He kaupapa hōu e kīa nei,"Ko tāku noa mō te Kirihimete, ko te ora" i whakamānutia i te rā nei e ngā tūroro me ngā kaitautoko o He Reo Tūroro o Aotearoa, he rōpū āki i te kāwanatanga ki te whakarahi ake i ngā pūtea a Pharmac ki te hoko rongoā, taputapu hauora hoki.
Hei tā rātau, e tino raru nei te tahua rongoā ki Aotearoa, ka mutu, me matua panoni tērā āhutanga kia piki ake ai te ora ki te hunga e tino māuiui nei.
He hui i tū ki Penrose i te rā nei, he whakaputa kōrero te mahi a ngā tini tūroro kai rongoā ia rā, ia rā kia ora tonu ai rātou.
Ko Stella Bewsick tētahi o ngā tūroro i tae atu i te rā nei, nō tōna ekenga ki te tekau mā waru marama te pakeke, kua pākia e te mate ua wairuhi.
“The lungs are the life-limiting factor but currently she can use her arms a little bit but she will lose that ability and without the drug, she will lose all that movement. She will lose the ability to chew and swallow which will mean she needs a feeding tube inserted into her stomach,” te whakamārama a tōna māma, a Emma Beswick.
Kia mārama ai ki te nui o ngā utu, i whakarārangihia e te pāpā o Stella, e Hayden, ngā rongoā katoa e hiahiatia ana hei whakamauru i ngā āhuatanga o tōna mate, ā i eke ki tua o te kotahi miriona tāra.
“My husband and I felt like driving off a cliff but we were told that your daughter is unlikely to make it out of childhood, will never walk, will never crawl, will just get weaker and weaker until she dies.
“But then when we found out there's a treatment becoming available, that could possibly help, that kept us alive, and kept us sane,” te kōrero a Emma Beswick.
I tēnei wā, kotahi piriona tāra te tahua pūtea mō ngā rongoā, heoi, e ai ki a Malcolm Mulholland (Ngāti Kahungunu, Rangitāne), heamana o He Reo Tūroro, me pūrua ake taua pūtea.
"That sounds like a lot of money, it should be a lot of money because this is the medicine for the entire country."
"If we want to be on the same level as Australia of England per capita, we have to double that. That's the rationale behind us wanting to increase the Pharmac budget."
Ā te Poutūterangi, ka haria te petihana nei ki te whare paramata.