{"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\/hi\/duchenne-muscular-dystrophy-treatment-cost\/","title":{"rendered":"\u0915\u0921\u093c\u0935\u093e \u0938\u091a: \u0921\u094d\u092f\u0942\u0936\u0947\u0928 \u092e\u0938\u094d\u0915\u0941\u0932\u0930 \u0921\u093f\u0938\u094d\u091f\u094d\u0930\u0949\u092b\u0940 \u0915\u0947 \u0907\u0932\u093e\u091c \u0915\u0940 \u0932\u093e\u0917\u0924 \u092c\u0947\u0915\u093e\u092c\u0942 \u0915\u094d\u092f\u094b\u0902 \u0939\u0948?"},"content":{"rendered":"<p class=\"wp-block-paragraph\"><strong>\u0921\u094d\u092f\u0942\u0936\u0947\u0928 \u092e\u0938\u094d\u0915\u0941\u0932\u0930 \u0921\u093f\u0938\u094d\u091f\u094d\u0930\u0949\u092b\u0940 \u0915\u0947 \u0909\u092a\u091a\u093e\u0930 \u0915\u0940 \u0932\u093e\u0917\u0924 \u0906\u0927\u0941\u0928\u093f\u0915 \u091a\u093f\u0915\u093f\u0924\u094d\u0938\u093e \u092e\u0947\u0902 \u0938\u092c\u0938\u0947 \u0935\u093f\u0935\u093e\u0926\u093e\u0938\u094d\u092a\u0926 \u0914\u0930 \u0928\u0948\u0924\u093f\u0915 \u0930\u0942\u092a \u0938\u0947 \u092a\u0930\u0947\u0936\u093e\u0928 \u0915\u0930\u0928\u0947 \u0935\u093e\u0932\u0947 \u092e\u0941\u0926\u094d\u0926\u094b\u0902 \u092e\u0947\u0902 \u0938\u0947 \u090f\u0915 \u092c\u0928 \u0917\u0908 \u0939\u0948\u0964.<\/strong> \u0921\u094d\u092f\u0942\u0936\u0947\u0928 \u0930\u094b\u0917 \u0915\u0947 \u0907\u0932\u093e\u091c \u0915\u0940 \u0932\u093e\u0917\u0924 \u0938\u0947 \u0932\u0947\u0915\u0930 \u0921\u094d\u092f\u0942\u0936\u0947\u0928 \u092e\u0938\u094d\u0915\u0941\u0932\u0930 \u0921\u093f\u0938\u094d\u091f\u094d\u0930\u0949\u092b\u0940 \u0915\u0947 \u0932\u093f\u090f \u091c\u0940\u0928 \u0925\u0947\u0930\u0947\u092a\u0940 \u0915\u0940 \u0915\u0940\u092e\u0924 \u0924\u0915, \u092a\u0930\u093f\u0935\u093e\u0930\u094b\u0902 \u0915\u094b \u0910\u0938\u0940 \u0935\u093f\u0924\u094d\u0924\u0940\u092f \u092e\u093e\u0902\u0917\u094b\u0902 \u0915\u093e \u0938\u093e\u092e\u0928\u093e \u0915\u0930\u0928\u093e \u092a\u0921\u093c \u0930\u0939\u093e \u0939\u0948 \u091c\u094b \u0928 \u0915\u0947\u0935\u0932 \u092c\u0939\u0941\u0924 \u0905\u0927\u093f\u0915 \u0939\u0948\u0902, \u092c\u0932\u094d\u0915\u093f \u0905\u0915\u094d\u0938\u0930 \u0935\u093f\u0928\u093e\u0936\u0915\u093e\u0930\u0940 \u092d\u0940 \u0939\u094b\u0924\u0940 \u0939\u0948\u0902\u0964. <strong>\u091c\u094b \u090f\u0915 \u091c\u0940\u0935\u0928\u0930\u0915\u094d\u0937\u0915 \u091a\u093f\u0915\u093f\u0924\u094d\u0938\u093e \u0906\u0935\u0936\u094d\u092f\u0915\u0924\u093e \u0939\u094b\u0928\u0940 \u091a\u093e\u0939\u093f\u090f \u0925\u0940, \u0935\u0939 \u0907\u0938\u0915\u0947 \u092c\u091c\u093e\u092f \u0905\u0924\u094d\u092f\u0927\u093f\u0915 \u092e\u0942\u0932\u094d\u092f \u0928\u093f\u0930\u094d\u0927\u093e\u0930\u0923, \u092a\u094d\u0930\u0923\u093e\u0932\u0940\u0917\u0924 \u0935\u093f\u092b\u0932\u0924\u093e \u0914\u0930 \u0938\u0902\u0938\u094d\u0925\u093e\u0917\u0924 \u0909\u092a\u0947\u0915\u094d\u0937\u093e \u0915\u093e \u090f\u0915 \u0935\u0948\u0936\u094d\u0935\u093f\u0915 \u0915\u0947\u0938 \u0938\u094d\u091f\u0921\u0940 \u092c\u0928 \u0917\u0908 \u0939\u0948\u0964.<\/strong><\/p>\n\n\n\n<p class=\"wp-block-paragraph\">\u0935\u093f\u092d\u093f\u0928\u094d\u0928 \u092e\u0939\u093e\u0926\u094d\u0935\u0940\u092a\u094b\u0902 \u092e\u0947\u0902, \u092e\u093e\u0924\u093e-\u092a\u093f\u0924\u093e \u090f\u0915 \u0905\u0938\u0939\u0928\u0940\u092f \u0935\u093e\u0938\u094d\u0924\u0935\u093f\u0915\u0924\u093e \u0915\u093e \u0938\u093e\u092e\u0928\u093e \u0915\u0930\u0928\u0947 \u0915\u0947 \u0932\u093f\u090f \u092e\u091c\u092c\u0942\u0930 \u0939\u0948\u0902: \u0909\u092a\u091a\u093e\u0930 \u092e\u094c\u091c\u0942\u0926 \u0939\u0948\u0902, \u0932\u0947\u0915\u093f\u0928 \u0909\u0928 \u0924\u0915 \u092a\u0939\u0941\u0902\u091a \u0927\u0928, \u092d\u0942\u0917\u094b\u0932 \u0914\u0930 \u0928\u094c\u0915\u0930\u0936\u093e\u0939\u0940 \u0915\u0940 \u092c\u093e\u0927\u093e\u0913\u0902 \u0926\u094d\u0935\u093e\u0930\u093e \u0928\u093f\u0930\u094d\u0927\u093e\u0930\u093f\u0924 \u0939\u094b\u0924\u0940 \u0939\u0948\u0964. <strong>\u0921\u094d\u092f\u0942\u0936\u0947\u0928 \u092e\u0938\u094d\u0915\u0941\u0932\u0930 \u0921\u093f\u0938\u094d\u091f\u094d\u0930\u0949\u092b\u0940 \u0915\u0947 \u0909\u092a\u091a\u093e\u0930 \u0915\u0940 \u0932\u093e\u0917\u0924 \u0905\u092c \u0915\u0947\u0935\u0932 \u090f\u0915 \u0938\u094d\u0935\u093e\u0938\u094d\u0925\u094d\u092f \u0938\u0947\u0935\u093e \u0915\u093e \u092e\u0941\u0926\u094d\u0926\u093e \u0928\u0939\u0940\u0902 \u0930\u0939 \u0917\u092f\u093e \u0939\u0948 - \u092f\u0939 \u090f\u0915 \u0928\u0948\u0924\u093f\u0915 \u0938\u0902\u0915\u091f \u0939\u0948 \u091c\u094b \u0926\u0935\u093e \u0915\u0902\u092a\u0928\u093f\u092f\u094b\u0902, \u0938\u0930\u0915\u093e\u0930\u094b\u0902 \u0914\u0930 \u092f\u0939\u093e\u0902 \u0924\u0915 \u0915\u093f \u0935\u0915\u093e\u0932\u0924 \u0915\u0930\u0928\u0947 \u0935\u093e\u0932\u0947 \u0938\u0902\u0917\u0920\u0928\u094b\u0902 \u0914\u0930 \u0938\u0902\u0918\u094b\u0902 \u0915\u0940 \u092a\u094d\u0930\u093e\u0925\u092e\u093f\u0915\u0924\u093e\u0913\u0902 \u0915\u094b \u0909\u091c\u093e\u0917\u0930 \u0915\u0930\u0924\u093e \u0939\u0948\u0964.<\/strong><\/p>\n\n\n\n<div class=\"wp-block-rank-math-toc-block\" id=\"rank-math-toc\"><h2>\u0935\u093f\u0937\u092f\u0938\u0942\u091a\u0940<\/h2><nav><ul><li><a href=\"#the-unforgivable-reality-behind-duchenne-muscular-dystrophy-treatment-cost\">\u0921\u094d\u092f\u0942\u0936\u0947\u0928 \u092e\u0938\u094d\u0915\u0941\u0932\u0930 \u0921\u093f\u0938\u094d\u091f\u094d\u0930\u0949\u092b\u0940 \u0915\u0947 \u0909\u092a\u091a\u093e\u0930 \u0915\u0940 \u0932\u093e\u0917\u0924 \u0915\u0947 \u092a\u0940\u091b\u0947 \u0915\u0940 \u0905\u0915\u094d\u0937\u092e\u094d\u092f \u0935\u093e\u0938\u094d\u0924\u0935\u093f\u0915\u0924\u093e<\/a><ul><\/ul><\/li><li><a href=\"#h-2-pharmaceutical-companies-profit-over-patients\">\u0926\u0935\u093e \u0915\u0902\u092a\u0928\u093f\u092f\u093e\u0902 \u2013 \u092e\u0930\u0940\u091c\u094b\u0902 \u0938\u0947 \u091c\u094d\u092f\u093e\u0926\u093e \u092e\u0941\u0928\u093e\u092b\u093e?<\/a><ul><\/ul><\/li><li><a href=\"#h-2-governments-and-health-ministries-passive-enablers\">\u0938\u0930\u0915\u093e\u0930\u0947\u0902 \u0914\u0930 \u0938\u094d\u0935\u093e\u0938\u094d\u0925\u094d\u092f \u092e\u0902\u0924\u094d\u0930\u093e\u0932\u092f \u2013 \u0928\u093f\u0937\u094d\u0915\u094d\u0930\u093f\u092f \u0938\u0939\u093e\u092f\u0915<\/a><ul><\/ul><\/li><li><a href=\"#h-2-advocacy-organizations-mission-drift-and-silence\">\u0921\u0940\u090f\u092e\u0921\u0940 \u090f\u0938\u094b\u0938\u093f\u090f\u0936\u0928 - \u092e\u093f\u0936\u0928 \u0921\u094d\u0930\u093f\u092b\u094d\u091f \u0914\u0930 \u092e\u094c\u0928<\/a><ul><\/ul><\/li><li><a href=\"#h-2-the-human-cost-behind-duchenne-muscular-dystrophy-treatment-cost\">\u0921\u094d\u092f\u0942\u0936\u0947\u0928 \u092e\u0938\u094d\u0915\u0941\u0932\u0930 \u0921\u093f\u0938\u094d\u091f\u094d\u0930\u0949\u092b\u0940 \u0915\u0947 \u0909\u092a\u091a\u093e\u0930 \u0915\u0940 \u0932\u093e\u0917\u0924 \u0915\u0947 \u092a\u0940\u091b\u0947 \u092e\u093e\u0928\u0935\u0940\u092f \u0915\u0940\u092e\u0924<\/a><ul><\/ul><\/li><li><a href=\"#h-2-a-broken-economic-model\">\u090f\u0915 \u091f\u0942\u091f\u093e \u0939\u0941\u0906 \u0906\u0930\u094d\u0925\u093f\u0915 \u092e\u0949\u0921\u0932<\/a><ul><\/ul><\/li><li><a href=\"#h-2-what-needs-to-change-urgent-reforms\">\u0915\u094d\u092f\u093e \u092c\u0926\u0932\u0928\u0947 \u0915\u0940 \u091c\u0930\u0942\u0930\u0924 \u0939\u0948 \u2013 \u0924\u0924\u094d\u0915\u093e\u0932 \u0938\u0941\u0927\u093e\u0930<\/a><ul><\/ul><\/li><li><a href=\"#faq-duchenne-muscular-dystrophy-treatment-costs-are\">\u0905\u0915\u094d\u0938\u0930 \u092a\u0942\u091b\u0947 \u091c\u093e\u0928\u0947 \u0935\u093e\u0932\u0947 \u092a\u094d\u0930\u0936\u094d\u0928: \u0921\u094d\u092f\u0942\u0936\u0947\u0928 \u092e\u0938\u094d\u0915\u0941\u0932\u0930 \u0921\u093f\u0938\u094d\u091f\u094d\u0930\u0949\u092b\u0940 \u0915\u0947 \u0909\u092a\u091a\u093e\u0930 \u0915\u0940 \u0932\u093e\u0917\u0924\u0947\u0902<\/a><ul><li><a href=\"#faq-question-1775498414567\">\u0921\u094d\u092f\u0942\u0936\u0947\u0928 \u092e\u0938\u094d\u0915\u0941\u0932\u0930 \u0921\u093f\u0938\u094d\u091f\u094d\u0930\u0949\u092b\u0940 \u0915\u0947 \u0907\u0932\u093e\u091c \u092e\u0947\u0902 \u0915\u093f\u0924\u0928\u093e \u0916\u0930\u094d\u091a \u0906\u0924\u093e \u0939\u0948?<\/a><\/li><li><a href=\"#faq-question-1775498446894\">\u0921\u094d\u092f\u0942\u0936\u0947\u0928 \u092e\u0938\u094d\u0915\u0941\u0932\u0930 \u0921\u093f\u0938\u094d\u091f\u094d\u0930\u0949\u092b\u0940 \u0915\u093e \u0907\u0932\u093e\u091c \u0907\u0924\u0928\u093e \u092e\u0939\u0902\u0917\u093e \u0915\u094d\u092f\u094b\u0902 \u0939\u0948?