{"id":58876,"date":"2017-11-14T16:48:47","date_gmt":"2017-11-14T21:48:47","guid":{"rendered":"https:\/\/rarediseases.org\/statement-by-36-patient-organizations-in-opposition-to-senates-proposed-weakening-of-the-orphan-drug-tax-credit\/"},"modified":"2017-11-14T16:48:47","modified_gmt":"2017-11-14T21:48:47","slug":"statement-by-36-patient-organizations-in-opposition-to-senates-proposed-weakening-of-the-orphan-drug-tax-credit","status":"publish","type":"post","link":"https:\/\/rarediseases.org\/es\/statement-by-36-patient-organizations-in-opposition-to-senates-proposed-weakening-of-the-orphan-drug-tax-credit\/","title":{"rendered":"Statement by 36 Patient Organizations in Opposition to Senate’s Proposed Weakening of the Orphan Drug Tax Credit"},"content":{"rendered":"

Washington, D.C., November 14, 2017 \u2013<\/strong> \u201cToday, the Senate Finance Committee continues its consideration of the Tax Cuts and Jobs Act. Our organizations, which collectively represent millions of individuals with rare diseases, stand united in opposition to the Senate Finance Committee\u2019s proposal to substantially weaken the Orphan Drug Tax Credit (ODTC).<\/p>\n

The Orphan Drug Tax Credit is one of the most important incentives for developing innovative therapies for rare and neglected populations. Without the Orphan Drug Tax Credit, 33 percent fewer therapies could be developed for our patients going forward<\/a>.<\/p>\n

The Senate proposal would change the formula for calculating the credit, cutting the incentive in half for many rare disease populations. In addition, the proposal would limit which orphan therapies qualify for the credit, thus disincentivizing development for many individuals with rare diseases.<\/p>\n

We cannot afford to move backward. Ninety-five percent of individuals with rare diseases are still waiting for their first treatment, and any proposal that stands in their way to finally obtaining a safe and effective therapy is unacceptable.<\/p>\n

Thousands of Americans with rare diseases and their families have contacted Congress to voice their concern, and over 200 patient organizations support this credit<\/a>.<\/p>\n

We urge all Senators to stand with the 30 million Americans with a rare disease and fight for the Orphan Drug Tax Credit.\u201d<\/p>\n

Signers:<\/strong>
\nAlpha-1 Foundation
\nALS Association
\nAmerican Cancer Society Cancer Action Network
\nAmerican Lung Association
\nAutism Speaks
\nCrohn\u2019s & Colitis Foundation
\nDystonia Medical Research Foundation
\nDystonia Advocacy Network
\nEpilepsy Foundation
\nEverylife Foundation for Rare Diseases
\nFibrous Dysplasia Foundation
\nFriedreich\u2019s Ataxia Research Alliance
\nGBS|CIDP Foundation International
\nHuntington\u2019s Disease Society of America
\nImmune Deficiency Foundation
\nInternational Foundation for Functional Gastrointestinal Disorders
\nInternational Pemphigus & Pemphigoid Foundation
\nLung Cancer Alliance
\nThe Marfan Foundation
\nThe Michael J. Fox Foundation
\nMuscular Dystrophy Association
\nNational Alopecia Areata Foundation
\nNational Brain Tumor Society
\nNational Hemophilia Foundation
\nNational Organization for Rare Disorders (NORD)
\nNational PKU Alliance
\nNational Spasmodic Dysphonia Association
\nNephCure Kidney International
\nParent Project Muscular Dystrophy (PPMD)
\nParkinson Voice Project
\nPulmonary Fibrosis Foundation
\nPulmonary Hypertension Association
\nScleroderma Foundation
\nUnited Mitochondrial Disease Foundation
\nUS Hereditary Angioedema Association
\nWilkins Parkinson\u2019s Foundation<\/p>\n","protected":false},"excerpt":{"rendered":"

Washington, D.C., November 14, 2017 \u2013 \u201cToday, the Senate Finance Committee continues its consideration of the Tax Cuts and Jobs Act. Our organizations, which collectively represent millions of individuals with … <\/p>\n

Continue reading \u00abStatement by 36 Patient Organizations in Opposition to Senate’s Proposed Weakening of the Orphan Drug Tax Credit\u00bb<\/span><\/a><\/p>\n","protected":false},"author":47,"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":[232,190,662],"tags":[346,1410,347,263,315,1411,1402],"class_list":["post-58876","post","type-post","status-publish","format-standard","hentry","category-advocacy","category-featured-news","category-get-involved","tag-odtc","tag-orphan-drug-development","tag-orphan-drug-tax-credit","tag-orphan-drugs","tag-rare-disease","tag-senate-finance-committee","tag-tax-cuts-and-jobs-act"],"acf":[],"_links":{"self":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/58876","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\/47"}],"replies":[{"embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/comments?post=58876"}],"version-history":[{"count":0,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/58876\/revisions"}],"wp:attachment":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/media?parent=58876"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/categories?post=58876"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/tags?post=58876"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}