This is a function of the growing arse-covering industrial complex that now crawls all over government. Optics are everything. We live in a captured state. Danyl is writing about this a lot and I see it most places I look now. I agree with Little on reclaiming the republic, but this government and governments of both flavours have enabled the capturing of the arms of government by unelected officials.
The biggest unelected drivers of policy are in Treasury. Pharmac is a pure product of the 30% debt/gdp limit and the unlegislated but very real tax revenue/gdp limit of 30%, which Grant Robertson again talked about on Sunday. The 30% limits are framed as some sort of debt market laws of nature, when they are actually arbitrary and political choices aimed at keeping a hard sinking lid in the size of Government.
“What we're looking towards is returning our expenditure as a percentage of GDP back down to around the 30% level - the level that it's traditionally been at," he said.
A choice for 30 years, started under Ruth Richardson and carried on by every Finance Minister since, including Cullen And Robertson.
Essentially, it is a set of choices made behind closed doors and endorsed by both parties. It is choice to keep government debt low to keep interest rates low, which in turn inflate untaxed land values.
Politicians and voters are choosing low interest rates and high land values over the health of people without the resources to buy it privately.
A captured state in service of its managers and landowners.
Thank you for the context Bernard I so appreciate it. I feel like we are in this place where “independent from the government of the day” or whatever means “I’m accountable to nobody” and that really worries me. It’s a frightening place to be.
Kia ora Emily great to see you on this topic, I’m sorry the announcement went like that . I’m a patient advocate and consumer advisor to Pharmac, I only got notice today too. It is a really big deal and great for kids. I’ll pass on your feedback because truly there are not villains at Pharmac doing bad things. They protect us from the very worst of commercial conduct, only just, it’s a terribly fine line and people are doing their best in near impossible circumstances. But I’m always looking for constructive feedback and this is useful so nga mihi
Arohanui Hazel thank you. There’s a big problem with trust and sadly I don’t think this helps. I’m an eternal optimist though and I look forward to change ❤️
Ooh. I know so little about this. I was delighted with the news on Sunday that CF sufferers and their families would have access to this drug. That is good news, but what you reveal here is quite another matter.
I am. Definitely next week and it was going to be this week too but I felt this would be an itchy scratch all week if I didn’t write it. I promise I’m now going to bed! Promise!
What the actual fuck! How can they even do that? Not to mention what sounds like a PR stunt news announcement. Shame! a total slap in the face to those who’ve advocated and fought for this for so long. Had no idea. Thanks for finding it within you to write this. Bloody hell.
Thanks Nadine I felt quite sick about it all. I was dreading publishing this but it felt like something I needed to do. It’s so important that crown entities act transparently and with integrity otherwise trust is lost. It really worries me.
I’m really glad you did - and with the links to the Rachel Smalley, which I followed as well. I wouldn’t have “seen” the stunt or appreciated all that wasn’t being said if you hadn’t shared this context. It’s exhausting and yes, frightening. Trust has been hugely eroded. Should Fitt have to resign? I just can’t even believe that they can attempt to control the media so blatantly. Looking forward to hearing what Andrew Little has to say about it. Take a rest for tonight e hoa u did a good but hard thing x
Sorry, I have no respect for Rachel "heifers and lardos" Smalley. She is at heart a gotcha hack with few professional scruples and I'm unsurprised to hear she's landed the latest bottom-feeder outlet that hired her in trouble.
Whatever influence she's had for worthy causes is compromised by her own lack of ethics.
I think it’s fair to say she and I are on the opposite ends of the political spectrum and share few values. But we can’t just say journalists we don’t personally like should not have access. I’m loathed by many. Many would call me a hack. So do I lose access? If you remove personal feelings about her as a journalist, and just look at what has happened here… In this instance she reported what she knew to be true, what was true, and is being punished for it by a crown entity that lied to her. That’s really worrying. As much as it feels like swallowing sick, it’s important that we put aside how we feel about individuals here and just focus on what our values are.
It is a compelling perspective. But, possible harm done is more complex.
