Tove Jensen-Munroe

I was diagnosed with myeloma and the rare disorder AL amyloidosis in January of 2017. I had two months of chemotherapy while in late-stage heart failure because of amyloidosis.

Since then I’ve been in haematological remission. In that six years of remission I had almost complete recovery of my heart function and was living a normal active life working in the end of life and supportive cancer care fields.

I relapsed in May of 2023 with heart damage visible on scans. I’ve seen three different haematologists who have advised that daratumamab would be the best option for second-line treatment. Daratumamab is the standard of care for myeloma patients with AL amyloidosis in Australia and the USA. Daratumamab is a safer option than a stem cell transplant for patients with organ damage. Without access to funded daratumamab I will have to undergo a risky stem cell transplant.

I live in Rotorua with my husband Tony who is my only carer and support. He works full time in the energy sector. My treatment options will have an impact on his availability as an essential worker in Aotearoa New Zealand. Having access to a medicine like daratumumab instead of needing to undergo a stem cell transplant, would be much less onerous on him. Pharmac funding decisions have a complex impact on our society that is not acknowledged.