{"id":2196,"date":"2026-04-06T21:08:06","date_gmt":"2026-04-06T18:08:06","guid":{"rendered":"https:\/\/dmdwarrior.com\/?p=2196"},"modified":"2026-04-06T22:09:25","modified_gmt":"2026-04-06T19:09:25","slug":"duchenne-muscular-dystrophy-treatment-cost","status":"publish","type":"post","link":"https:\/\/dmdwarrior.com\/ar\/duchenne-muscular-dystrophy-treatment-cost\/","title":{"rendered":"\u0627\u0644\u062d\u0642\u064a\u0642\u0629 \u0627\u0644\u0645\u064f\u0631\u0651\u0629: \u0644\u0645\u0627\u0630\u0627 \u062e\u0631\u062c\u062a \u062a\u0643\u0627\u0644\u064a\u0641 \u0639\u0644\u0627\u062c \u0636\u0645\u0648\u0631 \u062f\u0648\u0634\u064a\u0646 \u0627\u0644\u0639\u0636\u0644\u064a \u0639\u0646 \u0627\u0644\u0633\u064a\u0637\u0631\u0629\u061f"},"content":{"rendered":"<p class=\"wp-block-paragraph\"><strong>\u0623\u0635\u0628\u062d\u062a \u062a\u0643\u0644\u0641\u0629 \u0639\u0644\u0627\u062c \u0636\u0645\u0648\u0631 \u062f\u0648\u0634\u064a\u0646 \u0627\u0644\u0639\u0636\u0644\u064a \u0648\u0627\u062d\u062f\u0629 \u0645\u0646 \u0623\u0643\u062b\u0631 \u0627\u0644\u0642\u0636\u0627\u064a\u0627 \u0625\u062b\u0627\u0631\u0629 \u0644\u0644\u062c\u062f\u0644 \u0648\u0627\u0644\u0625\u0634\u0643\u0627\u0644\u064a\u0629 \u0627\u0644\u0623\u062e\u0644\u0627\u0642\u064a\u0629 \u0641\u064a \u0627\u0644\u0637\u0628 \u0627\u0644\u062d\u062f\u064a\u062b.<\/strong> \u0645\u0646 \u062a\u0643\u0644\u0641\u0629 \u0639\u0644\u0627\u062c \u062f\u0648\u0634\u064a\u0646 \u0625\u0644\u0649 \u062a\u0633\u0639\u064a\u0631 \u0627\u0644\u0639\u0644\u0627\u062c \u0627\u0644\u062c\u064a\u0646\u064a \u0644\u0636\u0645\u0648\u0631 \u062f\u0648\u0634\u064a\u0646 \u0627\u0644\u0639\u0636\u0644\u064a\u060c \u062a\u0648\u0627\u062c\u0647 \u0627\u0644\u0639\u0627\u0626\u0644\u0627\u062a \u0645\u0637\u0627\u0644\u0628 \u0645\u0627\u0644\u064a\u0629 \u0644\u064a\u0633\u062a \u0645\u0631\u062a\u0641\u0639\u0629 \u0641\u062d\u0633\u0628\u060c \u0628\u0644 \u063a\u0627\u0644\u0628\u0627\u064b \u0645\u0627 \u062a\u0643\u0648\u0646 \u0643\u0627\u0631\u062b\u064a\u0629. <strong>\u0645\u0627 \u0643\u0627\u0646 \u064a\u0646\u0628\u063a\u064a \u0623\u0646 \u064a\u0643\u0648\u0646 \u0636\u0631\u0648\u0631\u0629 \u0637\u0628\u064a\u0629 \u0645\u0646\u0642\u0630\u0629 \u0644\u0644\u062d\u064a\u0627\u0629 \u0623\u0635\u0628\u062d \u0628\u062f\u0644\u0627\u064b \u0645\u0646 \u0630\u0644\u0643 \u062f\u0631\u0627\u0633\u0629 \u062d\u0627\u0644\u0629 \u0639\u0627\u0644\u0645\u064a\u0629 \u0641\u064a \u0627\u0644\u062a\u0633\u0639\u064a\u0631 \u0627\u0644\u0645\u0641\u0631\u0637\u060c \u0648\u0627\u0644\u0641\u0634\u0644 \u0627\u0644\u0646\u0638\u0627\u0645\u064a\u060c \u0648\u0627\u0644\u0625\u0647\u0645\u0627\u0644 \u0627\u0644\u0645\u0624\u0633\u0633\u064a.<\/strong><\/p>\n\n\n\n<p class=\"wp-block-paragraph\">\u0641\u064a \u0645\u062e\u062a\u0644\u0641 \u0623\u0646\u062d\u0627\u0621 \u0627\u0644\u0639\u0627\u0644\u0645\u060c \u064a\u0636\u0637\u0631 \u0627\u0644\u0622\u0628\u0627\u0621 \u0625\u0644\u0649 \u0645\u0648\u0627\u062c\u0647\u0629 \u0648\u0627\u0642\u0639 \u0644\u0627 \u064a\u0637\u0627\u0642: \u0627\u0644\u0639\u0644\u0627\u062c\u0627\u062a \u0645\u0648\u062c\u0648\u062f\u0629\u060c \u0644\u0643\u0646 \u0627\u0644\u0648\u0635\u0648\u0644 \u0625\u0644\u064a\u0647\u0627 \u064a\u062e\u0636\u0639 \u0644\u0644\u062b\u0631\u0648\u0629 \u0648\u0627\u0644\u062c\u063a\u0631\u0627\u0641\u064a\u0627 \u0648\u0627\u0644\u0642\u064a\u0648\u062f \u0627\u0644\u0628\u064a\u0631\u0648\u0642\u0631\u0627\u0637\u064a\u0629. <strong>\u0644\u0645 \u062a\u0639\u062f \u062a\u0643\u0644\u0641\u0629 \u0639\u0644\u0627\u062c \u0636\u0645\u0648\u0631 \u062f\u0648\u0634\u064a\u0646 \u0627\u0644\u0639\u0636\u0644\u064a \u0645\u062c\u0631\u062f \u0642\u0636\u064a\u0629 \u0631\u0639\u0627\u064a\u0629 \u0635\u062d\u064a\u0629\u060c \u0628\u0644 \u0623\u0635\u0628\u062d\u062a \u0623\u0632\u0645\u0629 \u0623\u062e\u0644\u0627\u0642\u064a\u0629 \u062a\u0643\u0634\u0641 \u0639\u0646 \u0623\u0648\u0644\u0648\u064a\u0627\u062a \u0634\u0631\u0643\u0627\u062a \u0627\u0644\u0623\u062f\u0648\u064a\u0629 \u0648\u0627\u0644\u062d\u0643\u0648\u0645\u0627\u062a \u0648\u062d\u062a\u0649 \u0645\u0646\u0638\u0645\u0627\u062a \u0648\u062c\u0645\u0639\u064a\u0627\u062a \u0627\u0644\u0645\u0646\u0627\u0635\u0631\u0629.<\/strong><\/p>\n\n\n\n<div class=\"wp-block-rank-math-toc-block\" id=\"rank-math-toc\"><h2>\u062c\u062f\u0648\u0644 \u0627\u0644\u0645\u062d\u062a\u0648\u064a\u0627\u062a<\/h2><nav><ul><li><a href=\"#the-unforgivable-reality-behind-duchenne-muscular-dystrophy-treatment-cost\">\u0627\u0644\u062d\u0642\u064a\u0642\u0629 \u0627\u0644\u062a\u064a \u0644\u0627 \u062a\u064f\u063a\u062a\u0641\u0631 \u0648\u0631\u0627\u0621 \u062a\u0643\u0644\u0641\u0629 \u0639\u0644\u0627\u062c \u0636\u0645\u0648\u0631 \u062f\u0648\u0634\u064a\u0646 \u0627\u0644\u0639\u0636\u0644\u064a<\/a><ul><\/ul><\/li><li><a href=\"#h-2-pharmaceutical-companies-profit-over-patients\">\u0634\u0631\u0643\u0627\u062a \u0627\u0644\u0623\u062f\u0648\u064a\u0629 - \u0647\u0644 \u0627\u0644\u0631\u0628\u062d \u0623\u0647\u0645 \u0645\u0646 \u0627\u0644\u0645\u0631\u0636\u0649\u061f<\/a><ul><\/ul><\/li><li><a href=\"#h-2-governments-and-health-ministries-passive-enablers\">\u0627\u0644\u062d\u0643\u0648\u0645\u0627\u062a \u0648\u0648\u0632\u0627\u0631\u0627\u062a \u0627\u0644\u0635\u062d\u0629 \u2013 \u062c\u0647\u0627\u062a \u062a\u0645\u0643\u064a\u0646 \u0633\u0644\u0628\u064a\u0629<\/a><ul><\/ul><\/li><li><a href=\"#h-2-advocacy-organizations-mission-drift-and-silence\">\u062c\u0645\u0639\u064a\u0627\u062a \u0636\u0645\u0648\u0631 \u0627\u0644\u0639\u0636\u0644\u0627\u062a \u0627\u0644\u062f\u0648\u0634\u064a\u0646\u064a \u2013 \u0627\u0646\u062d\u0631\u0627\u0641 \u0627\u0644\u0645\u0647\u0645\u0629 \u0648\u0627\u0644\u0635\u0645\u062a<\/a><ul><\/ul><\/li><li><a href=\"#h-2-the-human-cost-behind-duchenne-muscular-dystrophy-treatment-cost\">\u0627\u0644\u062a\u0643\u0644\u0641\u0629 \u0627\u0644\u0628\u0634\u0631\u064a\u0629 \u0648\u0631\u0627\u0621 \u062a\u0643\u0644\u0641\u0629 \u0639\u0644\u0627\u062c \u0636\u0645\u0648\u0631 \u062f\u0648\u0634\u064a\u0646 \u0627\u0644\u0639\u0636\u0644\u064a<\/a><ul><\/ul><\/li><li><a href=\"#h-2-a-broken-economic-model\">\u0646\u0645\u0648\u0630\u062c \u0627\u0642\u062a\u0635\u0627\u062f\u064a \u0645\u0639\u0637\u0644<\/a><ul><\/ul><\/li><li><a href=\"#h-2-what-needs-to-change-urgent-reforms\">\u0645\u0627 \u0627\u0644\u0630\u064a \u064a\u062c\u0628 \u062a\u063a\u064a\u064a\u0631\u0647 \u2013 \u0625\u0635\u0644\u0627\u062d\u0627\u062a \u0639\u0627\u062c\u0644\u0629<\/a><ul><\/ul><\/li><li><a href=\"#faq-duchenne-muscular-dystrophy-treatment-costs-are\">\u0627\u0644\u0623\u0633\u0626\u0644\u0629 \u0627\u0644\u0634\u0627\u0626\u0639\u0629: \u062a\u0643\u0627\u0644\u064a\u0641 \u0639\u0644\u0627\u062c \u0636\u0645\u0648\u0631 \u062f\u0648\u0634\u064a\u0646 \u0627\u0644\u0639\u0636\u0644\u064a<\/a><ul><li><a href=\"#faq-question-1775498414567\">\u0643\u0645 \u062a\u0628\u0644\u063a \u062a\u0643\u0644\u0641\u0629 \u0639\u0644\u0627\u062c \u0636\u0645\u0648\u0631 \u062f\u0648\u0634\u064a\u0646 \u0627\u0644\u0639\u0636\u0644\u064a\u061f<\/a><\/li><li><a href=\"#faq-question-1775498446894\">\u0644\u0645\u0627\u0630\u0627 \u064a\u064f\u0639\u062f \u0639\u0644\u0627\u062c \u0636\u0645\u0648\u0631 \u062f\u0648\u0634\u064a\u0646 \u0627\u0644\u0639\u0636\u0644\u064a \u0645\u0643\u0644\u0641\u0627\u064b \u0644\u0644\u063a\u0627\u064a\u0629\u061f<\/a><\/li><li><a href=\"#faq-question-1775498466979\">\u0647\u0644 \u062a\u063a\u0637\u064a \u0634\u0631\u0643\u0627\u062a \u0627\u0644\u062a\u0623\u0645\u064a\u0646 \u0623\u0648 \u0627\u0644\u0631\u0639\u0627\u064a\u0629 \u0627\u0644\u0635\u062d\u064a\u0629 \u0627\u0644\u062d\u0643\u0648\u0645\u064a\u0629 \u0639\u0644\u0627\u062c\u0627\u062a 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\u0628\u0627\u0644\u0645\u0633\u0627\u0621\u0644\u0629<\/a><\/li><\/ul><\/nav><\/div>\n\n\n\n<hr class=\"wp-block-separator has-alpha-channel-opacity\"\/>\n\n\n\n<h2 class=\"wp-block-heading\" id=\"the-unforgivable-reality-behind-duchenne-muscular-dystrophy-treatment-cost\"><strong>\u0627\u0644\u062d\u0642\u064a\u0642\u0629 \u0627\u0644\u062a\u064a \u0644\u0627 \u062a\u064f\u063a\u062a\u0641\u0631 \u0648\u0631\u0627\u0621 \u062a\u0643\u0644\u0641\u0629 \u0639\u0644\u0627\u062c \u0636\u0645\u0648\u0631 \u062f\u0648\u0634\u064a\u0646 \u0627\u0644\u0639\u0636\u0644\u064a<\/strong><\/h2>\n\n\n\n<p class=\"wp-block-paragraph\">\u0627\u0644\u0623\u0631\u0642\u0627\u0645 \u0648\u062d\u062f\u0647\u0627 \u0645\u0630\u0647\u0644\u0629. \u0642\u062f \u062a\u062a\u062c\u0627\u0648\u0632 \u062a\u0643\u0644\u0641\u0629 \u0628\u0639\u0636 \u0639\u0644\u0627\u062c\u0627\u062a \u0636\u0645\u0648\u0631 \u062f\u0648\u0634\u064a\u0646 \u0627\u0644\u0639\u0636\u0644\u064a\u060c 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\u0627\u0644\u062a\u062e\u0635\u0635\u0627\u062a \u0637\u0648\u064a\u0644\u0629 \u0627\u0644\u0623\u0645\u062f\u060c \u0645\u062c\u062a\u0645\u0639\u0629\u064b\u060c \u0641\u064a \u0631\u0641\u0639 \u0627\u0644\u062a\u0643\u0627\u0644\u064a\u0641 \u0627\u0644\u0625\u062c\u0645\u0627\u0644\u064a\u0629 \u0625\u0644\u0649 \u0645\u0644\u0627\u064a\u064a\u0646 \u0627\u0644\u062f\u0648\u0644\u0627\u0631\u0627\u062a \u0644\u0643\u0644 \u0645\u0631\u064a\u0636.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">\u0648\u0647\u0630\u0627 \u064a\u062b\u064a\u0631 \u0633\u0624\u0627\u0644\u0627\u064b \u0644\u0627 \u0645\u0641\u0631 \u0645\u0646\u0647:<br><strong>\u0643\u064a\u0641 \u0623\u0635\u0628\u062d \u0639\u0644\u0627\u062c \u0645\u0631\u0636 \u0646\u0627\u062f\u0631 \u064a\u0635\u064a\u0628 \u0627\u0644\u0623\u0637\u0641\u0627\u0644 \u0623\u062d\u062f \u0623\u063a\u0644\u0649 \u0627\u0644\u0645\u0633\u0627\u0639\u064a \u0641\u064a \u0645\u062c\u0627\u0644 \u0627\u0644\u0631\u0639\u0627\u064a\u0629 \u0627\u0644\u0635\u062d\u064a\u0629 \u0627\u0644\u062d\u062f\u064a\u062b\u0629\u061f<\/strong><\/p>\n\n\n\n<hr class=\"wp-block-separator has-alpha-channel-opacity\"\/>\n\n\n\n<h3 class=\"wp-block-heading\" id=\"gene-therapy-pricing-innovation-or-exploitation\"><strong>\u062a\u0633\u0639\u064a\u0631 \u0627\u0644\u0639\u0644\u0627\u062c \u0627\u0644\u062c\u064a\u0646\u064a \u2013 \u0627\u0628\u062a\u0643\u0627\u0631 \u0623\u0645 \u0627\u0633\u062a\u063a\u0644\u0627\u0644\u061f<\/strong><\/h3>\n\n\n\n<p class=\"wp-block-paragraph\">\u0643\u062b\u064a\u0631\u0627\u064b \u0645\u0627 \u062a\u064f\u0642\u062f\u0651\u0645 \u0627\u0644\u0639\u0644\u0627\u062c\u0627\u062a \u0627\u0644\u062c\u064a\u0646\u064a\u0629 \u0639\u0644\u0649 \u0623\u0646\u0647\u0627 \u0625\u0646\u062c\u0627\u0632\u0627\u062a \u062b\u0648\u0631\u064a\u0629\u060c \u0648\u0647\u064a \u0643\u0630\u0644\u0643 \u0645\u0646 \u0627\u0644\u0646\u0627\u062d\u064a\u0629 \u0627\u0644\u0639\u0644\u0645\u064a\u0629. \u0644\u0643\u0646\u0647\u0627 \u0645\u0646 \u0627\u0644\u0646\u0627\u062d\u064a\u0629 \u0627\u0644\u0627\u0642\u062a\u0635\u0627\u062f\u064a\u0629\u060c \u0623\u0635\u0628\u062d\u062a \u0631\u0645\u0632\u0627\u064b \u0644\u0633\u0644\u0648\u0643 \u062a\u0633\u0639\u064a\u0631 \u0645\u062a\u0637\u0631\u0641.<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li><strong>\u0639\u0644\u0627\u062c\u0627\u062a \u062c\u064a\u0646\u064a\u0629 \u0644\u0645\u0631\u0629 \u0648\u0627\u062d\u062f\u0629 \u0628\u0623\u0633\u0639\u0627\u0631 \u062a\u0632\u064a\u062f \u0639\u0646 2.9 \u0645\u0644\u064a\u0648\u0646 \u062f\u0648\u0644\u0627\u0631 \u0623\u0645\u0631\u064a\u0643\u064a<\/strong><\/li>\n\n\n\n<li>\u0628\u064a\u0627\u0646\u0627\u062a \u0645\u062d\u062f\u0648\u062f\u0629 \u062d\u0648\u0644 \u0627\u0644\u0641\u0639\u0627\u0644\u064a\u0629 \u0639\u0644\u0649 \u0627\u0644\u0645\u062f\u0649 \u0627\u0644\u0637\u0648\u064a\u0644<\/li>\n\n\n\n<li><strong>\u0627\u0644\u0648\u0635\u0648\u0644 \u0627\u0644\u0645\u062d\u062f\u0648\u062f \u0628\u0633\u0628\u0628 \u0639\u0648\u0627\u0626\u0642 \u0627\u0644\u0633\u062f\u0627\u062f<\/strong><\/li>\n<\/ul>\n\n\n\n<p class=\"wp-block-paragraph\">\u062a\u0628\u0631\u0631 \u0634\u0631\u0643\u0627\u062a \u0627\u0644\u0623\u062f\u0648\u064a\u0629 \u0647\u0630\u0647 \u0627\u0644\u062a\u0643\u0627\u0644\u064a\u0641 \u0628\u0627\u0644\u0625\u0634\u0627\u0631\u0629 \u0625\u0644\u0649 \u0645\u0627 \u064a\u0644\u064a:<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li>\u0646\u0641\u0642\u0627\u062a \u0627\u0644\u0628\u062d\u062b \u0648\u0627\u0644\u062a\u0637\u0648\u064a\u0631<\/li>\n\n\n\n<li>\u0645\u062c\u0645\u0648\u0639\u0627\u062a \u0627\u0644\u0645\u0631\u0636\u0649 \u0627\u0644\u0635\u063a\u064a\u0631\u0629 (\u0646\u0645\u0648\u0630\u062c \u0627\u0644\u0623\u062f\u0648\u064a\u0629 \u0627\u0644\u064a\u062a\u064a\u0645\u0629)<\/li>\n\n\n\n<li>\u0645\u062f\u062e\u0631\u0627\u062a \u0627\u0644\u0631\u0639\u0627\u064a\u0629 \u0627\u0644\u0635\u062d\u064a\u0629 \u0639\u0644\u0649 \u0627\u0644\u0645\u062f\u0649 \u0627\u0644\u0637\u0648\u064a\u0644<\/li>\n<\/ul>\n\n\n\n<p class=\"wp-block-paragraph\">\u0625\u0644\u0627 \u0623\u0646 \u0627\u0644\u0639\u062f\u064a\u062f \u0645\u0646 \u0627\u0644\u062a\u062d\u0644\u064a\u0644\u0627\u062a \u062a\u062a\u062d\u062f\u0649 \u0647\u0630\u0647 \u0627\u0644\u0627\u062f\u0639\u0627\u0621\u0627\u062a.<\/p>\n\n\n\n<h4 class=\"wp-block-heading\" id=\"evidence\">\u0634\u0647\u0627\u062f\u0629:<\/h4>\n\n\n\n<ul class=\"wp-block-list\">\n<li>\u0623\u0634\u0627\u0631\u062a \u062a\u0642\u0627\u0631\u064a\u0631 ICER (\u0645\u0639\u0647\u062f \u0627\u0644\u0645\u0631\u0627\u062c\u0639\u0629 \u0627\u0644\u0633\u0631\u064a\u0631\u064a\u0629 \u0648\u0627\u0644\u0627\u0642\u062a\u0635\u0627\u062f\u064a\u0629) \u0645\u0631\u0627\u0631\u064b\u0627 \u0648\u062a\u0643\u0631\u0627\u0631\u064b\u0627 \u0625\u0644\u0649 \u0623\u0646 \u0639\u0644\u0627\u062c\u0627\u062a \u0627\u0644\u0623\u0645\u0631\u0627\u0636 \u0627\u0644\u0646\u0627\u062f\u0631\u0629 \u062a\u062a\u062c\u0627\u0648\u0632 \u0639\u062a\u0628\u0627\u062a \u0641\u0639\u0627\u0644\u064a\u0629 \u0627\u0644\u062a\u0643\u0644\u0641\u0629.<\/li>\n\n\n\n<li>\u0648\u062c\u062f\u062a \u062f\u0631\u0627\u0633\u0629 \u0646\u064f\u0634\u0631\u062a \u0641\u064a \u0645\u062c\u0644\u0629 &quot;\u0647\u064a\u0644\u062b \u0623\u0641\u064a\u0631\u0632&quot; (2020) \u0623\u0646 \u062a\u0633\u0639\u064a\u0631 \u0627\u0644\u0623\u062f\u0648\u064a\u0629 \u0627\u0644\u064a\u062a\u064a\u0645\u0629 \u063a\u0627\u0644\u0628\u0627\u064b \u0645\u0627 \u064a\u0639\u0643\u0633 \u0645\u062f\u0649 \u062a\u0642\u0628\u0644 \u0627\u0644\u0633\u0648\u0642\u060c \u0648\u0644\u064a\u0633 \u062a\u0643\u0627\u0644\u064a\u0641 \u0627\u0633\u062a\u0631\u062f\u0627\u062f \u0627\u0644\u0628\u062d\u062b \u0648\u0627\u0644\u062a\u0637\u0648\u064a\u0631 \u0627\u0644\u0641\u0639\u0644\u064a\u0629.<\/li>\n<\/ul>\n\n\n\n<p class=\"wp-block-paragraph\">\u0648\u0627\u0644\u0646\u062a\u064a\u062c\u0629\u061f<br><strong>\u062a\u064f\u0641\u0631\u0636 \u0639\u0644\u0649 \u0627\u0644\u0639\u0627\u0626\u0644\u0627\u062a \u0623\u0633\u0639\u0627\u0631\u064c \u064a\u062a\u062d\u0645\u0644\u0647\u0627 \u0627\u0644\u0633\u0648\u0642\u060c \u0648\u0644\u064a\u0633 \u0623\u0633\u0639\u0627\u0631\u0627\u064b \u0639\u0627\u062f\u0644\u0629.