need to suspend later, as they feel vulnerable to judicial action from patients and their kin.<\/span><\/p>\n

5. Inadequate financial assistance per person-<\/strong> The limit of Rs. 50 lakh per person<\/span> for treatment of chronic disease is woefully inadequate<\/span>, as chronic rare diseases usually require lifelong management and therapy.<\/p>\n

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Read More UPSC Topics-<\/strong><\/h2>\n\n\n\n\n
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