What if Smalley's early release had cost NZ the deal and families were left helpless? Children breathless? I know it seems far fetched. But a precedent exists. In that scenario, we would never learn exactly why, and Pharmac would wear the blame for a failed deal.
My background: was in first year of law school (at 52) when told my time had run out, treat or die from hep C. It was unfunded. What I needed was US250k, asap. I approached Pharmac on when, if. There were calls between then, late 2015 and 2017-18 for it to be funded. It would have cost the whole medication budget for some years, at prices and levels then. I didn't join the call for it to be funded until the price came down- the problem was and is not Pharmac, it is outside NZ.
I got lucky, shortly after my news I found an international buyers club, bought my own, made some noise, supported 1000's worldwide to do the same. The price came down drastically, and now it has been fully funded since 2019. And it is a cure, the only virus cure ever, so I'm fixed.
During my time of hep advocacy, I was also fortunate to meet (globally) very brave doctors, prepared to safely stretch conventions to get patients treated, save tens of thousands of lives like mine, and to challenge medication pricing.
One such is the renowned Prof Andrew Hill of London/Liverpool. He was motivated to act and help CF families when the company came to negotiate with the NHS, left abruptly which necessitated the ~500 regimens they had with them to be incinerated rather than distributed. https://www.bbc.com/news/health-48357762
Generics were sourced for a handful of UK children, soon after a deal was struck with the NHS.
The NHS has huge bargaining power as a purchaser, compared to NZ. There was some problem during their final negotiations, those 500 regimens were meant to mark the deal., I guess a managed announcement, like went wrong here. Having done law I now know a boring amount about all of it, the pricing, the mechanisms, the contractual difficulties. It's like getting a job or buying or renting a house- it is not done until the ink is dry. Coming close doesn't count. We are a tiny market to these big companies.
I have a particular interest in NZBORA. I'm with you on that, admire your even handedness despite the temptation. But what about possible serious drastic outcomes, in highly sensitive deals for eye watering sums.
I want, aim, try to help Pharmac do better. I hear them asking us for advice on how. I also want to report from up close because it's different. Everyone is human with anxieties about getting it right. The deal is the most important thing they need to do well in this, because children's lives; but (when you have had a break!) , hit me up, let's compile any advice you'd like me to share directly.
I appreciate where you’re coming from Hazel I do. But the deal was done. It was a fact. Patients had been told, TV spots had been filled, interviews filmed. Pharmac has a hard job there’s no doubt about that at all - but they don’t just have an obligation to be transparent with the public where they can - it’s a legal requirement. They must be accountable just like every other government agency. We know we can’t ask if they’re in negotiations, what the rates they’re looking at are - journalists know very well about commercial sensitivity. We deal with it every day. But - we really cannot continue to ignore that Pharmac spends the least amount of money per capita on medicines than anyone in the OECD. We have the worst access. That’s a fact. Report after report has said they’re too focused on spending money and not focussed on saving lives. The interim report that came out in December 2021 was bad enough saying Pharmac has "a fortress mentality that permits little transparency." The following report was even worse saying they disadvantage Māori, Pasifika, disabled people and those with rare disorders. Health inequities between Māori and non-Māori adults cost $863 million a year. That’s just adults. That’s in breach of human rights and the Te Tiriti O Waitangi. I applaud you I really do for finding a way to fund your life saving drug and save other lives. But we cannot expect individuals who are sick and dying to negotiate globally to fund their own drugs. We cannot be that kind of country. It’s not right or fair. We had people at Pharmac say about Trikafta “it will use the whole budget!” But we said - it doesn’t matter. We all fight side by side and we fight together. Pharmac has long been told they have to listen to patients - a direct result of independent reports - I truly hope they do that because to me - media managing a public health announcement and acting like they gifted a drug and deserve thanks and applause and bouquets for that - when it’s their job and tireless campaigning was the actual driver - that worries me. It speaks to the fortress mentality and the optics are terrible.
