Peter Black
Peter Black
My name is Peter Black and I live with the rare disorder Wild type ATTR amyloidosis. Diagnosed with ATTR in 2025, this disease has damaged my heart muscle and reduced my mobility. The medicine I need is the stabilising drug Tafamidis.
I found most of our doctors had little knowledge of the disorder or the treatments available. From internet study I found USA had effective treatments but at super high costs.
From contacting NZ Amyloidosis Patients Assn I learned that it is possible to get the treatment Tafamidis at an affordable cost if you are able to travel overseas. This medicine is available in Australia and other overseas countries. Some NZ sufferers have moved to Australia to get the medicine through the Australian health system.
Although well proven to delay Amyloidosis progression, the health authorities in New Zealand have dragged their feet so it is not available in NZ.
Without the medicine I will progressively deteriorate in health and have a short life expectancy. It is frustrating to know that effective treatments have been found, but our health authorities refuse to cooperate in making them available to NZ sufferers.
