{"id":100590,"date":"2021-04-08T20:16:07","date_gmt":"2021-04-08T14:46:07","guid":{"rendered":"https:\/\/blog.forumias.com\/?p=100590"},"modified":"2021-05-08T13:36:24","modified_gmt":"2021-05-08T08:06:24","slug":"national-policy-for-rare-diseases-2021","status":"publish","type":"post","link":"https:\/\/forumias.com\/blog\/national-policy-for-rare-diseases-2021\/","title":{"rendered":"National Policy for Rare Diseases 2021"},"content":{"rendered":"<p><span style=\"color: #000000;\"><strong>Synopsis &#8211; <\/strong><a style=\"color: #000000;\" href=\"https:\/\/forumias.com\/blog\/health-ministry-releases-national-policy-for-rare-diseases-2021\/\" target=\"_blank\" rel=\"noopener\">National Policy for Rare Diseases 2021<\/a> is a good start; it provides <strong>financial assistance for one-time treatments of up to Rs. 20 lakh, <\/strong>implements a<strong> crowdfunding mechanism, <\/strong>establishes <strong>a rare disease registry, <\/strong>and<strong> allows for early detection.<\/strong><\/span><\/p>\n<p><strong>Introduction-<\/strong><\/p>\n<ul>\n<li>Recently, the Ministry of Health and Family Welfare has approved the National Rare Disease Policy 2021.<\/li>\n<li>The policy provides financial assistance for one-time treatments of up to Rs. 20 lakh, implements a crowd-funding mechanism, establishes a rare disease registry, and allows for early detection.<\/li>\n<\/ul>\n<h5><strong>What is a Rare Disease?<\/strong><\/h5>\n<p>Any disease that affects a small percentage of the population is considered rare. World Health Organization defines rare disease as having a frequency of less than 6.5-10 per 10,000 people.<\/p>\n<ul>\n<li>Around 7000 rare disease have been identifies. In which 80 percent are of genetic origin.<\/li>\n<li>India has around 70 million people affected by rare diseases.<\/li>\n<li><strong>Example of rare disease<\/strong>&#8211; Inherited cancers, Autoimmune disorders, Congenital malformations, Hirschsprung\u2019s disease, Gaucher disease, Cystic fibrosis, Muscular dystrophies and Lysosomal Storage Disorders (LSDs).<\/li>\n<\/ul>\n<h5><strong>What are the key highlights of the policy?<\/strong><\/h5>\n<ul>\n<li><strong>First, Categorization &#8211;<\/strong> The policy has categorised rare diseases in\u00a0three groups:\n<ul>\n<li><strong>Group 1-<\/strong> Disorders amenable to\u00a0one-time curative\u00a0treatment.<\/li>\n<li><strong>Group 2-<\/strong> Those requiring\u00a0long term\u00a0or\u00a0lifelong treatment.<\/li>\n<li><strong>Group 3-<\/strong> Diseases for which\u00a0definitive treatment is available\u00a0but challenges are to make optimal patient selection for benefit, very high cost and lifelong therapy.<\/li>\n<\/ul>\n<\/li>\n<\/ul>\n<ul>\n<li><strong>Second, Financial support<\/strong>&#8211; Those suffering from rare diseases (diseases specified in Group 1 of the rare disease policy) would be eligible for financial assistance of up to Rs20 lakh under the <strong>Rashtriya Arogya Nidhi<\/strong> umbrella scheme.\n<ul>\n<li><strong>Voluntary crowd-funding for treatment-<\/strong> The policy will\u00a0make use of a crowd-funding mechanism\u00a0to cover the cost of treatment of rare diseases.<\/li>\n<\/ul>\n<\/li>\n<\/ul>\n<h5><strong>Concern with the Policy-<\/strong><\/h5>\n<ul>\n<li><strong>Group 3 patients are completely ignored<\/strong> &#8211; Group 3 patients are now at risk and at the mercy of crowd-funding due to a lack of long-term funding support.<\/li>\n<\/ul>\n<h5><strong>Way forward-<\/strong><\/h5>\n<p><strong>State needs to adopt a load sharing model<\/strong>&#8211; The Centre&#8217;s contribution of the annual costs will be halved [Rs. 40- 50 crore], if it can persuade the States to adopt a load-sharing model, as a few states such as Kerala, Tamil Nadu, and Karnataka have already suggested<\/p>\n<p>&nbsp;<\/p>\n<p><strong>Source- <a href=\"https:\/\/epaper.thehindu.com\/Home\/ShareArticle?OrgId=GT58ERUTC.1&amp;imageview=0\">The Hindu<\/a><\/strong><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Synopsis &#8211; National Policy for Rare Diseases 2021 is a good start; it provides financial assistance for one-time treatments of up to Rs. 20 lakh, implements a crowdfunding mechanism, establishes a rare disease registry, and allows for early detection. Introduction- Recently, the Ministry of Health and Family Welfare has approved the National Rare Disease Policy&hellip; <a class=\"more-link\" href=\"https:\/\/forumias.com\/blog\/national-policy-for-rare-diseases-2021\/\">Continue reading <span class=\"screen-reader-text\">National Policy for Rare Diseases 2021<\/span><\/a><\/p>\n","protected":false},"author":10319,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"jetpack_post_was_ever_published":false,"footnotes":""},"categories":[1230,8043,1351,1310,9],"tags":[1289],"class_list":["post-100590","post","type-post","status-publish","format-standard","hentry","category-9-pm-daily-articles","category-current-affairs-cat","category-daily-news","category-daily-news-updates","category-public","tag-soc_0","entry"],"jetpack_featured_media_url":"","views":{"total":0,"cached_at":"","cached_date":1701107932},"jetpack_sharing_enabled":true,"_links":{"self":[{"href":"https:\/\/forumias.com\/blog\/wp-json\/wp\/v2\/posts\/100590","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/forumias.com\/blog\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/forumias.com\/blog\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/forumias.com\/blog\/wp-json\/wp\/v2\/users\/10319"}],"replies":[{"embeddable":true,"href":"https:\/\/forumias.com\/blog\/wp-json\/wp\/v2\/comments?post=100590"}],"version-history":[{"count":0,"href":"https:\/\/forumias.com\/blog\/wp-json\/wp\/v2\/posts\/100590\/revisions"}],"wp:attachment":[{"href":"https:\/\/forumias.com\/blog\/wp-json\/wp\/v2\/media?parent=100590"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/forumias.com\/blog\/wp-json\/wp\/v2\/categories?post=100590"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/forumias.com\/blog\/wp-json\/wp\/v2\/tags?post=100590"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}