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وقتی نوجوانی بیش نبودم تهیه خون و دسفرال برای من و برادرم بسیار دشوار بود. دسفرال تنها در تهران توزیع می شد و برای تهیه آن باید یکی از اقوام اقدام می نمود.

تعداد رو به افزایش مبتلایان به تالاسمی می توانست جامعه را با معضلی اساسی مواجه نماید، هرچه انجمن تازه تاسیس تالاسمی و دلسوزان فریاد می زدند گوش

شنوایی نبود. دولت آیت اله هاشمی فرصتی شد برای کشیدن ترمز قطار سرکش تولد بیمار تالاسمی. طرح پیشگیری از تالاسمی در بدو امر با غربالگری اجباری زوجین

ناقل شروع شد. پس از مدتی این طرح به بن بست مشکلات فرهنگی انصراف از ازدواج برخورد. باز هم روشنگری رئیس جمهور به فریاد رسید و فتوای شرعی برای توقف

باروری در کمتر از هجده هفته دریافت شد. روند توفیق طرح دنیا را متحیر کرد تا آنجا که ایران بعنوان الگوی جامع پیشگیری از بیماریهای مادرزادی در میان کشورهای در حال

توسعه و اسلامی شناخته شد. در درمان تالاسمی هم گام های مهمی برداشته شد. رایگان شدن درمان و گسترش امکانات به شهرستان ها از گام های مهم دولت بود. به

یاد دارم که در اواخر دولت سازندگی در تمام شهرستان های شمالی امکان تهیه دسفرال وجود داشت و دیگر نیازی به سفر به پایتخت نبود. پس از دولت سازندگی،

منتقدینی که روزگاری زیر سایه دولت سازندگی پر و بال گرفته بودند به این سیاست ها تاختند که هزینه کردن برای بیماران خاص را اقدامی سیاسی و هدر دادن سرمایه

دانستند. نقدهایی که با حقوق انسانی بیماران زاویه فراوان داشت موجب شد که راهبردهای جدید به طرح پیشگیری از تالاسمی افزوده نشود و درمان بیماران با چالش

“کیفیت غیر موثر” مواجه شود. اما آیت اله سیاست مدار اعتدال بود و منتقد را یارای از کوره به در بردنش نبود. سکوتش را به موقع شکست، آنجا که با اشاره به تفاوت

میان “سود و زیان” و “هزینه و فایده” پاسخ داد: “دولت در مقابل همه شهروندان مسئول است”.
دکتر محمود هادی پور دهشال

فروردین ۲۶, ۱۳۹۶

یادگاری که در این گنبد دوار بماند

وقتی نوجوانی بیش نبودم تهیه خون و دسفرال برای من و برادرم بسیار دشوار بود. دسفرال تنها در تهران توزیع می شد و برای تهیه آن […]