{"id":161341,"date":"2025-04-07T19:21:58","date_gmt":"2025-04-07T13:51:58","guid":{"rendered":"https:\/\/pwonlyias.com\/stage\/?post_type=current-affairs&#038;p=161341"},"modified":"2025-04-07T19:21:58","modified_gmt":"2025-04-07T13:51:58","slug":"india-needs-to-make-drugs-to-combat-rare-diseases","status":"publish","type":"current-affairs","link":"https:\/\/pwonlyias.com\/stage\/current-affairs\/india-needs-to-make-drugs-to-combat-rare-diseases","title":{"rendered":"India Needs to Make Drugs to Combat Rare Diseases"},"content":{"rendered":"<p><span style=\"font-weight: 400;\">As per parliamentary data, 13,479 patients have registered in the <\/span><b>National Registry for Rare and Other Inherited Disorders.<\/b><b><br \/>\n<\/b><\/p>\n<h2><span style=\"font-size: 18pt;\"><b>About Rare Disease<\/b><\/span><\/h2>\n<ul>\n<li style=\"font-weight: 400;\" aria-level=\"1\"><span style=\"font-weight: 400;\">Rare diseases are conditions with a low prevalence, affecting a small population.<\/span><\/li>\n<li style=\"font-weight: 400;\" aria-level=\"1\"><span style=\"font-weight: 400;\">According to WHO, a disease is considered rare if it affects 1 or fewer in 1,000 people.<\/span><\/li>\n<li style=\"font-weight: 400;\" aria-level=\"1\"><span style=\"font-weight: 400;\">They include genetic diseases, rare cancers, tropical diseases, and degenerative disorders.<\/span><\/li>\n<li style=\"font-weight: 400;\" aria-level=\"1\"><b>Global Scenario:<\/b><span style=\"font-weight: 400;\"> Over <\/span><b>7,000 rare diseases exist, <\/b><span style=\"font-weight: 400;\">but only<\/span><b> 5% are treatable.\u00a0<\/b><\/li>\n<\/ul>\n<h2><span style=\"font-size: 18pt;\"><b>About Rare Diseases in India<\/b><\/span><\/h2>\n<ul>\n<li style=\"font-weight: 400;\" aria-level=\"1\"><b>India\u2019s Rare Disease Burden: <\/b><span style=\"font-weight: 400;\">India accounts for a significant portion of the global rare disease cases, with estimates suggesting that between<\/span><b> 80 to 100 million people are affected.<\/b><\/li>\n<li style=\"font-weight: 400;\" aria-level=\"1\"><span style=\"font-weight: 400;\">The<\/span><b> Delhi High Court <\/b><span style=\"font-weight: 400;\">highlighted that <\/span><b>many more patients remain unregistered<\/b><span style=\"font-weight: 400;\"> and stressed that the government and judiciary must not remain passive.<\/span><\/li>\n<li style=\"font-weight: 400;\" aria-level=\"1\"><span style=\"font-weight: 400;\">Rare disease patients represent a<\/span><b> manageable population size, making focused government intervention feasible.<\/b><\/li>\n<\/ul>\n<h2><span style=\"font-size: 18pt;\"><b>Right to Health and State Responsibility<\/b><\/span><\/h2>\n<ul>\n<li style=\"font-weight: 400;\" aria-level=\"1\"><span style=\"font-weight: 400;\">The Supreme Court recognized the right to health and medical care as a <\/span><b>fundamental right under Article 21 <\/b><span style=\"font-weight: 400;\">of the Constitution over three decades ago.<\/span><\/li>\n<li style=\"font-weight: 400;\" aria-level=\"1\"><b>Article 41 of the Directive Principles of State Policy<\/b><span style=\"font-weight: 400;\"> mandates state assistance in cases of sickness and disability.<\/span><\/li>\n<\/ul>\n<h2><span style=\"font-size: 18pt;\"><b>Provision for Rare Disease Treatment in India<\/b><\/span><\/h2>\n<ul>\n<li style=\"font-weight: 400;\" aria-level=\"1\"><span style=\"font-weight: 400;\">The <\/span><b>National Policy for Rare Diseases (NPRD<\/b><span style=\"font-weight: 400;\">) was approved on<\/span><b> March 30, 2021<\/b><span style=\"font-weight: 400;\">, following a court directive.<\/span><\/li>\n<li style=\"font-weight: 400;\" aria-level=\"1\"><span style=\"font-weight: 400;\">In May 2023, the Delhi High Court ordered the<\/span><b> formation of a five-member committee to monitor NPRD\u2019s implementation.<\/b><\/li>\n<li style=\"font-weight: 400;\" aria-level=\"1\"><span style=\"font-weight: 400;\">The <\/span><b>NPRD offers financial support of up to \u20b950 lakh per patient<\/b><span style=\"font-weight: 400;\"> for treatment of rare diseases.