{"id":31053,"date":"2023-12-21T10:30:50","date_gmt":"2023-12-21T15:30:50","guid":{"rendered":"https:\/\/avalere.com\/?p=31053"},"modified":"2024-01-04T13:02:41","modified_gmt":"2024-01-04T18:02:41","slug":"assessing-the-total-economic-burden-of-rare-disease","status":"publish","type":"post","link":"https:\/\/advisory.avalerehealth.com\/insights\/assessing-the-total-economic-burden-of-rare-disease","title":{"rendered":"Assessing the Total Economic Burden of Rare Disease"},"content":{"rendered":"<p>In this\u00a0whitepaper, Avalere describes the opportunity and importance of measuring the total economic impact of diseases, particularly for rare diseases. First, experts present a case for considering the total economic burden of rare disease, then explore the current state of evidence on the burden of rare diseases, concluding with real-world application of total economic impact research. The proposed hybrid study approach builds upon a prior assessment by the <a href=\"https:\/\/everylifefoundation.org\/burden-landing\/\">EveryLife Foundation<\/a> on the economic burden of 379 rare diseases, which can be used as a springboard for studying the disease-specific social and economic burden of a single rare disease. The team selected generalized myasthenia gravis (gMG) as a case study to measure direct and indirect non-medical costs based on Avalere\u2019s foundational research on <a href=\"https:\/\/advisory.avalerehealth.com\/insights\/patient-and-caregiver-centered-value-in-rare-disease-treatment\">patient- and caregiver-centered life impacts<\/a>. A previous mixed-methods <a href=\"https:\/\/www.ispor.org\/docs\/default-source\/intl2023\/2023-04-27ispor-gmg360-posterv13-0124128-pdf.pdf?sfvrsn=2654412e_0\">analysis<\/a> found that financial and occupational impacts ranked highly among the eight impacts studied\u2014emotional, financial, occupational, physical, planning &amp; autonomy, safety, sleep, and social\u2014elevating the importance of economic impacts.<\/p>\n<p>Figure 1 details potential components of total economic burden to be studied to better understand the true cost of these conditions, such as the significant out-of-pocket costs, labor and productivity impacts, and broader societal impacts. Understanding the true burden of rare diseases can help policymakers and the public better recognize the extent of the individual, family, and social impacts and allocate resources accordingly.<\/p>\n<h2><strong>Figure 1: Potential Components of a Total Economic Burden Study for Rare Diseases<\/strong><\/h2>\n<p><img loading=\"lazy\" decoding=\"async\" class=\"alignnone wp-image-31059 size-full\" src=\"https:\/\/advisory.avalerehealth.com\/wp-content\/uploads\/2023\/12\/Economic-Burden-of-Rare-Disease_Graphic.png\" alt=\"\" width=\"5000\" height=\"2476\" srcset=\"https:\/\/advisory.avalerehealth.com\/wp-content\/uploads\/2023\/12\/Economic-Burden-of-Rare-Disease_Graphic.png 5000w, https:\/\/advisory.avalerehealth.com\/wp-content\/uploads\/2023\/12\/Economic-Burden-of-Rare-Disease_Graphic-300x149.png 300w, https:\/\/advisory.avalerehealth.com\/wp-content\/uploads\/2023\/12\/Economic-Burden-of-Rare-Disease_Graphic-1024x507.png 1024w, https:\/\/advisory.avalerehealth.com\/wp-content\/uploads\/2023\/12\/Economic-Burden-of-Rare-Disease_Graphic-768x380.png 768w, https:\/\/advisory.avalerehealth.com\/wp-content\/uploads\/2023\/12\/Economic-Burden-of-Rare-Disease_Graphic-1536x761.png 1536w, https:\/\/advisory.avalerehealth.com\/wp-content\/uploads\/2023\/12\/Economic-Burden-of-Rare-Disease_Graphic-2048x1014.png 2048w\" sizes=\"auto, (max-width: 5000px) 100vw, 5000px\" \/><\/p>\n<p>Despite the challenges of calculating the total burden of disease (especially for heterogeneous populations), robust and well-designed research can offer useful insights and context for patients, caregivers, payers, health technology assessment bodies, healthcare providers, policymakers, manufacturers, researchers, and society.<\/p>\n<p>Access the whitepaper <a href=\"https:\/\/advisory.avalerehealth.com\/wp-content\/uploads\/2023\/12\/Assessing-the-Total-Economic-Burden-of-Generalized-Myasthenia-Gravis.pdf\"><u>here<\/u><\/a>.<\/p>\n<p><em>Funding for this whitepaper was provided by Alexion,\u00a0AstraZeneca Rare Disease.<\/em> <em>Avalere Health retained full editorial control.