<\/a><\/li><li><a href=\"#faq-question-1775498466979\">\u0915\u094d\u092f\u093e \u0921\u094d\u092f\u0942\u0936\u0947\u0928 \u0930\u094b\u0917 \u0915\u093e \u0907\u0932\u093e\u091c \u092c\u0940\u092e\u093e \u092f\u093e \u0938\u0930\u0915\u093e\u0930\u0940 \u0938\u094d\u0935\u093e\u0938\u094d\u0925\u094d\u092f \u0938\u0947\u0935\u093e \u0915\u0947 \u0905\u0902\u0924\u0930\u094d\u0917\u0924 \u0906\u0924\u093e \u0939\u0948?<\/a><\/li><li><a href=\"#faq-question-1775498483029\">\u0915\u094d\u092f\u093e \u092a\u0930\u093f\u0935\u093e\u0930\u094b\u0902 \u0915\u094b \u0921\u094d\u092f\u0942\u0936\u0947\u0928 \u0930\u094b\u0917 \u0915\u0947 \u0907\u0932\u093e\u091c \u0915\u0947 \u0932\u093f\u090f \u0935\u093f\u0924\u094d\u0924\u0940\u092f \u0938\u0939\u093e\u092f\u0924\u093e \u092e\u093f\u0932 \u0938\u0915\u0924\u0940 \u0939\u0948?<\/a><\/li><li><a href=\"#faq-question-1775498493664\">\u0915\u094d\u092f\u093e \u0921\u094d\u092f\u0942\u0936\u0947\u0928 \u092e\u0938\u094d\u0915\u0941\u0932\u0930 \u0921\u093f\u0938\u094d\u091f\u094d\u0930\u0949\u092b\u0940 \u0915\u0947 \u0907\u0932\u093e\u091c \u0915\u0940 \u0932\u093e\u0917\u0924 \u0915\u094b \u0915\u092e \u0915\u0930\u0928\u0947 \u0915\u093e \u0915\u094b\u0908 \u0924\u0930\u0940\u0915\u093e \u0939\u0948?<\/a><\/li><\/ul><\/li><li><a href=\"#final-thoughts-a-system-that-demands-accountability\">\u0905\u0902\u0924\u093f\u092e \u0935\u093f\u091a\u093e\u0930 \u2013 \u090f\u0915 \u0910\u0938\u0940 \u0935\u094d\u092f\u0935\u0938\u094d\u0925\u093e \u091c\u094b \u091c\u0935\u093e\u092c\u0926\u0947\u0939\u0940 \u0915\u0940 \u092e\u093e\u0902\u0917 \u0915\u0930\u0924\u0940 \u0939\u0948<\/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>\u0921\u094d\u092f\u0942\u0936\u0947\u0928 \u092e\u0938\u094d\u0915\u0941\u0932\u0930 \u0921\u093f\u0938\u094d\u091f\u094d\u0930\u0949\u092b\u0940 \u0915\u0947 \u0909\u092a\u091a\u093e\u0930 \u0915\u0940 \u0932\u093e\u0917\u0924 \u0915\u0947 \u092a\u0940\u091b\u0947 \u0915\u0940 \u0905\u0915\u094d\u0937\u092e\u094d\u092f \u0935\u093e\u0938\u094d\u0924\u0935\u093f\u0915\u0924\u093e<\/strong><\/h2>\n\n\n\n<p class=\"wp-block-paragraph\">\u0906\u0902\u0915\u0921\u093c\u0947 \u0939\u0940 \u091a\u094c\u0902\u0915\u093e\u0928\u0947 \u0935\u093e\u0932\u0947 \u0939\u0948\u0902\u0964 \u0921\u094d\u092f\u0942\u0936\u0947\u0928 \u092e\u0938\u094d\u0915\u0941\u0932\u0930 \u0921\u093f\u0938\u094d\u091f\u094d\u0930\u0949\u092b\u0940 \u0915\u0947 \u0915\u0941\u091b \u0909\u092a\u091a\u093e\u0930, \u0935\u093f\u0936\u0947\u0937 \u0930\u0942\u092a \u0938\u0947 \u091c\u0940\u0928 \u0925\u0947\u0930\u0947\u092a\u0940, \u092a\u094d\u0930\u0924\u093f \u0930\u094b\u0917\u0940 2-3 \u092e\u093f\u0932\u093f\u092f\u0928 \u0905\u092e\u0947\u0930\u093f\u0915\u0940 \u0921\u0949\u0932\u0930 \u0938\u0947 \u0905\u0927\u093f\u0915 \u0916\u0930\u094d\u091a \u0939\u094b \u0938\u0915\u0924\u0947 \u0939\u0948\u0902\u0964 \u090f\u0915\u094d\u0938\u0949\u0928-\u0938\u094d\u0915\u093f\u092a\u093f\u0902\u0917 \u0926\u0935\u093e\u090f\u0902, \u0915\u0949\u0930\u094d\u091f\u093f\u0915\u094b\u0938\u094d\u091f\u0947\u0930\u0949\u0907\u0921\u094d\u0938, \u0939\u0943\u0926\u092f \u0938\u0902\u092c\u0902\u0927\u0940 \u0926\u0935\u093e\u090f\u0902, \u0936\u094d\u0935\u0938\u0928 \u0938\u0939\u093e\u092f\u0924\u093e \u0914\u0930 \u0926\u0940\u0930\u094d\u0918\u0915\u093e\u0932\u093f\u0915 \u092c\u0939\u0941-\u0935\u093f\u0937\u092f\u0915 \u0926\u0947\u0916\u092d\u093e\u0932, \u092f\u0947 \u0938\u092d\u0940 \u092e\u093f\u0932\u0915\u0930 \u092a\u094d\u0930\u0924\u093f \u0930\u094b\u0917\u0940 \u091c\u0940\u0935\u0928 \u092d\u0930 \u0915\u0940 \u0932\u093e\u0917\u0924 \u0915\u094b \u0932\u093e\u0916\u094b\u0902 \u0921\u0949\u0932\u0930 \u0924\u0915 \u092a\u0939\u0941\u0902\u091a\u093e \u0926\u0947\u0924\u0947 \u0939\u0948\u0902\u0964.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">\u0907\u0938\u0938\u0947 \u090f\u0915 \u0905\u092a\u0930\u093f\u0939\u093e\u0930\u094d\u092f \u092a\u094d\u0930\u0936\u094d\u0928 \u0909\u0920\u0924\u093e \u0939\u0948:<br><strong>\u090f\u0915 \u0926\u0941\u0930\u094d\u0932\u092d \u092c\u093e\u0932 \u0930\u094b\u0917 \u0915\u093e \u0907\u0932\u093e\u091c \u0906\u0927\u0941\u0928\u093f\u0915 \u0938\u094d\u0935\u093e\u0938\u094d\u0925\u094d\u092f \u0938\u0947\u0935\u093e \u092e\u0947\u0902 \u0938\u092c\u0938\u0947 \u092e\u0939\u0902\u0917\u0947 \u092a\u094d\u0930\u092f\u093e\u0938\u094b\u0902 \u092e\u0947\u0902 \u0938\u0947 \u090f\u0915 \u0915\u0948\u0938\u0947 \u092c\u0928 \u0917\u092f\u093e?<\/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>\u091c\u0940\u0928 \u0925\u0947\u0930\u0947\u092a\u0940 \u0915\u0940 \u0915\u0940\u092e\u0924 \u0928\u093f\u0930\u094d\u0927\u093e\u0930\u0923 - \u0928\u0935\u093e\u091a\u093e\u0930 \u092f\u093e \u0936\u094b\u0937\u0923?<\/strong><\/h3>\n\n\n\n<p class=\"wp-block-paragraph\">\u091c\u0940\u0928 \u0925\u0947\u0930\u0947\u092a\u0940 \u0915\u094b \u0905\u0915\u094d\u0938\u0930 \u0915\u094d\u0930\u093e\u0902\u0924\u093f\u0915\u093e\u0930\u0940 \u0906\u0935\u093f\u0937\u094d\u0915\u093e\u0930\u094b\u0902 \u0915\u0947 \u0930\u0942\u092a \u092e\u0947\u0902 \u092a\u094d\u0930\u0938\u094d\u0924\u0941\u0924 \u0915\u093f\u092f\u093e \u091c\u093e\u0924\u093e \u0939\u0948\u0964 \u0935\u0948\u091c\u094d\u091e\u093e\u0928\u093f\u0915 \u0926\u0943\u0937\u094d\u091f\u093f \u0938\u0947, \u0935\u0947 \u0935\u093e\u0938\u094d\u0924\u0935 \u092e\u0947\u0902 \u0915\u094d\u0930\u093e\u0902\u0924\u093f\u0915\u093e\u0930\u0940 \u0939\u0948\u0902\u0964 \u0932\u0947\u0915\u093f\u0928 \u0906\u0930\u094d\u0925\u093f\u0915 \u0926\u0943\u0937\u094d\u091f\u093f \u0938\u0947, \u0935\u0947 \u0905\u0924\u094d\u092f\u0927\u093f\u0915 \u092e\u0942\u0932\u094d\u092f \u0928\u093f\u0930\u094d\u0927\u093e\u0930\u0923 \u0935\u094d\u092f\u0935\u0939\u093e\u0930 \u0915\u0947 \u092a\u094d\u0930\u0924\u0940\u0915 \u092c\u0928 \u0917\u090f \u0939\u0948\u0902\u0964.<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li><strong>\u090f\u0915 \u092c\u093e\u0930 \u0915\u0940 \u091c\u0940\u0928 \u0925\u0947\u0930\u0947\u092a\u0940 \u0915\u0940 \u0915\u0940\u092e\u0924 29 \u0932\u093e\u0916 \u0905\u092e\u0947\u0930\u093f\u0915\u0940 \u0921\u0949\u0932\u0930 \u0938\u0947 \u0905\u0927\u093f\u0915 \u0939\u0948\u0964<\/strong><\/li>\n\n\n\n<li>\u0938\u0940\u092e\u093f\u0924 \u0926\u0940\u0930\u094d\u0918\u0915\u093e\u0932\u093f\u0915 \u092a\u094d\u0930\u092d\u093e\u0935\u0915\u093e\u0930\u093f\u0924\u093e \u0921\u0947\u091f\u093e<\/li>\n\n\n\n<li><strong>\u092d\u0941\u0917\u0924\u093e\u0928 \u0938\u0902\u092c\u0902\u0927\u0940 \u092c\u093e\u0927\u093e\u0913\u0902 \u0915\u0947 \u0915\u093e\u0930\u0923 \u0938\u0940\u092e\u093f\u0924 \u092a\u0939\u0941\u0902\u091a<\/strong><\/li>\n<\/ul>\n\n\n\n<p class=\"wp-block-paragraph\">\u0926\u0935\u093e \u0915\u0902\u092a\u0928\u093f\u092f\u093e\u0902 \u0907\u0928 \u0932\u093e\u0917\u0924\u094b\u0902 \u0915\u094b \u092f\u0939 \u0915\u0939\u0915\u0930 \u0909\u091a\u093f\u0924 \u0920\u0939\u0930\u093e\u0924\u0940 \u0939\u0948\u0902:<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li>\u0905\u0928\u0941\u0938\u0902\u0927\u093e\u0928 \u090f\u0935\u0902 \u0935\u093f\u0915\u093e\u0938 \u0935\u094d\u092f\u092f<\/li>\n\n\n\n<li>\u0915\u092e \u0930\u094b\u0917\u0940 \u0906\u092c\u093e\u0926\u0940 (\u0911\u0930\u094d\u092b\u093c\u0928 \u0921\u094d\u0930\u0917 \u092e\u0949\u0921\u0932)<\/li>\n\n\n\n<li>\u0926\u0940\u0930\u094d\u0918\u0915\u093e\u0932\u093f\u0915 \u0938\u094d\u0935\u093e\u0938\u094d\u0925\u094d\u092f \u0938\u0947\u0935\u093e \u092c\u091a\u0924<\/li>\n<\/ul>\n\n\n\n<p class=\"wp-block-paragraph\">\u0939\u093e\u0932\u093e\u0902\u0915\u093f, \u0915\u0908 \u0935\u093f\u0936\u094d\u0932\u0947\u0937\u0923 \u0907\u0928 \u0926\u093e\u0935\u094b\u0902 \u0915\u094b \u091a\u0941\u0928\u094c\u0924\u0940 \u0926\u0947\u0924\u0947 \u0939\u0948\u0902\u0964.<\/p>\n\n\n\n<h4 class=\"wp-block-heading\" id=\"evidence\">\u092a\u094d\u0930\u092e\u093e\u0923:<\/h4>\n\n\n\n<ul class=\"wp-block-list\">\n<li>\u0906\u0908\u0938\u0940\u0908\u0906\u0930 (\u0907\u0902\u0938\u094d\u091f\u0940\u091f\u094d\u092f\u0942\u091f \u092b\u0949\u0930 \u0915\u094d\u0932\u093f\u0928\u093f\u0915\u0932 \u090f\u0902\u0921 \u0907\u0915\u094b\u0928\u0949\u092e\u093f\u0915 \u0930\u093f\u0935\u094d\u092f\u0942) \u0915\u0940 \u0930\u093f\u092a\u094b\u0930\u094d\u091f\u094b\u0902 \u0928\u0947 \u092c\u093e\u0930-\u092c\u093e\u0930 \u0926\u0941\u0930\u094d\u0932\u092d \u092c\u0940\u092e\u093e\u0930\u093f\u092f\u094b\u0902 \u0915\u0947 \u0909\u092a\u091a\u093e\u0930\u094b\u0902 \u0915\u094b \u0932\u093e\u0917\u0924-\u092a\u094d\u0930\u092d\u093e\u0935\u0936\u0940\u0932\u0924\u093e \u0915\u0940 \u0938\u0940\u092e\u093e \u0938\u0947 \u0905\u0927\u093f\u0915 \u0939\u094b\u0928\u0947 \u0915\u0947 \u0930\u0942\u092a \u092e\u0947\u0902 \u091a\u093f\u0939\u094d\u0928\u093f\u0924 \u0915\u093f\u092f\u093e \u0939\u0948\u0964.