Lack of access to effective treatments is forcing blood cancer patients to take desperate measures
12 April 2018
Lack of funded access to life-extending treatments for multiple myeloma is causing some New Zealand patients to take desperate measures, including importing cheap, potentially less effective ‘knock-offs’ of the drug Lenalidomide from India, and in some cases even moving to Australia where another new myeloma treatment (Daratumumab) which is not funded here is available on a compassionate access programme.
Haematologist and chief executive of Myeloma New Zealand Charitable Trust Dr Ken Romeril says very few patients can afford the $100,000.00 it costs per year to receive Daratumumab, which has shown significant gains in survival for myeloma patients.
“It is not illegal to import generic drugs from India, but there are serious questions around the efficacy of some of these generic drugs.
“Getting onto drug trials in New Zealand has been another option for patients seeking access to novel agents, but often the trials are only open for a short time.
“A further issue is that not all centres in NZ have the trials open at their sites, forcing patients to try to travel to another region where a DHB may be offering a trial. Part of the problem is that drug trials require a lot of paperwork and oversight, and are therefore not all that well supported by some of the DHBs.
“While these issues are challenging for the health system, it is the patients whose interests we should be considering here, many of whom have run out of options and whose very survival is in the balance,” said Dr Romeril.
Multiple myeloma is a blood cancer of malignant plasma cells and is now the second commonest and second fastest growing blood cancer in the world.
Each year around 380 New Zealanders will develop this serious condition, and around 1800 are currently living with it.
Dr Romeril said that from 2011 New Zealand had been able to get access to Bortezomib, a new drug that improved the average survival from 3 to 4 years to around 6 to 7 years.
“New Zealand managed to achieve funded access to Bortezomib before Australia and we were leading them in terms of patient survival. But Australia has since made gains with improved access to a Thalidomide spin-off named Lenalidomide and have also been able to offer relapsed patients a compassionate programme for Daratumamab, which is proving very effective.
“So once again we are slipping behind Australia, and while it’s not surprising that some New Zealand patients have managed to move to Australia to get the drug, that’s not an option open to most of our patients.
We are strongly encouraging Pharmac to consider the 1800 New Zealanders battling myeloma and find the money to widen access to this and other more effective myeloma drugs, so that we can continue to build on the gains achieved over the last decade,” said Dr Romeril.
Chief Executive Officer
Myeloma New Zealand
Ph 027 443 2624
Myeloma NZ is a registered charity set up to improve awareness and advocate for improved treatments for the 1800 patients living with this condition.
Multiple myeloma, also called myeloma, or plasma cell myeloma (WHO), is an incurable blood cancer that starts in the bone marrow. Malignant plasma cells, called myeloma cells, grow uncontrollably within the bone marrow, suppressing the development of normal white blood cells, red blood cells and platelets.
Multiple myeloma spreads from the bone marrow into the bone, causing the bone to become thin, weak and more likely to fracture or break. The breakdown of the bone can cause an increase in the level of calcium in the blood. This can affect the kidneys so that they cannot filter and clean the blood properly.
There are approximately 380 new cases of multiple myeloma diagnosed in New Zealand each year. Multiple myeloma affects mainly older people and the median age for diagnosis is 66 years, but it can also affect people under 40. The incidence of multiple myeloma is about 40 per cent higher in males than females and almost twice as common in Maori as non-Maori.
The most common symptoms of the disease are bone pain and fatigue. Suspected factors in developing multiple myeloma include genetic disposition or environmental or occupational exposure to chemicals or radiation. The name multiple myeloma was given in 1873 when Russian Dr Von Rustizky described four cases of multiple tumours in bone.