Tauranga woman Maria Wortman-Dabrowska said she can still do daily tasks, such as walking her dog.<\/p>\n
If she was accepted for the free trial in Australia, the money would go towards flights, accommodation, living costs, other unexpected medical needs \u201cand potentially still CAR T\u201d, she said.<\/p>\n
Wortman-Dabrowska said her diagnosis had impacted her life \u201cpretty dramatically\u201d.<\/p>\n
Her previous work included choreographing as well as running a small gardening business. Now, she did massage therapy part-time but was currently not working, to prioritise her health.<\/p>\n
She could still walk her dog and do other daily tasks, \u201cit\u2019s just slower\u201d.<\/p>\n
\u201cIt\u2019s a hard struggle at times and then at times it makes you really appreciate being alive.\u201d<\/p>\n
Wortman-Dabrowska said she believed New Zealand was \u201csort of trailing behind\u201d other countries for multiple myeloma treatments.<\/p>\n
She would \u201clove to be able to access\u201d the myeloma treatment drug daratumumab but \u201cprobably can\u2019t\u201d due to the cost. The Rotorua Daily Post has previously reported daratumumab costs $220,000 a year.<\/p>\n
Sophie Lister, Wortman-Dabrowska\u2018s long-time friend, has organised a multiple myeloma awareness and fundraising event at Mount Maunganui\u2019s Leisure Island (Moturiki) on June 20 at 11am.<\/p>\n
Lister said attendees would hold hands and form a line or circle on the beach. The formation would be captured by drone footage.<\/p>\n
She hoped to raise awareness about the need for drug funding for multiple myeloma patients. <\/p>\n
All were welcome at the family-friendly event.<\/p>\n
CAR T-cell clinical trials in New Zealand <\/p>\n
The Malaghan Institute, a New Zealand biomedical research centre, has been running two CAR T-cell clinical trials for lymphoma patients.<\/p>\n
Clinical director Professor Robert Weinkove said the institute had been doing laboratory research on a form of CAR T-cell therapy that could be effective for myeloma.<\/p>\n
Although it aspired to open a myeloma trial in the future, this was uncertain as it depended on funding and the experimental research going well, he said.<\/p>\n
Weinkove said CAR T-cell therapy was different from other cancer treatments and offered potential advantages, including it typically being a \u201cone-off treatment\u201d.<\/p>\n
\u201cPatients\u2019 own T-cells are engineered to target and destroy a patient\u2019s own cancer cells \u2013 this minimises damage to healthy cells and can reduce the types of side effects associated with chemotherapy and radiation.<\/p>\n
\u201cFor some people with blood cancers, CAR-T cell therapies can provide long-lasting protection against cancer relapse.\u201d<\/p>\n
This was because the CAR-T cells inside the body could survive for months or years, providing \u201csurveillance\u201d against the cancer.<\/p>\n
Weinkove said CAR T-cell therapies could have serious immune system side effects. Clinical trials and treatment programmes were designed to monitor for these.<\/p>\n
He said a key objective of its second trial was to support registration of this CAR T-cell therapy in New Zealand and uptake within the public health system. <\/p>\n
\u201cBy establishing processes for assessing and delivering CAR T-cell therapies, we hope our lymphoma trials will open the door for delivery of other CAR T-cells in New Zealand.\u201d<\/p>\n
Pharmac advice and assessment director Dr David Hughes last month said it had four funding applications for daratumumab<\/a> on its options for investment list, including three for multiple myeloma. <\/p>\n These were medicines Pharmac wanted to fund if it had the budget available.<\/p>\n Hughes said Pharmac understood multiple myeloma had a significant impact on people\u2019s lives.<\/p>\n He could not say if or when a funding decision would be made, as it depended on available budget, negotiations with suppliers and the prioritisation of other medicines.<\/p>\n He said Pharmac was in regular contact with the supplier, Janssen, about its daratumumab funding applications.<\/p>\n