"And as much as this is an exciting journey about the way forward, I think it's really important that we talk about what the journey has been like as a patient, as a patient advocate and in the community that I serve," said advocate and patient Fiona Tolich who delivered an address to the 'Valuing Life - Medicines Access Summit' in Wellington yesterday.
Ms Tolich lives with Spinal Muscular Atrophy and relocated to Australia with her family in 2023 as a 'medical refugee' to gain access to treatment.
Ms Tolich said that while Pharmac took several years to fund SMA treatment, "other countries took just weeks or months."
"With the same evidence, we had children with feeding tubes inserted because they'd lost their ability to swallow. We had kids who had spinal lung surgery. We had children who were getting their first power chair because they failed them, and we had children who died. In Australia, remember that their application went in back in 2018, too. The kids got access to the treatment that same year. New Zealand kids had to wait until 2023."
"It didn't take long for my naivety about how things worked in New Zealand to be blown apart. I honestly lived in a bubble. I had no appreciation for how hard you had to fight to get access to what the rest of the world saw as a standard of care treatment. I had no background in medicine, politics, industry, or economics nor knew how to exercise my democratic rights. But I set about learning," she said.
"Now I know four families who have lost children to SMA since I started advocating in New Zealand. There are more than that, and some adults have lost their fight. Every family agrees. The thing about SMA is it's a progressive disease. Every day is potentially another loss, and without treatment, others will lose their fight."
Ms Tolich said she decided to join Patient Voice Aotearoa (PVA) after realising that many other patients were advocating for access to treatment.
"There was a common theme. We were behind the world for access to medicines for cancers, chronic conditions and disorders. How could I fight for one community while the whole community of New Zealanders was waiting for access? I couldn't. So, from there, I proudly became a founding trustee of PVA.
She continued, "A large part of that journey has, and this was so far outside my comfort zone, and I cannot tell you the number of sleepless nights I have endured with the fear of messing up, not getting my message across and not maximizing the opportunity because lives relied on it. And that was the only place where I felt my voice was heard. No patient should have to go public with their weakness, break down in front of the nation or expose themselves in such a way. But that was the only way to be heard, and my voice did not feel valued anywhere else."
"New Zealand's five-year survival rate for children with cancer leads the world because these children could access what they needed in a timely manner. With the rise of immunotherapies and biological treatments, there is hope for future generations. But in my bid to lift others to those incredible standards and to save the lives of children, I felt hung out to dry," said Ms Tolich, referring to Pharmac's decision to review the program under which clinicians can prescribe paediatric cancer patients based on clinical judgement.
"Imagine trying to save kids and have a review initiated in response. I have never felt like a target was on my back more than I did at that moment. The review has only just concluded, and it stays the same. But I stand by my opinion. Why would you not open this up to all children? There is gene therapy now for SMA, and it is no surprise that it's available in Australia but not here. Surely, we want our doctors to have the best options to treat their patients and our patients to have the best chance at life regardless of their condition. Don't they all deserve the chance at life?"
"It was important for me to share the full picture as we must never allow it to continue or to happen again. I'm a mother who gave up a very comfortable corporate gig to fight for the lives of others. It has always been about saving these babies and giving children a chance to grow up. It has come at a huge cost to me financially, emotionally and physically in the time that I fought for those living with SMA to get access. I have been accused of being in the pocket of big pharma publicly. An editor accused me of being planted in my electorate. I've been described as nauseating and as having an extremist rhetoric. Anyone who knows me knows that this is not who I am. I have come up against public backlash where the price of medicines is exaggerated publicly to get the public offside with patients, including when parents of a very sick child have been told that their child was not worth it."
"To have journalists state that every reasonable New Zealander understands why novel treatments can't be funded when we are talking about dying kids is barbaric. This is not right or fair, and I'm not alone. In 2018, a journalist publicly accused a group of women of taking funds from industry to make a trip to parliament to protest. They also claimed they had been given free treatment to launch their campaign. There was no truth, and many of these women were financially crippling themselves and simply wanting to stay alive. Even with an apology or a correction, the slander is out there, and the damage is done. The patients are wondering who is spreading such misinformation."
"I've met some wonderful politicians across the left to right, and there are some incredible journalists, too. I'm forever grateful for the desire to listen, learn, and understand. However, we must reach a place where patients do not need to do the heavy lifting to gain access. We need the right investment.
"After all my campaigning and getting kids' access, I have now joined many other families in Australia. But my family was torn apart, and life, as I know, has changed. There is no access for adults in New Zealand, but in Australia, there are two treatment options for us. 25 per cent of families with children leave New Zealand to gain access. Three other adults with SMA have joined me in Australia," said Ms Tolich.
"I'm here talking because I want to see a change in New Zealand. I believe there are some wonderful people in this room to get us there. But we must look towards a collaborative approach. Ultimately, we must not simply look at cost. We need to look at the value. Governments cannot be passive. They must value all its citizens and residents to ensure that the best class treatments can be accessed."