<\/li>\n\n\n\n<li>\u0939\u0947\u0932\u094d\u0925 \u0905\u092b\u0947\u092f\u0930\u094d\u0938 (2020) \u092e\u0947\u0902 \u092a\u094d\u0930\u0915\u093e\u0936\u093f\u0924 \u090f\u0915 \u0905\u0927\u094d\u092f\u092f\u0928 \u092e\u0947\u0902 \u092a\u093e\u092f\u093e \u0917\u092f\u093e \u0915\u093f \u0905\u0928\u093e\u0925 \u0926\u0935\u093e\u0913\u0902 \u0915\u0940 \u0915\u0940\u092e\u0924 \u0905\u0915\u094d\u0938\u0930 \u092c\u093e\u091c\u093e\u0930 \u0915\u0940 \u0938\u0939\u0928\u0936\u0940\u0932\u0924\u093e \u0915\u094b \u0926\u0930\u094d\u0936\u093e\u0924\u0940 \u0939\u0948, \u0928 \u0915\u093f \u0935\u093e\u0938\u094d\u0924\u0935\u093f\u0915 \u0905\u0928\u0941\u0938\u0902\u0927\u093e\u0928 \u090f\u0935\u0902 \u0935\u093f\u0915\u093e\u0938 \u0932\u093e\u0917\u0924 \u0915\u0940 \u0935\u0938\u0942\u0932\u0940 \u0915\u094b\u0964.<\/li>\n<\/ul>\n\n\n\n<p class=\"wp-block-paragraph\">\u092a\u0930\u093f\u0923\u093e\u092e \u0915\u094d\u092f\u093e \u0928\u093f\u0915\u0932\u093e?<br><strong>\u092a\u0930\u093f\u0935\u093e\u0930\u094b\u0902 \u0938\u0947 \u0935\u0939 \u0936\u0941\u0932\u094d\u0915 \u0932\u093f\u092f\u093e \u091c\u093e \u0930\u0939\u093e \u0939\u0948 \u091c\u094b \u092c\u093e\u091c\u093e\u0930 \u0915\u0940 \u0938\u093e\u092e\u0930\u094d\u0925\u094d\u092f \u0915\u0947 \u0905\u0928\u0941\u0938\u093e\u0930 \u0939\u0948\u2014\u0928 \u0915\u093f \u0935\u0939 \u091c\u094b \u0909\u091a\u093f\u0924 \u0939\u0948\u0964.<\/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>\u090f\u0915\u094d\u0938\u0949\u0928 \u0938\u094d\u0915\u093f\u092a\u093f\u0902\u0917 \u0925\u0947\u0930\u0947\u092a\u0940 - \u0909\u091a\u094d\u091a \u0932\u093e\u0917\u0924, \u092e\u093e\u092e\u0942\u0932\u0940 \u0932\u093e\u092d<\/strong><\/h3>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>\u090f\u091f\u0947\u092a\u094d\u0932\u093f\u0930\u0938\u0947\u0928 \u0914\u0930 \u0917\u094b\u0932\u094b\u0921\u093f\u0930\u0938\u0947\u0928 \u091c\u0948\u0938\u0940 \u090f\u0915\u094d\u0938\u0949\u0928 \u0938\u094d\u0915\u093f\u092a\u093f\u0902\u0917 \u0926\u0935\u093e\u0913\u0902 \u0915\u0940 \u0915\u0940\u092e\u0924 \u0938\u093e\u0932\u093e\u0928\u093e \u0932\u093e\u0916\u094b\u0902 \u0921\u0949\u0932\u0930 \u0939\u094b\u0924\u0940 \u0939\u0948, \u092b\u093f\u0930 \u092d\u0940 \u0909\u0928\u0915\u0947 \u0928\u0948\u0926\u093e\u0928\u093f\u0915 \u0932\u093e\u092d \u092a\u0930 \u092c\u0939\u0938 \u091c\u093e\u0930\u0940 \u0939\u0948\u0964.<\/strong><\/p>\n\n\n\n<h4 class=\"wp-block-heading\" id=\"key-concerns\">\u092e\u0941\u0916\u094d\u092f \u091a\u093f\u0902\u0924\u093e\u090f\u0901:<\/h4>\n\n\n\n<ul class=\"wp-block-list\">\n<li>\u0915\u093e\u0930\u094d\u092f\u093e\u0924\u094d\u092e\u0915 \u092a\u0930\u093f\u0923\u093e\u092e\u094b\u0902 \u092e\u0947\u0902 \u0938\u0940\u092e\u093f\u0924 \u0938\u0941\u0927\u093e\u0930<\/li>\n\n\n\n<li>\u0938\u0930\u094b\u0917\u0947\u091f \u090f\u0902\u0921\u092a\u0949\u0907\u0902\u091f\u094d\u0938 \u0915\u0947 \u0906\u0927\u093e\u0930 \u092a\u0930 \u0924\u094d\u0935\u0930\u093f\u0924 \u0905\u0928\u0941\u092e\u094b\u0926\u0928<\/li>\n\n\n\n<li>\u0905\u0928\u093f\u0936\u094d\u091a\u093f\u0924 \u092a\u094d\u0930\u092d\u093e\u0935\u0915\u093e\u0930\u093f\u0924\u093e \u0915\u0947 \u092c\u093e\u0935\u091c\u0942\u0926 \u0932\u0917\u093e\u0924\u093e\u0930 \u0909\u091a\u094d\u091a \u092e\u0942\u0932\u094d\u092f \u0928\u093f\u0930\u094d\u0927\u093e\u0930\u0923<\/li>\n<\/ul>\n\n\n\n<h4 class=\"wp-block-heading\" id=\"study-reference\">\u0905\u0927\u094d\u092f\u092f\u0928 \u0938\u0902\u0926\u0930\u094d\u092d:<\/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\">\u092e\u0947\u0902\u0921\u0947\u0932 \u090f\u091f \u0905\u0932., \u090f\u0928\u0932\u094d\u0938 \u0911\u092b \u0928\u094d\u092f\u0942\u0930\u094b\u0932\u0949\u091c\u0940 (2013)<\/a><\/strong><\/li>\n\n\n\n<li>FDA \u0938\u0932\u093e\u0939\u0915\u093e\u0930 \u0938\u092e\u093f\u0924\u093f \u0915\u0940 \u091a\u0930\u094d\u091a\u093e\u0913\u0902 (2016) \u092e\u0947\u0902 \u0920\u094b\u0938 \u0928\u0948\u0926\u093e\u0928\u093f\u0915 \u0932\u093e\u092d \u0915\u0947 \u0932\u093f\u090f \u0905\u092a\u0930\u094d\u092f\u093e\u092a\u094d\u0924 \u0938\u093e\u0915\u094d\u0937\u094d\u092f\u094b\u0902 \u092a\u0930 \u092a\u094d\u0930\u0915\u093e\u0936 \u0921\u093e\u0932\u093e \u0917\u092f\u093e\u0964<\/li>\n<\/ul>\n\n\n\n<p class=\"wp-block-paragraph\">\u0907\u0938\u0915\u0947 \u092c\u093e\u0935\u091c\u0942\u0926, \u0915\u0940\u092e\u0924\u0947\u0902 \u092c\u0947\u0939\u0926 \u090a\u0902\u091a\u0940 \u092c\u0928\u0940 \u0939\u0941\u0908 \u0939\u0948\u0902\u0964.<\/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>\u0926\u0935\u093e \u0915\u0902\u092a\u0928\u093f\u092f\u093e\u0902 \u2013 \u092e\u0930\u0940\u091c\u094b\u0902 \u0938\u0947 \u091c\u094d\u092f\u093e\u0926\u093e \u092e\u0941\u0928\u093e\u092b\u093e?<\/strong><\/h2>\n\n\n\n<p class=\"wp-block-paragraph\">\u091a\u0932\u093f\u090f \u0938\u0940\u0927\u0947 \u092e\u0941\u0926\u094d\u0926\u0947 \u092a\u0930 \u0906\u0924\u0947 \u0939\u0948\u0902:<br>\u0921\u094d\u092f\u0942\u0936\u0947\u0928 \u092e\u0938\u094d\u0915\u0941\u0932\u0930 \u0921\u093f\u0938\u094d\u091f\u094d\u0930\u0949\u092b\u0940 \u0915\u0947 \u0909\u092a\u091a\u093e\u0930 \u0915\u0940 \u0932\u093e\u0917\u0924 \u0915\u0947 \u0932\u093f\u090f \u0935\u0930\u094d\u0924\u092e\u093e\u0928 \u092e\u0942\u0932\u094d\u092f \u0928\u093f\u0930\u094d\u0927\u093e\u0930\u0923 \u0938\u0902\u0930\u091a\u0928\u093e \u090f\u0915 \u0910\u0938\u0940 \u092a\u094d\u0930\u0923\u093e\u0932\u0940 \u0915\u094b \u0926\u0930\u094d\u0936\u093e\u0924\u0940 \u0939\u0948 \u091c\u094b \u0932\u093e\u092d \u0915\u094b \u0905\u0927\u093f\u0915\u0924\u092e \u0915\u0930\u0928\u0947 \u0915\u0947 \u0932\u093f\u090f \u0921\u093f\u091c\u093c\u093e\u0907\u0928 \u0915\u0940 \u0917\u0908 \u0939\u0948 - \u0928 \u0915\u093f \u0930\u094b\u0917\u093f\u092f\u094b\u0902 \u0915\u0940 \u092a\u0939\u0941\u0902\u091a \u0915\u0947 \u0932\u093f\u090f\u0964.<\/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>\u0905\u0928\u093e\u0925 \u0926\u0935\u093e \u0938\u0902\u092c\u0902\u0927\u0940 \u0916\u093e\u092e\u0940<\/strong><\/h3>\n\n\n\n<p class=\"wp-block-paragraph\">\u0911\u0930\u094d\u092b\u093c\u0928 \u0921\u094d\u0930\u0917 \u090f\u0915\u094d\u091f (1983) \u0915\u093e \u0909\u0926\u094d\u0926\u0947\u0936\u094d\u092f \u0926\u0941\u0930\u094d\u0932\u092d \u092c\u0940\u092e\u093e\u0930\u093f\u092f\u094b\u0902 \u092a\u0930 \u0936\u094b\u0927 \u0915\u094b \u092a\u094d\u0930\u094b\u0924\u094d\u0938\u093e\u0939\u093f\u0924 \u0915\u0930\u0928\u093e \u0925\u093e\u0964 \u0907\u0938\u0915\u0947 \u0935\u093f\u092a\u0930\u0940\u0924, \u0907\u0938\u0915\u0940 \u0935\u094d\u092f\u093e\u092a\u0915 \u0930\u0942\u092a \u0938\u0947 \u0906\u0932\u094b\u091a\u0928\u093e \u0915\u0940 \u0917\u0908 \u0939\u0948 \u0915\u094d\u092f\u094b\u0902\u0915\u093f \u0907\u0938\u0928\u0947 \u0928\u093f\u092e\u094d\u0928\u0932\u093f\u0916\u093f\u0924 \u0915\u094b \u092c\u0922\u093c\u093e\u0935\u093e \u0926\u093f\u092f\u093e \u0939\u0948:<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li>\u0935\u093f\u0938\u094d\u0924\u093e\u0930\u093f\u0924 \u092c\u093e\u091c\u093e\u0930 \u090f\u0915\u093e\u0927\u093f\u0915\u093e\u0930<\/li>\n\n\n\n<li>\u0928\u094d\u092f\u0942\u0928\u0924\u092e \u092a\u094d\u0930\u0924\u093f\u0938\u094d\u092a\u0930\u094d\u0927\u093e<\/li>\n\n\n\n<li>\u092c\u0922\u093c\u0940 \u0939\u0941\u0908 \u092e\u0942\u0932\u094d\u092f \u0928\u093f\u0930\u094d\u0927\u093e\u0930\u0923 \u0930\u0923\u0928\u0940\u0924\u093f\u092f\u093e\u0901<\/li>\n<\/ul>\n\n\n\n<p class=\"wp-block-paragraph\">JAMA (2017) \u092e\u0947\u0902 \u092a\u094d\u0930\u0915\u093e\u0936\u093f\u0924 \u090f\u0915 \u0905\u0927\u094d\u092f\u092f\u0928 \u092e\u0947\u0902 \u092a\u093e\u092f\u093e \u0917\u092f\u093e \u0915\u093f \u0905\u0928\u093e\u0925 \u0926\u0935\u093e\u090f\u0902 \u0905\u0915\u094d\u0938\u0930 \u0917\u0948\u0930-\u0905\u0928\u093e\u0925 \u0926\u0935\u093e\u0913\u0902 \u0915\u0940 \u0924\u0941\u0932\u0928\u093e \u092e\u0947\u0902 \u0905\u0927\u093f\u0915 \u0932\u093e\u092d\u0926\u093e\u092f\u0915 \u0939\u094b\u0924\u0940 \u0939\u0948\u0902, \u091c\u094b \u0935\u093f\u0924\u094d\u0924\u0940\u092f \u0906\u0935\u0936\u094d\u092f\u0915\u0924\u093e \u0915\u0940 \u0927\u093e\u0930\u0923\u093e \u0915\u093e \u0916\u0902\u0921\u0928 \u0915\u0930\u0924\u0940 \u0939\u0948\u0964.