This is a function of the growing arse-covering industrial complex that now crawls all over government. Optics are everything. We live in a captured state. Danyl is writing about this a lot and I see it most places I look now. I agree with Little on reclaiming the republic, but this government and governments of both flavours have enabled the capturing of the arms of government by unelected officials.
The biggest unelected drivers of policy are in Treasury. Pharmac is a pure product of the 30% debt/gdp limit and the unlegislated but very real tax revenue/gdp limit of 30%, which Grant Robertson again talked about on Sunday. The 30% limits are framed as some sort of debt market laws of nature, when they are actually arbitrary and political choices aimed at keeping a hard sinking lid in the size of Government.
“What we're looking towards is returning our expenditure as a percentage of GDP back down to around the 30% level - the level that it's traditionally been at," he said.
A choice for 30 years, started under Ruth Richardson and carried on by every Finance Minister since, including Cullen And Robertson.
Essentially, it is a set of choices made behind closed doors and endorsed by both parties. It is choice to keep government debt low to keep interest rates low, which in turn inflate untaxed land values.
Politicians and voters are choosing low interest rates and high land values over the health of people without the resources to buy it privately.
A captured state in service of its managers and landowners.
Thank you for the context Bernard I so appreciate it. I feel like we are in this place where “independent from the government of the day” or whatever means “I’m accountable to nobody” and that really worries me. It’s a frightening place to be.
Kia ora Emily great to see you on this topic, I’m sorry the announcement went like that . I’m a patient advocate and consumer advisor to Pharmac, I only got notice today too. It is a really big deal and great for kids. I’ll pass on your feedback because truly there are not villains at Pharmac doing bad things. They protect us from the very worst of commercial conduct, only just, it’s a terribly fine line and people are doing their best in near impossible circumstances. But I’m always looking for constructive feedback and this is useful so nga mihi
Arohanui Hazel thank you. There’s a big problem with trust and sadly I don’t think this helps. I’m an eternal optimist though and I look forward to change ❤️
Ooh. I know so little about this. I was delighted with the news on Sunday that CF sufferers and their families would have access to this drug. That is good news, but what you reveal here is quite another matter.
I thought you were taking a break?
I am. Definitely next week and it was going to be this week too but I felt this would be an itchy scratch all week if I didn’t write it. I promise I’m now going to bed! Promise!
I understand. It is a major and it does need dissection. I appreciate what you have said. Let the two weeks start again.
Arohanui Bonnie thank you ❤️
What the actual fuck! How can they even do that? Not to mention what sounds like a PR stunt news announcement. Shame! a total slap in the face to those who’ve advocated and fought for this for so long. Had no idea. Thanks for finding it within you to write this. Bloody hell.
Thanks Nadine I felt quite sick about it all. I was dreading publishing this but it felt like something I needed to do. It’s so important that crown entities act transparently and with integrity otherwise trust is lost. It really worries me.
I’m really glad you did - and with the links to the Rachel Smalley, which I followed as well. I wouldn’t have “seen” the stunt or appreciated all that wasn’t being said if you hadn’t shared this context. It’s exhausting and yes, frightening. Trust has been hugely eroded. Should Fitt have to resign? I just can’t even believe that they can attempt to control the media so blatantly. Looking forward to hearing what Andrew Little has to say about it. Take a rest for tonight e hoa u did a good but hard thing x
Thank you x that means a lot.
Sorry, I have no respect for Rachel "heifers and lardos" Smalley. She is at heart a gotcha hack with few professional scruples and I'm unsurprised to hear she's landed the latest bottom-feeder outlet that hired her in trouble.
Whatever influence she's had for worthy causes is compromised by her own lack of ethics.
I think it’s fair to say she and I are on the opposite ends of the political spectrum and share few values. But we can’t just say journalists we don’t personally like should not have access. I’m loathed by many. Many would call me a hack. So do I lose access? If you remove personal feelings about her as a journalist, and just look at what has happened here… In this instance she reported what she knew to be true, what was true, and is being punished for it by a crown entity that lied to her. That’s really worrying. As much as it feels like swallowing sick, it’s important that we put aside how we feel about individuals here and just focus on what our values are.
