The Cystic Fibrosis community is part of the 100k people that submitted a petition to parliament to increase Pharmac funding. We are hopeful that the new (but hugely expensive) drug Trikafta - the best treatment for CF that's ever been available and literally saves lives - will be funded.
Obviously, this budget has been hugely disappointing for us. To add insult to injury, Andrew Little MP responded to comments that people will die due to this lack of funding by saying, "I don't buy into extremists rhetoric ". This has made our blood boil! Our illnesses might be extreme but our views are not. We simply see access to life-saving treatments and medicines as a hope for our kids future. It is both an offensive and hurtful comment and a very low blow to those that have been campaigning so hard on behalf of our community.
The Health Minister owes us an apology for this flippant and hurtful comment. I can tell you from my personal circle that people are absolutely disgusted that he would say this to people already in so much pain and some that are currently fighting for their lives.
My son was diagnosed with CF at six months and is now almost two. At the beginning of this year, I launched this podcast to create a space dedicated to helping NZ families by sharing stories and building awareness. The reaction to our podcast has been amazing so I simply can't stand by and allow such hurtful comments to go unchecked. We need to have each other's backs and WTCF! is now very much part of the resources Kiwis use when they receive that life-changing and devasting diagnosis for their child. Is it too much to ask to be treated with respect when we challenge what is a life or death budget decision within our community?
Emily Writes also wrote a very emotive post on Facebook referring to his comment as her son lives with T1 diabetes and would have a much-improved quality of life with access to a continuous glucose monitor. You can read her post here.
Feel free to share this and make the government see that Andrew Little's dismissive and poor choice of words was really shameful from a Health Minister.
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