We’re so pleased to highlight atypical HUS in New Zealand, with this article written by aHUS family caregiver Anna Benson. No one can better explain the needs and challenges of atypical HUS patients and their families than those who ‘rise above aHUS’ in their daily lives. We appreciate and applaud those people who juggle the myriad facets of busy lives, despite caring for themselves or a loved one living with aHUS, yet still make time to help us better understand the ‘aHUS space’ in their country. There’s no one better to explain aHUS issues, lifestyle accommodations, and treatment concerns within a country than those who personally must struggle to find work/life balance in the shadow of a rare disease that is estimated to affect only a handful of people per million population.
After reading this very informative article by Anna, we hope that you too will have a better sense of what’s facing aHUS families in New Zealand. The aHUS Alliance Global Action team strives to amplify the voices of aHUS families around the world, but we can’t do it without the hard work and advocacy commitment of actual patients and family caregivers. We hope that aHUS advocates in other nations shine a focused spotlight atypical HUS around the world, by sharing their own thoughts and and introducing advocacy needs and efforts within their nation. A series titled ‘Atypical HUS around the World’ focused on each and every nation would be great – but it isn’t possible unless aHUS patients and their families join in to make their voices heard. If there’s no national aHUS patient group in your country, we can help! Learn more about our aHUS R.O.W (Rest Of the World) initiative to encourage and support aHUS global advocacy – Click HERE.
aHUS in New Zealand
At this time in New Zealand (NZ) there is no register of people living with aHUS, therefore the exact
number is not known. However, as aHUS has a prevalence of about 4 per million cases in New
Zealand, about 20 or so surviving patients . There may be only be incidence of 2 to 3 potential new aHUS each year within New Zealand.
At the current time, eculizumab (brand name, Soliris) and ravulizumab (brand name, Ultomiris) are
not funded by Pharmac (the government agency responsible for the purchase of medications) and
therefore not generally available. Treatment in NZ therefore falls mainly to plasma therapies and
immune-suppressant drugs. Pharmac has recently been under review and it is hoped that the
outcome will have a positive impact on medication availability for rare diseases, including aHUS. In
anticipation of a positive outcome from the review, aHUS NZ has formally requested Alexion apply to
Pharmac for nationwide funding of eculizumab (brand name, Soliris) and ravulizumab (brand name,
Ultomiris) for use in aHUS, although this request has yet to be formally acknowledged it is being
aHUS NZ has recently joined with Rare Diseases NZ and is supporting their ‘fair for rare’ campaign.
This aims to support the formal review of Pharmac and its processes in order to have better
recognition and support of rare diseases (such as aHUS) and their medication requirements. Rare
Diseases NZ is also campaigning for rare diseases to be seen within government legislation as
separate to disabilities, which is the current classification.
aHUS New Zealand has a public Facebook page where we share public information about aHUS in
New Zealand. Here is the link:
We also have a private group where those affected by aHUS in New Zealand can connect with each
other, which is here: https://bit.ly/FacebookGroupNZaHUS
Please visit our public Facebook page & introduce yourself – we’ll be pleased to invite you to join with other aHUS patients and family caregivers in New Zealand!
Our aHUS Alliance Global Action team wishes to thank contributing author Anna Benson, New Zealand