In New Zealand, hope remains despite diagnosis, treatment barriers
A columnist looks back at her five years of amyloidosis advocacy
An automated message from LinkedIn recently reminded me that it’s been five years since I started my role as a patient advocate at the New Zealand Amyloidosis Patients Association (NZAPA). I didn’t become an advocate because it was a lifelong ambition, but rather out of necessity.
My late husband, Aubrey, was diagnosed with hereditary ATTR amyloidosis in 2013. He had classic symptoms of gastrointestinal issues and numbness in his hands and feet. It wasn’t long before his heart was affected, and with the variant of TTR gene mutation his family carries, G47V, the accumulation of misfolded tetramer destroyed normal function in his main organs. The children and I lost him on May 22, 2022.
Living in beautiful New Zealand has its pitfalls. It’s a remote island with a population of about 5.3 million people, so we have limited access to things like medical technology compared with neighboring Australia. Additionally, New Zealand’s geographic landscape, characterized by hills, mountains, and lush rainforests, creates a barrier that affects social development and housing. All of this creates a complex challenge for those of us in the rare disorder space.
While New Zealand is considered a developed country in terms of our economy and infrastructure, we’ll always struggle to provide residents with the latest medical advancements. Cost, infrastructure limitations, and insufficient training of the healthcare workforce are genuine concerns that the government is trying to address. But it’s not happening quickly enough.
I lost my husband due to the lack of targeted treatment for his condition. Five years later, I still have to attend funerals for patients I’ve supported. I’m constantly overwhelmed by the feeling that we’re falling behind despite New Zealand’s image as a place of natural beauty, strong governance, and minimal corruption.
There are many key areas that have created hurdles for NZAPA, but identifying problems is the first step to finding solutions.
Limited specialists, delayed diagnosis
Although we have only a few amyloidosis specialists here, it’s encouraging to see a shift among clinicians in the past year, as they’ve taken an avid interest in understanding more about ATTR. With the help of two key experts in New Zealand and Australia, we started a monthly online meeting with a group of doctors to discuss the best treatment options for newly diagnosed patients.
We still meet patients who had to wait months and even years to receive a correct diagnosis. But thanks to clinical trials now taking place here for gene-editing and acoramidis, the means of diagnosis are now more readily available. This has cut down diagnosis time, although we still have a long way to go. People in remote parts of the country must travel long distances to reach the main cities for testing.
Although it has taken almost five years to turn the corner, I’m looking forward to the future and the positive change this country has in store.
As English philosopher Bernard Williams once said, “There was never a night or a problem that could defeat sunrise or hope.”
Note: FAP News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of FAP News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to familial amyloid polyneuropathy.
About the Author
Leave a comment
Fill in the required fields to post. Your email address will not be published.