<\/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>\u091c\u0935\u093e\u092c\u0926\u0947\u0939\u0940 \u0915\u0947 \u092c\u093f\u0928\u093e \u092e\u0942\u0932\u094d\u092f \u0928\u093f\u0930\u094d\u0927\u093e\u0930\u0923<\/strong><\/h3>\n\n\n\n<p class=\"wp-block-paragraph\">\u0915\u0908 \u0905\u0928\u094d\u092f \u0909\u0926\u094d\u092f\u094b\u0917\u094b\u0902 \u0915\u0947 \u0935\u093f\u092a\u0930\u0940\u0924, \u0926\u0935\u093e\u0907\u092f\u094b\u0902 \u0915\u0940 \u092e\u0942\u0932\u094d\u092f \u0928\u093f\u0930\u094d\u0927\u093e\u0930\u0923 \u092a\u094d\u0930\u0915\u094d\u0930\u093f\u092f\u093e \u092e\u0947\u0902 \u092a\u093e\u0930\u0926\u0930\u094d\u0936\u093f\u0924\u093e \u0938\u0940\u092e\u093f\u0924 \u0939\u094b\u0924\u0940 \u0939\u0948:<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li>\u0915\u094b\u0908 \u092e\u093e\u0928\u0915\u0940\u0915\u0943\u0924 \u0935\u0948\u0936\u094d\u0935\u093f\u0915 \u092e\u0942\u0932\u094d\u092f \u0928\u093f\u0930\u094d\u0927\u093e\u0930\u0923 \u0922\u093e\u0902\u091a\u093e \u0928\u0939\u0940\u0902 \u0939\u0948<\/li>\n\n\n\n<li>\u0917\u094b\u092a\u0928\u0940\u092f \u091b\u0942\u091f \u0938\u092e\u091d\u094c\u0924\u0947<\/li>\n\n\n\n<li>\u0932\u093e\u0917\u0924 \u0935\u093f\u0935\u0930\u0923 \u0915\u093e \u0916\u0941\u0932\u093e\u0938\u093e \u0928 \u0939\u094b\u0928\u093e<\/li>\n<\/ul>\n\n\n\n<p class=\"wp-block-paragraph\">\u092e\u0930\u0940\u091c\u094b\u0902 \u0914\u0930 \u0938\u0930\u0915\u093e\u0930\u094b\u0902 \u0938\u0947 \u092c\u093f\u0928\u093e \u0915\u093f\u0938\u0940 \u0914\u091a\u093f\u0924\u094d\u092f \u0915\u0947 \u092e\u0942\u0932\u094d\u092f \u0928\u093f\u0930\u094d\u0927\u093e\u0930\u0923 \u0915\u094b \u0938\u094d\u0935\u0940\u0915\u093e\u0930 \u0915\u0930\u0928\u0947 \u0915\u0940 \u0905\u092a\u0947\u0915\u094d\u0937\u093e \u0915\u0940 \u091c\u093e\u0924\u0940 \u0939\u0948\u0964.<\/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>\u0930\u0923\u0928\u0940\u0924\u093f\u0915 \u0915\u092e\u0940 \u0914\u0930 \u092c\u093e\u091c\u093e\u0930 \u0928\u093f\u092f\u0902\u0924\u094d\u0930\u0923<\/strong><\/h3>\n\n\n\n<p class=\"wp-block-paragraph\">\u0915\u0941\u091b \u0915\u0902\u092a\u0928\u093f\u092f\u093e\u0902 \u0906\u092a\u0942\u0930\u094d\u0924\u093f \u0938\u0940\u092e\u093f\u0924 \u0915\u0930 \u0926\u0947\u0924\u0940 \u0939\u0948\u0902, \u0935\u0948\u0936\u094d\u0935\u093f\u0915 \u0935\u093f\u0924\u0930\u0923 \u092e\u0947\u0902 \u0926\u0947\u0930\u0940 \u0915\u0930\u0924\u0940 \u0939\u0948\u0902, \u092f\u093e \u0909\u091a\u094d\u091a \u0906\u092f \u0935\u093e\u0932\u0947 \u092c\u093e\u091c\u093e\u0930\u094b\u0902 \u0915\u094b \u092a\u094d\u0930\u093e\u0925\u092e\u093f\u0915\u0924\u093e \u0926\u0947\u0924\u0940 \u0939\u0948\u0902\u0964 \u0907\u0938\u0938\u0947 \u0928\u093f\u092e\u094d\u0928\u0932\u093f\u0916\u093f\u0924 \u0938\u092e\u0938\u094d\u092f\u093e\u090f\u0902 \u0909\u0924\u094d\u092a\u0928\u094d\u0928 \u0939\u094b\u0924\u0940 \u0939\u0948\u0902:<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li>\u0915\u0943\u0924\u094d\u0930\u093f\u092e \u0915\u092e\u0940<\/li>\n\n\n\n<li>\u092d\u094c\u0917\u094b\u0932\u093f\u0915 \u0905\u0938\u092e\u093e\u0928\u0924\u093e<\/li>\n\n\n\n<li>\u0909\u092a\u091a\u093e\u0930 \u0924\u0915 \u0935\u093f\u0932\u0902\u092c\u093f\u0924 \u092a\u0939\u0941\u0902\u091a<\/li>\n<\/ul>\n\n\n\n<p class=\"wp-block-paragraph\">\u0921\u094d\u092f\u0942\u0936\u0947\u0928 \u091c\u0948\u0938\u0940 \u092a\u094d\u0930\u0917\u0924\u093f\u0936\u0940\u0932 \u092c\u0940\u092e\u093e\u0930\u0940 \u0915\u0947 \u092e\u093e\u092e\u0932\u0947 \u092e\u0947\u0902, \u0926\u0947\u0930\u0940 \u0915\u093e \u092e\u0924\u0932\u092c \u0905\u092a\u0930\u093f\u0935\u0930\u094d\u0924\u0928\u0940\u092f \u0915\u094d\u0937\u0924\u093f \u0939\u0948\u0964.<\/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>\u0938\u0930\u0915\u093e\u0930\u0947\u0902 \u0914\u0930 \u0938\u094d\u0935\u093e\u0938\u094d\u0925\u094d\u092f \u092e\u0902\u0924\u094d\u0930\u093e\u0932\u092f \u2013 \u0928\u093f\u0937\u094d\u0915\u094d\u0930\u093f\u092f \u0938\u0939\u093e\u092f\u0915<\/strong><\/h2>\n\n\n\n<p class=\"wp-block-paragraph\">\u092f\u0926\u093f \u0926\u0935\u093e \u0915\u0902\u092a\u0928\u093f\u092f\u093e\u0902 \u0915\u0940\u092e\u0924 \u0924\u092f \u0915\u0930\u0924\u0940 \u0939\u0948\u0902, \u0924\u094b \u0938\u0930\u0915\u093e\u0930\u0947\u0902 \u0905\u0915\u094d\u0938\u0930 \u0907\u0938\u0947 \u091a\u0941\u0928\u094c\u0924\u0940 \u0926\u0947\u0928\u0947 \u092e\u0947\u0902 \u0935\u093f\u092b\u0932 \u0930\u0939\u0924\u0940 \u0939\u0948\u0902\u0964.<\/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>\u092d\u0941\u0917\u0924\u093e\u0928 \u092e\u0947\u0902 \u0926\u0947\u0930\u0940 \u0938\u0947 \u091c\u093e\u0928\u0947\u0902 \u091c\u093e\u0924\u0940 \u0939\u0948\u0902<\/strong><\/h3>\n\n\n\n<p class=\"wp-block-paragraph\">\u0915\u0908 \u0926\u0947\u0936\u094b\u0902 \u092e\u0947\u0902:<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li>\u0905\u0928\u0941\u092e\u094b\u0926\u0928 \u092a\u094d\u0930\u0915\u094d\u0930\u093f\u092f\u093e\u0913\u0902 \u092e\u0947\u0902 \u0935\u0930\u094d\u0937\u094b\u0902 \u0932\u0917 \u091c\u093e\u0924\u0947 \u0939\u0948\u0902<\/li>\n\n\n\n<li>\u092e\u0942\u0932\u094d\u092f \u0928\u093f\u0930\u094d\u0927\u093e\u0930\u0923 \u0915\u094b \u0932\u0947\u0915\u0930 \u092c\u093e\u0924\u091a\u0940\u0924 \u0920\u092a \u092a\u0921\u093c\u0940<\/li>\n\n\n\n<li>\u092e\u0930\u0940\u091c \u092a\u093e\u0924\u094d\u0930\u0924\u093e \u0915\u0940 \u0906\u092f\u0941 \u0938\u0940\u092e\u093e \u092a\u093e\u0930 \u0915\u0930 \u091c\u093e\u0924\u0947 \u0939\u0948\u0902\u0964<\/li>\n<\/ul>\n\n\n\n<p class=\"wp-block-paragraph\">\u0907\u0938 \u0928\u094c\u0915\u0930\u0936\u093e\u0939\u0940 \u0915\u0940 \u0938\u0941\u0938\u094d\u0924\u0940 \u0915\u0947 \u0915\u093e\u0930\u0923 \u092a\u094d\u0930\u092d\u093e\u0935\u0940 \u0930\u0942\u092a \u0938\u0947 \u0909\u092a\u091a\u093e\u0930 \u0938\u0947 \u0935\u0902\u091a\u093f\u0924 \u0939\u094b\u0928\u093e \u092a\u0921\u093c\u0924\u093e \u0939\u0948\u0964.<\/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>\u0938\u0940\u092e\u093e\u0913\u0902 \u0915\u0947 \u092a\u093e\u0930 \u0905\u0938\u092e\u093e\u0928\u0924\u093e<\/strong><\/h3>\n\n\n\n<p class=\"wp-block-paragraph\">\u0921\u094d\u092f\u0942\u0936\u0947\u0928 \u092e\u0938\u094d\u0915\u0941\u0932\u0930 \u0921\u093f\u0938\u094d\u091f\u094d\u0930\u0949\u092b\u0940 \u0915\u0947 \u0909\u092a\u091a\u093e\u0930 \u0915\u0940 \u0932\u093e\u0917\u0924 \u092e\u0947\u0902 \u0915\u093e\u092b\u0940 \u0905\u0902\u0924\u0930 \u0939\u094b\u0924\u093e \u0939\u0948:<\/p>\n\n\n\n<figure class=\"wp-block-table\"><table class=\"has-fixed-layout\"><thead><tr><th>\u0915\u094d\u0937\u0947\u0924\u094d\u0930<\/th><th>\u092a\u0939\u0941\u0901\u091a \u0938\u094d\u0924\u0930<\/th><\/tr><\/thead><tbody><tr><td>\u092f\u0942\u090f\u0938\u090f<\/td><td>\u0909\u091a\u094d\u091a \u0932\u093e\u0917\u0924, \u092c\u0940\u092e\u093e \u092a\u0930 \u0928\u093f\u0930\u094d\u092d\u0930\u0924\u093e<\/td><\/tr><tr><td>\u092f\u0942\u0930\u094b\u092a<\/td><td>\u0938\u0940\u092e\u093f\u0924 \u0932\u0947\u0915\u093f\u0928 \u0938\u092c\u094d\u0938\u093f\u0921\u0940 \u092a\u094d\u0930\u093e\u092a\u094d\u0924<\/td><\/tr><tr><td>\u0935\u093f\u0915\u093e\u0938\u0936\u0940\u0932 \u0926\u0947\u0936\u094b\u0902<\/td><td>\u0932\u0917\u092d\u0917 \u0928 \u0915\u0947 \u092c\u0930\u093e\u092c\u0930<\/td><\/tr><\/tbody><\/table><\/figure>\n\n\n\n<p class=\"wp-block-paragraph\">\u0907\u0938\u0938\u0947 \u090f\u0915 \u091a\u093f\u0902\u0924\u093e\u091c\u0928\u0915 \u0935\u093e\u0938\u094d\u0924\u0935\u093f\u0915\u0924\u093e \u0938\u093e\u092e\u0928\u0947 \u0906\u0924\u0940 \u0939\u0948:<br><strong>\u0915\u093f\u0938\u0940 \u092c\u091a\u094d\u091a\u0947 \u0915\u0947 \u091c\u0940\u0935\u093f\u0924 \u0930\u0939\u0928\u0947 \u0915\u0940 \u0938\u0902\u092d\u093e\u0935\u0928\u093e \u0909\u0938\u0915\u0947 \u092a\u093e\u0938\u092a\u094b\u0930\u094d\u091f \u092a\u0930 \u0928\u093f\u0930\u094d\u092d\u0930 \u0915\u0930\u0924\u0940 \u0939\u0948\u0964.