<\/strong><\/p>\n\n\n\n<hr class=\"wp-block-separator has-alpha-channel-opacity\"\/>\n\n\n\n<h3 class=\"wp-block-heading\" id=\"exon-skipping-therapies-high-cost-modest-benefit\"><strong>\u0639\u0644\u0627\u062c\u0627\u062a \u062a\u062e\u0637\u064a \u0627\u0644\u0625\u0643\u0633\u0648\u0646 \u2013 \u062a\u0643\u0644\u0641\u0629 \u0639\u0627\u0644\u064a\u0629\u060c \u0641\u0627\u0626\u062f\u0629 \u0645\u062a\u0648\u0627\u0636\u0639\u0629<\/strong><\/h3>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>\u062a\u0643\u0644\u0641 \u0627\u0644\u0623\u062f\u0648\u064a\u0629 \u0627\u0644\u062a\u064a \u062a\u062a\u062e\u0637\u0649 \u0627\u0644\u0625\u0643\u0633\u0648\u0646 \u0645\u062b\u0644 \u0625\u064a\u062a\u064a\u0628\u0644\u064a\u0633\u064a\u0646 \u0648\u063a\u0648\u0644\u0648\u062f\u064a\u0631\u0633\u064a\u0646 \u0645\u0626\u0627\u062a \u0627\u0644\u0622\u0644\u0627\u0641 \u0645\u0646 \u0627\u0644\u062f\u0648\u0644\u0627\u0631\u0627\u062a \u0633\u0646\u0648\u064a\u0627\u064b\u060c \u0648\u0645\u0639 \u0630\u0644\u0643 \u0644\u0627 \u062a\u0632\u0627\u0644 \u0641\u0627\u0626\u062f\u062a\u0647\u0627 \u0627\u0644\u0633\u0631\u064a\u0631\u064a\u0629 \u0645\u0648\u0636\u0639 \u0646\u0642\u0627\u0634.<\/strong><\/p>\n\n\n\n<h4 class=\"wp-block-heading\" id=\"key-concerns\">\u0623\u0647\u0645 \u0627\u0644\u0645\u062e\u0627\u0648\u0641:<\/h4>\n\n\n\n<ul class=\"wp-block-list\">\n<li>\u062a\u062d\u0633\u0646 \u0645\u062d\u062f\u0648\u062f \u0641\u064a \u0627\u0644\u0646\u062a\u0627\u0626\u062c \u0627\u0644\u0648\u0638\u064a\u0641\u064a\u0629<\/li>\n\n\n\n<li>\u0627\u0644\u0645\u0648\u0627\u0641\u0642\u0629 \u0627\u0644\u0645\u0639\u062c\u0644\u0629 \u0628\u0646\u0627\u0621\u064b \u0639\u0644\u0649 \u0646\u0642\u0627\u0637 \u0646\u0647\u0627\u064a\u0629 \u0628\u062f\u064a\u0644\u0629<\/li>\n\n\n\n<li>\u0627\u0633\u062a\u0645\u0631\u0627\u0631 \u0627\u0631\u062a\u0641\u0627\u0639 \u0627\u0644\u0623\u0633\u0639\u0627\u0631 \u0639\u0644\u0649 \u0627\u0644\u0631\u063a\u0645 \u0645\u0646 \u0639\u062f\u0645 \u0627\u0644\u064a\u0642\u064a\u0646 \u0628\u0634\u0623\u0646 \u0627\u0644\u0641\u0639\u0627\u0644\u064a\u0629<\/li>\n<\/ul>\n\n\n\n<h4 class=\"wp-block-heading\" id=\"study-reference\">\u0645\u0631\u062c\u0639 \u0627\u0644\u062f\u0631\u0627\u0633\u0629:<\/h4>\n\n\n\n<ul class=\"wp-block-list\">\n<li><strong><a href=\"https:\/\/onlinelibrary.wiley.com\/doi\/full\/10.1002\/ana.23982\" target=\"_blank\" rel=\"noreferrer noopener\">\u0645\u0646\u062f\u0644 \u0648\u0622\u062e\u0631\u0648\u0646\u060c \u062d\u0648\u0644\u064a\u0627\u062a \u0639\u0644\u0645 \u0627\u0644\u0623\u0639\u0635\u0627\u0628 (2013)<\/a><\/strong><\/li>\n\n\n\n<li>\u0623\u0628\u0631\u0632\u062a \u0645\u0646\u0627\u0642\u0634\u0627\u062a \u0627\u0644\u0644\u062c\u0646\u0629 \u0627\u0644\u0627\u0633\u062a\u0634\u0627\u0631\u064a\u0629 FDA (2016) \u0639\u062f\u0645 \u0643\u0641\u0627\u064a\u0629 \u0627\u0644\u0623\u062f\u0644\u0629 \u0639\u0644\u0649 \u0648\u062c\u0648\u062f \u0641\u0627\u0626\u062f\u0629 \u0633\u0631\u064a\u0631\u064a\u0629 \u0642\u0648\u064a\u0629<\/li>\n<\/ul>\n\n\n\n<p class=\"wp-block-paragraph\">\u0639\u0644\u0649 \u0627\u0644\u0631\u063a\u0645 \u0645\u0646 \u0630\u0644\u0643\u060c \u0644\u0627 \u062a\u0632\u0627\u0644 \u0627\u0644\u0623\u0633\u0639\u0627\u0631 \u0645\u0631\u062a\u0641\u0639\u0629 \u0628\u0634\u0643\u0644 \u0645\u0628\u0627\u0644\u063a \u0641\u064a\u0647.<\/p>\n\n\n\n<hr class=\"wp-block-separator has-alpha-channel-opacity\"\/>\n\n\n\n<h2 class=\"wp-block-heading\" id=\"h-2-pharmaceutical-companies-profit-over-patients\"><strong>\u0634\u0631\u0643\u0627\u062a \u0627\u0644\u0623\u062f\u0648\u064a\u0629 - \u0647\u0644 \u0627\u0644\u0631\u0628\u062d \u0623\u0647\u0645 \u0645\u0646 \u0627\u0644\u0645\u0631\u0636\u0649\u061f<\/strong><\/h2>\n\n\n\n<p class=\"wp-block-paragraph\">\u0644\u0646\u0643\u0646 \u0635\u0631\u064a\u062d\u064a\u0646:<br>\u064a\u0639\u0643\u0633 \u0647\u064a\u0643\u0644 \u0627\u0644\u062a\u0633\u0639\u064a\u0631 \u0627\u0644\u062d\u0627\u0644\u064a \u0644\u062a\u0643\u0644\u0641\u0629 \u0639\u0644\u0627\u062c \u0636\u0645\u0648\u0631 \u062f\u0648\u0634\u064a\u0646 \u0627\u0644\u0639\u0636\u0644\u064a \u0646\u0638\u0627\u0645\u064b\u0627 \u0645\u0635\u0645\u0645\u064b\u0627 \u0644\u062a\u062d\u0642\u064a\u0642 \u0623\u0642\u0635\u0649 \u0642\u062f\u0631 \u0645\u0646 \u0627\u0644\u0631\u0628\u062d - \u0648\u0644\u064a\u0633 \u0648\u0635\u0648\u0644 \u0627\u0644\u0645\u0631\u0636\u0649.<\/p>\n\n\n\n<hr class=\"wp-block-separator has-alpha-channel-opacity\"\/>\n\n\n\n<h3 class=\"wp-block-heading\" id=\"h-3-the-orphan-drug-loophole\"><strong>\u062b\u063a\u0631\u0629 \u0627\u0644\u0623\u062f\u0648\u064a\u0629 \u0627\u0644\u064a\u062a\u064a\u0645\u0629<\/strong><\/h3>\n\n\n\n<p class=\"wp-block-paragraph\">\u0643\u0627\u0646 \u0627\u0644\u0647\u062f\u0641 \u0645\u0646 \u0642\u0627\u0646\u0648\u0646 \u0627\u0644\u0623\u062f\u0648\u064a\u0629 \u0627\u0644\u064a\u062a\u064a\u0645\u0629 (1983) \u0647\u0648 \u062a\u062d\u0641\u064a\u0632 \u0623\u0628\u062d\u0627\u062b \u0627\u0644\u0623\u0645\u0631\u0627\u0636 \u0627\u0644\u0646\u0627\u062f\u0631\u0629. \u0644\u0643\u0646\u0647 \u0628\u062f\u0644\u0627\u064b \u0645\u0646 \u0630\u0644\u0643\u060c \u062a\u0639\u0631\u0636 \u0644\u0627\u0646\u062a\u0642\u0627\u062f\u0627\u062a \u0648\u0627\u0633\u0639\u0629 \u0627\u0644\u0646\u0637\u0627\u0642 \u0644\u062a\u0645\u0643\u064a\u0646\u0647 \u0645\u0627 \u064a\u0644\u064a:<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li>\u062d\u0635\u0631\u064a\u0629 \u0633\u0648\u0642\u064a\u0629 \u0645\u0645\u062a\u062f\u0629<\/li>\n\n\n\n<li>\u0645\u0646\u0627\u0641\u0633\u0629 \u0645\u062d\u062f\u0648\u062f\u0629<\/li>\n\n\n\n<li>\u0627\u0633\u062a\u0631\u0627\u062a\u064a\u062c\u064a\u0627\u062a \u0627\u0644\u062a\u0633\u0639\u064a\u0631 \u0627\u0644\u0645\u0628\u0627\u0644\u063a \u0641\u064a\u0647<\/li>\n<\/ul>\n\n\n\n<p class=\"wp-block-paragraph\">\u0648\u062c\u062f\u062a \u062f\u0631\u0627\u0633\u0629 \u0646\u064f\u0634\u0631\u062a \u0641\u064a \u0645\u062c\u0644\u0629 \u0627\u0644\u062c\u0645\u0639\u064a\u0629 \u0627\u0644\u0637\u0628\u064a\u0629 \u0627\u0644\u0623\u0645\u0631\u064a\u0643\u064a\u0629 (2017) \u0623\u0646 \u0627\u0644\u0623\u062f\u0648\u064a\u0629 \u0627\u0644\u064a\u062a\u064a\u0645\u0629 \u063a\u0627\u0644\u0628\u0627\u064b \u0645\u0627 \u062a\u0643\u0648\u0646 \u0623\u0643\u062b\u0631 \u0631\u0628\u062d\u064a\u0629 \u0645\u0646 \u0627\u0644\u0623\u062f\u0648\u064a\u0629 \u063a\u064a\u0631 \u0627\u0644\u064a\u062a\u064a\u0645\u0629\u060c \u0645\u0645\u0627 \u064a\u062a\u0646\u0627\u0642\u0636 \u0645\u0639 \u0633\u0631\u062f\u064a\u0629 \u0627\u0644\u0636\u0631\u0648\u0631\u0629 \u0627\u0644\u0645\u0627\u0644\u064a\u0629.<\/p>\n\n\n\n<hr class=\"wp-block-separator has-alpha-channel-opacity\"\/>\n\n\n\n<h3 class=\"wp-block-heading\" id=\"h-3-pricing-without-accountability\"><strong>\u0627\u0644\u062a\u0633\u0639\u064a\u0631 \u0628\u062f\u0648\u0646 \u0645\u0633\u0627\u0621\u0644\u0629<\/strong><\/h3>\n\n\n\n<p class=\"wp-block-paragraph\">\u0639\u0644\u0649 \u0639\u0643\u0633 \u0627\u0644\u0639\u062f\u064a\u062f \u0645\u0646 \u0627\u0644\u0635\u0646\u0627\u0639\u0627\u062a\u060c \u062a\u0639\u0645\u0644 \u0639\u0645\u0644\u064a\u0629 \u062a\u0633\u0639\u064a\u0631 \u0627\u0644\u0623\u062f\u0648\u064a\u0629 \u0628\u0634\u0641\u0627\u0641\u064a\u0629 \u0645\u062d\u062f\u0648\u062f\u0629:<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li>\u0644\u0627 \u064a\u0648\u062c\u062f \u0625\u0637\u0627\u0631 \u062a\u0633\u0639\u064a\u0631 \u0639\u0627\u0644\u0645\u064a \u0645\u0648\u062d\u062f<\/li>\n\n\n\n<li>\u0627\u062a\u0641\u0627\u0642\u064a\u0627\u062a \u0627\u0644\u062e\u0635\u0645 \u0627\u0644\u0633\u0631\u064a\u0629<\/li>\n\n\n\n<li>\u0639\u062f\u0645 \u0627\u0644\u0625\u0641\u0635\u0627\u062d \u0639\u0646 \u062a\u0641\u0627\u0635\u064a\u0644 \u0627\u0644\u062a\u0643\u0627\u0644\u064a\u0641<\/li>\n<\/ul>\n\n\n\n<p class=\"wp-block-paragraph\">\u0645\u0646 \u0627\u0644\u0645\u062a\u0648\u0642\u0639 \u0623\u0646 \u064a\u0642\u0628\u0644 \u0627\u0644\u0645\u0631\u0636\u0649 \u0648\u0627\u0644\u062d\u0643\u0648\u0645\u0627\u062a \u0627\u0644\u062a\u0633\u0639\u064a\u0631 \u062f\u0648\u0646 \u0645\u0628\u0631\u0631.