There aren’t many people in New Zealand who are on a benefit because of migraine, despite migraine being a common and disabling disease, that can seriously impair people’s ability to work. But if you are, and you want to try the new migraine medication Emgality, but can’t afford it, here’s a story of hope.
Cheryl (not her real name) has lived with migraine for most of her life. From a child, she had ‘bad heads’ that made her vomit, but in a family of six children, there was no spare money for doctors’ visits, so she rode out the attacks with the help of a bowl and cold face cloths. She would bounce back and didn’t let it affect her outdoor tomboy lifestyle.
But as a 23 year old mother, she contracted viral meningitis and the migraine attacks flared up and never retreated. Alongside severe head pain, sensitivity to light, vomiting and diarrhea, she experienced weakness on one side of the body which affected her walking. Finally, a neurologist diagnosed migraine disease and prescribed ergotamine, which initially was a godsend, but became less effective over time. Thus began the journey of trying different treatments, cycling from a time of feeling better to a time of being worse.
Raising a family was a challenge but she was blessed with a supportive partner and understanding children, until her husband was unexpectedly diagnosed with cancer, which was rapidly fatal. With two children still at home, having lost her soulmate and the family’s breadwinner, she had to go back to work. But with the positive attitude that had shored her up through the years of unpredictable migraine attacks that left her huddled in a dark, quiet room, she enjoyed the focus of work, and distraction from what she had lost.
However, more was in store. She developed a serious gut issue, which landed her in hospital on multiple occasions, treated for pancreatitis, sepsis and needing three operations. All this with migraine, aggravated by the noise, lights, smells, lack of sleep and chaos that is emblematic of hospital admissions. The hospital staff laughed at her for wearing sunglasses on the ward but it was no joke.
She dropped her working days from 5 days a week, to 4, then 3 and 2, and finally had to stop entirely because of the chronic migraine and gut issues. She was started on the Supported Living benefit and her migraine symptoms worsened, to the point where she was wheelchair-bound, unable to walk without her legs giving way. Her GP referred her to another neurologist, who confirmed that these symptoms were all related to severe migraine disease, and prescribed Emgality.
This changed everything. After a month, she had a significant reduction in the frequency and severity of attacks, the brain fog lifted, the sensitivity to light improved and she was needing fewer if any acute medications. From being unable to garden or do vacuuming without triggering an attack, she could now do both. She was no longer falling over and even started to imagine getting back on her bike in the summer and going for bush walks. She had her grandchildren for sleepovers on the weekend, which she hadn’t been able to do for years. She picked up some community work, and loved it. Finally, she was getting her life back.
Emgality was difficult to afford on the benefit, but after such a response, there was no way she was going to stop it. She asked Work and Income New Zealand (WINZ) whether there was any funding available for an expensive but extremely effective (in her case) medication that was not funded by Pharmac. She was given a form for her GP to fill out to apply for ‘Alternative Treatment’, that included details about her medical history, what treatment she had tried in the past, the assessment from the neurologist and why Emgality was needed. This application for alternative treatment is a Disability Allowance – a weekly payment for people with a disability who have ongoing costs including hospital visits and medication.
Two weeks later, she received the first payment, an extra $56 a week, that would cover around two thirds of the cost of Emgality. WINZ confirmed that they would pay this for 6 months and then require further proof that the medication was still required and was still beneficial.
So, there is bureaucracy to navigate, forms to fill out, and probably a neurologist visit to wangle. But here’s proof that people with migraine on a benefit may be able to get a contribution from WINZ to cover the cost of Emgality. Not the entire cost – although why not is far from clear, since the WINZ website states that they can pay up to $75.10 per week. But it is something. If you are one of these people on a benefit who would like to try Emgality but can’t afford it, talk to WINZ or your GP about this option.
Cheryl would like everyone with chronic migraine to be able to try Emgality, or a similar medication, since it has had such a profound impact on her life. Her future looks better now than she ever imagined.
We know that Emgality doesn’t work for everyone, but people with migraine who have run out of other options deserve the chance to try it. Migraine Foundation Aotearoa NZ has taken stories like Cheryl’s to Pharmac’s Neurological Advisory Committee, who are reviewing applications for new migraine medications, including Emgality. We can only hope that they listen to stories like these, that not only demonstrate the profound need for more treatment options, but the huge potential benefit.