They knew!
Epilepsy drug deaths: Medsafe told Pharmac it was ‘not desirable’ to switch brands
The medicines safety authority advised Pharmac it was “not desirable” for patients to switch brands of an anti-epilepsy drug now at the centre of a coronial inquest.
On Monday, Chief Coroner Deborah Marshall opened the second part of the inquiry into the deaths of six New Zealanders who died while taking Logem, a generic form of the anti-convulsant drug lamotrigine.
In 2019, a change in Pharmac funding resulted in 11,000 New Zealanders having their medication switched – a move which has seen seven deaths reported to the Centre for Adverse Reports Monitoring as possibly linked to the change.
On Tuesday, Chris James, the group manager for medicines regulator Medsafe, told the coroner the agency expressed concerns to Pharmac when the change was first proposed in 2018.
This bites personally because i know two people whose changed medicines caused enormous carnage in their lives.
THAT NO ONE AT PHARMAC THOUGHT CHANGING A MEDICINE SO VITAL TO THE WELL BEING OF PEOPLE WITH MENTAL HEALTH ISSUES WOULD BE A BIG DEAL HAS ME INCANDESCENT WITH RAGE!
…THIS is the real issues in NZ.
We think the masquerade of representative democracy puts us the people in control – it doesn’t! The Wellington Neoliberal Bureaucratic Elite stops transformative change and those running Pharmac have made a decision to buy a cheaper drug that has caused mayhem and damage in the lives of 11000 Kiwis.
How are they above accountability for the carnage they’ve caused in the lives of so many people?
Compensation to those impacted and the immediate sacking of any management involved in this decision alongside criminal prosecution for manslaughter is required.
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What the bloody hell have I been saying for the last 6 years Martyn .
I have been saying for 6 years Pharmac is a law unto itself and BLATANT UNDER FUNDING OF MEDICINES IS THE CAUSE.
Now will you people in this group start listening to Me and PATIENT VOICE AOTEAROA.
Our pharmac model of one supplier single contract supply and drag the funding out till the cows come home is no LONGER FIT FOR THE 21st CENTURY.
WAKE THE HELL UP PEOPLE AS FAR AS HEALTHCARE IS CONCERNED WE ARE 3rd world.
Read this ;
From Patient Voice Aotearoa supporter who has worked both sides of the medicines divide.
Dear PVA members and followers.
I love that this forum is a great theatre for discussion and I’ve noted with interest some of the dialogue relating to the review of Pharmac. I wanted to take a second to look a little more closely at the pharmaceutical industry. You see, in addition to patients, clinicians and other stakeholders who should have an avenue to address personal, practical, professional and procedure issues, my view is that it is imperative to have the pharmaceutical industry involved in any assessment of the efficacy of Pharmac.
I am no apologist for the industry.
Indeed at times in my career I have been an outspoken critic. I’ve been pretty clear on this site that I’ve viewed this issue from multiple perspectives: In the past, as a government official, I have defended Pharmac and criticised the pharmer industry. As a consultant I have advised the industry (my perspectives not always popular and sometimes confronting). As someone who now works pro bono for PVA and the very inspiring Malcolm Mulholland and Fiona Tolich, my goal is to see regulatory change which addresses the opaque, arbitrary, sometimes clinically unjustified, discriminatory, underfunded application of treatments in New Zealand.
One shouldn’t be picked to die or be debilitated when reasonable options for treatments, widely available in like countries and consistent with international best practice are dispensed to millions outside our borders. Especially while some while kiwis suffer needlessly and are told they should feel lucky to have the ‘world’s best system’ inflicting this outcome on them. My only motivation for engaging on this issue are some precious people I know/have known who have demonstrated to me that every life has dignity and deserves a fighting chance. Period.
My concern is that that part of Pharmac’s defence strategy has been to demonise an industry which like most sectors, has both good and bad aspects and good and bad actors. To read something along the lines of what Helen Clark’s husband Peter Davis (go-to media commentator on these issues) often writes, would leave one with the impression that a perfect and brave little Pharmac is fighting evil corporate beasts at every turn. So, let’s unpack some of these evil corporate beasts and their high priced drugs for a second.
In 2018, NZ’s GDP was $300 billion- more or less. Go us! In 2018, the pharm sector invested roughly NZ$115 billion into research and development activities. That’s over a third of our GDP (obviously). Drugs are made of molecules right? Yet only 1 molecule in every 5000- 10,000 manages to make it through the various processes to get regulatory approval as a drug. The thousands and thousands which don’t get anywhere, represent whole lifetimes of wasted research. It’s like flipping a coin and having it land and rest on its side.
[If you’ve ever done that – pretty please can you buy PVA a Lotto ticket because we could do with your luck?]
As a general benchmark, the cost of developing a new medicine and jumping through the hoops and hurdles to get it to market costs between NZ$1.9 billion and NZ$4.1 billion depending on the complexity. But that doesn’t end the process. Once a drug is registered and available, the researchers don’t pack up and leave.
A couple of years ago, in 2018 actually, companies spent NZD$13 billion on studies to monitor efficacy and safety of their products (these are called “phase IV” trials) and you’ve probably heard of them as kiwis scramble to get included. It all takes years unless special circumstances like COVID shift political will. Of course once a drug is in the market, dodging the various curveballs which are inevitably hurled by litigation lawyers (legitimately or simply because it’s how some people make a lot of money) is required. Then patents expire and the molecular recipe of the drug is freely available.
Depending on various political perspectives, it’s legitimate to ask whether pharmaceutical companies make too much profit. Or whether they should deal out more compassionate care. Or whether there should be more transparency about the consumer cost of a medicine comparative to the costs associated with its development. Certainly, there should also be much more international cooperation associated with reducing red tape, seeking global standards (instead of endlessly duplicating quality controls) and reducing other expenses which contribute to the development of drugs being So. Damn. Expensive.
We’ll only win this advocacy effort with the Government is we focus on constructive ways to improve the NZ system. I strongly believe that having a good representation of good pharmaceutical companies engaging with NZ is key. In the couple of decades I’ve been following these issues, we’ve lost many many companies from the market. There was just no point in trying. We lost one of the biggest generics this year.
We are facing scenarios where companies with skeleton representation in NZ are NOT even pitching drugs to the market because navigating the Pharmac system is so futile and expensive. Our market is so tiny that it is literally an accounting rounding error for many companies and I can understand why it’s easier to walk away. I don’t believe that’s good for anyone.
Anyway, I thought some of the figures might interest to the readers of this page.
Epilepsy is more a neurological issue than a mental health issue however I have known an epileptic person who suffered depression as well. Another cruel disease made worse by cruel drug companies peddling cheap crap. Medicinal cannabis works miracles for neurological and mental disorders. Trust me, I’ve seen it with my own eyes having cared for someone who suffered from Parkinson’s disease. The fact our referendum for cannabis law reform has failed to not only make access for recreational use easier but also medicinal use is extremely disappointing. But half the electorate don’t seem to care about us less fortunate folk suffering with neuro and psychological ailments. So long as covid stays away and the price of their house keeps going up all is well for them it may seem.
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