<\/p>\n\n\n\n<hr class=\"wp-block-separator has-alpha-channel-opacity\"\/>\n\n\n\n<h3 class=\"wp-block-heading\" id=\"h-3-strategic-scarcity-and-market-control\"><strong>\u0627\u0644\u0646\u062f\u0631\u0629 \u0627\u0644\u0627\u0633\u062a\u0631\u0627\u062a\u064a\u062c\u064a\u0629 \u0648\u0627\u0644\u0633\u064a\u0637\u0631\u0629 \u0639\u0644\u0649 \u0627\u0644\u0633\u0648\u0642<\/strong><\/h3>\n\n\n\n<p class=\"wp-block-paragraph\">\u062a\u0642\u0648\u0645 \u0628\u0639\u0636 \u0627\u0644\u0634\u0631\u0643\u0627\u062a \u0628\u062a\u0642\u064a\u064a\u062f \u0627\u0644\u0639\u0631\u0636\u060c \u0623\u0648 \u062a\u0623\u062e\u064a\u0631 \u0627\u0644\u062a\u0648\u0632\u064a\u0639 \u0627\u0644\u0639\u0627\u0644\u0645\u064a\u060c \u0623\u0648 \u0625\u0639\u0637\u0627\u0621 \u0627\u0644\u0623\u0648\u0644\u0648\u064a\u0629 \u0644\u0644\u0623\u0633\u0648\u0627\u0642 \u0630\u0627\u062a \u0627\u0644\u062f\u062e\u0644 \u0627\u0644\u0645\u0631\u062a\u0641\u0639. \u0648\u0647\u0630\u0627 \u064a\u062e\u0644\u0642 \u0645\u0627 \u064a\u0644\u064a:<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li>\u0627\u0644\u0646\u062f\u0631\u0629 \u0627\u0644\u0645\u0635\u0637\u0646\u0639\u0629<\/li>\n\n\n\n<li>\u0639\u062f\u0645 \u0627\u0644\u0645\u0633\u0627\u0648\u0627\u0629 \u0627\u0644\u062c\u063a\u0631\u0627\u0641\u064a\u0629<\/li>\n\n\n\n<li>\u062a\u0623\u062e\u0631 \u0627\u0644\u0648\u0635\u0648\u0644 \u0625\u0644\u0649 \u0627\u0644\u0639\u0644\u0627\u062c<\/li>\n<\/ul>\n\n\n\n<p class=\"wp-block-paragraph\">\u0628\u0627\u0644\u0646\u0633\u0628\u0629 \u0644\u0645\u0631\u0636 \u0645\u062a\u0641\u0627\u0642\u0645 \u0645\u062b\u0644 \u062f\u0648\u0634\u064a\u0646\u060c \u0641\u0625\u0646 \u0627\u0644\u062a\u0623\u062e\u064a\u0631 \u064a\u0639\u0646\u064a \u0636\u0631\u0631\u0627\u064b \u0644\u0627 \u064a\u0645\u0643\u0646 \u0625\u0635\u0644\u0627\u062d\u0647.<\/p>\n\n\n\n<hr class=\"wp-block-separator has-alpha-channel-opacity\"\/>\n\n\n\n<h2 class=\"wp-block-heading\" id=\"h-2-governments-and-health-ministries-passive-enablers\"><strong>\u0627\u0644\u062d\u0643\u0648\u0645\u0627\u062a \u0648\u0648\u0632\u0627\u0631\u0627\u062a \u0627\u0644\u0635\u062d\u0629 \u2013 \u062c\u0647\u0627\u062a \u062a\u0645\u0643\u064a\u0646 \u0633\u0644\u0628\u064a\u0629<\/strong><\/h2>\n\n\n\n<p class=\"wp-block-paragraph\">\u0625\u0630\u0627 \u062d\u062f\u062f\u062a \u0634\u0631\u0643\u0627\u062a \u0627\u0644\u0623\u062f\u0648\u064a\u0629 \u0627\u0644\u0623\u0633\u0639\u0627\u0631\u060c \u0641\u0625\u0646 \u0627\u0644\u062d\u0643\u0648\u0645\u0627\u062a \u063a\u0627\u0644\u0628\u0627\u064b \u0645\u0627 \u062a\u0641\u0634\u0644 \u0641\u064a \u0627\u0644\u0627\u0639\u062a\u0631\u0627\u0636 \u0639\u0644\u064a\u0647\u0627.<\/p>\n\n\n\n<hr class=\"wp-block-separator has-alpha-channel-opacity\"\/>\n\n\n\n<h3 class=\"wp-block-heading\" id=\"h-3-reimbursement-delays-that-cost-lives\"><strong>\u062a\u0623\u062e\u064a\u0631\u0627\u062a \u0641\u064a \u0633\u062f\u0627\u062f \u0627\u0644\u062a\u0643\u0627\u0644\u064a\u0641 \u062a\u062a\u0633\u0628\u0628 \u0641\u064a \u062e\u0633\u0627\u0626\u0631 \u0628\u0627\u0644\u0623\u0631\u0648\u0627\u062d<\/strong><\/h3>\n\n\n\n<p class=\"wp-block-paragraph\">\u0641\u064a \u0627\u0644\u0639\u062f\u064a\u062f \u0645\u0646 \u0627\u0644\u0628\u0644\u062f\u0627\u0646:<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li>\u062a\u0633\u062a\u063a\u0631\u0642 \u0639\u0645\u0644\u064a\u0627\u062a \u0627\u0644\u0645\u0648\u0627\u0641\u0642\u0629 \u0633\u0646\u0648\u0627\u062a<\/li>\n\n\n\n<li>\u062a\u0639\u062b\u0631\u062a \u0627\u0644\u0645\u0641\u0627\u0648\u0636\u0627\u062a \u0628\u0633\u0628\u0628 \u0627\u0644\u062a\u0633\u0639\u064a\u0631<\/li>\n\n\n\n<li>\u0627\u0644\u0645\u0631\u0636\u0649 \u064a\u0641\u0642\u062f\u0648\u0646 \u0623\u0647\u0644\u064a\u062a\u0647\u0645 \u0628\u0633\u0628\u0628 \u0628\u0644\u0648\u063a\u0647\u0645 \u0627\u0644\u0633\u0646 \u0627\u0644\u0642\u0627\u0646\u0648\u0646\u064a\u0629<\/li>\n<\/ul>\n\n\n\n<p class=\"wp-block-paragraph\">\u0647\u0630\u0627 \u0627\u0644\u062c\u0645\u0648\u062f \u0627\u0644\u0628\u064a\u0631\u0648\u0642\u0631\u0627\u0637\u064a \u064a\u062d\u0631\u0645 \u0627\u0644\u0646\u0627\u0633 \u0641\u0639\u0644\u064a\u0627\u064b \u0645\u0646 \u0627\u0644\u0639\u0644\u0627\u062c.<\/p>\n\n\n\n<hr class=\"wp-block-separator has-alpha-channel-opacity\"\/>\n\n\n\n<h3 class=\"wp-block-heading\" id=\"h-3-inequality-across-borders\"><strong>\u0639\u062f\u0645 \u0627\u0644\u0645\u0633\u0627\u0648\u0627\u0629 \u0639\u0628\u0631 \u0627\u0644\u062d\u062f\u0648\u062f<\/strong><\/h3>\n\n\n\n<p class=\"wp-block-paragraph\">\u062a\u062e\u062a\u0644\u0641 \u062a\u0643\u0644\u0641\u0629 \u0627\u0644\u062d\u0635\u0648\u0644 \u0639\u0644\u0649 \u0639\u0644\u0627\u062c \u0636\u0645\u0648\u0631 \u062f\u0648\u0634\u064a\u0646 \u0627\u0644\u0639\u0636\u0644\u064a \u0627\u062e\u062a\u0644\u0627\u0641\u0627\u064b \u0643\u0628\u064a\u0631\u0627\u064b:<\/p>\n\n\n\n<figure class=\"wp-block-table\"><table class=\"has-fixed-layout\"><thead><tr><th>\u0645\u0646\u0637\u0642\u0629<\/th><th>\u0645\u0633\u062a\u0648\u0649 \u0627\u0644\u0648\u0635\u0648\u0644<\/th><\/tr><\/thead><tbody><tr><td>\u0627\u0644\u0648\u0644\u0627\u064a\u0627\u062a \u0627\u0644\u0645\u062a\u062d\u062f\u0629 \u0627\u0644\u0623\u0645\u0631\u064a\u0643\u064a\u0629<\/td><td>\u062a\u0643\u0644\u0641\u0629 \u0639\u0627\u0644\u064a\u0629\u060c \u0648\u062a\u0639\u062a\u0645\u062f \u0639\u0644\u0649 \u0627\u0644\u062a\u0623\u0645\u064a\u0646<\/td><\/tr><tr><td>\u0623\u0648\u0631\u0648\u0628\u0627<\/td><td>\u0645\u062d\u062f\u0648\u062f \u0648\u0644\u0643\u0646\u0647 \u0645\u062f\u0639\u0648\u0645<\/td><\/tr><tr><td>\u0627\u0644\u0628\u0644\u062f\u0627\u0646 \u0627\u0644\u0646\u0627\u0645\u064a\u0629<\/td><td>\u0634\u0628\u0647 \u0645\u0639\u062f\u0648\u0645<\/td><\/tr><\/tbody><\/table><\/figure>\n\n\n\n<p class=\"wp-block-paragraph\">\u0648\u0647\u0630\u0627 \u064a\u062e\u0644\u0642 \u0648\u0627\u0642\u0639\u0627\u064b \u0645\u0642\u0644\u0642\u0627\u064b:<br><strong>\u062a\u0639\u062a\u0645\u062f \u0641\u0631\u0635\u0629 \u0627\u0644\u0637\u0641\u0644 \u0641\u064a \u0627\u0644\u0628\u0642\u0627\u0621 \u0639\u0644\u0649 \u0642\u064a\u062f \u0627\u0644\u062d\u064a\u0627\u0629 \u0639\u0644\u0649 \u062c\u0648\u0627\u0632 \u0633\u0641\u0631\u0647.<\/strong><\/p>\n\n\n\n<hr class=\"wp-block-separator has-alpha-channel-opacity\"\/>\n\n\n\n<h3 class=\"wp-block-heading\" id=\"h-3-budget-excuses-vs-policy-failures\"><strong>\u0623\u0639\u0630\u0627\u0631 \u0627\u0644\u0645\u064a\u0632\u0627\u0646\u064a\u0629 \u0645\u0642\u0627\u0628\u0644 \u0625\u062e\u0641\u0627\u0642\u0627\u062a \u0627\u0644\u0633\u064a\u0627\u0633\u0629<\/strong><\/h3>\n\n\n\n<p class=\"wp-block-paragraph\">\u0643\u062b\u064a\u0631\u0627\u064b \u0645\u0627 \u062a\u064f\u0634\u064a\u0631 \u0627\u0644\u062d\u0643\u0648\u0645\u0627\u062a \u0625\u0644\u0649 \u0642\u064a\u0648\u062f \u0627\u0644\u0645\u064a\u0632\u0627\u0646\u064a\u0629. \u0648\u0645\u0639 \u0630\u0644\u0643:<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li>\u063a\u0627\u0644\u0628\u0627\u064b \u0645\u0627 \u062a\u062e\u0635\u0635 \u0645\u064a\u0632\u0627\u0646\u064a\u0627\u062a \u0627\u0644\u0631\u0639\u0627\u064a\u0629 \u0627\u0644\u0635\u062d\u064a\u0629 \u0645\u0644\u064a\u0627\u0631\u0627\u062a \u0627\u0644\u062f\u0648\u0644\u0627\u0631\u0627\u062a \u0644\u0645\u062c\u0627\u0644\u0627\u062a \u0623\u0642\u0644 \u0623\u0647\u0645\u064a\u0629<\/li>\n\n\n\n<li>\u0644\u0627 \u064a\u0632\u0627\u0644 \u062a\u0645\u0648\u064a\u0644 \u0627\u0644\u0623\u0645\u0631\u0627\u0636 \u0627\u0644\u0646\u0627\u062f\u0631\u0629 \u0645\u0646\u062e\u0641\u0636\u0627\u064b \u0628\u0634\u0643\u0644 \u063a\u064a\u0631 \u0645\u062a\u0646\u0627\u0633\u0628<\/li>\n\n\n\n<li>\u0644\u0627 \u064a\u062a\u0645 \u0627\u0633\u062a\u063a\u0644\u0627\u0644 \u0642\u0648\u0629 \u0627\u0644\u062a\u0641\u0627\u0648\u0636 \u0628\u0627\u0644\u0634\u0643\u0644 \u0627\u0644\u0623\u0645\u062b\u0644<\/li>\n<\/ul>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>\u0627\u0644\u0645\u0633\u0623\u0644\u0629 \u0644\u0627 \u062a\u0642\u062a\u0635\u0631 \u0639\u0644\u0649 \u0627\u0644\u0642\u062f\u0631\u0629 \u0639\u0644\u0649 \u062a\u062d\u0645\u0644 \u0627\u0644\u062a\u0643\u0627\u0644\u064a\u0641 \u0641\u062d\u0633\u0628\u060c \u0628\u0644 \u062a\u062a\u0639\u0644\u0642 \u0623\u064a\u0636\u0627\u064b \u0628\u062a\u062d\u062f\u064a\u062f \u0627\u0644\u0623\u0648\u0644\u0648\u064a\u0627\u062a.