What can families like ours hope for in the budget?
Should we have hope?
In the 2021 Budget there was little in the way of support for disabled children. Will anything change this year?
I have been invited to attend the Budget reading by a group of other advocates and activists who are hoping to see an increase in support for medically fragile and disabled people. We are a mix of people who care deeply about these issues - some of us are new to the cause, others have been fighting for what feels like forever.
Those of us with Type One kids are desperately hoping CGMs will be funded. Those with Spinal Muscular Atrophy (SMA) need Spinraza to be funded. Those with Cystic Fibrosis need Trikafta to be funded. Those with Crohn's and Colitis need Stelara to be funded. Those with Ovarian Cancer need Caelyx to be funded. Those with Breast Cancer need Abraxane to be funded. Those with Brain Cancer need Avastin to be funded. Those with Myeloma need Lenalidomide to be funded. Those with Gastrointestinal Stromal Tumours or GIST Cancer need Qinlock to be funded. Those with Bowel Cancer need Erbitux funded. All of us will be watching The Budget tomorrow hoping, hoping, hoping that the Pharmac Medicines Budget will be increased to pay for these medicines.
My son has spoken at the Health Select Committee calling for funding for continuous glucose monitors for diabetics. He has been invited to attend the Budget reading but I am unsure as to whether he should go.
Last year’s budget felt like it left disabled and immune compromised people behind.
A $200m increase over four years for Pharmac to pay for medicines and other health treatments is tiny and completely inadequate. For comparison, $306 million was given to “safeguard the future of Scott Base”.
Around 3.77 million New Zealanders receive funded medicines.
The human toll of not adequately funding Pharmac is catastrophic. There are 128 prioritised modern medicines on the Pharmac Options for Investment List right now. That’s the list of drugs Pharmac says they want to fund if they have the budget. It includes continuous glucose monitors, Spinraza, Stelara and Erbitux. Pharmac estimates the cost to clear that list would be over $500 million dollars annually.
There are another 280 medicines still being slowly assessed by Pharmac, Qinlock for GIST Cancer is one of them.
At least $400 million this year is needed to fund those medicines to save lives. That’s what Pharmac says but advocate Malcolm Mulholland (Ngāti Kahungunu) says Pharmac and politicians are notorious for quoting the list price for a medicine as being the price Pharmac would pay to purchase a medicine.
“Often they will quote the American list price, which is the most you would ever pay anywhere in the world,” he says.
Through Pharmac's rebate scheme, negotiations begin with pharmaceutical companies at a 50% discount, Mulholland says, and they are then negotiating down from there.
“So let's say for argument's sake, a drug costs $5000. Pharmac would begin negotiations at $2500 and work their way down from there. Pharmac's OFI list is being quoted at the top list price of $500 million. We know then that they will most likely need something like $250 to $300 million annually to clear that list. The reason I haven't said $250m is due to Trikafta having been recently added”.
The greatest hope we can have for The Budget is that Pharmac receives an annual budget increase of $300 million. And this should not include the cost of Covid 19 vaccines and medications.
There are still another 280 medicines that could be added to Pharmac's prioritised list.
If Pharmac's budget was doubled immediately, with a view to triple it - imagine the good that could be done? The lives saved? If Pharmac's budget was tripled to $3 billion, this would be in keeping per capita with what Australia's equivalent of Pharmac, PBS, receives.
And then maybe, our families wouldn’t be at the mercy of an organisation that has a drug-buying strategy that disadvantages Māori, Pasifika, disabled people and those with rare disorders.
The independent report on Pharmac that highlighted this was damning. It said Pharmac is underperforming in helping to remove inequitable health outcomes, Te Tiriti o Waitangi principles are largely unseen in decision-making processes, and there was excessive focus on containing costs.
Concerns were raised that the cost-saving model “may not be the right one to meet future health needs”.
Those of us with medically fragile children desperate for medicines and tech that Pharmac won’t fund already know this.
The report also said that engagement with consumers and patient advocacy groups needs to be more meaningful.
This is where I worry about my son’s exposure to red tape bullshit at such a young age. He is passionate about the fact that he knows other kids can’t get a Continuous Glucose Monitor like he can. He knows how lucky he is to have a community that supports him while others don’t have that, through no fault of their own or their parents. There is nothing more heartbreaking than being a parent who can’t afford to keep their child well.
I want to nurture his advocate heart but not let him be beaten down by seeing successive governments not prioritising the care and safety of disabled people and people with high health needs. At nine, I don’t want him to see so much ableism on display. Especially when this pandemic has already highlighted to him that for many - having a comorbidity like diabetes means you’re less than and not worth of protection.
At the last budget, benefit increases for adult disabled people equated to $20 before tax, per week. This increase did not bring benefits up to levels recommended by the Welfare Expert Advisory Group in 2019. That happened last month on 1 April.
There was no increase to the Disability Allowance nor the Child Disability Allowance*.
This is despite the fact that disabled children are more likely than non-disabled children to be in low income households. One in five disabled children lived in material hardship (20.4 percent), which was more than double the rate of non-disabled children who lived in material hardship (10.1 percent).
If we have to pay for medicines and services for our tamariki, why is the benefit so low? If they want to keep the benefit low - how can they expect low income or even middle income whānau to pay for every medicine and service our child needs?
Should we be hopeful? Jacinda Ardern once said: "If you ask me why I’m in politics, my answer will be simple: children."
Our disabled and medically fragile tamariki deserve the chance to live. To not just survive but to thrive. To not have to battle poverty as well as their illnesses.
We don’t have a chance in Hell of getting any help if we have a National government, the time is now - please. You had a mandate when you were voted in and you said you’re determined to improve the lives of children in Aotearoa.
Now is your chance. Can we hope you will take it?
*On 1 April 2022, the allowance increased by $3 per week due to the Annual General Adjustment. This cannot and should not be considered a real increase. In the UK, disability allowances are paid at roughly three times the rate in Aotearoa. The Child Action Poverty Group says disability allowances must be trebled.
This post has been edited for clarity - I previously did a complicated breakdown of the Pharmac lists and it didn’t work well, so I’m linked back to Pharmac to make it clearer.
There will be a lot more money for disability tomorrow but it will probably most be for getting the new Ministry for Disabled People running, and rolling out better disability support services. There was a huge shortfall in disability support funding inherited from the last government which had to be paid for in the last couple of Budgets just to fund at a basic level. There is also a hint that DHB debt (a huge amount) will be written off in order to set up the new health system, and there will be funding for increases for health workers' pay, primary care, and mental health support. All this Budget funding will help disabled people. There will likely also be an increase in Pharmac funding, as there has been for the last 4 years, but, unfortunately, I doubt it will be as much as many people would like.
Pharmac so badly needs an increase in funding. For all of those drugs and items, and so many more. My work involves seeing a lot of people with cancer, and for so many there are medicines that would prolong their lives, if not save them, and the cost is tens of thousands of dollars. Out of reach of the majority!