It is a compelling perspective. But, possible harm done is more complex.
What if Smalley's early release had cost NZ the deal and families were left helpless? Children breathless? I know it seems far fetched. But a precedent exists. In that scenario, we would never learn exactly why, and Pharmac would wear the blame for a failed deal.
My background: was in first year of law school (at 52) when told my time had run out, treat or die from hep C. It was unfunded. What I needed was US250k, asap. I approached Pharmac on when, if. There were calls between then, late 2015 and 2017-18 for it to be funded. It would have cost the whole medication budget for some years, at prices and levels then. I didn't join the call for it to be funded until the price came down- the problem was and is not Pharmac, it is outside NZ.
I got lucky, shortly after my news I found an international buyers club, bought my own, made some noise, supported 1000's worldwide to do the same. The price came down drastically, and now it has been fully funded since 2019. And it is a cure, the only virus cure ever, so I'm fixed.
During my time of hep advocacy, I was also fortunate to meet (globally) very brave doctors, prepared to safely stretch conventions to get patients treated, save tens of thousands of lives like mine, and to challenge medication pricing.
One such is the renowned Prof Andrew Hill of London/Liverpool. He was motivated to act and help CF families when the company came to negotiate with the NHS, left abruptly which necessitated the ~500 regimens they had with them to be incinerated rather than distributed. https://www.bbc.com/news/health-48357762
Generics were sourced for a handful of UK children, soon after a deal was struck with the NHS.
The NHS has huge bargaining power as a purchaser, compared to NZ. There was some problem during their final negotiations, those 500 regimens were meant to mark the deal., I guess a managed announcement, like went wrong here. Having done law I now know a boring amount about all of it, the pricing, the mechanisms, the contractual difficulties. It's like getting a job or buying or renting a house- it is not done until the ink is dry. Coming close doesn't count. We are a tiny market to these big companies.
I have a particular interest in NZBORA. I'm with you on that, admire your even handedness despite the temptation. But what about possible serious drastic outcomes, in highly sensitive deals for eye watering sums.
I want, aim, try to help Pharmac do better. I hear them asking us for advice on how. I also want to report from up close because it's different. Everyone is human with anxieties about getting it right. The deal is the most important thing they need to do well in this, because children's lives; but (when you have had a break!) , hit me up, let's compile any advice you'd like me to share directly.
I appreciate where you’re coming from Hazel I do. But the deal was done. It was a fact. Patients had been told, TV spots had been filled, interviews filmed. Pharmac has a hard job there’s no doubt about that at all - but they don’t just have an obligation to be transparent with the public where they can - it’s a legal requirement. They must be accountable just like every other government agency. We know we can’t ask if they’re in negotiations, what the rates they’re looking at are - journalists know very well about commercial sensitivity. We deal with it every day. But - we really cannot continue to ignore that Pharmac spends the least amount of money per capita on medicines than anyone in the OECD. We have the worst access. That’s a fact. Report after report has said they’re too focused on spending money and not focussed on saving lives. The interim report that came out in December 2021 was bad enough saying Pharmac has "a fortress mentality that permits little transparency." The following report was even worse saying they disadvantage Māori, Pasifika, disabled people and those with rare disorders. Health inequities between Māori and non-Māori adults cost $863 million a year. That’s just adults. That’s in breach of human rights and the Te Tiriti O Waitangi. I applaud you I really do for finding a way to fund your life saving drug and save other lives. But we cannot expect individuals who are sick and dying to negotiate globally to fund their own drugs. We cannot be that kind of country. It’s not right or fair. We had people at Pharmac say about Trikafta “it will use the whole budget!” But we said - it doesn’t matter. We all fight side by side and we fight together. Pharmac has long been told they have to listen to patients - a direct result of independent reports - I truly hope they do that because to me - media managing a public health announcement and acting like they gifted a drug and deserve thanks and applause and bouquets for that - when it’s their job and tireless campaigning was the actual driver - that worries me. It speaks to the fortress mentality and the optics are terrible.
Agree to disagree 😊