<\/strong><\/p>\n\n\n\n<hr class=\"wp-block-separator has-alpha-channel-opacity\"\/>\n\n\n\n<h2 class=\"wp-block-heading\" id=\"h-2-advocacy-organizations-mission-drift-and-silence\"><strong>\u062c\u0645\u0639\u064a\u0627\u062a \u0636\u0645\u0648\u0631 \u0627\u0644\u0639\u0636\u0644\u0627\u062a \u0627\u0644\u062f\u0648\u0634\u064a\u0646\u064a \u2013 \u0627\u0646\u062d\u0631\u0627\u0641 \u0627\u0644\u0645\u0647\u0645\u0629 \u0648\u0627\u0644\u0635\u0645\u062a<\/strong><\/h2>\n\n\n\n<p class=\"wp-block-paragraph\">\u0644\u0639\u0644\u0647\u0627 \u0627\u0644\u062d\u0642\u064a\u0642\u0629 \u0627\u0644\u0623\u0643\u062b\u0631 \u0625\u0632\u0639\u0627\u062c\u0627\u064b:<br><strong>\u0641\u0634\u0644\u062a \u0628\u0639\u0636 \u0627\u0644\u0645\u0646\u0638\u0645\u0627\u062a \u0627\u0644\u062a\u064a \u0623\u0646\u0634\u0626\u062a \u0644\u062d\u0645\u0627\u064a\u0629 \u0627\u0644\u0645\u0631\u0636\u0649 \u0641\u064a \u062a\u062d\u062f\u064a \u0627\u0644\u0646\u0638\u0627\u0645 \u0628\u0634\u0643\u0644 \u0641\u0639\u0627\u0644.<\/strong><\/p>\n\n\n\n<hr class=\"wp-block-separator has-alpha-channel-opacity\"\/>\n\n\n\n<h3 class=\"wp-block-heading\" id=\"h-3-dependence-on-industry-funding\"><strong>\u0627\u0644\u0627\u0639\u062a\u0645\u0627\u062f \u0639\u0644\u0649 \u062a\u0645\u0648\u064a\u0644 \u0627\u0644\u0635\u0646\u0627\u0639\u0629<\/strong><\/h3>\n\n\n\n<p class=\"wp-block-paragraph\">\u062a\u062a\u0644\u0642\u0649 \u0627\u0644\u0639\u062f\u064a\u062f \u0645\u0646 \u062c\u0645\u0627\u0639\u0627\u062a \u0627\u0644\u0645\u0646\u0627\u0635\u0631\u0629 \u062a\u0645\u0648\u064a\u0644\u0627\u064b \u0645\u0646 \u0634\u0631\u0643\u0627\u062a \u0627\u0644\u0623\u062f\u0648\u064a\u0629. \u0648\u0647\u0630\u0627 \u064a\u062e\u0644\u0642 \u0645\u0627 \u064a\u0644\u064a:<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li>\u062a\u0636\u0627\u0631\u0628 \u0627\u0644\u0645\u0635\u0627\u0644\u062d<\/li>\n\n\n\n<li>\u0627\u0646\u062a\u0642\u0627\u062f\u0627\u062a \u0645\u062e\u0641\u0641\u0629<\/li>\n\n\n\n<li>\u0627\u0646\u062e\u0641\u0627\u0636 \u0627\u0644\u0636\u063a\u0637 \u0645\u0646 \u0623\u062c\u0644 \u0625\u0635\u0644\u0627\u062d \u0627\u0644\u0623\u0633\u0639\u0627\u0631<\/li>\n<\/ul>\n\n\n\n<hr class=\"wp-block-separator has-alpha-channel-opacity\"\/>\n\n\n\n<h3 class=\"wp-block-heading\" id=\"h-3-awareness-without-action\"><strong>\u0627\u0644\u0648\u0639\u064a \u062f\u0648\u0646 \u0641\u0639\u0644<\/strong><\/h3>\n\n\n\n<p class=\"wp-block-paragraph\">\u0625\u0646 \u0631\u0641\u0639 \u0645\u0633\u062a\u0648\u0649 \u0627\u0644\u0648\u0639\u064a \u0623\u0645\u0631 \u0645\u0647\u0645\u060c \u0648\u0644\u0643\u0646\u0647 \u063a\u064a\u0631 \u0643\u0627\u0641\u064d.<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li>\u062a\u0633\u0644\u0637 \u0627\u0644\u062d\u0645\u0644\u0627\u062a \u0627\u0644\u0636\u0648\u0621 \u0639\u0644\u0649 \u0627\u0644\u0645\u0631\u0636<\/li>\n\n\n\n<li>\u062a\u0633\u0627\u0647\u0645 \u0627\u0644\u0642\u0635\u0635 \u0627\u0644\u0645\u0624\u062b\u0631\u0629 \u0641\u064a \u0632\u064a\u0627\u062f\u0629 \u0627\u0644\u062a\u0628\u0631\u0639\u0627\u062a<\/li>\n\n\n\n<li>\u0644\u0627 \u062a\u0632\u0627\u0644 \u0627\u0644\u0645\u0634\u0627\u0643\u0644 \u0627\u0644\u0647\u064a\u0643\u0644\u064a\u0629 \u062f\u0648\u0646 \u062d\u0644.<\/li>\n<\/ul>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>\u0644\u0627 \u062a\u062d\u062a\u0627\u062c \u0627\u0644\u0639\u0627\u0626\u0644\u0627\u062a \u0625\u0644\u0649 \u0627\u0644\u062a\u0648\u0639\u064a\u0629 \u0648\u062d\u062f\u0647\u0627\u060c \u0628\u0644 \u062a\u062d\u062a\u0627\u062c \u0625\u0644\u0649 \u0625\u0645\u0643\u0627\u0646\u064a\u0629 \u0627\u0644\u0648\u0635\u0648\u0644 \u0648\u0627\u0644\u0642\u062f\u0631\u0629 \u0639\u0644\u0649 \u062a\u062d\u0645\u0644 \u0627\u0644\u062a\u0643\u0627\u0644\u064a\u0641.<\/strong><\/p>\n\n\n\n<hr class=\"wp-block-separator has-alpha-channel-opacity\"\/>\n\n\n\n<h2 class=\"wp-block-heading\" id=\"h-2-the-human-cost-behind-duchenne-muscular-dystrophy-treatment-cost\"><strong>\u0627\u0644\u062a\u0643\u0644\u0641\u0629 \u0627\u0644\u0628\u0634\u0631\u064a\u0629 \u0648\u0631\u0627\u0621 \u062a\u0643\u0644\u0641\u0629 \u0639\u0644\u0627\u062c \u0636\u0645\u0648\u0631 \u062f\u0648\u0634\u064a\u0646 \u0627\u0644\u0639\u0636\u0644\u064a<\/strong><\/h2>\n\n\n\n<p class=\"wp-block-paragraph\">\u0648\u0631\u0627\u0621 \u0643\u0644 \u0625\u062d\u0635\u0627\u0626\u064a\u0629 \u0639\u0627\u0626\u0644\u0629 \u062a\u0648\u0627\u062c\u0647 \u0642\u0631\u0627\u0631\u0627\u062a \u0645\u0633\u062a\u062d\u064a\u0644\u0629:<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li>\u0628\u064a\u0639 \u0627\u0644\u0623\u0635\u0648\u0644 \u0623\u0648 \u0627\u0644\u062a\u062e\u0644\u064a \u0639\u0646 \u0627\u0644\u0639\u0644\u0627\u062c<\/li>\n\n\n\n<li>\u0627\u0644\u0627\u0646\u062a\u0642\u0627\u0644 \u0625\u0644\u0649 \u0645\u0643\u0627\u0646 \u0622\u062e\u0631 \u0644\u0644\u062d\u0635\u0648\u0644 \u0639\u0644\u0649 \u0627\u0644\u0631\u0639\u0627\u064a\u0629 \u0627\u0644\u0635\u062d\u064a\u0629<\/li>\n\n\n\n<li>\u062c\u0645\u0639 \u0627\u0644\u062a\u0628\u0631\u0639\u0627\u062a \u0645\u0646 \u0623\u062c\u0644 \u0627\u0644\u0628\u0642\u0627\u0621<\/li>\n<\/ul>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>\u0647\u0630\u0627 \u0644\u064a\u0633 \u0646\u0638\u0627\u0645 \u0631\u0639\u0627\u064a\u0629 \u0635\u062d\u064a\u0629 \u0641\u0639\u0627\u0644\u0627\u064b\u060c \u0628\u0644 \u0647\u0648 \u0623\u0634\u0628\u0647 \u0628\u0645\u0642\u0627\u0645\u0631\u0629 \u0644\u0644\u0628\u0642\u0627\u0621 \u0639\u0644\u0649 \u0642\u064a\u062f \u0627\u0644\u062d\u064a\u0627\u0629.<\/strong><\/p>\n\n\n\n<hr class=\"wp-block-separator has-alpha-channel-opacity\"\/>\n\n\n\n<h3 class=\"wp-block-heading\" id=\"h-3-psychological-and-financial-collapse\"><strong>\u0627\u0644\u0627\u0646\u0647\u064a\u0627\u0631 \u0627\u0644\u0646\u0641\u0633\u064a \u0648\u0627\u0644\u0645\u0627\u0644\u064a<\/strong><\/h3>\n\n\n\n<p class=\"wp-block-paragraph\">\u062a\u0634\u064a\u0631 \u0627\u0644\u0623\u0628\u062d\u0627\u062b \u0625\u0644\u0649 \u0645\u0627 \u064a\u0644\u064a:<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li>\u0632\u064a\u0627\u062f\u0629 \u0627\u0644\u0625\u0631\u0647\u0627\u0642 \u0644\u062f\u0649 \u0645\u0642\u062f\u0645\u064a \u0627\u0644\u0631\u0639\u0627\u064a\u0629 (<em>\u0637\u0628 \u0627\u0644\u0623\u0637\u0641\u0627\u0644\u060c 2018<\/em>)<\/li>\n\n\n\n<li>\u0627\u0644\u0623\u0639\u0628\u0627\u0621 \u0627\u0644\u0645\u0627\u0644\u064a\u0629 \u0627\u0644\u0634\u062f\u064a\u062f\u0629 \u0641\u064a \u0627\u0644\u0623\u0645\u0631\u0627\u0636 \u0627\u0644\u0646\u0627\u062f\u0631\u0629 (<em>\u0645\u062c\u0644\u0629 \u0623\u0648\u0631\u0641\u0627\u0646\u064a\u062a \u0644\u0644\u0623\u0645\u0631\u0627\u0636 \u0627\u0644\u0646\u0627\u062f\u0631\u0629\u060c 2021<\/em>)<\/li>\n<\/ul>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>\u0644\u0627 \u062a\u0642\u062a\u0635\u0631 \u0645\u0639\u0627\u0646\u0627\u0629 \u0627\u0644\u0639\u0627\u0626\u0644\u0627\u062a \u0639\u0644\u0649 \u0645\u0643\u0627\u0641\u062d\u0629 \u0627\u0644\u0645\u0631\u0636 \u0641\u062d\u0633\u0628\u060c \u0628\u0644 \u0625\u0646\u0647\u0627 \u062a\u062d\u0627\u0631\u0628 \u0627\u0644\u0646\u0638\u0627\u0645 \u0623\u064a\u0636\u0627\u064b.