UPDATE COMING...
Afternoon everyone,
The following is an UPDATE to my seeking answers about MPN Patients being enabled to obtain and order "Allele Burden Frequency (ABF)" Testing for all MPN Driver mutations.
Allan, (one of our MATES members), started me off to discover these responses, and hopefully soon, we here in Australia will also be able to obtain these results, which can often reveal some prognostic values concerning having an MPN.
To date, in Australia, one can obtain a Test for the JAK2 'Driver' mutation, which is available presently at the Royal Prince Alfred, (where I believe the Testing can be - Bulk-Billed or a $75.00 Rebate is available via Medicare.
Further, I have been reliably informed through the Peter MAC CAncer Foundation, that most Australian states at least have one hospital w/ a molecular cytogenics department, who should also be equipped to provide such technical requests.
However, if an MPN Patient in Australia has one of the other 'Driver' mutations, I.e. CALR or MPL
The ONLY way at present to gain the equivalent information for ABF is by requesting a 'Next Generation Sequence (NGS)' gene panel, which is somewhat more expensive at circa $500.00
It is this writer's understanding that the writing below alludes to seeking greater Equity for all MPN patients, irrespective of which 'Driver' mutation they may have.
As I may have mentioned previously, knowing what a patient's ABF is can be a valuable prognostic tool, and in many cases might also provide cause for the removal of some anxiety, where MPN patients are generally concerned. There are many instances where people who might have been diagnosed w/ either ET or PV become most anxious and wondering what longevity they might now have. However, if there medical teams can show them that their particular MPN is mainly indolent then perhaps they might be able to rest a tad more easily, in my view...
Please everyone, do encourage your medical teams here in Australia, to add to the comments section, when it soon becomes available for the 'Expansion of Genetic Testing for MPNs'
Thank you, stay safe & well...
Steven
1532 - Expansion of genetic testing for myeloproliferative neoplasms under MBS item 73325
Page last updated: 21 September 2020
Application Detail:
Description of Medical Service
Molecular testing for the diagnosis of polycythaemia vera (PV), essential thrombocythaemia (ET) and primary myelofibrosis (PMF) can establish the presence or absence of specific mutations known to occur in patients with these disorders. MBS item 73325 currently provides for Janus kinase (JAK2) and myeloproliferative leukaemia (MPL) gene testing in patients with PV or ET. The proposed medical service being requested is the expansion of MBS item 73325 to allow testing for calreticulin (CALR) mutations in patients with PV or ET, and testing for JAK2, MPL and CALR genes in patients with primary myelofibrosis (PMF).
Description of Medical Condition
Myeloproliferative neoplasms (MPNs) are a group of disorders in which bone marrow stem cells grow and reproduce abnormally. PV, ET and PMF are MPN's.
The PDF File below, is an older version of this application:
http://www.msac.gov.au/internet/msac/pu ... %20PSD.pdf