<\/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>\u092c\u091c\u091f \u0938\u0902\u092c\u0902\u0927\u0940 \u092c\u0939\u093e\u0928\u0947 \u092c\u0928\u093e\u092e \u0928\u0940\u0924\u093f\u0917\u0924 \u0935\u093f\u092b\u0932\u0924\u093e\u090f\u0901<\/strong><\/h3>\n\n\n\n<p class=\"wp-block-paragraph\">\u0938\u0930\u0915\u093e\u0930\u0947\u0902 \u0905\u0915\u094d\u0938\u0930 \u092c\u091c\u091f \u0915\u0940 \u0915\u092e\u0940 \u0915\u093e \u0939\u0935\u093e\u0932\u093e \u0926\u0947\u0924\u0940 \u0939\u0948\u0902\u0964 \u0939\u093e\u0932\u093e\u0901\u0915\u093f:<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li>\u0938\u094d\u0935\u093e\u0938\u094d\u0925\u094d\u092f \u0938\u0947\u0935\u093e \u092c\u091c\u091f \u092e\u0947\u0902 \u0905\u0915\u094d\u0938\u0930 \u0905\u0930\u092c\u094b\u0902 \u0921\u0949\u0932\u0930 \u0915\u092e \u092e\u0939\u0924\u094d\u0935\u092a\u0942\u0930\u094d\u0923 \u0915\u094d\u0937\u0947\u0924\u094d\u0930\u094b\u0902 \u0915\u094b \u0906\u0935\u0902\u091f\u093f\u0924 \u0915\u093f\u090f \u091c\u093e\u0924\u0947 \u0939\u0948\u0902\u0964<\/li>\n\n\n\n<li>\u0926\u0941\u0930\u094d\u0932\u092d \u092c\u0940\u092e\u093e\u0930\u093f\u092f\u094b\u0902 \u0915\u0947 \u0932\u093f\u090f \u092e\u093f\u0932\u0928\u0947 \u0935\u093e\u0932\u093e \u0927\u0928 \u0905\u092d\u0940 \u092d\u0940 \u092c\u0939\u0941\u0924 \u0915\u092e \u0939\u0948\u0964<\/li>\n\n\n\n<li>\u092c\u093e\u0924\u091a\u0940\u0924 \u0915\u0940 \u0936\u0915\u094d\u0924\u093f \u0915\u093e \u0915\u092e \u0909\u092a\u092f\u094b\u0917 \u0915\u093f\u092f\u093e \u091c\u093e \u0930\u0939\u093e \u0939\u0948<\/li>\n<\/ul>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>\u092e\u0941\u0926\u094d\u0926\u093e \u0938\u093f\u0930\u094d\u092b \u0935\u0939\u0928\u0940\u092f\u0924\u093e \u0915\u093e \u0928\u0939\u0940\u0902 \u0939\u0948, \u092c\u0932\u094d\u0915\u093f \u092a\u094d\u0930\u093e\u0925\u092e\u093f\u0915\u0924\u093e \u0915\u093e \u0939\u0948\u0964.<\/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>\u0921\u0940\u090f\u092e\u0921\u0940 \u090f\u0938\u094b\u0938\u093f\u090f\u0936\u0928 - \u092e\u093f\u0936\u0928 \u0921\u094d\u0930\u093f\u092b\u094d\u091f \u0914\u0930 \u092e\u094c\u0928<\/strong><\/h2>\n\n\n\n<p class=\"wp-block-paragraph\">\u0936\u093e\u092f\u0926 \u0938\u092c\u0938\u0947 \u0905\u0938\u0939\u091c \u0938\u091a\u094d\u091a\u093e\u0908:<br><strong>\u092e\u0930\u0940\u091c\u094b\u0902 \u0915\u0940 \u0938\u0941\u0930\u0915\u094d\u0937\u093e \u0915\u0947 \u0932\u093f\u090f \u0938\u094d\u0925\u093e\u092a\u093f\u0924 \u0915\u0941\u091b \u0938\u0902\u0917\u0920\u0928 \u0907\u0938 \u0935\u094d\u092f\u0935\u0938\u094d\u0925\u093e \u0915\u094b \u092a\u094d\u0930\u092d\u093e\u0935\u0940 \u0922\u0902\u0917 \u0938\u0947 \u091a\u0941\u0928\u094c\u0924\u0940 \u0926\u0947\u0928\u0947 \u092e\u0947\u0902 \u0935\u093f\u092b\u0932 \u0930\u0939\u0947 \u0939\u0948\u0902\u0964.<\/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>\u0909\u0926\u094d\u092f\u094b\u0917 \u0938\u0947 \u092e\u093f\u0932\u0928\u0947 \u0935\u093e\u0932\u0947 \u0905\u0928\u0941\u0926\u093e\u0928 \u092a\u0930 \u0928\u093f\u0930\u094d\u092d\u0930\u0924\u093e<\/strong><\/h3>\n\n\n\n<p class=\"wp-block-paragraph\">\u0915\u0908 \u0935\u0915\u093e\u0932\u0924 \u0938\u092e\u0942\u0939\u094b\u0902 \u0915\u094b \u0926\u0935\u093e \u0915\u0902\u092a\u0928\u093f\u092f\u094b\u0902 \u0938\u0947 \u0927\u0928\u0930\u093e\u0936\u093f \u092a\u094d\u0930\u093e\u092a\u094d\u0924 \u0939\u094b\u0924\u0940 \u0939\u0948\u0964 \u0907\u0938\u0938\u0947 \u0928\u093f\u092e\u094d\u0928\u0932\u093f\u0916\u093f\u0924 \u0938\u092e\u0938\u094d\u092f\u093e\u090f\u0902 \u0909\u0924\u094d\u092a\u0928\u094d\u0928 \u0939\u094b\u0924\u0940 \u0939\u0948\u0902:<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li>\u0939\u093f\u0924\u094b\u0902 \u0915\u093e \u091f\u0915\u0930\u093e\u0935<\/li>\n\n\n\n<li>\u0906\u0932\u094b\u091a\u0928\u093e \u0915\u094b \u0928\u0930\u092e \u0915\u093f\u092f\u093e \u0917\u092f\u093e<\/li>\n\n\n\n<li>\u092e\u0942\u0932\u094d\u092f \u0938\u0941\u0927\u093e\u0930 \u0915\u0947 \u0932\u093f\u090f \u0926\u092c\u093e\u0935 \u092e\u0947\u0902 \u0915\u092e\u0940<\/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>\u091c\u093e\u0917\u0930\u0942\u0915\u0924\u093e, \u092c\u093f\u0928\u093e \u0915\u093e\u0930\u094d\u0930\u0935\u093e\u0908 \u0915\u0947<\/strong><\/h3>\n\n\n\n<p class=\"wp-block-paragraph\">\u091c\u093e\u0917\u0930\u0942\u0915\u0924\u093e \u092c\u0922\u093c\u093e\u0928\u093e \u092e\u0939\u0924\u094d\u0935\u092a\u0942\u0930\u094d\u0923 \u0939\u0948\u2014\u0932\u0947\u0915\u093f\u0928 \u092f\u0939 \u092a\u0930\u094d\u092f\u093e\u092a\u094d\u0924 \u0928\u0939\u0940\u0902 \u0939\u0948\u0964.<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li>\u0905\u092d\u093f\u092f\u093e\u0928 \u0907\u0938 \u092c\u0940\u092e\u093e\u0930\u0940 \u092a\u0930 \u092a\u094d\u0930\u0915\u093e\u0936 \u0921\u093e\u0932\u0924\u0947 \u0939\u0948\u0902<\/li>\n\n\n\n<li>\u092d\u093e\u0935\u0928\u093e\u0924\u094d\u092e\u0915 \u0915\u0939\u093e\u0928\u093f\u092f\u093e\u0901 \u0938\u0941\u0928\u093e\u0928\u0947 \u0938\u0947 \u0926\u093e\u0928 \u092a\u094d\u0930\u093e\u092a\u094d\u0924 \u0915\u0930\u0928\u0947 \u092e\u0947\u0902 \u092e\u0926\u0926 \u092e\u093f\u0932\u0924\u0940 \u0939\u0948<\/li>\n\n\n\n<li>\u0938\u0902\u0930\u091a\u0928\u093e\u0924\u094d\u092e\u0915 \u0938\u092e\u0938\u094d\u092f\u093e\u090f\u0902 \u0905\u0928\u0938\u0941\u0932\u091d\u0940 \u0939\u0940 \u092c\u0928\u0940 \u0939\u0941\u0908 \u0939\u0948\u0902\u0964<\/li>\n<\/ul>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>\u092a\u0930\u093f\u0935\u093e\u0930\u094b\u0902 \u0915\u094b \u0915\u0947\u0935\u0932 \u091c\u093e\u0917\u0930\u0942\u0915\u0924\u093e \u0915\u0940 \u0939\u0940 \u0906\u0935\u0936\u094d\u092f\u0915\u0924\u093e \u0928\u0939\u0940\u0902 \u0939\u0948\u2014\u0909\u0928\u094d\u0939\u0947\u0902 \u092a\u0939\u0941\u0902\u091a \u0914\u0930 \u0935\u0939\u0928\u0940\u092f\u0924\u093e \u0915\u0940 \u092d\u0940 \u0906\u0935\u0936\u094d\u092f\u0915\u0924\u093e \u0939\u0948\u0964.<\/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>\u0921\u094d\u092f\u0942\u0936\u0947\u0928 \u092e\u0938\u094d\u0915\u0941\u0932\u0930 \u0921\u093f\u0938\u094d\u091f\u094d\u0930\u0949\u092b\u0940 \u0915\u0947 \u0909\u092a\u091a\u093e\u0930 \u0915\u0940 \u0932\u093e\u0917\u0924 \u0915\u0947 \u092a\u0940\u091b\u0947 \u092e\u093e\u0928\u0935\u0940\u092f \u0915\u0940\u092e\u0924<\/strong><\/h2>\n\n\n\n<p class=\"wp-block-paragraph\">\u0939\u0930 \u0906\u0902\u0915\u0921\u093c\u0947 \u0915\u0947 \u092a\u0940\u091b\u0947 \u090f\u0915 \u092a\u0930\u093f\u0935\u093e\u0930 \u0939\u094b\u0924\u093e \u0939\u0948 \u091c\u094b \u0905\u0938\u0902\u092d\u0935 \u092b\u0948\u0938\u0932\u094b\u0902 \u0915\u093e \u0938\u093e\u092e\u0928\u093e \u0915\u0930 \u0930\u0939\u093e \u0939\u094b\u0924\u093e \u0939\u0948:<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li>\u0938\u0902\u092a\u0924\u094d\u0924\u093f \u092c\u0947\u091a\u0947\u0902 \u092f\u093e \u0909\u092a\u091a\u093e\u0930 \u091b\u094b\u0921\u093c \u0926\u0947\u0902<\/li>\n\n\n\n<li>\u0938\u094d\u0935\u093e\u0938\u094d\u0925\u094d\u092f \u0938\u0947\u0935\u093e\u0913\u0902 \u0924\u0915 \u092a\u0939\u0941\u0902\u091a \u0915\u0947 \u0932\u093f\u090f \u0938\u094d\u0925\u093e\u0928 \u092c\u0926\u0932\u0947\u0902<\/li>\n\n\n\n<li>\u091c\u0940\u0935\u0928\u092f\u093e\u092a\u0928 \u0915\u0947 \u0932\u093f\u090f \u0915\u094d\u0930\u093e\u0909\u0921\u092b\u0902\u0921\u093f\u0902\u0917<\/li>\n<\/ul>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>\u092f\u0939 \u090f\u0915 \u0915\u093e\u0930\u0917\u0930 \u0938\u094d\u0935\u093e\u0938\u094d\u0925\u094d\u092f \u0938\u0947\u0935\u093e \u092a\u094d\u0930\u0923\u093e\u0932\u0940 \u0928\u0939\u0940\u0902 \u0939\u0948\u2014\u092f\u0939 \u0924\u094b \u091c\u0940\u0935\u0928-\u092e\u0930\u0923 \u0915\u093e \u091c\u0941\u0906 \u0939\u0948\u0964.<\/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>\u092e\u0928\u094b\u0935\u0948\u091c\u094d\u091e\u093e\u0928\u093f\u0915 \u0914\u0930 \u0935\u093f\u0924\u094d\u0924\u0940\u092f \u092a\u0924\u0928<\/strong><\/h3>\n\n\n\n<p class=\"wp-block-paragraph\">\u0936\u094b\u0927 \u0926\u093f\u0916\u093e\u0924\u093e \u0939\u0948:<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li>\u0926\u0947\u0916\u092d\u093e\u0932\u0915\u0930\u094d\u0924\u093e\u0913\u0902 \u092e\u0947\u0902 \u0925\u0915\u093e\u0928 \u0915\u093e \u092c\u0922\u093c\u0924\u093e \u0938\u094d\u0924\u0930 (<em>\u092c\u093e\u0932 \u091a\u093f\u0915\u093f\u0924\u094d\u0938\u093e, 2018<\/em>)<\/li>\n\n\n\n<li>\u0926\u0941\u0930\u094d\u0932\u092d \u092c\u0940\u092e\u093e\u0930\u093f\u092f\u094b\u0902 \u092e\u0947\u0902 \u0917\u0902\u092d\u0940\u0930 \u0935\u093f\u0924\u094d\u0924\u0940\u092f \u0935\u093f\u0937\u093e\u0915\u094d\u0924\u0924\u093e (<em>\u0911\u0930\u094d\u092b\u093c\u0928\u0947\u091f \u091c\u0930\u094d\u0928\u0932 \u0911\u092b\u093c \u0930\u0947\u092f\u0930 \u0921\u093f\u091c\u093c\u0940\u091c\u093c\u0947\u091c\u093c, 2021<\/em>)<\/li>\n<\/ul>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>\u092a\u0930\u093f\u0935\u093e\u0930 \u0928 \u0915\u0947\u0935\u0932 \u092c\u0940\u092e\u093e\u0930\u0940 \u0938\u0947 \u0932\u0921\u093c \u0930\u0939\u0947 \u0939\u0948\u0902, \u092c\u0932\u094d\u0915\u093f \u0935\u0947 \u0935\u094d\u092f\u0935\u0938\u094d\u0925\u093e \u0938\u0947 \u092d\u0940 \u0932\u0921\u093c \u0930\u0939\u0947 \u0939\u0948\u0902\u0964.