Newsletter: April 2019

Greetings to everyone as the days draw in. We are intending to generate some heat with various planned activities over the next month.

There has been considerable media attention around Pharmac and the issue of delays and lack of drug funding of novel medicines in relation to solid cancers such as breast cancer and other types. There has been very little light shone on blood cancers such as multiple myeloma.

People may not appreciate that there have been no new myeloma treatments funded since lenalidomide for relapse in 2014. The FDA in the US is constantly giving indications for novel therapies and now Australia has also had several therapies funded recently, further widening the gap between us and our neighbours across the Tasman.

The data coming through on some of the new treatments are showing unprecedented improvements in survival and quality of life for myeloma patients and we are anxious to draw this to the attention of health policy decision makers.  Some of this data is already on our website and you’ll find more updates on this shortly.

In the meantime we are putting together a Parliamentary petition to be tabled on the Parliament petitions site very soon. A link to this will be on our website in the next few days and we hope we can get as many signatures on it as possible.  It’s a simple process you can do online, and your name and personal contact information is not published.  I will alert you to this as soon as it comes up, and encourage you to circulate it as widely as possible.

There is a tight timeframe on achieving maximum support for this (closing date 5 May), as we are working in step with the Breast Cancer Coalition and a number of other patient groups who are coming together to present petitions on May 7.

The current issue in New Zealand in myeloma therapy is about the lack of effective therapies at first relapse. Thalidomide is available but is not well tolerated and patients often only seem to last on it for a short time. Lenalidomide is available if patients have significant neuropathy but may have to wait until it can be obtained as third line.

Bortezomib (Velcade) is not funded at relapse and patients will have usually had their designated quota of 9 cycles during induction. We are asking for this to be funded at first relapse.

We are also asking that another more potent proteasome inhibitor, namely carfilzomib (Kyprolis), be funded at relapse. See our post on this here.  It is currently available in a compassionate access programme but this is likely to be terminated in the next few months.

Lenalidomide is currently funded for relapse but the recent data from the Medical Research Council XI trial (mentioned in previous posts) has shown a definite survival advantage for the transplant eligible group. The dose of only 10mg daily is effective and less than the usual 20 to 25mg treatment dose.

The monoclonal antibodies have been shown to have significant benefit at all points in the treatment scenario, and currently a small number of patients who have run out of options are receiving daratumab (Darzalex) on a compassionate basis. PTAC is currently looking at this indication but we must be prepared for a decision that may not be favourable. There is also another candidate called isatuximab that has been available in some centres through the IKEMA study.

Mention should also be made of pomalidomide which is an oral immunomodulatory drug that is potent but has been mainly used well down the disease course.

There is also an oral proteasome inhibitor called ixasomib which has been available in the TOURMALINE trial.  Ixasomib is also available on a compassionate programme, with what I understand to be fairly low uptake.

We cite all of these treatments in our petition and I hope that this brief overview is helpful in highlighting the many treatment options that are available but not currently funded by Pharmac.

Our hope is that our efforts alongside those of many other cancer patient advocacy groups will help lead to both an increase in government funding, and for progress to be made in achieving faster-track access to these life-extending treatments.

Regards

Ken Romeril
CEO  Myeloma NZ