{"id":58963,"date":"2018-10-18T13:33:52","date_gmt":"2018-10-18T17:33:52","guid":{"rendered":"https:\/\/rarediseases.org\/updated-study-analyzes-use-and-cost-of-orphan-drugs\/"},"modified":"2018-10-18T13:33:52","modified_gmt":"2018-10-18T17:33:52","slug":"updated-study-analyzes-use-and-cost-of-orphan-drugs","status":"publish","type":"post","link":"https:\/\/rarediseases.org\/es\/updated-study-analyzes-use-and-cost-of-orphan-drugs\/","title":{"rendered":"Updated Study Analyzes Use and Cost of Orphan Drugs"},"content":{"rendered":"<p><span style=\"font-weight: 400;\">Washington, D.C., October 18, 2018\u2014 Despite a record-breaking number of new approvals,\u00a0<\/span><span style=\"font-weight: 400;\">orphan drugs remain a nominal part of overall drug spending, accounting for only 9.6% of total sales in the U.S. in 2017, according to a new study released today by the IQVIA Institute. The study was commissioned by the National Organization for Rare Disorders (NORD) for the second year in a row to show trends in orphan drug usage and costs. <\/span><\/p>\n<p><span style=\"font-weight: 400;\">The major findings of the report are as follows:<\/span><\/p>\n<ul>\n<li style=\"font-weight: 400;\"><b>The Orphan Drug Act remains successful in encouraging the development and approval of orphan drugs<\/b><span style=\"font-weight: 400;\">. \u00a0In 2017, the Food and Drug Administration approved 80 orphan indications and 57 just within the first eight months of 2018 &#8212; shattering previous records. \u00a0<\/span><\/li>\n<li style=\"font-weight: 400;\"><b>The Orphan Drug Act has not been a major driver of drug pricing in the U.S.<\/b><span style=\"font-weight: 400;\"> In 2017, the median price of the top 10 rare disease therapies used by the greatest number of patients was less than $10,000 per year.<\/span><\/li>\n<li style=\"font-weight: 400;\"><b>In 2017, o<\/b><b>rphan drugs remained a small part of the overall medicine budget<\/b><b>.<\/b> <span style=\"font-weight: 400;\">Total drug spending in the United States in 2017 was $451 billion, with almost 56% spent on non-orphan traditional drugs, 34.7% spent on non-orphan specialty drugs and 9.6%<\/span> <span style=\"font-weight: 400;\">spent on orphan indications of approved orphan drugs. That is a 1.7 percentage point increase over 2016, which is in line with increased FDA approvals. <\/span><\/li>\n<\/ul>\n<p><span style=\"font-weight: 400;\">\u201c2017 was a year of innovation and advancements in rare diseases, with more FDA approvals of treatments for rare diseases than ever before,\u201d said NORD President and CEO Peter L. Saltonstall. \u201cThe recent IQVIA Institute study highlights the enduring importance of the Orphan Drug Act in making that progress possible.\u201d<\/span><\/p>\n<p><span style=\"font-weight: 400;\">\u201cIt is critical to note that orphan drugs remain a sliver of overall drug spending in the U.S.,\u201d Saltonstall said. \u201cNORD remains committed to shining a light on the simple truths that illustrate how the Orphan Drug Act continues to be vital to the future of rare disease drug research and development.\u201d<\/span><\/p>\n<p><span style=\"font-weight: 400;\">About 7,000 rare diseases have been identified, affecting approximately 30 million Americans. \u00a0Many affect only a few hundred or a few thousand individuals. Rare diseases tend to be chronic, serious and life-threatening. \u00a0More than 80 percent are believed to be genetic. <\/span><\/p>\n<p><span style=\"font-weight: 400;\">Information on the report, including a link to the study, is available on the NORD website at <\/span><a href=\"https:\/\/rarediseases.org\/rareinsights\"><span style=\"font-weight: 400;\">www.rarediseases.org\/rareinsights<\/span><\/a><span style=\"font-weight: 400;\">. <\/span><\/p>\n<p><span style=\"font-weight: 400;\">Editor\u2019s note: \u00a0Peter L. Saltonstall, President and CEO of NORD, is available for interviews on the report. \u00a0Contact Laura Mullen at <\/span><a href=\"mailto:lmullen@rarediseases.org\"><span style=\"font-weight: 400;\">lmullen@rarediseases.org<\/span><\/a><span style=\"font-weight: 400;\">. <\/span><\/p>\n<p style=\"text-align: center;\"><span style=\"font-weight: 400;\">###<\/span><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Washington, D.C., October 18, 2018\u2014 Despite a record-breaking number of new approvals,\u00a0orphan drugs remain a nominal part of overall drug spending, accounting for only 9.6% of total sales in the &hellip; <\/p>\n<p class=\"link-more\"><a href=\"https:\/\/rarediseases.org\/es\/updated-study-analyzes-use-and-cost-of-orphan-drugs\/\" class=\"more-link\">Continue reading<span class=\"screen-reader-text\"> &#8220;Updated Study Analyzes Use and Cost of Orphan Drugs&#8221;<\/span><\/a><\/p>\n","protected":false},"author":1,"featured_media":0,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"_relevanssi_hide_post":"","_relevanssi_hide_content":"","_relevanssi_pin_for_all":"","_relevanssi_pin_keywords":"","_relevanssi_unpin_keywords":"","_relevanssi_related_keywords":"","_relevanssi_related_include_ids":"","_relevanssi_related_exclude_ids":"","_relevanssi_related_no_append":"","_relevanssi_related_not_related":"","_relevanssi_related_posts":"","_relevanssi_noindex_reason":"","_price":"","_stock":"","_tribe_ticket_header":"","_tribe_default_ticket_provider":"","_tribe_ticket_capacity":"","_ticket_start_date":"","_ticket_end_date":"","_tribe_ticket_show_description":"","_tribe_ticket_show_not_going":false,"_tribe_ticket_use_global_stock":"","_tribe_ticket_global_stock_level":"","_global_stock_mode":"","_global_stock_cap":"","_tribe_rsvp_for_event":"","_tribe_ticket_going_count":"","_tribe_ticket_not_going_count":"","_tribe_tickets_list":"[]","_tribe_ticket_has_attendee_info_fields":false,"footnotes":""},"categories":[504],"tags":[1794,1793,1608,1792,1789,244,1275,1787,1788,1278,1796,1797,225,262,263,1791,1795,243,1623,383,1790],"class_list":["post-58963","post","type-post","status-publish","format-standard","hentry","category-press-releases","tag-30-million","tag-development","tag-drug-pricing","tag-drug-research","tag-drug-sales","tag-fda","tag-food-and-drug-administration","tag-iqvia","tag-iqvia-institute","tag-national-organization-for-rare-disorders","tag-non-orphan","tag-non-orphan-specialty-drugs","tag-nord","tag-orphan-drug-act","tag-orphan-drugs","tag-orphan-drugs-in-the-united-states","tag-orphan-indications","tag-peter-l-saltonstall","tag-rareinsights","tag-research","tag-study"],"acf":[],"_links":{"self":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/58963","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/comments?post=58963"}],"version-history":[{"count":0,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/58963\/revisions"}],"wp:attachment":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/media?parent=58963"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/categories?post=58963"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/tags?post=58963"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}