Patient battler fights against odds

By Megan Brodie 3 years ago | In People
  • 3 years ago
NZ patient activist Fiona Tolich

21 July 2021

Fiona Tolich is a fighter. She has to be. Living with spinal muscular atrophy (SMA), she has spent years fighting for medicine access not just for SMA patients, but for all people living with – or invariably dying from – diseases and conditions for which people in other developed countries have effective therapies.

If she lived in Australia, Tolich would be celebrating some incredible wins in recent years, particularly for the SMA community who were given access to Biogen’s SPINRAZA (nusinersen) on the PBS in 2018 – a gamechanger for the condition. But she does not. Fiona Tolich lives in New Zealand.

“People like me are the only ones who can speak out in New Zealand and it’s tough, it’s really tough,” she tells MedNews. “It’s draining physically, mentally and emotionally. The Health Minister recently accused me of using extremist rhetoric. I’m trying to save the lives of kids and he’s trying to undermine me. It’s horrendous what you get subjected to.”

Herself born with Type 3 SMA, Tolich describes her own case as “quite unique”. While she may struggle with sport or picking up her children due to poor leg strength, in many other ways she can live a normal life. Yet while she considers herself fortunate, she also isn’t prepared to leave the rest of the SMA community to struggle.

“I would never compare myself to the torture that kids with SMA and their families are going through,” she says. “Adults with SMA also have zero hope in New Zealand because if we can’t get treatment for babies, I don’t think we’ll ever see the day adults will get access.”

People with SMA and parents of babies born with the genetic condition either live with it, die from it, or travel to Australia. A rare few have compassionate access to Spinraza, and Roche has now applied to have its SMA drug EVRYSDI (risdiplam) funded in NZ. Novartis has not applied to have its gene therapy ZOLGENSMA funded, most likely because the chances of success are slim at best.

Fiona Tolich with her children

Spinraza was recommended for public funding in NZ almost two years ago but, along with more than 100 other recommended drugs, is languishing on the waiting list with little hope of getting off.

Pharmac recently revealed it needed a $418 million injection to fund just 73 recommended medicines, some of which have waited over six years. Epipen has been waiting 16 years.

The $200 million provided to Pharmac in the recent Budget for the next four years is nowhere near enough to fund expensive new therapies like Spinraza, especially given it benefits only a handful of people.

Tolich and a few equally passionate patient advocates established an umbrella group a few years ago called Patient Voice Aotearoa, an initiative designed to prevent advocates from being played off against each other and to raise awareness of the problems of gaining access to new therapies in NZ.

“It doesn’t matter what angle you look at it from, the system is completely broken,” she says. “It was great years and years ago when we were looking to procure things like Panadol but when you’re looking at modern medicines, it’s archaic. It is not fit for purpose and people are being deprived.

“If you get diagnosed with bowel cancer, there hasn’t been a new therapy funded here in about 20 years. We have KEYTRUDA, a phenomenal drug, but only for melanoma. You can’t get it for lung cancer or head and neck cancer, for example. It’s absolutely crazy.

“I couldn’t advocate for just one treatment when it’s the system that’s broken. We are talking about lives here – not just the person waiting for treatment but their entire family.”

Ironically, she says NZ has a great newborn screening program but doesn’t screen for SMA because there are no funded options. Tolich believes the focus on funding drugs that provide the greatest benefit to the most people for the lowest cost means rare diseases will always be overlooked.

“If you’re looking at the downstream impact of not funding Spinraza, it’s feeding tubes, spinal rods, wheelchairs, home help, parents unable to work, all of those costs,” she says. “Whether it’s from a financial cost or a compassionate perspective, it makes sense to fund the drug.”

Taking the fight to a higher power

Tolich has recently taken the NZ Government to task, lodging an official complaint with the Human Rights Commission and arguing blanket funding of therapies for children with cancer but not for SMA meant the Government and Pharmac were discriminating against children with other diseases.

Pharmac had since signalled a review into the paediatric oncology program was underway, including the chance it would be changed in line with other programs rather than other programs brought up to match it. Media reports quote Pharmac as saying Tolich’s complaint triggered the review.

Tolich says the incident marks her only engagement with Pharmac despite her years as a leading patient advocate.

“There’s no engagement with the patients, none at all,” she said. “We represent thousands of people and I am the lead advocate when it comes to SMA, but they’ve not once wanted to meet with us. They just give you stock standard replies in emails. In my opinion, they don’t value the patient voice, they don’t see us as a key stakeholder.”

Tolich says Pharmac’s relationship with the pharmaceutical industry is equally fractious, citing a “culture of distrust” as the system looks to fund drugs at the lowest cost for the greatest number of people.

“In Australia, if a drug is recommended then the Government finds a way to fund it. In New Zealand, you have drugs that have been recommended for 16 years and still haven’t been funded. A drug can even get a high priority ranking for funding and still go nowhere.

“Babies die. I’ve attended funerals for kids that didn’t need to die. The Government is handing out millions for Covid but we’ve got another crisis right here – a medicines crisis – and people are dying, babies are dying. I have no trust in the New Zealand health system.”

©MedNews

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