Life Saving Drug Not Available / Funded in NZ

Hi,

My name is Jamie. I live in Christchurch with my wife and our two children, aged 12 and 14.

I’ve had an ongoing heart condition for years, but it was only recently correctly diagnosed. In 2017, we tragically lost our youngest daughter while living overseas. The doctors believe that the immense stress from this event triggered an inherited genetic condition, Hypertrophic Cardiomyopathy (progressive MYBPC3 variant).

For me, this condition has caused my heart muscle to thicken and stiffen, significantly reducing its ability to pump blood and leading to dangerous arrhythmias, including ventricular tachycardia. As a result, I am now extremely limited in my physical capabilities and spend most of my days resting. Even basic tasks have become overwhelming.

While some cases of cardiomyopathy can be treated with alcohol ablation, my specific case does not make me a candidate for this treatment.

There is, however, some hope: new medications such as Mavacamten, a Myosin inhibitor, are showing positive results in the USA. Unfortunately, these medications are not funded in New Zealand. My cardiologist has estimated the cost for a 12-month supply to be $150,000 NZD, which makes this treatment financially out of reach.

My goal is to obtain at least 3-6 months of this medication to see if it can improve both the quality and quantity of time I can spend with my family.

Thank you for your time and consideration.

Jamie & Lorna