Jak poinformowało PTCA, w imieniu pacjentów dotkniętych ciężką postacią AZS zgłoszone zostały uwagi do projektu wykazu refundowanych leków, który został opublikowany 17 sierpnia. Organizacja postuluje m.in. zapewnienie refundowanego dostępu do terapii biologicznej.
„Nie ma słów, które mogą wyrazić nasze rozgoryczenie i rozczarowanie projektem wrześniowej listy leków refundowanych. […] chorzy pozbawieni dostępu do efektywnego leczenia skazywani są na kolejne miesiące życia w bólu i cierpieniu. Jedynym możliwym ratunkiem dla nich jest skuteczna terapia biologiczna, która mimo dużych oczekiwań środowisk pacjenckich i ekspertów wciąż pozostaje bez refundacji” – takie zarzuty znalazły się w piśmie skierowanym przez prezesa Polskiego Towarzystwa Chorób Atopowych Huberta Godziątkowskiego do Ministerstwa Zdrowia. PTCA postuluje poszerzenie wrześniowej listy refundacyjnej o terapię biologiczną lekiem dupilumab dla pacjentów z AZS.
Brak dostępu do skutecznych terapii dla polskich pacjentów
Jak zwracają uwagę przedstawiciele PTCA, dupilumab został uznany przez FDA za terapię przełomową w leczeniu ciężkich postaci AZS. Jest to obecnie jedyny zarejestrowany w Polsce lek biologiczny o wysokim profilu bezpieczeństwa. W 2020 r. terapia dupilumabem uzyskała rekomendację Agencji Oceny Technologii Medycznych i Taryfikacji.
Jak podkreślono w piśmie PTCA, nieuwzględnienie dupilumabu na najnowszej liście refundacyjnej oznacza, że pacjenci będą nadal pozbawieni możliwości efektywnego leczenia ciężkich postaci AZS. Według szacunków PTCA terapia dupilumabem jest niezbędna dla ok. 200-500 polskich pacjentów.
Potrzeby pacjentów z AZS niezaspokojone
Jak wynika z raportu „Sytuacja osób dorosłych chorujących na atopowe zapalenie skóry w Polsce”, który został przygotowany w 2020 r. dr Małgorzatę Gałązkę-Sobotkę (dyrektor IZWOZ) oraz mgr Dagmarę Samselską (prezes AMICUS Fundacji Łuszczycy i ŁZS) pod patronatem Unii Stowarzyszeń Chorych na Łuszczycę i AZS oraz konsultant wojewódzkiej ds. dermatologii i wenerologii dr hab. n. med. Ireny Waleckiej, w ostatnich latach wzrasta odsetek zachorowań na choroby atopowe. Skuteczność terapii zależy od wczesnego podjęcia leczenia oraz stałej kontroli objawów chorobowych i zapobiegania zaostrzeniom. Tymczasem, jak podkreślają eksperci, potrzeby pacjentów z AZS w zakresie opieki medycznej nadal pozostają niezaspokojone. Według raportu w 33,8% przypadków zastosowane leczenie AZS jest nieskuteczne. Problemem jest nie tylko brak refundacji, ale również brak skoordynowanej opieki medycznej i jasno określonej ścieżki postępowania, niska dostępność do świadczeń, niewystarczająca edukacja, brak wsparcia psychologicznego.
Źródło:
ptca.pl, zrozumiecazs.pl
U mnie AZS zdiagnozowano w wieku dziecięcym, dzisiaj mam 33 lata, i nadal objawy AZS. A od lekarzy moja mama i później ja słyszałam, że przejdzie to taki okres. No niestety nie chciało przejść. Odwróciłam się od medycyny akademickiej, poszłam swoją drogą trafiłam na lekarza z Poznania, który czyta choroby z tęczówki. Okazało się,że to nie AZS tylko zakażenie grzybiczne, od malej dziewczynki miałam problemy z układem pokarmowym, dużo leczono mnie antybiotykami. Pan doktor zapisał mi probiotyk i pokierował też do punktu ko nopiaf armacja na ratajczaka w Poznaniu. Z listą co mi pomoże. Była to vilcacora w kapsułkach i krem dla wrazliwej skory atopis. Wiecie,że po 3 tygodniach kuracji nie miałam ani jednej wysypki? Z kremem już się nie rozstaje mam wrażenie ,że super nawilza moja skórę, a moge go używać i na twarz i na całe ciało, w porównaniu do leków od dermatologa to kosztuje grosze. Czasami warto iść za swoim głosem, organim nam dobrze podpowiada.
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