Kua tūtohutia e NICE mō te wā tuatahi tētahi maimoatanga auaha hei āwhina i ngā pēpi, ngā tamariki me ngā taiohi e rongoatia ana ki te mate pukupuku kia kore e ngaro te rongo.
He rongoā kaha te Cisplatin hei rongoā i ngā momo mate pukupuku o ngā tamariki. I roto i te wā, ka taea e te cisplatin te kohikohi i roto i te taringa o roto, ka puta te mumura me te kino e mōhiotia ana ko te ototoxicity, koinei tētahi o ngā take o te ngaronga o te rongo.
E taunaki ana ngā tūtohutanga tauira whakamutunga i te whakamahinga o te anhydrous sodium thiosulfate, e mōhiotia ana ko Pedmarqsi, ā, i hangaia e Norgine, hei ārai i te ngaronga o te rongo i puta mai i te chemotherapy cisplatin i roto i ngā tamariki 1 marama ki te 17 tau te pakeke he pukupuku totoka kāore anō kia horapa ki ētahi atu wāhanga o te tinana.
Tata ki te 60% o ngā tamariki e rongoatia ana ki te cisplatin ka pāngia e te ngaronga o te rongo tuturu, me te 283 ngā kēhi hou o te ngaronga o te rongo ototoxic i kitea i roto i ngā tamariki kei raro iho i te 18 tau te pakeke i Ingarangi i waenga i te tau 2022 me te 2023.
Ko te rongoā, e hoatu ana hei werohanga e te nēhi, e te tākuta rānei, ka mahi mā te here ki te cisplatin kāore anō kia tangohia e ngā pūtau, ā, ka ārai i tana mahi, ā, ka ārai i te kino ki ngā pūtau taringa. Kāore te whakamahinga o te sodium thiosulfate anhydrous e pā ki te whai huatanga o te chemotherapy cisplatin.
E kiia ana i roto i te tau tuatahi o te taunakitanga mō te whakamahinga o te konutai thiosulfate anhydrous, tata ki te 60 miriona tamariki me ngā taiohi i Ingarangi ka āhei ki te whiwhi i te rongoā.
Ka pā kino rawa atu te ngaronga o te rongo nā te maimoatanga matepukupuku ki ngā tamariki me ō rātou whānau, nō reira e harikoa ana mātou ki te taunaki i tēnei kōwhiringa maimoatanga auaha.
Koinei te rongoā tuatahi kua whakamātauhia hei ārai me te whakaiti i ngā pānga o te ngaronga o te whakarongo, ā, ka tino pā ki te oranga o ngā tamariki me ngā taiohi.
I haere tonu a Helen: "Ko tā mātou taunakitanga mō tēnei maimoatanga auaha e whakaatu ana i te whakapau kaha a NICE ki te arotahi ki ngā mea tino nui: te whakarato wawe i te tiaki pai rawa atu ki ngā tūroro me te whakarite kia pai te utu mō te kaipupuri takoha."
I whakaatuhia e ngā raraunga mai i ngā whakamātautau haumanu e rua, tata ki te haurua te tere o te ngaronga o te rongo i roto i ngā tamariki i whiwhi i te rongoā cisplatin. I kitea i roto i tētahi whakamātautau haumanu, ko ngā tamariki i whiwhi i te rongoā cisplatin i muri mai i te rongoā anhydrous sodium thiosulfate he 32.7% te tere o te ngaronga o te rongo, ki te whakaritea ki te 63% te tere o te ngaronga o te rongo i roto i ngā tamariki i whiwhi i te rongoā cisplatin anake.
I tētahi atu rangahau, 56.4% o ngā tamariki i whiwhi cisplatin anake i pāngia e te ngaronga o te rongo, ki te whakaritea ki te 28.6% o ngā tamariki i whiwhi cisplatin, ā, i muri mai ko te anhydrous sodium thiosulfate.
I whakaatuhia hoki e ngā whakamātautau mēnā ka pāngia ngā tamariki e te ngaronga o te rongo, he iti ake te kino o te nuinga o te wā i roto i te hunga i whakamahi i te anhydrous sodium thiosulfate.
Kua kōrero ngā mātua ki tētahi komiti motuhake o NICE, mēnā ka puta te ngaronga o te rongo nā te rongoā cisplatin, ka pā pea ki te whanaketanga o te kōrero me te reo, tae atu ki te mahi i te kura me te kāinga.
He harikoa mātou ki te kī atu ka whakamahia tēnei rongoā hou ki ngā tūroro taitamariki e rongoatia ana ki te mate pukupuku hei ārai i te ngaronga o te rongo hei pānga taha o te chemotherapy cisplatin.
I haere tonu a Ralph: "Kei te tumanako mātou ki te kite i tēnei rongoā i roto i ngā hōhipera puta noa i te motu, ā, ko te tumanako ka whai wāhi wawe ngā tamariki katoa e whai hua ana i tēnei rongoā ki tēnei maimoatanga whakaora ora. E mihi ana mātou ki ō mātou kaitautoko mō tā rātou takoha, ā, nā tēnei i taea ai e RNID te whakarato ki a NICE ngā whakaaro me ngā taunakitanga nui hei āwhina i te horapa whānui o tēnei rongoā puta noa i te UK. Koinei te wā tuatahi kua whakawhanakehia he rongoā hei ārai i te ngaronga o te rongo, ā, e taunakihia ana kia whakamahia i runga i te NHS. He tohu nui tēnei ka hoatu ki te hunga e haumi ana ki roto, e whakawhanake ana hoki i ngā maimoatanga mō te ngaronga o te rongo te whakapono ka taea e rātou te kawe angitu i tētahi rongoā ki te mākete."
Ka wātea te maimoatanga i runga i te NHS i Ingarangi i roto i ngā marama e toru i muri i te whakaputanga o te aratohu NICE whakamutunga.
Kua uru te kamupene ki tētahi whakaaetanga arumoni muna hei tuku i te konutai thiosulfate anhydrous ki te Ratonga Hauora ā-Motu i tētahi utu iti.