<\/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>\u090f\u0915 \u091f\u0942\u091f\u093e \u0939\u0941\u0906 \u0906\u0930\u094d\u0925\u093f\u0915 \u092e\u0949\u0921\u0932<\/strong><\/h2>\n\n\n\n<p class=\"wp-block-paragraph\">\u0921\u094d\u092f\u0942\u0936\u0947\u0928 \u092e\u0938\u094d\u0915\u0941\u0932\u0930 \u0921\u093f\u0938\u094d\u091f\u094d\u0930\u0949\u092b\u0940 \u0915\u0947 \u0909\u092a\u091a\u093e\u0930 \u0915\u0940 \u0932\u093e\u0917\u0924 \u0915\u093e \u0938\u0902\u0915\u091f \u092e\u0942\u0932\u092d\u0942\u0924 \u0916\u093e\u092e\u093f\u092f\u094b\u0902 \u0915\u094b \u0909\u091c\u093e\u0917\u0930 \u0915\u0930\u0924\u093e \u0939\u0948:<\/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>\u092e\u0942\u0932\u094d\u092f-\u0906\u0927\u093e\u0930\u093f\u0924 \u092e\u0942\u0932\u094d\u092f \u0928\u093f\u0930\u094d\u0927\u093e\u0930\u0923 \u0915\u0940 \u0935\u093f\u092b\u0932\u0924\u093e<\/strong><\/h3>\n\n\n\n<p class=\"wp-block-paragraph\">\u092e\u094c\u091c\u0942\u0926\u093e \u092e\u0942\u0932\u094d\u092f \u0928\u093f\u0930\u094d\u0927\u093e\u0930\u0923 \u092e\u0949\u0921\u0932 \u092e\u0942\u0932\u094d\u092f \u0915\u094b \u092a\u094d\u0930\u0924\u093f\u092c\u093f\u0902\u092c\u093f\u0924 \u0915\u0930\u0928\u0947 \u0915\u093e \u0926\u093e\u0935\u093e \u0915\u0930\u0924\u0947 \u0939\u0948\u0902\u0964 \u0935\u093e\u0938\u094d\u0924\u0935\u093f\u0915\u0924\u093e \u092e\u0947\u0902:<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li>\u092e\u0942\u0932\u094d\u092f \u092c\u0922\u093c\u093e-\u091a\u0922\u093c\u093e\u0915\u0930 \u092c\u0924\u093e\u092f\u093e \u0917\u092f\u093e \u0939\u0948<\/li>\n\n\n\n<li>\u0938\u092c\u0942\u0924 \u0938\u0940\u092e\u093f\u0924 \u0939\u0948\u0902\u0964<\/li>\n\n\n\n<li>\u0915\u0940\u092e\u0924\u094b\u0902 \u0915\u093e \u092a\u0930\u093f\u0923\u093e\u092e\u094b\u0902 \u0938\u0947 \u0915\u094b\u0908 \u0938\u0940\u0927\u093e \u0938\u0902\u092c\u0902\u0927 \u0928\u0939\u0940\u0902 \u0939\u0948\u0964<\/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>\u0935\u0948\u0936\u094d\u0935\u093f\u0915 \u0938\u092e\u0928\u094d\u0935\u092f \u0915\u093e \u0905\u092d\u093e\u0935<\/strong><\/h3>\n\n\n\n<p class=\"wp-block-paragraph\">\u0907\u0938\u0915\u0947 \u0932\u093f\u090f \u0915\u094b\u0908 \u090f\u0915\u0940\u0915\u0943\u0924 \u0930\u0923\u0928\u0940\u0924\u093f \u092e\u094c\u091c\u0942\u0926 \u0928\u0939\u0940\u0902 \u0939\u0948:<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li>\u0915\u0940\u092e\u0924\u094b\u0902 \u092a\u0930 \u0938\u093e\u092e\u0942\u0939\u093f\u0915 \u0930\u0942\u092a \u0938\u0947 \u092c\u093e\u0924\u091a\u0940\u0924 \u0915\u0930\u0947\u0902<\/li>\n\n\n\n<li>\u0921\u0947\u091f\u093e \u0915\u094b \u092a\u093e\u0930\u0926\u0930\u094d\u0936\u0940 \u0924\u0930\u0940\u0915\u0947 \u0938\u0947 \u0938\u093e\u091d\u093e \u0915\u0930\u0947\u0902<\/li>\n\n\n\n<li>\u0938\u092e\u093e\u0928 \u092a\u0939\u0941\u0902\u091a \u0938\u0941\u0928\u093f\u0936\u094d\u091a\u093f\u0924 \u0915\u0930\u0947\u0902<\/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>\u0915\u094d\u092f\u093e \u092c\u0926\u0932\u0928\u0947 \u0915\u0940 \u091c\u0930\u0942\u0930\u0924 \u0939\u0948 \u2013 \u0924\u0924\u094d\u0915\u093e\u0932 \u0938\u0941\u0927\u093e\u0930<\/strong><\/h2>\n\n\n\n<p class=\"wp-block-paragraph\">\u092f\u0939 \u0938\u094d\u0925\u093f\u0924\u093f \u0905\u092a\u0930\u093f\u0939\u093e\u0930\u094d\u092f \u0928\u0939\u0940\u0902 \u0939\u0948\u0964 \u092f\u0939 \u0928\u0940\u0924\u093f\u0917\u0924 \u0928\u093f\u0930\u094d\u0923\u092f\u094b\u0902 \u0915\u093e \u092a\u0930\u093f\u0923\u093e\u092e \u0939\u0948\u2014\u0914\u0930 \u0907\u0938\u0947 \u092c\u0926\u0932\u093e \u091c\u093e \u0938\u0915\u0924\u093e \u0939\u0948\u0964.<\/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>\u092e\u0942\u0932\u094d\u092f \u0928\u093f\u0930\u094d\u0927\u093e\u0930\u0923 \u092e\u0947\u0902 \u092a\u093e\u0930\u0926\u0930\u094d\u0936\u093f\u0924\u093e \u0932\u093e\u0917\u0942 \u0915\u0930\u0947\u0902<\/strong><\/h3>\n\n\n\n<ul class=\"wp-block-list\">\n<li>\u0905\u0928\u0941\u0938\u0902\u0927\u093e\u0928 \u090f\u0935\u0902 \u0935\u093f\u0915\u093e\u0938 \u0932\u093e\u0917\u0924\u094b\u0902 \u0915\u093e \u0905\u0928\u093f\u0935\u093e\u0930\u094d\u092f \u092a\u094d\u0930\u0915\u091f\u0940\u0915\u0930\u0923<\/li>\n\n\n\n<li>\u092e\u0942\u0932\u094d\u092f \u0928\u093f\u0930\u094d\u0927\u093e\u0930\u0923 \u0922\u093e\u0901\u091a\u094b\u0902 \u0924\u0915 \u0938\u093e\u0930\u094d\u0935\u091c\u0928\u093f\u0915 \u092a\u0939\u0941\u0901\u091a<\/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>\u0935\u0948\u0936\u094d\u0935\u093f\u0915 \u092e\u0942\u0932\u094d\u092f \u0935\u093e\u0930\u094d\u0924\u093e \u0917\u0920\u092c\u0902\u0927\u0928<\/strong><\/h3>\n\n\n\n<p class=\"wp-block-paragraph\">\u0926\u0947\u0936\u094b\u0902 \u0915\u094b \u0928\u093f\u092e\u094d\u0928\u0932\u093f\u0916\u093f\u0924 \u0915\u093e\u0930\u094d\u092f\u094b\u0902 \u0915\u0947 \u0932\u093f\u090f \u0938\u0939\u092f\u094b\u0917 \u0915\u0930\u0928\u093e \u091a\u093e\u0939\u093f\u090f:<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li>\u0938\u094c\u0926\u0947\u092c\u093e\u091c\u0940 \u0915\u0940 \u0936\u0915\u094d\u0924\u093f \u092c\u0922\u093c\u093e\u090f\u0901<\/li>\n\n\n\n<li>\u092e\u0942\u0932\u094d\u092f \u0936\u094b\u0937\u0923 \u0915\u094b \u0930\u094b\u0915\u0947\u0902<\/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>\u0905\u0928\u093e\u0925 \u0914\u0937\u0927\u093f \u092a\u094d\u0930\u0923\u093e\u0932\u0940 \u092e\u0947\u0902 \u0938\u0941\u0927\u093e\u0930 \u0915\u0930\u0947\u0902<\/strong><\/h3>\n\n\n\n<ul class=\"wp-block-list\">\n<li>\u0905\u0924\u094d\u092f\u0927\u093f\u0915 \u0935\u093f\u0936\u093f\u0937\u094d\u091f\u0924\u093e \u0915\u094b \u0938\u0940\u092e\u093f\u0924 \u0915\u0930\u0947\u0902<\/li>\n\n\n\n<li>\u092a\u094d\u0930\u094b\u0924\u094d\u0938\u093e\u0939\u0928\u094b\u0902 \u0915\u094b \u0938\u093e\u092e\u0930\u094d\u0925\u094d\u092f \u0938\u0947 \u091c\u094b\u0921\u093c\u0947\u0902<\/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>\u0935\u0915\u093e\u0932\u0924 \u0938\u092e\u0942\u0939\u094b\u0902 \u0915\u0947 \u0932\u093f\u090f \u0938\u094d\u0935\u0924\u0902\u0924\u094d\u0930 \u0935\u093f\u0924\u094d\u0924\u092a\u094b\u0937\u0923<\/strong><\/h3>\n\n\n\n<p class=\"wp-block-paragraph\">\u0939\u093f\u0924\u094b\u0902 \u0915\u0947 \u091f\u0915\u0930\u093e\u0935 \u0915\u094b \u0938\u092e\u093e\u092a\u094d\u0924 \u0915\u0930\u0928\u0947 \u0915\u0947 \u0932\u093f\u090f:<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li>\u092b\u093e\u0930\u094d\u092e\u093e \u0915\u0902\u092a\u0928\u093f\u092f\u094b\u0902 \u0938\u0947 \u092e\u093f\u0932\u0928\u0947 \u0935\u093e\u0932\u0947 \u0927\u0928 \u092a\u0930 \u0928\u093f\u0930\u094d\u092d\u0930\u0924\u093e \u0915\u092e \u0915\u0930\u0947\u0902<\/li>\n\n\n\n<li>\u0938\u093e\u0930\u094d\u0935\u091c\u0928\u093f\u0915 \u0914\u0930 \u0938\u094d\u0935\u0924\u0902\u0924\u094d\u0930 \u0905\u0928\u0941\u0926\u093e\u0928\u094b\u0902 \u092e\u0947\u0902 \u0935\u0943\u0926\u094d\u0927\u093f \u0915\u0930\u0947\u0902<\/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>\u0905\u0915\u094d\u0938\u0930 \u092a\u0942\u091b\u0947 \u091c\u093e\u0928\u0947 \u0935\u093e\u0932\u0947 \u092a\u094d\u0930\u0936\u094d\u0928: \u0921\u094d\u092f\u0942\u0936\u0947\u0928 \u092e\u0938\u094d\u0915\u0941\u0932\u0930 \u0921\u093f\u0938\u094d\u091f\u094d\u0930\u0949\u092b\u0940 \u0915\u0947 \u0909\u092a\u091a\u093e\u0930 \u0915\u0940 \u0932\u093e\u0917\u0924\u0947\u0902<\/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\">\u0921\u094d\u092f\u0942\u0936\u0947\u0928 \u092e\u0938\u094d\u0915\u0941\u0932\u0930 \u0921\u093f\u0938\u094d\u091f\u094d\u0930\u0949\u092b\u0940 \u0915\u0947 \u0907\u0932\u093e\u091c \u092e\u0947\u0902 \u0915\u093f\u0924\u0928\u093e \u0916\u0930\u094d\u091a \u0906\u0924\u093e \u0939\u0948?<\/h3>\n<div class=\"rank-math-answer\">\n\n<p><strong>\u0921\u094d\u092f\u0942\u0936\u0947\u0928 \u092e\u0938\u094d\u0915\u0941\u0932\u0930 \u0921\u093f\u0938\u094d\u091f\u094d\u0930\u0949\u092b\u0940 \u0915\u0947 \u0909\u092a\u091a\u093e\u0930 \u0915\u0940 \u0932\u093e\u0917\u0924 \u092a\u094d\u0930\u0924\u093f \u0930\u094b\u0917\u0940 \u0932\u093e\u0916\u094b\u0902 \u0921\u0949\u0932\u0930 \u0938\u0947 \u0932\u0947\u0915\u0930 \u0915\u0908 \u092e\u093f\u0932\u093f\u092f\u0928 \u0921\u0949\u0932\u0930 \u0924\u0915 \u0939\u094b \u0938\u0915\u0924\u0940 \u0939\u0948\u0964.