<\/span><\/li>\n<li style=\"font-weight: 400;\" aria-level=\"1\"><span style=\"font-weight: 400;\">Despite these provisions, the<\/span><b> Ministry of Health and Family Welfare (MoHFW)<\/b><span style=\"font-weight: 400;\"> has failed to adequately address the treatment needs of rare disease patients.<\/span><\/li>\n<\/ul>\n<h2><span style=\"font-size: 18pt;\"><b>Challenges in Handling Rare Diseases<\/b><\/span><\/h2>\n<ul>\n<li style=\"font-weight: 400;\" aria-level=\"1\"><b>High Cost of Treatment:<\/b><span style=\"font-weight: 400;\"> Treatments like risdiplam for <\/span><b>Spinal Muscular Atrophy (SMA)<\/b><span style=\"font-weight: 400;\"> cost over <\/span><b>\u20b972 lakh annually,<\/b><span style=\"font-weight: 400;\"> exceeding the<\/span><b> \u20b950 lakh financial limit set by NPRD<\/b><span style=\"font-weight: 400;\">.<\/span><span style=\"font-weight: 400;\"><br \/>\n<\/span><span style=\"font-weight: 400;\">Patients often exhaust the financial aid quickly, leading to discontinuation of critical treatments.<\/span><\/li>\n<li style=\"font-weight: 400;\" aria-level=\"1\"><b>Insufficient Government Support<\/b><span style=\"font-weight: 400;\">: The <\/span><b>MoHFW cited lack of funds as a reason<\/b><span style=\"font-weight: 400;\"> for not extending assistance beyond \u20b950 lakh. Court directions for continued patient treatment have been challenged by the ministry in the Supreme Court, delaying patient relief.<\/span><\/li>\n<li style=\"font-weight: 400;\" aria-level=\"1\"><b>Patent Barriers to Local Drug Production:<\/b><span style=\"font-weight: 400;\"> Patent monopolies prevent local manufacturing of essential rare disease drugs like risdiplam and trikafta.Patent holders often refuse to market these medicines in India, exploiting monopolistic practices.<\/span><\/li>\n<\/ul>\n<h2><span style=\"font-size: 18pt;\"><b>Way Forward<\/b><\/span><\/h2>\n<ul>\n<li style=\"font-weight: 400;\" aria-level=\"1\"><b>Facilitate Local Production of Medicines:<\/b><span style=\"font-weight: 400;\"> The MoHFW must coordinate with the Department of Pharmaceuticals and the Department of Promotion of Industry and Internal Trade to promote domestic manufacturing of rare disease drugs.<\/span>\n<ul>\n<li style=\"font-weight: 400;\" aria-level=\"2\"><span style=\"font-weight: 400;\">Generic versions<\/span><b> could lower drug prices by 90\u201395%, <\/b><span style=\"font-weight: 400;\">dramatically improving accessibility.<\/span><\/li>\n<\/ul>\n<\/li>\n<li style=\"font-weight: 400;\" aria-level=\"1\"><b>Address Patent Monopolies:<\/b><span style=\"font-weight: 400;\"> Legal measures must be invoked to overcome patent barriers that restrict affordable medicine production and availability in India.<\/span>\n<ul>\n<li style=\"font-weight: 400;\" aria-level=\"2\"><span style=\"font-weight: 400;\">Government intervention is essential to prevent private monopolies from denying critical healthcare access.<\/span><\/li>\n<\/ul>\n<\/li>\n<li style=\"font-weight: 400;\" aria-level=\"1\"><b>Strengthen Funding Mechanisms: <\/b><span style=\"font-weight: 400;\">The financial support cap under the NPRD should be revised to reflect the actual cost of treatment.<\/span>\n<ul>\n<li style=\"font-weight: 400;\" aria-level=\"2\"><span style=\"font-weight: 400;\">Policy delays must be minimized to ensure timely access to life-saving therapies for rare disease patients.<\/span><\/li>\n<\/ul>\n<\/li>\n<li style=\"font-weight: 400;\" aria-level=\"1\"><b>Uphold Ethical and Legal Obligations: <\/b><span style=\"font-weight: 400;\">Authorities must uphold their constitutional and moral responsibilities to ensure that no child suffers or dies due to the inaccessibility of treatable medicines.<\/span>\n<ul>\n<li style=\"font-weight: 400;\" aria-level=\"2\"><span style=\"font-weight: 400;\">Swift action is necessary to prevent further hardship and heartbreak for families affected by rare diseases.<\/span><\/li>\n<\/ul>\n<\/li>\n<\/ul>\n<span class=\"vc_button\"><b>Additional Reading: <\/b><a href=\"https:\/\/pwonlyias.com\/stage\/current-affairs\/national-fund-for-rare-diseases\/\" target=\"_blank\" rel=\"noopener\"><b>National Fund for Rare Disease<\/b><\/a><\/span>\n<div class=\"vc_table_green\"><\/p>\n<table style=\"width: 99.6375%;\">\n<tbody>\n<tr>\n<td style=\"width: 111.19%; 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