<\/strong><\/p>\n\n\n\n<hr class=\"wp-block-separator has-alpha-channel-opacity\"\/>\n\n\n\n<h2 class=\"wp-block-heading\" id=\"h-2-a-broken-economic-model\"><strong>\u0646\u0645\u0648\u0630\u062c \u0627\u0642\u062a\u0635\u0627\u062f\u064a \u0645\u0639\u0637\u0644<\/strong><\/h2>\n\n\n\n<p class=\"wp-block-paragraph\">\u0623\u0632\u0645\u0629 \u062a\u0643\u0644\u0641\u0629 \u0639\u0644\u0627\u062c \u0636\u0645\u0648\u0631 \u062f\u0648\u0634\u064a\u0646 \u0627\u0644\u0639\u0636\u0644\u064a \u062a\u0643\u0634\u0641 \u0639\u0646 \u0639\u064a\u0648\u0628 \u062c\u0648\u0647\u0631\u064a\u0629:<\/p>\n\n\n\n<hr class=\"wp-block-separator has-alpha-channel-opacity\"\/>\n\n\n\n<h3 class=\"wp-block-heading\" id=\"h-3-value-based-pricing-failure\"><strong>\u0641\u0634\u0644 \u0627\u0644\u062a\u0633\u0639\u064a\u0631 \u0627\u0644\u0642\u0627\u0626\u0645 \u0639\u0644\u0649 \u0627\u0644\u0642\u064a\u0645\u0629<\/strong><\/h3>\n\n\n\n<p class=\"wp-block-paragraph\">\u062a\u062f\u0651\u0639\u064a \u0646\u0645\u0627\u0630\u062c \u0627\u0644\u062a\u0633\u0639\u064a\u0631 \u0627\u0644\u062d\u0627\u0644\u064a\u0629 \u0623\u0646\u0647\u0627 \u062a\u0639\u0643\u0633 \u0627\u0644\u0642\u064a\u0645\u0629. \u0641\u064a \u0627\u0644\u0648\u0627\u0642\u0639:<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li>\u0627\u0644\u0642\u064a\u0645\u0629 \u0645\u0628\u0627\u0644\u063a \u0641\u064a\u0647\u0627<\/li>\n\n\n\n<li>\u0627\u0644\u0623\u062f\u0644\u0629 \u0645\u062d\u062f\u0648\u062f\u0629<\/li>\n\n\n\n<li>\u0627\u0644\u0623\u0633\u0639\u0627\u0631 \u0645\u0646\u0641\u0635\u0644\u0629 \u0639\u0646 \u0627\u0644\u0646\u062a\u0627\u0626\u062c<\/li>\n<\/ul>\n\n\n\n<hr class=\"wp-block-separator has-alpha-channel-opacity\"\/>\n\n\n\n<h3 class=\"wp-block-heading\" id=\"h-3-lack-of-global-coordination\"><strong>\u063a\u064a\u0627\u0628 \u0627\u0644\u062a\u0646\u0633\u064a\u0642 \u0627\u0644\u0639\u0627\u0644\u0645\u064a<\/strong><\/h3>\n\n\n\n<p class=\"wp-block-paragraph\">\u0644\u0627 \u062a\u0648\u062c\u062f \u0627\u0633\u062a\u0631\u0627\u062a\u064a\u062c\u064a\u0629 \u0645\u0648\u062d\u062f\u0629 \u0644\u0640:<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li>\u0627\u0644\u062a\u0641\u0627\u0648\u0636 \u0639\u0644\u0649 \u0627\u0644\u0623\u0633\u0639\u0627\u0631 \u0628\u0634\u0643\u0644 \u062c\u0645\u0627\u0639\u064a<\/li>\n\n\n\n<li>\u0645\u0634\u0627\u0631\u0643\u0629 \u0627\u0644\u0628\u064a\u0627\u0646\u0627\u062a \u0628\u0634\u0641\u0627\u0641\u064a\u0629<\/li>\n\n\n\n<li>\u0636\u0645\u0627\u0646 \u0627\u0644\u0648\u0635\u0648\u0644 \u0627\u0644\u0639\u0627\u062f\u0644<\/li>\n<\/ul>\n\n\n\n<hr class=\"wp-block-separator has-alpha-channel-opacity\"\/>\n\n\n\n<h2 class=\"wp-block-heading\" id=\"h-2-what-needs-to-change-urgent-reforms\"><strong>\u0645\u0627 \u0627\u0644\u0630\u064a \u064a\u062c\u0628 \u062a\u063a\u064a\u064a\u0631\u0647 \u2013 \u0625\u0635\u0644\u0627\u062d\u0627\u062a \u0639\u0627\u062c\u0644\u0629<\/strong><\/h2>\n\n\n\n<p class=\"wp-block-paragraph\">\u0647\u0630\u0627 \u0627\u0644\u0648\u0636\u0639 \u0644\u064a\u0633 \u062d\u062a\u0645\u064a\u0627\u064b. \u0625\u0646\u0647 \u0646\u062a\u064a\u062c\u0629 \u062e\u064a\u0627\u0631\u0627\u062a \u0633\u064a\u0627\u0633\u064a\u0629\u060c \u0648\u064a\u0645\u0643\u0646 \u062a\u063a\u064a\u064a\u0631\u0647.<\/p>\n\n\n\n<hr class=\"wp-block-separator has-alpha-channel-opacity\"\/>\n\n\n\n<h3 class=\"wp-block-heading\" id=\"h-3-enforce-pricing-transparency\"><strong>\u0641\u0631\u0636 \u0634\u0641\u0627\u0641\u064a\u0629 \u0627\u0644\u0623\u0633\u0639\u0627\u0631<\/strong><\/h3>\n\n\n\n<ul class=\"wp-block-list\">\n<li>\u0627\u0644\u0625\u0641\u0635\u0627\u062d \u0627\u0644\u0625\u0644\u0632\u0627\u0645\u064a \u0639\u0646 \u062a\u0643\u0627\u0644\u064a\u0641 \u0627\u0644\u0628\u062d\u062b \u0648\u0627\u0644\u062a\u0637\u0648\u064a\u0631<\/li>\n\n\n\n<li>\u0625\u0645\u0643\u0627\u0646\u064a\u0629 \u0627\u0644\u0648\u0635\u0648\u0644 \u0627\u0644\u0639\u0627\u0645 \u0625\u0644\u0649 \u0623\u0637\u0631 \u0627\u0644\u062a\u0633\u0639\u064a\u0631<\/li>\n<\/ul>\n\n\n\n<hr class=\"wp-block-separator has-alpha-channel-opacity\"\/>\n\n\n\n<h3 class=\"wp-block-heading\" id=\"h-3-global-price-negotiation-alliances\"><strong>\u062a\u062d\u0627\u0644\u0641\u0627\u062a \u0627\u0644\u062a\u0641\u0627\u0648\u0636 \u0639\u0644\u0649 \u0627\u0644\u0623\u0633\u0639\u0627\u0631 \u0627\u0644\u0639\u0627\u0644\u0645\u064a\u0629<\/strong><\/h3>\n\n\n\n<p class=\"wp-block-paragraph\">\u064a\u0646\u0628\u063a\u064a \u0639\u0644\u0649 \u0627\u0644\u062f\u0648\u0644 \u0623\u0646 \u062a\u062a\u0639\u0627\u0648\u0646 \u0645\u0646 \u0623\u062c\u0644:<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li>\u0632\u064a\u0627\u062f\u0629 \u0627\u0644\u0642\u062f\u0631\u0629 \u0627\u0644\u062a\u0641\u0627\u0648\u0636\u064a\u0629<\/li>\n\n\n\n<li>\u0645\u0646\u0639 \u0627\u0633\u062a\u063a\u0644\u0627\u0644 \u0627\u0644\u0623\u0633\u0639\u0627\u0631<\/li>\n<\/ul>\n\n\n\n<hr class=\"wp-block-separator has-alpha-channel-opacity\"\/>\n\n\n\n<h3 class=\"wp-block-heading\" id=\"h-3-reform-the-orphan-drug-system\"><strong>\u0625\u0635\u0644\u0627\u062d \u0646\u0638\u0627\u0645 \u0627\u0644\u0623\u062f\u0648\u064a\u0629 \u0627\u0644\u064a\u062a\u064a\u0645\u0629<\/strong><\/h3>\n\n\n\n<ul class=\"wp-block-list\">\n<li>\u064a\u062d\u062f \u0645\u0646 \u0627\u0644\u062d\u0635\u0631\u064a\u0629 \u0627\u0644\u0645\u0641\u0631\u0637\u0629<\/li>\n\n\n\n<li>\u0627\u0631\u0628\u0637 \u0627\u0644\u062d\u0648\u0627\u0641\u0632 \u0628\u0627\u0644\u0642\u062f\u0631\u0629 \u0639\u0644\u0649 \u062a\u062d\u0645\u0644 \u0627\u0644\u062a\u0643\u0627\u0644\u064a\u0641<\/li>\n<\/ul>\n\n\n\n<hr class=\"wp-block-separator has-alpha-channel-opacity\"\/>\n\n\n\n<h3 class=\"wp-block-heading\" id=\"h-3-independent-funding-for-advocacy-groups\"><strong>\u0627\u0644\u062a\u0645\u0648\u064a\u0644 \u0627\u0644\u0645\u0633\u062a\u0642\u0644 \u0644\u062c\u0645\u0627\u0639\u0627\u062a \u0627\u0644\u0645\u0646\u0627\u0635\u0631\u0629<\/strong><\/h3>\n\n\n\n<p class=\"wp-block-paragraph\">\u0644\u0644\u0642\u0636\u0627\u0621 \u0639\u0644\u0649 \u062a\u0636\u0627\u0631\u0628 \u0627\u0644\u0645\u0635\u0627\u0644\u062d:<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li>\u062a\u0642\u0644\u064a\u0644 \u0627\u0644\u0627\u0639\u062a\u0645\u0627\u062f \u0639\u0644\u0649 \u062a\u0645\u0648\u064a\u0644 \u0634\u0631\u0643\u0627\u062a \u0627\u0644\u0623\u062f\u0648\u064a\u0629<\/li>\n\n\n\n<li>\u0632\u064a\u0627\u062f\u0629 \u0627\u0644\u0645\u0646\u062d \u0627\u0644\u0639\u0627\u0645\u0629 \u0648\u0627\u0644\u0645\u0633\u062a\u0642\u0644\u0629<\/li>\n<\/ul>\n\n\n\n<hr class=\"wp-block-separator has-alpha-channel-opacity\"\/>\n\n\n\n<h2 class=\"wp-block-heading\" id=\"faq-duchenne-muscular-dystrophy-treatment-costs-are\"><strong>\u0627\u0644\u0623\u0633\u0626\u0644\u0629 \u0627\u0644\u0634\u0627\u0626\u0639\u0629: \u062a\u0643\u0627\u0644\u064a\u0641 \u0639\u0644\u0627\u062c \u0636\u0645\u0648\u0631 \u062f\u0648\u0634\u064a\u0646 \u0627\u0644\u0639\u0636\u0644\u064a<\/strong><\/h2>\n\n\n<div id=\"rank-math-faq\" class=\"rank-math-block\">\n<div class=\"rank-math-list\">\n<div id=\"faq-question-1775498414567\" class=\"rank-math-list-item\">\n<h3 class=\"rank-math-question\">\u0643\u0645 \u062a\u0628\u0644\u063a \u062a\u0643\u0644\u0641\u0629 \u0639\u0644\u0627\u062c \u0636\u0645\u0648\u0631 \u062f\u0648\u0634\u064a\u0646 \u0627\u0644\u0639\u0636\u0644\u064a\u061f<\/h3>\n<div class=\"rank-math-answer\">\n\n<p><strong>\u0642\u062f \u062a\u062a\u0631\u0627\u0648\u062d \u062a\u0643\u0644\u0641\u0629 \u0639\u0644\u0627\u062c \u0636\u0645\u0648\u0631 \u062f\u0648\u0634\u064a\u0646 \u0627\u0644\u0639\u0636\u0644\u064a \u0645\u0646 \u0645\u0626\u0627\u062a \u0627\u0644\u0622\u0644\u0627\u0641 \u0625\u0644\u0649 \u0639\u062f\u0629 \u0645\u0644\u0627\u064a\u064a\u0646 \u0645\u0646 \u0627\u0644\u062f\u0648\u0644\u0627\u0631\u0627\u062a \u0644\u0643\u0644 \u0645\u0631\u064a\u0636.