<\/strong> \u091c\u0940\u0928 \u0925\u0947\u0930\u0947\u092a\u0940 \u0915\u0947 \u090f\u0915 \u0909\u092a\u091a\u093e\u0930 \u0915\u0940 \u0932\u093e\u0917\u0924 \u0939\u0940 2-3 \u092e\u093f\u0932\u093f\u092f\u0928 \u0905\u092e\u0947\u0930\u093f\u0915\u0940 \u0921\u0949\u0932\u0930 \u0938\u0947 \u0905\u0927\u093f\u0915 \u0939\u094b \u0938\u0915\u0924\u0940 \u0939\u0948, \u091c\u092c\u0915\u093f \u090f\u0915\u094d\u0938\u0949\u0928-\u0938\u094d\u0915\u093f\u092a\u093f\u0902\u0917 \u0926\u0935\u093e\u0913\u0902 \u0915\u0940 \u0935\u093e\u0930\u094d\u0937\u093f\u0915 \u0932\u093e\u0917\u0924 13 \u0932\u093e\u0916 \u0905\u092e\u0947\u0930\u093f\u0915\u0940 \u0921\u0949\u0932\u0930 \u0938\u0947 \u0905\u0927\u093f\u0915 \u0939\u094b \u0938\u0915\u0924\u0940 \u0939\u0948\u0964 \u091c\u092c \u0907\u0938\u092e\u0947\u0902 \u092b\u093f\u091c\u093f\u092f\u094b\u0925\u0947\u0930\u0947\u092a\u0940, \u0915\u093e\u0930\u094d\u0921\u093f\u092f\u0915 \u0938\u092a\u094b\u0930\u094d\u091f, \u0936\u094d\u0935\u0938\u0928 \u0926\u0947\u0916\u092d\u093e\u0932 \u0914\u0930 \u0938\u0939\u093e\u092f\u0915 \u0909\u092a\u0915\u0930\u0923\u094b\u0902 \u091c\u0948\u0938\u0940 \u0928\u093f\u0930\u0902\u0924\u0930 \u0926\u0947\u0916\u092d\u093e\u0932 \u0915\u094b \u092d\u0940 \u0936\u093e\u092e\u093f\u0932 \u0915\u093f\u092f\u093e \u091c\u093e\u0924\u093e \u0939\u0948, \u0924\u094b \u091c\u0940\u0935\u0928 \u092d\u0930 \u0915\u0940 \u0932\u093e\u0917\u0924 \u0905\u0915\u094d\u0938\u0930 \u0915\u0908 \u092e\u093f\u0932\u093f\u092f\u0928 \u0921\u0949\u0932\u0930 \u0924\u0915 \u092a\u0939\u0941\u0902\u091a \u091c\u093e\u0924\u0940 \u0939\u0948\u0964 \u092f\u0947 \u0906\u0902\u0915\u0921\u093c\u0947 \u0926\u0947\u0936, \u092c\u0940\u092e\u093e \u0915\u0935\u0930\u0947\u091c \u0914\u0930 \u0909\u092a\u091a\u093e\u0930 \u0915\u093e\u0930\u094d\u092f\u0915\u094d\u0930\u092e\u094b\u0902 \u0915\u0940 \u0909\u092a\u0932\u092c\u094d\u0927\u0924\u093e \u0915\u0947 \u0906\u0927\u093e\u0930 \u092a\u0930 \u092d\u093f\u0928\u094d\u0928-\u092d\u093f\u0928\u094d\u0928 \u0939\u094b\u0924\u0947 \u0939\u0948\u0902\u0964.<\/p>\n\n<\/div>\n<\/div>\n<div id=\"faq-question-1775498446894\" class=\"rank-math-list-item\">\n<h3 class=\"rank-math-question\">\u0921\u094d\u092f\u0942\u0936\u0947\u0928 \u092e\u0938\u094d\u0915\u0941\u0932\u0930 \u0921\u093f\u0938\u094d\u091f\u094d\u0930\u0949\u092b\u0940 \u0915\u093e \u0907\u0932\u093e\u091c \u0907\u0924\u0928\u093e \u092e\u0939\u0902\u0917\u093e \u0915\u094d\u092f\u094b\u0902 \u0939\u0948?<\/h3>\n<div class=\"rank-math-answer\">\n\n<p>\u0921\u094d\u092f\u0942\u0936\u0947\u0928 \u092e\u0938\u094d\u0915\u0941\u0932\u0930 \u0921\u093f\u0938\u094d\u091f\u094d\u0930\u0949\u092b\u0940 \u0915\u0947 \u0907\u0932\u093e\u091c \u0915\u0940 \u0909\u091a\u094d\u091a \u0932\u093e\u0917\u0924 \u092e\u0941\u0916\u094d\u092f \u0930\u0942\u092a \u0938\u0947 \u0938\u0940\u092e\u093f\u0924 \u0930\u094b\u0917\u0940 \u0938\u0902\u0916\u094d\u092f\u093e (\u0926\u0941\u0930\u094d\u0932\u092d \u0930\u094b\u0917 \u0915\u0940 \u0938\u094d\u0925\u093f\u0924\u093f), \u092e\u0939\u0902\u0917\u0947 \u0905\u0928\u0941\u0938\u0902\u0927\u093e\u0928 \u0914\u0930 \u0935\u093f\u0915\u093e\u0938 \u092a\u094d\u0930\u0915\u094d\u0930\u093f\u092f\u093e\u0913\u0902 \u0914\u0930 \u0905\u0928\u093e\u0925 \u0926\u0935\u093e \u0928\u093f\u092f\u092e\u094b\u0902 \u0915\u0947 \u0924\u0939\u0924 \u092c\u093e\u091c\u093e\u0930 \u092e\u0947\u0902 \u090f\u0915\u093e\u0927\u093f\u0915\u093e\u0930 \u091c\u0948\u0938\u0947 \u0915\u093e\u0930\u0915\u094b\u0902 \u0938\u0947 \u092a\u094d\u0930\u0947\u0930\u093f\u0924 \u0939\u0948\u0964 \u0939\u093e\u0932\u093e\u0902\u0915\u093f, \u0906\u0932\u094b\u091a\u0915\u094b\u0902 \u0915\u093e \u0924\u0930\u094d\u0915 \u0939\u0948 \u0915\u093f \u0915\u0940\u092e\u0924\u0947\u0902 \u0905\u0915\u094d\u0938\u0930 \u0932\u093e\u0917\u0924 \u0915\u0940 \u0935\u0938\u0942\u0932\u0940 \u0915\u0947 \u0932\u093f\u090f \u0906\u0935\u0936\u094d\u092f\u0915 \u0930\u093e\u0936\u093f \u0938\u0947 \u0905\u0927\u093f\u0915 \u0939\u094b\u0924\u0940 \u0939\u0948\u0902, \u091c\u094b \u0935\u093e\u0938\u094d\u0924\u0935\u093f\u0915 \u092e\u0942\u0932\u094d\u092f \u092f\u093e \u0935\u0939\u0928\u0940\u092f\u0924\u093e \u0915\u0947 \u092c\u091c\u093e\u092f \u0932\u093e\u092d-\u092a\u094d\u0930\u0947\u0930\u093f\u0924 \u092e\u0942\u0932\u094d\u092f \u0928\u093f\u0930\u094d\u0927\u093e\u0930\u0923 \u0930\u0923\u0928\u0940\u0924\u093f\u092f\u094b\u0902 \u0915\u094b \u0926\u0930\u094d\u0936\u093e\u0924\u0940 \u0939\u0948\u0902\u0964.<\/p>\n\n<\/div>\n<\/div>\n<div id=\"faq-question-1775498466979\" class=\"rank-math-list-item\">\n<h3 class=\"rank-math-question\">\u0915\u094d\u092f\u093e \u0921\u094d\u092f\u0942\u0936\u0947\u0928 \u0930\u094b\u0917 \u0915\u093e \u0907\u0932\u093e\u091c \u092c\u0940\u092e\u093e \u092f\u093e \u0938\u0930\u0915\u093e\u0930\u0940 \u0938\u094d\u0935\u093e\u0938\u094d\u0925\u094d\u092f \u0938\u0947\u0935\u093e \u0915\u0947 \u0905\u0902\u0924\u0930\u094d\u0917\u0924 \u0906\u0924\u093e \u0939\u0948?<\/h3>\n<div class=\"rank-math-answer\">\n\n<p>\u0921\u094d\u092f\u0942\u0936\u0947\u0928 \u092e\u0938\u094d\u0915\u0941\u0932\u0930 \u0921\u093f\u0938\u094d\u091f\u094d\u0930\u0949\u092b\u0940 \u0915\u0947 \u0907\u0932\u093e\u091c \u0915\u0947 \u0916\u0930\u094d\u091a \u0915\u0940 \u0915\u0935\u0930\u0947\u091c \u092e\u0947\u0902 \u0915\u093e\u092b\u0940 \u0905\u0902\u0924\u0930 \u0939\u094b\u0924\u093e \u0939\u0948\u0964 \u0915\u0941\u091b \u0926\u0947\u0936\u094b\u0902 \u092e\u0947\u0902, \u0930\u093e\u0937\u094d\u091f\u094d\u0930\u0940\u092f \u0938\u094d\u0935\u093e\u0938\u094d\u0925\u094d\u092f \u0938\u0947\u0935\u093e \u092a\u094d\u0930\u0923\u093e\u0932\u0940 \u092f\u093e \u092c\u0940\u092e\u093e \u092a\u094d\u0930\u0926\u093e\u0924\u093e \u0907\u0932\u093e\u091c \u0915\u093e \u0915\u0941\u091b \u0939\u093f\u0938\u094d\u0938\u093e \u092f\u093e \u092a\u0942\u0930\u093e \u0916\u0930\u094d\u091a \u0915\u0935\u0930 \u0915\u0930 \u0938\u0915\u0924\u0947 \u0939\u0948\u0902, \u0932\u0947\u0915\u093f\u0928 \u092e\u0902\u091c\u093c\u0942\u0930\u0940 \u0915\u0940 \u092a\u094d\u0930\u0915\u094d\u0930\u093f\u092f\u093e \u0927\u0940\u092e\u0940 \u0914\u0930 \u091c\u091f\u093f\u0932 \u0939\u094b \u0938\u0915\u0924\u0940 \u0939\u0948\u0964 \u0905\u0928\u094d\u092f \u0915\u094d\u0937\u0947\u0924\u094d\u0930\u094b\u0902 \u092e\u0947\u0902, \u092a\u0930\u093f\u0935\u093e\u0930\u094b\u0902 \u0915\u094b \u0906\u0902\u0936\u093f\u0915 \u0915\u0935\u0930\u0947\u091c, \u091c\u0947\u092c \u0938\u0947 \u092d\u093e\u0930\u0940 \u0916\u0930\u094d\u091a \u092f\u093e \u0907\u0932\u093e\u091c \u0924\u0915 \u092a\u0939\u0941\u0902\u091a \u0915\u0940 \u092a\u0942\u0930\u0940 \u0915\u092e\u0940 \u091c\u0948\u0938\u0940 \u0938\u092e\u0938\u094d\u092f\u093e\u0913\u0902 \u0915\u093e \u0938\u093e\u092e\u0928\u093e \u0915\u0930\u0928\u093e \u092a\u0921\u093c \u0938\u0915\u0924\u093e \u0939\u0948\u0964 \u0915\u0935\u0930\u0947\u091c \u0939\u094b\u0928\u0947 \u092a\u0930 \u092d\u0940, \u092a\u093e\u0924\u094d\u0930\u0924\u093e \u092e\u093e\u0928\u0926\u0902\u0921 \u0914\u0930 \u092d\u0941\u0917\u0924\u093e\u0928 \u092e\u0947\u0902 \u0926\u0947\u0930\u0940 \u0938\u092e\u092f \u092a\u0930 \u0907\u0932\u093e\u091c \u0915\u094b \u0915\u093e\u092b\u0940 \u0939\u0926 \u0924\u0915 \u0938\u0940\u092e\u093f\u0924 \u0915\u0930 \u0938\u0915\u0924\u0940 \u0939\u0948\u0964.<\/p>\n\n<\/div>\n<\/div>\n<div id=\"faq-question-1775498483029\" class=\"rank-math-list-item\">\n<h3 class=\"rank-math-question\">\u0915\u094d\u092f\u093e \u092a\u0930\u093f\u0935\u093e\u0930\u094b\u0902 \u0915\u094b \u0921\u094d\u092f\u0942\u0936\u0947\u0928 \u0930\u094b\u0917 \u0915\u0947 \u0907\u0932\u093e\u091c \u0915\u0947 \u0932\u093f\u090f \u0935\u093f\u0924\u094d\u0924\u0940\u092f \u0938\u0939\u093e\u092f\u0924\u093e \u092e\u093f\u0932 \u0938\u0915\u0924\u0940 \u0939\u0948?<\/h3>\n<div class=\"rank-math-answer\">\n\n<p>\u091c\u0940 \u0939\u093e\u0902, \u0915\u0941\u091b \u092a\u0930\u093f\u0935\u093e\u0930 \u0930\u094b\u0917\u0940 \u0938\u0939\u093e\u092f\u0924\u093e \u0915\u093e\u0930\u094d\u092f\u0915\u094d\u0930\u092e\u094b\u0902, \u0917\u0948\u0930-\u0932\u093e\u092d\u0915\u093e\u0930\u0940 \u0938\u0902\u0917\u0920\u0928\u094b\u0902 \u0914\u0930 \u0915\u094d\u0930\u093e\u0909\u0921\u092b\u0902\u0921\u093f\u0902\u0917 \u092a\u094d\u0932\u0947\u091f\u092b\u0949\u0930\u094d\u092e\u094b\u0902 \u0915\u0947 \u092e\u093e\u0927\u094d\u092f\u092e \u0938\u0947 \u0921\u094d\u092f\u0942\u0936\u0947\u0928 \u092e\u0938\u094d\u0915\u0941\u0932\u0930 \u0921\u093f\u0938\u094d\u091f\u094d\u0930\u0949\u092b\u0940 \u0915\u0947 \u0909\u092a\u091a\u093e\u0930 \u0915\u0947 \u0916\u0930\u094d\u091a \u0915\u094b \u0935\u0939\u0928 \u0915\u0930\u0928\u0947 \u0915\u0947 \u0932\u093f\u090f \u0935\u093f\u0924\u094d\u0924\u0940\u092f \u0938\u0939\u093e\u092f\u0924\u093e \u092a\u094d\u0930\u093e\u092a\u094d\u0924 \u0915\u0930 \u0938\u0915\u0924\u0947 \u0939\u0948\u0902\u0964 \u0926\u0935\u093e \u0915\u0902\u092a\u0928\u093f\u092f\u093e\u0902 \u092d\u0940 \u0938\u0940\u092e\u093f\u0924 \u092a\u0939\u0941\u0902\u091a \u0935\u093e\u0932\u0947 \u0915\u093e\u0930\u094d\u092f\u0915\u094d\u0930\u092e \u092a\u0947\u0936 \u0915\u0930 \u0938\u0915\u0924\u0940 \u0939\u0948\u0902\u0964 \u0939\u093e\u0932\u093e\u0902\u0915\u093f, \u092f\u0947 \u0935\u093f\u0915\u0932\u094d\u092a \u0905\u0915\u094d\u0938\u0930 \u0905\u0928\u093f\u092f\u092e\u093f\u0924, \u0905\u0924\u094d\u092f\u0927\u093f\u0915 \u092a\u094d\u0930\u0924\u093f\u0938\u094d\u092a\u0930\u094d\u0927\u0940 \u0914\u0930 \u0915\u0941\u0932 \u0932\u093e\u0917\u0924 \u0915\u094b \u092a\u0942\u0930\u0940 \u0924\u0930\u0939 \u0938\u0947 \u0915\u0935\u0930 \u0915\u0930\u0928\u0947 \u0915\u0947 \u0932\u093f\u090f \u0905\u092a\u0930\u094d\u092f\u093e\u092a\u094d\u0924 \u0939\u094b\u0924\u0947 \u0939\u0948\u0902, \u091c\u093f\u0938\u0938\u0947 \u0915\u0908 \u092a\u0930\u093f\u0935\u093e\u0930\u094b\u0902 \u0915\u094b \u0905\u092d\u0940 \u092d\u0940 \u092d\u093e\u0930\u0940 \u0935\u093f\u0924\u094d\u0924\u0940\u092f \u092c\u094b\u091d \u0915\u093e \u0938\u093e\u092e\u0928\u093e \u0915\u0930\u0928\u093e \u092a\u0921\u093c\u0924\u093e \u0939\u0948\u0964.