Pharmac changes urgently needed
Christmas came early for a number of longsuffering patients. Pharmac’s advent calendar was opened with the bungled announcement that Pharmac was consulting on the funding of Trikafta for cystic fibrosis patients in record time, after the application sat with Pharmac for 11⁄2 years.
That was followed by news that New Zealand would be the 66th country to fund Spinraza for spinal muscular atrophy, the 60th country to fund Keytruda for those with lung cancer, and the 62nd country to fund Stelara for Crohn’s and colitis.
The average time it has taken Pharmac to fund these three medicines that treat thousands has been more than five years. EpiPens, after more than 25 years, are also going to be funded for those at risk from anaphylactic shock.
Each of those medicines was subject of a petition to Parliament and a highprofile campaign. It was a parade of patient horror stories that showcased what happens when we don’t have a wellfunctioning and funded drug procurement agency.
Such stories can be read at The Medicine Gap, an initiative that shares heart-breaking tales of patients who cannot access the medicines they need. Campaigns have included taking a case to the Human Rights Commission, speaking out at the United Nations, and having Pub Charity fill the Pharmac funding void.
Patient Voice Aotearoa is proud to stand alongside these advocates, as we continue to push for Pharmac to be reformed and to be given an appropriate budget so patients don’t have to resort to Givealittle, or shift overseas to get what is funded in the rest of the developed world.
Since we started five years ago, three-quarters of a million patients now receive medicines not previously available.
Such efforts highlight everything that is wrong with Pharmac and the way it is funded by the Government.
Since 2013, some 2800 medicines have been listed in Australia. That’s almost one a day. For New Zealand, we have funded a trifling 350 medicines for the same period. And yet in Australia there is very little fanfare accompanying medicine funding announcements, unlike Pharmac boasting it is funding a drug it considers ‘‘new’’.
Why? Because in Australia, their governments see the public funding of medicines as a right, not a luxury.
Over six months have passed since the Pharmac Review was released and the Minister of Health uttered the words, ‘‘The days of the independent republic of Pharmac are over’’. Pharmac’s final response to the review is yet to be released, as is the Ministry of Health’s reaction, which is responsible for answering many of the questions the review had.
All of this uncertainty and lack of transparency leaves patients wondering what’s changed. Pharmac’s arrogant and out-of-touch culture is still there for everyone to see, resulting in the Minister being left red-faced and having to provide media advice to the Crown entity he is responsible for, on how to make public health announcements. As well the minister overturned, in the lead-up to Christmas, the agency openly considering depriving children of cancer medicines.
Pharmac’s perverse culture aside, patients want to know what each political party is prepared to do with Pharmac as the election draws closer. Will Pharmac come under Te Whatu Ora, rather than continue to be a law unto themselves?
Will they heed the advice of the review and amend Pharmac’s statutory objectives? Will they instruct Pharmac to follow Treasury’s wellbeing framework? Will funding decisions have a timeframe that Pharmac will be held accountable for?
The biggest question is how much money are they prepared to give Pharmac? It should be obvious to all that giving Pharmac more budget results in a steady stream of good news’ stories.
It should also be clear that unless Pharmac is funded properly, its wish list of over 70 medicines will continue to grow with no plan as to how it might fund the other 280 medicines grinding their way through Pharmac’s notoriously slow process.
Even if Pharmac was able to reach the dizzying heights of putting a dent in trying to be average in the OECD by funding all 350 medicines that sit with the agency, we are still miles off funding every medicine in the world.
We should not have to wait another five years or so for a government to better fund Pharmac so that patients can access what are seen in other countries as a valued human right. That is, the right to life.
The biggest question is how much money are politicians prepared to give Pharmac?