<\/strong> \u0642\u062f \u062a\u062a\u062c\u0627\u0648\u0632 \u062a\u0643\u0644\u0641\u0629 \u0627\u0644\u0639\u0644\u0627\u062c\u0627\u062a \u0627\u0644\u062c\u064a\u0646\u064a\u0629 \u0648\u062d\u062f\u0647\u0627 \u0645\u0644\u064a\u0648\u0646\u064a \u0625\u0644\u0649 \u062b\u0644\u0627\u062b\u0629 \u0645\u0644\u0627\u064a\u064a\u0646 \u062f\u0648\u0644\u0627\u0631 \u0623\u0645\u0631\u064a\u0643\u064a \u0644\u0644\u0639\u0644\u0627\u062c \u0627\u0644\u0648\u0627\u062d\u062f\u060c \u0628\u064a\u0646\u0645\u0627 \u0642\u062f \u062a\u062a\u062c\u0627\u0648\u0632 \u062a\u0643\u0644\u0641\u0629 \u0623\u062f\u0648\u064a\u0629 \u062a\u062e\u0637\u064a \u0627\u0644\u0625\u0643\u0633\u0648\u0646 \u0645\u0644\u064a\u0648\u0646 \u0625\u0644\u0649 300 \u0623\u0644\u0641 \u062f\u0648\u0644\u0627\u0631 \u0623\u0645\u0631\u064a\u0643\u064a \u0633\u0646\u0648\u064a\u064b\u0627. \u0648\u0639\u0646\u062f \u062f\u0645\u062c\u0647\u0627 \u0645\u0639 \u0627\u0644\u0631\u0639\u0627\u064a\u0629 \u0627\u0644\u0645\u0633\u062a\u0645\u0631\u0629 - \u0643\u0627\u0644\u0639\u0644\u0627\u062c \u0627\u0644\u0637\u0628\u064a\u0639\u064a\u060c \u0648\u062f\u0639\u0645 \u0627\u0644\u0642\u0644\u0628\u060c \u0648\u0627\u0644\u0631\u0639\u0627\u064a\u0629 \u0627\u0644\u062a\u0646\u0641\u0633\u064a\u0629\u060c \u0648\u0627\u0644\u0623\u062c\u0647\u0632\u0629 \u0627\u0644\u0645\u0633\u0627\u0639\u062f\u0629 - \u063a\u0627\u0644\u0628\u064b\u0627 \u0645\u0627 \u062a\u0635\u0644 \u0627\u0644\u062a\u0643\u0644\u0641\u0629 \u0627\u0644\u0625\u062c\u0645\u0627\u0644\u064a\u0629 \u0639\u0644\u0649 \u0645\u062f\u0649 \u0627\u0644\u0639\u0645\u0631 \u0625\u0644\u0649 \u0645\u0644\u0627\u064a\u064a\u0646 \u0627\u0644\u062f\u0648\u0644\u0627\u0631\u0627\u062a. \u0648\u062a\u062e\u062a\u0644\u0641 \u0647\u0630\u0647 \u0627\u0644\u0623\u0631\u0642\u0627\u0645 \u0628\u0627\u062e\u062a\u0644\u0627\u0641 \u0627\u0644\u0628\u0644\u062f\u060c \u0648\u0627\u0644\u062a\u063a\u0637\u064a\u0629 \u0627\u0644\u062a\u0623\u0645\u064a\u0646\u064a\u0629\u060c \u0648\u0625\u0645\u0643\u0627\u0646\u064a\u0629 \u0627\u0644\u0648\u0635\u0648\u0644 \u0625\u0644\u0649 \u0628\u0631\u0627\u0645\u062c \u0627\u0644\u0639\u0644\u0627\u062c.<\/p>\n\n<\/div>\n<\/div>\n<div id=\"faq-question-1775498446894\" class=\"rank-math-list-item\">\n<h3 class=\"rank-math-question\">\u0644\u0645\u0627\u0630\u0627 \u064a\u064f\u0639\u062f \u0639\u0644\u0627\u062c \u0636\u0645\u0648\u0631 \u062f\u0648\u0634\u064a\u0646 \u0627\u0644\u0639\u0636\u0644\u064a \u0645\u0643\u0644\u0641\u0627\u064b \u0644\u0644\u063a\u0627\u064a\u0629\u061f<\/h3>\n<div class=\"rank-math-answer\">\n\n<p>\u064a\u0639\u0648\u062f \u0627\u0631\u062a\u0641\u0627\u0639 \u062a\u0643\u0644\u0641\u0629 \u0639\u0644\u0627\u062c \u0636\u0645\u0648\u0631 \u062f\u0648\u0634\u064a\u0646 \u0627\u0644\u0639\u0636\u0644\u064a \u0625\u0644\u0649 \u062d\u062f \u0643\u0628\u064a\u0631 \u0625\u0644\u0649 \u0639\u0648\u0627\u0645\u0644 \u0645\u062b\u0644 \u0645\u062d\u062f\u0648\u062f\u064a\u0629 \u0639\u062f\u062f \u0627\u0644\u0645\u0631\u0636\u0649 (\u0646\u062f\u0631\u0629 \u0627\u0644\u0645\u0631\u0636)\u060c \u0648\u0627\u0631\u062a\u0641\u0627\u0639 \u062a\u0643\u0627\u0644\u064a\u0641 \u0627\u0644\u0628\u062d\u062b \u0648\u0627\u0644\u062a\u0637\u0648\u064a\u0631\u060c \u0648\u0627\u062d\u062a\u0643\u0627\u0631 \u0627\u0644\u0633\u0648\u0642 \u0628\u0645\u0648\u062c\u0628 \u0642\u0648\u0627\u0646\u064a\u0646 \u0627\u0644\u0623\u062f\u0648\u064a\u0629 \u0627\u0644\u064a\u062a\u064a\u0645\u0629. \u0648\u0645\u0639 \u0630\u0644\u0643\u060c \u064a\u0631\u0649 \u0627\u0644\u0646\u0642\u0627\u062f \u0623\u0646 \u0627\u0644\u0623\u0633\u0639\u0627\u0631 \u063a\u0627\u0644\u0628\u064b\u0627 \u0645\u0627 \u062a\u062a\u062c\u0627\u0648\u0632 \u0645\u0627 \u0647\u0648 \u0636\u0631\u0648\u0631\u064a \u0644\u062a\u063a\u0637\u064a\u0629 \u0627\u0644\u062a\u0643\u0627\u0644\u064a\u0641\u060c \u0645\u0645\u0627 \u064a\u0639\u0643\u0633 \u0627\u0633\u062a\u0631\u0627\u062a\u064a\u062c\u064a\u0627\u062a \u062a\u0633\u0639\u064a\u0631 \u0642\u0627\u0626\u0645\u0629 \u0639\u0644\u0649 \u0627\u0644\u0631\u0628\u062d \u0628\u062f\u0644\u064b\u0627 \u0645\u0646 \u0627\u0644\u0642\u064a\u0645\u0629 \u0627\u0644\u062d\u0642\u064a\u0642\u064a\u0629 \u0623\u0648 \u0627\u0644\u0642\u062f\u0631\u0629 \u0639\u0644\u0649 \u062a\u062d\u0645\u0644 \u0627\u0644\u062a\u0643\u0627\u0644\u064a\u0641.<\/p>\n\n<\/div>\n<\/div>\n<div id=\"faq-question-1775498466979\" class=\"rank-math-list-item\">\n<h3 class=\"rank-math-question\">\u0647\u0644 \u062a\u063a\u0637\u064a \u0634\u0631\u0643\u0627\u062a \u0627\u0644\u062a\u0623\u0645\u064a\u0646 \u0623\u0648 \u0627\u0644\u0631\u0639\u0627\u064a\u0629 \u0627\u0644\u0635\u062d\u064a\u0629 \u0627\u0644\u062d\u0643\u0648\u0645\u064a\u0629 \u0639\u0644\u0627\u062c\u0627\u062a \u062f\u0648\u0634\u064a\u0646\u061f<\/h3>\n<div class=\"rank-math-answer\">\n\n<p>\u062a\u062a\u0641\u0627\u0648\u062a \u062a\u063a\u0637\u064a\u0629 \u062a\u0643\u0627\u0644\u064a\u0641 \u0639\u0644\u0627\u062c \u0636\u0645\u0648\u0631 \u062f\u0648\u0634\u064a\u0646 \u0627\u0644\u0639\u0636\u0644\u064a \u0628\u0634\u0643\u0644 \u0643\u0628\u064a\u0631. \u0641\u0641\u064a \u0628\u0639\u0636 \u0627\u0644\u0628\u0644\u062f\u0627\u0646\u060c \u0642\u062f \u062a\u063a\u0637\u064a \u0623\u0646\u0638\u0645\u0629 \u0627\u0644\u0631\u0639\u0627\u064a\u0629 \u0627\u0644\u0635\u062d\u064a\u0629 \u0627\u0644\u0648\u0637\u0646\u064a\u0629 \u0623\u0648 \u0634\u0631\u0643\u0627\u062a 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\u0627\u0644\u0639\u0644\u0627\u062c \u062a\u0645\u0627\u0645\u064b\u0627. \u0648\u062d\u062a\u0649 \u0641\u064a \u062d\u0627\u0644 \u062a\u0648\u0641\u0631 \u0627\u0644\u062a\u063a\u0637\u064a\u0629\u060c \u0641\u0625\u0646 \u0645\u0639\u0627\u064a\u064a\u0631 \u0627\u0644\u0623\u0647\u0644\u064a\u0629 \u0648\u062a\u0623\u062e\u064a\u0631\u0627\u062a \u0627\u0644\u0633\u062f\u0627\u062f \u0642\u062f \u062a\u062d\u062f\u0651 \u0628\u0634\u0643\u0644 \u0643\u0628\u064a\u0631 \u0645\u0646 \u0625\u0645\u0643\u0627\u0646\u064a\u0629 \u0627\u0644\u062d\u0635\u0648\u0644 \u0639\u0644\u0649 \u0627\u0644\u0639\u0644\u0627\u062c \u0641\u064a \u0627\u0644\u0648\u0642\u062a \u0627\u0644\u0645\u0646\u0627\u0633\u0628.<\/p>\n\n<\/div>\n<\/div>\n<div id=\"faq-question-1775498483029\" class=\"rank-math-list-item\">\n<h3 class=\"rank-math-question\">\u0647\u0644 \u064a\u0645\u0643\u0646 \u0644\u0644\u0639\u0627\u0626\u0644\u0627\u062a \u0627\u0644\u062d\u0635\u0648\u0644 \u0639\u0644\u0649 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\u0643\u0645\u0627 \u0642\u062f \u062a\u064f\u0642\u062f\u0645 \u0634\u0631\u0643\u0627\u062a \u0627\u0644\u0623\u062f\u0648\u064a\u0629 \u0628\u0631\u0627\u0645\u062c \u0645\u062d\u062f\u0648\u062f\u0629 \u0627\u0644\u0648\u0635\u0648\u0644. \u0645\u0639 \u0630\u0644\u0643\u060c \u063a\u0627\u0644\u0628\u064b\u0627 \u0645\u0627 \u062a\u0643\u0648\u0646 \u0647\u0630\u0647 \u0627\u0644\u062e\u064a\u0627\u0631\u0627\u062a \u063a\u064a\u0631 \u0645\u062a\u0633\u0642\u0629\u060c \u0648\u062a\u062a\u0633\u0645 \u0628\u062a\u0646\u0627\u0641\u0633\u064a\u0629 \u0639\u0627\u0644\u064a\u0629\u060c \u0648\u063a\u064a\u0631 \u0643\u0627\u0641\u064a\u0629 \u0644\u062a\u063a\u0637\u064a\u0629 \u0627\u0644\u062a\u0643\u0644\u0641\u0629 \u0627\u0644\u0625\u062c\u0645\u0627\u0644\u064a\u0629 \u0628\u0627\u0644\u0643\u0627\u0645\u0644\u060c \u0645\u0645\u0627 \u064a\u064f\u0628\u0642\u064a \u0627\u0644\u0639\u062f\u064a\u062f \u0645\u0646 \u0627\u0644\u0639\u0627\u0626\u0644\u0627\u062a \u0645\u064f\u062b\u0642\u0644\u0629 \u0628\u0623\u0639\u0628\u0627\u0621 \u0645\u0627\u0644\u064a\u0629 \u0643\u0628\u064a\u0631\u0629.