<\/em><\/p>\n<p>&nbsp;<\/p>\n","protected":false},"excerpt":{"rendered":"<p>In this\u00a0whitepaper, Avalere describes the opportunity and importance of measuring the total economic impact of diseases, particularly for rare diseases. First, experts present a case for considering the total economic burden of rare disease, then explore the current state of evidence on the burden of rare diseases, concluding with real-world application of total economic impact&hellip;<\/p>\n","protected":false},"author":28,"featured_media":12400,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[3],"tags":[],"content-categories":[148],"class_list":["post-31053","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-insights","content-categories-rwe-and-patient-centered-outcomes","entry","has-media"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v24.0 - https:\/\/yoast.com\/wordpress\/plugins\/seo\/ -->\n<title>Assessing the Total Economic Burden of Rare Disease | Avalere Health Advisory<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/advisory.avalerehealth.com\/insights\/assessing-the-total-economic-burden-of-rare-disease\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Assessing the Total Economic Burden of Rare Disease | Avalere Health Advisory\" \/>\n<meta property=\"og:description\" content=\"In this\u00a0whitepaper, Avalere describes the opportunity and importance of measuring the total economic impact of diseases, particularly for rare diseases. First, experts present a case for considering the total economic burden of rare disease, then explore the current state of evidence on the burden of rare diseases, concluding with real-world application of total economic impact&hellip;\" \/>\n<meta property=\"og:url\" content=\"https:\/\/advisory.avalerehealth.com\/insights\/assessing-the-total-economic-burden-of-rare-disease\" \/>\n<meta property=\"og:site_name\" content=\"Avalere Health Advisory\" \/>\n<meta property=\"article:published_time\" content=\"2023-12-21T15:30:50+00:00\" \/>\n<meta property=\"article:modified_time\" content=\"2024-01-04T18:02:41+00:00\" \/>\n<meta property=\"og:image\" content=\"https:\/\/advisory.avalerehealth.com\/wp-content\/uploads\/2018\/09\/12399-1-Naila_Wahid_600x400.jpg\" \/>\n\t<meta property=\"og:image:width\" content=\"600\" \/>\n\t<meta property=\"og:image:height\" content=\"400\" \/>\n\t<meta property=\"og:image:type\" content=\"image\/jpeg\" \/>\n<meta name=\"author\" content=\"Leah Keller\" \/>\n<meta name=\"twitter:card\" content=\"summary_large_image\" \/>\n<meta name=\"twitter:creator\" content=\"@avalerehealth\" \/>\n<meta name=\"twitter:site\" content=\"@avalerehealth\" \/>\n<meta name=\"twitter:label1\" content=\"Written by\" \/>\n\t<meta name=\"twitter:data1\" content=\"Leah Keller\" \/>\n\t<meta name=\"twitter:label2\" content=\"Est. reading time\" \/>\n\t<meta name=\"twitter:data2\" content=\"2 minutes\" \/>\n<!-- \/ Yoast SEO plugin. -->","yoast_head_json":{"title":"Assessing the Total Economic Burden of Rare Disease | Avalere Health Advisory","robots":{"index":"index","follow":"follow","max-snippet":"max-snippet:-1","max-image-preview":"max-image-preview:large","max-video-preview":"max-video-preview:-1"},"canonical":"https:\/\/advisory.avalerehealth.com\/insights\/assessing-the-total-economic-burden-of-rare-disease","og_locale":"en_US","og_type":"article","og_title":"Assessing the Total Economic Burden of Rare Disease | Avalere Health Advisory","og_description":"In this\u00a0whitepaper, Avalere describes the opportunity and importance of measuring the total economic impact of diseases, particularly for rare diseases. 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Prior to joining Avalere, Leah conducted policy research and analysis on federal healthcare issues such as Medicaid coverage and payment, commercial insurance coverage and access, healthcare reform, and ACA implementation at the Guttmacher Institute, a thinktank focused on advancing reproductive health and rights. Prior, Leah coordinated data collection, analysis, and publications for George Washington University\u2019s Center for Social Well-Being and Development. Leah holds an MPH in maternal and child health from George Washington University and a BA in anthropology from St. Mary\u2019s College of Maryland.","url":"https:\/\/advisory.avalerehealth.com\/author\/lkelleravalere-com"}]}},"_links":{"self":[{"href":"https:\/\/advisory.avalerehealth.com\/wp-json\/wp\/v2\/posts\/31053","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/advisory.avalerehealth.com\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/advisory.avalerehealth.com\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/advisory.avalerehealth.com\/wp-json\/wp\/v2\/users\/28"}],"replies":[{"embeddable":true,"href":"https:\/\/advisory.avalerehealth.com\/wp-json\/wp\/v2\/comments?post=31053"}],"version-history":[{"count":3,"href":"https:\/\/advisory.avalerehealth.com\/wp-json\/wp\/v2\/posts\/31053\/revisions"}],"predecessor-version":[{"id":31084,"href":"https:\/\/advisory.avalerehealth.com\/wp-json\/wp\/v2\/posts\/31053\/revisions\/31084"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/advisory.avalerehealth.com\/wp-json\/wp\/v2\/media\/12400"}],"wp:attachment":[{"href":"https:\/\/advisory.avalerehealth.com\/wp-json\/wp\/v2\/media?parent=31053"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/advisory.avalerehealth.com\/wp-json\/wp\/v2\/categories?post=31053"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/advisory.avalerehealth.com\/wp-json\/wp\/v2\/tags?post=31053"},{"taxonomy":"content-categories","embeddable":true,"href":"https:\/\/advisory.avalerehealth.com\/wp-json\/wp\/v2\/content-categories?post=31053"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}