CF sufferer puts hope in Labour victory
A $20m boost would help people with rare diseases, writes Kate Broughton.
making buildings cheaper. You have to look at everything in the chain, and chip away at every part of that.
‘‘Where Jacob’s coming from – in self-building his own tiny house – it’s about taking action and actually being pro-active.’’
Otto thinks E-WE is achievable and wouldn’t even necessarily require building consents. If a building is 10 square metres or less and doesn’t contain cooking or sanitary facilities – you’re pretty much free to plonk it where you please, bar a few minor technicalities. ‘‘There’s nothing fundamentally risky about this.’’
In New Zealand, the demand for social housing is as strong as ever. Government figures show that as of June 30, more than 5000 households were on the waiting list – up 38 per cent on the same time last year.
The band aids are being slapped on thick and fast, with about $140,000 a day being shelled out on emergency accommodation such as motels.
Adams agrees that part of the solution is to reduce the size of the houses and is ‘‘intrigued’’ by Matekino’s plan.
Labour’s housing spokesman. Phil Twyford, was also interested. ‘‘Innovative and clever ideas like this one are things that we should be actively considering in terms of as a possible response to homelessness.’’
For now, Matekino’s commuting every fortnight to Auckland to work with Tall Wood, while continuing his studies in Rotorua.
And as the concept grows, so do his aspirations with his sights set on a masters degree.
To those who question whether tiny houses are the answer to homelessness, Matekino says it’s better than living in a car or under a bridge.
And he tells those in that situation not to give up. ‘‘There are people out there like us who are working towards giving you a home.’’ THE parents of a 12-year-old boy who suffers from cystic fibrosis say a Labour victory is their only hope of getting life-changing drugs for their son.
Wayne and Kim Davidson discovered their son Tylah was born with the life-threatening genetic disease, and have searched for the drugs that could save his life ever since.
A few years ago they discovered Tylah had the specific gene mutation that a drug called Kalydeco targets, which Wayne Davidson described as akin to winning Lotto.
But Pharmac declined a funding application for Kalydeco from supplier Vertex in 2015 ‘‘based on the high cost and poor cost-effectiveness’’, director of operations Sarah Fitt said.
The Davidsons considered going to Australia where the drug is publicly funded until they realised they would not be eligible as noncitizens.
Now they hope a Labour Government will deliver on a pledge to set up a $20m fund for rare diseases over four years.
Apart from a pilot for a contestable rare diseases fund in 2015 by Pharmac, the National Government had not supported separate resourcing model for medicines like Kalydeco.
National’s Jonathan Coleman said: ‘‘Pharmac needs certainty about the benefits these drugs provide, the likelihood of delivering better health gains than other treatments, and that it’s affordable.’’
The Davidsons say this leaves families like theirs with no hope.
‘‘This is our child, and there is a drug available that effectively cures him... and doubles his life span and it’s like... the elusive wonder drug, it is always going to be out of our reach because of Pharmac’s stance,’’ Kim Davidson said.
New Zealand Organisation for Rare Disorders (NORD) Collette Bromhead said the pilot fund was a ‘‘good start’’ but the decisions on funding were still made on value for money, rather than value for patients.
For now, the Davidsons continue with constant vigilance to protect their son from the ravages of the disease. Daily use of a nebuliser, morning and night physiotherapy and religiously taking medications with food are critical to manage the build up of thick mucous in the lungs and the lack of enzymes in his pancreas.
‘‘The scariest thing for us is his health will decline, not get better,’’ Kim Davidson said.
An estimated 36 people would benefit from Kalydeco in New Zealand, which costs more than $382,000 per year.
A recent test showed Tylah’s lung function had dropped to 60 per cent and increasing fatigue made it hard for him to keep up with school work and sports.
Cystic Fibrosis New Zealand (CFNZ) which represents patients like Tylah advised the Davidsons early this year they would be taking a step back from lobbying for Kalydeco.
Chief executive Jane Bollard said as a small charity, CFNZ lacked the ‘‘resources and information required to carry out a full lobbying campaign, at this point in time.’’
The organisation fully supported public funding of Kalydeco but had decided to spend time gathering information and support from doctors to strengthen future lobbying work, Bollard said.
The change was ‘‘gutting’’ Kim Davidson said. She said the onus was on the Government to ensure access for its citizens.
This is our child, and there is a drug available that effectively cures him... and it is always going to be out of our reach because of Pharmac’s stance.’ KIM DAVIDSON