<\/p>\n\n<\/div>\n<\/div>\n<div id=\"faq-question-1775498493664\" class=\"rank-math-list-item\">\n<h3 class=\"rank-math-question\">\u0647\u0644 \u0647\u0646\u0627\u0643 \u0623\u064a \u0637\u0631\u064a\u0642\u0629 \u0644\u062a\u0642\u0644\u064a\u0644 \u062a\u0643\u0644\u0641\u0629 \u0639\u0644\u0627\u062c \u0636\u0645\u0648\u0631 \u062f\u0648\u0634\u064a\u0646 \u0627\u0644\u0639\u0636\u0644\u064a\u061f<\/h3>\n<div class=\"rank-math-answer\">\n\n<p>\u064a\u064f\u0639\u062f\u0651 \u062e\u0641\u0636 \u062a\u0643\u0644\u0641\u0629 \u0639\u0644\u0627\u062c \u0636\u0645\u0648\u0631 \u062f\u0648\u0634\u064a\u0646 \u0627\u0644\u0639\u0636\u0644\u064a \u0639\u0644\u0649 \u0627\u0644\u0645\u0633\u062a\u0648\u0649 \u0627\u0644\u0641\u0631\u062f\u064a \u062a\u062d\u062f\u064a\u064b\u0627\u060c \u0644\u0643\u0646 \u0628\u0625\u0645\u0643\u0627\u0646 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\u0645\u0646 \u0628\u0631\u0627\u0645\u062c \u0627\u0644\u062f\u0639\u0645 \u063a\u064a\u0631 \u0627\u0644\u0631\u0628\u062d\u064a\u0629. \u0648\u0639\u0644\u0649 \u0646\u0637\u0627\u0642 \u0623\u0648\u0633\u0639\u060c \u062a\u064f\u0639\u062f\u0651 \u0627\u0644\u062a\u063a\u064a\u064a\u0631\u0627\u062a \u0627\u0644\u0646\u0638\u0627\u0645\u064a\u0629 - \u0645\u062b\u0644 \u062a\u0646\u0638\u064a\u0645 \u0627\u0644\u0623\u0633\u0639\u0627\u0631\u060c \u0648\u062c\u0647\u0648\u062f \u0627\u0644\u062a\u0641\u0627\u0648\u0636 \u0627\u0644\u0639\u0627\u0644\u0645\u064a\u0629\u060c \u0648\u0625\u0635\u0644\u0627\u062d \u0627\u0644\u0633\u064a\u0627\u0633\u0627\u062a - \u0636\u0631\u0648\u0631\u064a\u0629 \u0644\u062c\u0639\u0644 \u0627\u0644\u0639\u0644\u0627\u062c\u0627\u062a \u0641\u064a \u0645\u062a\u0646\u0627\u0648\u0644 \u0627\u0644\u062c\u0645\u064a\u0639 \u0648\u0628\u0623\u0633\u0639\u0627\u0631 \u0645\u0639\u0642\u0648\u0644\u0629.<\/p>\n\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n\n\n<figure class=\"wp-block-image size-large\"><img loading=\"lazy\" decoding=\"async\" width=\"683\" height=\"1024\" src=\"https:\/\/dmdwarrior.com\/wp-content\/uploads\/2026\/04\/dmd-treatment-cost-683x1024.jpg\" alt=\"\u062a\u0643\u0627\u0644\u064a\u0641 \u0639\u0644\u0627\u062c \u0636\u0645\u0648\u0631 \u062f\u0648\u0634\u064a\u0646 \u0627\u0644\u0639\u0636\u0644\u064a\" class=\"wp-image-7350\" title=\"\" srcset=\"https:\/\/dmdwarrior.com\/wp-content\/uploads\/2026\/04\/dmd-treatment-cost-683x1024.jpg 683w, https:\/\/dmdwarrior.com\/wp-content\/uploads\/2026\/04\/dmd-treatment-cost-200x300.jpg 200w, https:\/\/dmdwarrior.com\/wp-content\/uploads\/2026\/04\/dmd-treatment-cost-768x1152.jpg 768w, https:\/\/dmdwarrior.com\/wp-content\/uploads\/2026\/04\/dmd-treatment-cost-8x12.jpg 8w, https:\/\/dmdwarrior.com\/wp-content\/uploads\/2026\/04\/dmd-treatment-cost-280x420.jpg 280w, https:\/\/dmdwarrior.com\/wp-content\/uploads\/2026\/04\/dmd-treatment-cost-150x225.jpg 150w, https:\/\/dmdwarrior.com\/wp-content\/uploads\/2026\/04\/dmd-treatment-cost-300x450.jpg 300w, https:\/\/dmdwarrior.com\/wp-content\/uploads\/2026\/04\/dmd-treatment-cost-696x1044.jpg 696w, https:\/\/dmdwarrior.com\/wp-content\/uploads\/2026\/04\/dmd-treatment-cost.jpg 1024w\" sizes=\"auto, (max-width: 683px) 100vw, 683px\" \/><\/figure>\n\n\n\n<hr class=\"wp-block-separator has-alpha-channel-opacity\"\/>\n\n\n\n<h2 class=\"wp-block-heading\" id=\"final-thoughts-a-system-that-demands-accountability\"><strong>\u0623\u0641\u0643\u0627\u0631 \u062e\u062a\u0627\u0645\u064a\u0629 \u2013 \u0646\u0638\u0627\u0645 \u064a\u0637\u0627\u0644\u0628 \u0628\u0627\u0644\u0645\u0633\u0627\u0621\u0644\u0629<\/strong><\/h2>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>\u0625\u0646 \u0623\u0632\u0645\u0629 \u062a\u0643\u0644\u0641\u0629 \u0639\u0644\u0627\u062c \u0636\u0645\u0648\u0631 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\u0648\u063a\u0627\u0644\u0628\u0627\u064b \u0645\u0627 \u062a\u0628\u0642\u0649 \u062c\u0645\u0627\u0639\u0627\u062a \u0627\u0644\u0645\u0646\u0627\u0635\u0631\u0629 \u0645\u0642\u064a\u062f\u0629 \u0628\u0645\u062a\u0637\u0644\u0628\u0627\u062a \u0627\u0644\u062a\u0645\u0648\u064a\u0644.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">\u0648\u0641\u064a \u0627\u0644\u0648\u0642\u062a \u0646\u0641\u0633\u0647\u060c \u064a\u0641\u0642\u062f \u0627\u0644\u0623\u0637\u0641\u0627\u0644 \u0627\u0644\u0645\u0635\u0627\u0628\u0648\u0646 \u0628\u0636\u0645\u0648\u0631 \u062f\u0648\u0634\u064a\u0646 \u0627\u0644\u0639\u0636\u0644\u064a \u0627\u0644\u0648\u0642\u062a - \u0648\u0647\u0648 \u0648\u0642\u062a \u0644\u0627 \u064a\u0645\u0643\u0646\u0647\u0645 \u062a\u062d\u0645\u0644 \u062e\u0633\u0627\u0631\u062a\u0647.<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li>\u0647\u0630\u0627 \u0644\u064a\u0633 \u0627\u0628\u062a\u0643\u0627\u0631\u0627\u064b.<\/li>\n\n\n\n<li>\u0647\u0630\u0627 \u0644\u064a\u0633 \u062a\u0642\u062f\u0645\u0627\u064b.<\/li>\n\n\n\n<li>\u0647\u0630\u0627 \u0641\u0634\u0644\u064c \u0628\u0646\u064a\u0648\u064a\u064c\u0651 \u064a\u0633\u062a\u062f\u0639\u064a \u0645\u062d\u0627\u0633\u0628\u0629\u064b \u0639\u0627\u062c\u0644\u0629.<\/li>\n<\/ul>","protected":false},"excerpt":{"rendered":"<p>The duchenne muscular dystrophy treatment cost has become one of the most controversial and morally troubling issues in modern medicine. From duchenne therapy cost to gene therapy pricing for Duchenne muscular dystrophy, families are facing financial demands that are not just high\u2014they are often catastrophic. What should be a life-saving medical necessity has instead become [&hellip;]<\/p>\n","protected":false},"author":1,"featured_media":7349,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[282],"tags":[641,642,640,639,178,61],"class_list":["post-2196","post","type-post","status-publish","format-standard","has-post-thumbnail","category-editorials","tag-cost-of-dmd","tag-cost-of-dmd-treatment","tag-cost-of-duchenne-treatment","tag-duchenne-therapy-cost","tag-exon-skipping-therapies","tag-gene-therapy"],"_links":{"self":[{"href":"https:\/\/dmdwarrior.com\/ar\/wp-json\/wp\/v2\/posts\/2196","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/dmdwarrior.com\/ar\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/dmdwarrior.com\/ar\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/dmdwarrior.com\/ar\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/dmdwarrior.com\/ar\/wp-json\/wp\/v2\/comments?post=2196"}],"version-history":[{"count":0,"href":"https:\/\/dmdwarrior.com\/ar\/wp-json\/wp\/v2\/posts\/2196\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/dmdwarrior.com\/ar\/wp-json\/wp\/v2\/media\/7349"}],"wp:attachment":[{"href":"https:\/\/dmdwarrior.com\/ar\/wp-json\/wp\/v2\/media?parent=2196"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/dmdwarrior.com\/ar\/wp-json\/wp\/v2\/categories?post=2196"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/dmdwarrior.com\/ar\/wp-json\/wp\/v2\/tags?post=2196"}],"curies":[{"name":"\u0648\u0648\u0631\u062f\u0628\u0631\u064a\u0633","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}