<\/p>\n\n<\/div>\n<\/div>\n<div id=\"faq-question-1775498493664\" class=\"rank-math-list-item\">\n<h3 class=\"rank-math-question\">\u0915\u094d\u092f\u093e \u0921\u094d\u092f\u0942\u0936\u0947\u0928 \u092e\u0938\u094d\u0915\u0941\u0932\u0930 \u0921\u093f\u0938\u094d\u091f\u094d\u0930\u0949\u092b\u0940 \u0915\u0947 \u0907\u0932\u093e\u091c \u0915\u0940 \u0932\u093e\u0917\u0924 \u0915\u094b \u0915\u092e \u0915\u0930\u0928\u0947 \u0915\u093e \u0915\u094b\u0908 \u0924\u0930\u0940\u0915\u093e \u0939\u0948?<\/h3>\n<div class=\"rank-math-answer\">\n\n<p>\u0921\u094d\u092f\u0942\u0936\u0947\u0928 \u092e\u0938\u094d\u0915\u0941\u0932\u0930 \u0921\u093f\u0938\u094d\u091f\u094d\u0930\u0949\u092b\u0940 \u0915\u0947 \u0907\u0932\u093e\u091c \u0915\u0940 \u0932\u093e\u0917\u0924 \u0915\u094b \u0935\u094d\u092f\u0915\u094d\u0924\u093f\u0917\u0924 \u0938\u094d\u0924\u0930 \u092a\u0930 \u0915\u092e \u0915\u0930\u0928\u093e \u091a\u0941\u0928\u094c\u0924\u0940\u092a\u0942\u0930\u094d\u0923 \u0939\u0948, \u0932\u0947\u0915\u093f\u0928 \u092a\u0930\u093f\u0935\u093e\u0930 \u0915\u0908 \u0930\u0923\u0928\u0940\u0924\u093f\u092f\u094b\u0902 \u0915\u093e \u0938\u0939\u093e\u0930\u093e \u0932\u0947 \u0938\u0915\u0924\u0947 \u0939\u0948\u0902\u0964 \u0907\u0928\u092e\u0947\u0902 \u0930\u093f\u092f\u093e\u092f\u0924\u0940 \u0938\u094d\u0935\u093e\u0938\u094d\u0925\u094d\u092f \u0938\u0947\u0935\u093e \u0935\u093e\u0932\u0947 \u0926\u0947\u0936\u094b\u0902 \u092e\u0947\u0902 \u0907\u0932\u093e\u091c \u0915\u0930\u093e\u0928\u093e, \u0915\u094d\u0932\u093f\u0928\u093f\u0915\u0932 \u091f\u094d\u0930\u093e\u092f\u0932 \u0915\u0947 \u0932\u093f\u090f \u0906\u0935\u0947\u0926\u0928 \u0915\u0930\u0928\u093e, \u092c\u0940\u092e\u093e \u092a\u094d\u0930\u0926\u093e\u0924\u093e\u0913\u0902 \u0915\u0947 \u0938\u093e\u0925 \u092c\u093e\u0924\u091a\u0940\u0924 \u0915\u0930\u0928\u093e \u0914\u0930 \u0917\u0948\u0930-\u0932\u093e\u092d\u0915\u093e\u0930\u0940 \u0938\u0939\u093e\u092f\u0924\u093e \u0915\u093e\u0930\u094d\u092f\u0915\u094d\u0930\u092e\u094b\u0902 \u0915\u093e \u0932\u093e\u092d \u0909\u0920\u093e\u0928\u093e \u0936\u093e\u092e\u093f\u0932 \u0939\u0948\u0964 \u0935\u094d\u092f\u093e\u092a\u0915 \u0938\u094d\u0924\u0930 \u092a\u0930, \u0909\u092a\u091a\u093e\u0930 \u0915\u094b \u0905\u0927\u093f\u0915 \u0915\u093f\u092b\u093e\u092f\u0924\u0940 \u0914\u0930 \u0938\u0941\u0932\u092d \u092c\u0928\u093e\u0928\u0947 \u0915\u0947 \u0932\u093f\u090f \u092e\u0942\u0932\u094d\u092f \u0928\u093f\u0930\u094d\u0927\u093e\u0930\u0923 \u0935\u093f\u0928\u093f\u092f\u092e\u0928, \u0935\u0948\u0936\u094d\u0935\u093f\u0915 \u0938\u094d\u0924\u0930 \u092a\u0930 \u092c\u093e\u0924\u091a\u0940\u0924 \u0915\u0947 \u092a\u094d\u0930\u092f\u093e\u0938 \u0914\u0930 \u0928\u0940\u0924\u093f\u0917\u0924 \u0938\u0941\u0927\u093e\u0930 \u091c\u0948\u0938\u0947 \u092a\u094d\u0930\u0923\u093e\u0932\u0940\u0917\u0924 \u092c\u0926\u0932\u093e\u0935 \u0906\u0935\u0936\u094d\u092f\u0915 \u0939\u0948\u0902\u0964.<\/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=\"\u0921\u094d\u092f\u0942\u0936\u0947\u0928 \u092e\u0938\u094d\u0915\u0941\u0932\u0930 \u0921\u093f\u0938\u094d\u091f\u094d\u0930\u0949\u092b\u0940 \u0915\u0947 \u0909\u092a\u091a\u093e\u0930 \u0915\u0940 \u0932\u093e\u0917\u0924\" 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>\u0905\u0902\u0924\u093f\u092e \u0935\u093f\u091a\u093e\u0930 \u2013 \u090f\u0915 \u0910\u0938\u0940 \u0935\u094d\u092f\u0935\u0938\u094d\u0925\u093e \u091c\u094b \u091c\u0935\u093e\u092c\u0926\u0947\u0939\u0940 \u0915\u0940 \u092e\u093e\u0902\u0917 \u0915\u0930\u0924\u0940 \u0939\u0948<\/strong><\/h2>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>\u0921\u094d\u092f\u0942\u0936\u0947\u0928 \u092e\u0938\u094d\u0915\u0941\u0932\u0930 \u0921\u093f\u0938\u094d\u091f\u094d\u0930\u0949\u092b\u0940 \u0915\u0947 \u0909\u092a\u091a\u093e\u0930 \u0915\u0940 \u0932\u093e\u0917\u0924 \u0915\u093e \u0938\u0902\u0915\u091f \u0915\u0947\u0935\u0932 \u092a\u0948\u0938\u0947 \u0938\u0947 \u0938\u0902\u092c\u0902\u0927\u093f\u0924 \u0928\u0939\u0940\u0902 \u0939\u0948 - \u092f\u0939 \u0928\u0948\u0924\u093f\u0915\u0924\u093e, \u092a\u094d\u0930\u093e\u0925\u092e\u093f\u0915\u0924\u093e\u0913\u0902 \u0914\u0930 \u091c\u093f\u092e\u094d\u092e\u0947\u0926\u093e\u0930\u0940 \u0938\u0947 \u0938\u0902\u092c\u0902\u0927\u093f\u0924 \u0939\u0948\u0964.<\/strong> \u0926\u0935\u093e \u0915\u0902\u092a\u0928\u093f\u092f\u093e\u0902 \u092e\u0930\u0940\u091c\u094b\u0902 \u0915\u094b \u092c\u093e\u0939\u0930 \u0930\u0916\u0928\u0947 \u0935\u093e\u0932\u0940 \u092e\u0942\u0932\u094d\u092f \u0928\u093f\u0930\u094d\u0927\u093e\u0930\u0923 \u0930\u0923\u0928\u0940\u0924\u093f\u092f\u094b\u0902 \u0915\u093e \u092c\u091a\u093e\u0935 \u0915\u0930\u0928\u093e \u091c\u093e\u0930\u0940 \u0930\u0916\u0924\u0940 \u0939\u0948\u0902\u0964 \u0938\u0930\u0915\u093e\u0930\u0947\u0902 \u0909\u0928\u094d\u0939\u0947\u0902 \u091a\u0941\u0928\u094c\u0924\u0940 \u0926\u0947\u0928\u0947 \u092e\u0947\u0902 \u0939\u093f\u091a\u0915\u093f\u091a\u093e\u0924\u0940 \u0939\u0948\u0902\u0964 \u0935\u0915\u093e\u0932\u0924 \u0938\u092e\u0942\u0939 \u0905\u0915\u094d\u0938\u0930 \u0935\u093f\u0924\u094d\u0924\u0940\u092f \u0928\u093f\u0930\u094d\u092d\u0930\u0924\u093e\u0913\u0902 \u0938\u0947 \u092c\u0902\u0927\u0947 \u0930\u0939\u0924\u0947 \u0939\u0948\u0902\u0964.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">\u0907\u0938 \u092c\u0940\u091a, \u0921\u094d\u092f\u0942\u0936\u0947\u0928 \u092e\u0938\u094d\u0915\u0941\u0932\u0930 \u0921\u093f\u0938\u094d\u091f\u094d\u0930\u0949\u092b\u0940 \u0938\u0947 \u092a\u0940\u0921\u093c\u093f\u0924 \u092c\u091a\u094d\u091a\u0947 \u0938\u092e\u092f \u0916\u094b \u0926\u0947\u0924\u0947 \u0939\u0948\u0902 - \u0935\u0939 \u0938\u092e\u092f \u091c\u093f\u0938\u0947 \u0935\u0947 \u0916\u094b\u0928\u0947 \u0915\u093e \u091c\u094b\u0916\u093f\u092e \u0928\u0939\u0940\u0902 \u0909\u0920\u093e \u0938\u0915\u0924\u0947\u0964.<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li>\u092f\u0939 \u0915\u094b\u0908 \u0928\u0935\u093e\u091a\u093e\u0930 \u0928\u0939\u0940\u0902 \u0939\u0948\u0964.<\/li>\n\n\n\n<li>\u092f\u0939 \u092a\u094d\u0930\u0917\u0924\u093f \u0928\u0939\u0940\u0902 \u0939\u0948\u0964.<\/li>\n\n\n\n<li>\u092f\u0939 \u090f\u0915 \u0935\u094d\u092f\u0935\u0938\u094d\u0925\u093e\u0917\u0924 \u0935\u093f\u092b\u0932\u0924\u093e \u0939\u0948 \u091c\u093f\u0938\u0915\u0947 \u0932\u093f\u090f \u0924\u0924\u094d\u0915\u093e\u0932 \u091c\u0935\u093e\u092c\u0926\u0947\u0939\u0940 \u0915\u0940 \u0906\u0935\u0936\u094d\u092f\u0915\u0924\u093e \u0939\u0948\u0964.<\/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\/hi\/wp-json\/wp\/v2\/posts\/2196","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/dmdwarrior.com\/hi\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/dmdwarrior.com\/hi\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/dmdwarrior.com\/hi\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/dmdwarrior.com\/hi\/wp-json\/wp\/v2\/comments?post=2196"}],"version-history":[{"count":0,"href":"https:\/\/dmdwarrior.com\/hi\/wp-json\/wp\/v2\/posts\/2196\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/dmdwarrior.com\/hi\/wp-json\/wp\/v2\/media\/7349"}],"wp:attachment":[{"href":"https:\/\/dmdwarrior.com\/hi\/wp-json\/wp\/v2\/media?parent=2196"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/dmdwarrior.com\/hi\/wp-json\/wp\/v2\/categories?post=2196"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/dmdwarrior.com\/hi\/wp-json\/wp\/v2\/tags?post=2196"}],"curies":[{"name":"\u0921\u092c\u094d\u0932\u094d\u092f\u0942\u092a\u0940","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}