{"id":59340,"date":"2021-10-29T17:07:13","date_gmt":"2021-10-29T21:07:13","guid":{"rendered":"https:\/\/rarediseases.org\/nord-response-to-new-draft-of-the-build-back-better-act\/"},"modified":"2021-10-29T17:07:13","modified_gmt":"2021-10-29T21:07:13","slug":"nord-response-to-new-draft-of-the-build-back-better-act","status":"publish","type":"post","link":"https:\/\/rarediseases.org\/es\/nord-response-to-new-draft-of-the-build-back-better-act\/","title":{"rendered":"NORD Response to New Draft of the Build Back Better Act"},"content":{"rendered":"

The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, issued the following statement in response to newly introduced draft of the\u202fBuild Back Better Act<\/em>\u202f(H.R.\u00a05376):<\/p>\n

Peter Saltonstall<\/strong>, CEO and President of NORD,\u00a0stated: \u201cAs negotiations continue on the Build Back Better Act,\u00a0NORD\u00a0urges Congress to\u00a0remove\u00a0this harmful provision\u00a0which\u00a0would\u00a0gut a key incentive\u00a0from the\u00a01983 Orphan Drug Act.\u00a0Attacking\u00a0the Orphan Drug Tax Credit (ODTC)\u00a0will\u00a0result in fewer cures for\u00a0the 30 million\u00a0U.S.\u00a0rare disease patients, the majority of whom do not have access to an FDA-approved treatment.\u201d<\/p>\n

“Section 138141 of the\u202fBuild Back Better Act<\/em>\u202fwould dramatically curtail the Orphan Drug Tax Credit for qualified clinical testing expenses by removing this critical incentive for all but the first approved orphan use of a new drug. Over 90% of rare diseases lack an FDA-approved treatment indicated for the specific rare disease. Each time a new orphan use of a drug is added to the label of a drug, more rare disease patients receive assurance that the drug is safe and effective for them. The importance of FDA approval for rare disease patients cannot be understated.<\/p>\n

“The ODTC can help to offset the cost of developing and testing orphan therapies as they move through the clinical trial process. This longstanding incentive is particularly important for the many smaller companies focused exclusively on rare diseases.<\/p>\n

The ODTC was already diminished in 2017 in the\u202fTax Cut and Jobs Act<\/em>\u202fwhen Congress reduced the total amount of the tax credit for qualifying clinical testing expenses from 50% to 25%.\u00a0\u00a0Given the significant time it takes to conduct clinical trials, the full impact of the changes made by the 2017 law are still unknown.\u00a0 To further reduce availability of the tax credit will hurt rare disease patients and hinder their ability to access treatments found to be safe and effective to treat their specific condition.”<\/p>\n

Take Action! Tell Congress to Protect the Orphan Drug Tax Credit Today!<\/b><\/a><\/h3>\n

About\u00a0the\u00a0National Organization for Rare Disorders (NORD)<\/span><\/i><\/b>
\n<\/span>The National Organization for Rare Disorders (NORD) is the leading independent advocacy organization representing all patients and families affected by rare\u00a0diseases\u202fin\u202fthe\u00a0United States. NORD began as a small group of patient advocates that formed a coalition to unify and mobilize support to pass the Orphan Drug Act of 1983. Since then, the organization has led the way in voicing the needs of the rare disease community, driving supportive policies, furthering education, advancing\u00a0medical\u202fresearch,\u202fand providing patient and family services for those who need them most.\u202fTogether\u00a0with over\u00a0300\u00a0disease-specific member organizations, more than 15,000 Rare Action Network advocates across all 50 states, and national and global partners, NORD delivers on its mission to improve the lives of those impacted by rare diseases.\u00a0Visit\u202f<\/span><\/i>rarediseases.org<\/span><\/i><\/a>.<\/span><\/i>\u00a0<\/span><\/p>\n","protected":false},"excerpt":{"rendered":"

The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, issued the following statement in response to newly introduced draft … <\/p>\n

Continue reading “NORD Response to New Draft of the Build Back Better Act”<\/span><\/a><\/p>\n","protected":false},"author":1,"featured_media":13219,"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":[232,190,504],"tags":[2867,2837,2838,236,1272,331,346,262,347,2866,361],"class_list":["post-59340","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-advocacy","category-featured-news","category-press-releases","tag-bill","tag-build-back-better","tag-build-back-better-act","tag-congress","tag-house-of-representatives","tag-legislation","tag-odtc","tag-orphan-drug-act","tag-orphan-drug-tax-credit","tag-reconciliation","tag-senate"],"acf":[],"_links":{"self":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/59340","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=59340"}],"version-history":[{"count":0,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/59340\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/media\/13219"}],"wp:attachment":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/media?parent=59340"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/categories?post=59340"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/tags?post=59340"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}