{"id":5061,"date":"2017-07-27T14:09:50","date_gmt":"2017-07-27T08:39:50","guid":{"rendered":"http:\/\/blog.forumias.com\/?p=5061"},"modified":"2017-08-12T00:27:33","modified_gmt":"2017-08-11T18:57:33","slug":"revived-policy-for-prevention-and-control-of-blood-related-inherited-disorders","status":"publish","type":"post","link":"https:\/\/forumias.com\/blog\/revived-policy-for-prevention-and-control-of-blood-related-inherited-disorders\/","title":{"rendered":"Revived policy for Prevention and Control of blood related inherited disorders"},"content":{"rendered":"<p><strong><u>Context<\/u><\/strong><\/p>\n<ul>\n<li>The <strong>Union Health and Family Welfare Ministry<\/strong> had recently released a policy on the <strong>Prevention and Control of haemoglobinopathies <\/strong>in India.<\/li>\n<li>People living with <strong>Thalassaemia<\/strong>,<\/li>\n<li>sickle cell anaemia and other variant haemoglobins can now expect a better screening and treatment practices<\/li>\n<\/ul>\n<p><strong><u>Why in the news?<\/u><\/strong><\/p>\n<ul>\n<li>The guidelines include the creation of a national registry for future patients.<\/li>\n<li>The registry shall further collect <strong>useful data<\/strong>, such as the<strong> location of patients<\/strong> to identify areas of high concentration, <strong>ethnicity<\/strong> or other characteristics, <strong>age distribution<\/strong>, <strong>records of deaths<\/strong> and their cause.<\/li>\n<li>The policy aims at creating treatment protocol benchmarks, <strong>to improve the quality of life<\/strong> of patients.<\/li>\n<li>It is also a guide on prevention and control, which includes antenatal and prenatal testing to reduce the incidence of live haemoglobin disorder births (currently pegged at <strong>10,000-15,000 live births a year<\/strong>).<\/li>\n<\/ul>\n<p><strong><u>Abstract<\/u><\/strong><\/p>\n<ul>\n<li>Haemoglobinopathies and thalassaemia are inherited disorders which affect a large number of individuals in India and impose a significant economic burden on families<\/li>\n<li>Thalassaemia is the name for a group of inherited conditions that affect a substance in the blood called haemoglobin.<\/li>\n<li>With a population of 950 million and a birth rate of 28 per thousand, it has been estimated that there would be about 42 million carriers and about 12,000 infants born each year will be inheriting a major haemoglobin disorder in India.<\/li>\n<li>In view of this heavy genetic load, frequent blood transfusions, <strong>high cost of treatment<\/strong> and management, physical trauma, and psychological and <strong>mental harassment <\/strong>to the patients and their families, it has been realized that the preventive genetic approach is the most suitable for the Indian setting.<\/li>\n<li>After carrier detection, prenatal diagnosis and genetic counselling are important options for couples at high risk for <strong>Haemoglobinopathies<\/strong>, a prerequisite for a successful prevention and control programme is health education, public awareness and sensitization, and screening of the population for identification of heterozygotes or carriers in the community.<\/li>\n<\/ul>\n<p><img data-recalc-dims=\"1\" loading=\"lazy\" decoding=\"async\" class=\"aligncenter wp-image-5063 size-full\" src=\"https:\/\/i0.wp.com\/blog.forumias.com\/wp-content\/uploads\/2017\/07\/enerca_video_haemoglobinopathies_editora_9_33_1.jpg?resize=600%2C261\" alt=\"\" width=\"600\" height=\"261\" srcset=\"https:\/\/i0.wp.com\/forumias.com\/blog\/wp-content\/uploads\/2017\/07\/enerca_video_haemoglobinopathies_editora_9_33_1.jpg?w=600&amp;ssl=1 600w, https:\/\/i0.wp.com\/forumias.com\/blog\/wp-content\/uploads\/2017\/07\/enerca_video_haemoglobinopathies_editora_9_33_1.jpg?resize=150%2C65&amp;ssl=1 150w, https:\/\/i0.wp.com\/forumias.com\/blog\/wp-content\/uploads\/2017\/07\/enerca_video_haemoglobinopathies_editora_9_33_1.jpg?resize=300%2C131&amp;ssl=1 300w\" sizes=\"auto, (max-width: 600px) 100vw, 600px\" \/> <strong><u>Loopholes in the Policy<\/u><\/strong> <strong>Carrier testing for relatives<\/strong><\/p>\n<ul>\n<li>The policy makes no reference to carrier testing for relatives of patients as a result people with the genetic disorder <strong>unknowingly pass it<\/strong> on to their children, as <strong>preventive checks<\/strong> are <strong>not the norm<\/strong> in India.<\/li>\n<li>In Pakistan, a law making carrier testing compulsory for relatives of Thalassaemia patients was passed in February. A similar system is in place in <strong>Dubai,\u00a0<\/strong><strong>Abu Dhabi <\/strong>and <strong>Saudi Arabia.<\/strong><\/li>\n<\/ul>\n<p><strong>Free treatment<\/strong><\/p>\n<ul>\n<li>Only <strong>20% of patients<\/strong> in India can afford treatment for This makes it more important that free treatment is given to all patients.<\/li>\n<li>Further, all chelation drugs should be made available free because one drug does not suit all<\/li>\n<li>Right now, the only states that offer free treatment are <strong>Rajasthan, Uttar Pradesh, West Bengal, <\/strong><\/li>\n<\/ul>\n","protected":false},"excerpt":{"rendered":"<p>Context The Union Health and Family Welfare Ministry had recently released a policy on the Prevention and Control of haemoglobinopathies in India. People living with Thalassaemia, sickle cell anaemia and other variant haemoglobins can now expect a better screening and treatment practices Why in the news? The guidelines include the creation of a national registry&hellip; <a class=\"more-link\" href=\"https:\/\/forumias.com\/blog\/revived-policy-for-prevention-and-control-of-blood-related-inherited-disorders\/\">Continue reading <span class=\"screen-reader-text\">Revived policy for Prevention and Control of blood related inherited disorders<\/span><\/a><\/p>\n","protected":false},"author":61,"featured_media":5062,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"jetpack_post_was_ever_published":false,"footnotes":""},"categories":[31],"tags":[],"class_list":["post-5061","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-science-technology","entry"],"jetpack_featured_media_url":"https:\/\/i0.wp.com\/forumias.com\/blog\/wp-content\/uploads\/2017\/07\/muharram-blood-donations-elixir-for-thalassaemia-children-d2ba812e5310d095ad5b267ee38c8d69.jpg?fit=1000%2C501&ssl=1","views":{"total":0,"cached_at":"","cached_date":1704872473},"jetpack_sharing_enabled":true,"_links":{"self":[{"href":"https:\/\/forumias.com\/blog\/wp-json\/wp\/v2\/posts\/5061","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\/61"}],"replies":[{"embeddable":true,"href":"https:\/\/forumias.com\/blog\/wp-json\/wp\/v2\/comments?post=5061"}],"version-history":[{"count":0,"href":"https:\/\/forumias.com\/blog\/wp-json\/wp\/v2\/posts\/5061\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/forumias.com\/blog\/wp-json\/wp\/v2\/media\/5062"}],"wp:attachment":[{"href":"https:\/\/forumias.com\/blog\/wp-json\/wp\/v2\/media?parent=5061"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/forumias.com\/blog\/wp-json\/wp\/v2\/categories?post=5061"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/forumias.com\/blog\/wp-json\/wp\/v2\/tags?post=5061"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}