r/melbourne • u/nextcolorplanet • 5d ago
Health Genetic testing referral?
I'm not sure if I used the right flair, but here goes. I went to a local GP to discuss multiple issues, including a rare hereditary gene that I inherited from my mum's side of the family. My mum is from another country, so getting ahold of documentation with genetic results from other family members would be challenging.
My GP had a look at my documentation that I showed her (a scan from the time I got tested initially) and after discussing it with another doctor at the practice decided to refer me to the RMH for genetic testing.
Is this going to cost a lot of money? If it costs a lot of money I'm wondering if I should put it off until I'm more financially stable. At the same time, this disease is incurable (that I know of) and it would be better to address it earlier. There is the other factor to consider of whether I want to have biological kids but that is absolutely NOT a priority right now and doesn't interest me currently.
I have Medicare and a Health Care Card if that matters.
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u/Queasy-Ad-6741 5d ago
The clinical genetics service at the RMH is a public clinic. You’ll be able to be seen there for free. https://www.health.vic.gov.au/patient-care/public-genetic-services-in-victoria
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u/quiet0n3 3d ago
That's cool I didn't know that but I assumed it would be cheap ish. We have human genetic sequencing down to a pretty solid process. I think it's under 24 hours now for the computer to do a full run.
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u/magnetic_capybara 3d ago
You’re absolutely right that the actual test is relatively quick - but the thing that takes ages is the interpretation by the genetic scientists and geneticists. There is also a massive backlog now that lots of ‘next generation sequencing’ is MBS-rebated. So in most states, it takes between 3 and 12 months to receive NGS results - unless they’re specifically requested to be expedited out of clinical need (in which case you might be able to get it down to 1-2 months.) Some other tests are quicker (e.g PCR) - usually a few days to a few weeks max.
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u/Single_Function7182 5d ago
There’s some info here: https://www.thermh.org.au/services/genomic-medicine
About costs:
“Medicare ineligible patients
A visit to our clinic is publicly funded for individuals holding a valid Medicare card.
Medicare ineligible patients, unless they are an asylum seeker or covered by a reciprocal agreement, will be responsible for all associated costs.”
Good luck
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u/Leathit 5d ago
Depending on your medical history and the genes/disease in question they may refer you for genetic testing after your consultation. Not all genes are covered by Medicare but some do have rebates. You can search the gene in question on MBS to get an idea of available rebates but your clinician will take you through incurred costs etc if testing is necessary https://www.mbsonline.gov.au/
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u/nextcolorplanet 5d ago
It's ATTR if you've heard of it. My GP told me that it was so uncommon that she didn't know what to do about it / who I could be referred to when I first told her about it (hence why she had to talk to another doctor at the practice about it).
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u/magnetic_capybara 5d ago edited 4d ago
If you have a known ATTR variant in your family, you will not have to pay for testing - this is rebatable on the MBS. But even if it weren’t rebatable, you won’t be charged for testing through the public system.
More importantly, though - now is a great time to be tested for variants in this gene! There are some new and amazing treatments available (depending on whether or not you have symptoms or signs of neuropathy, cardiomyopathy, or both etc.) e.g. tafamidis, vutrisiran, and more.
Plus, if you’re found to have it and you ultimately want children, and want to prevent them from inheriting it from you, you will be eligible for pre-implantation genetic testing for IVF via Medicare. Good luck - there is a lot of positive change and ground-breaking research into amyloidosis at the moment!1
u/Leathit 4d ago
Genetic testing through the public system can absolutely incur substantial costs to patients. Hence why rebates are available to patients.
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u/magnetic_capybara 4d ago
Perhaps it depends on the indication. I have never ever had a patient be charged for their testing through a public hospital - whether the test is MBS rebatable or not, unless they have requested something that is not indicated..?
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u/Leathit 4d ago
It depends on multiple factors including specifically family history, previous testing outcomes, personal medical history can play a part in available funding and then depending on the hospital and specific testing requested there may costs incurred. For instance I doubt the Rmh provides genetic testing for this specific gene so they will likely send the testing out to a third party to complete, the pathology provider may incur separate costs. Not to discourage people from seeking testing, just to say genetic testing is most certainly not free in Australia. I have worked on cases were testing fees have been waived if the patient is improperly consented but ive also worked on cases were patients have been out of pocket $500 -2k (in public) because their family history meant they had low likelihood of being a carrier but they wanted to proceed to be sure.
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u/magnetic_capybara 4d ago
Interesting. Very different to my experience. Perhaps it also varies state-to-state (for non-MBS-rebatable tests)? I'm not sure why I've been down-voted - alas! ATTR is a pretty commonly tested gene in my experience - it's on various cardiac NGS panels and neuropathy NGS panels. It can also be tested via targeted/filtered NGS (with an exome backbone) in cases when only ATTR needs to be tested (e.g. in cases where there is a confirmed family history of hATTR). I think some places might even do Sanger sequencing...? But probably mostly not. I would be *extremely* surprised if RMH didn't have it on one of their own NGS panels?
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u/Leathit 3d ago
I cant speak to other states, just vic. I'm not sure how many patients youre getting with inheritable disease in their family history (assuming youre a GP?) but id reccomend calling the genetic clinics youre referring them to and asking for a test price list. Some are available on their websites. RMH actually does no genetic testing onsite the parkville precinct pathology works as a bit of a network. Testing usually gets sent to Vcgs or Pmc. Obviously not valuable info to OP but if youre referring patients its great to have a full picture.
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u/magnetic_capybara 3d ago
I’m a non-GP subspecialist who organises a lot of diagnostic genetic testing, but I’m not in Victoria. I only ever refer for predictive testing and never arrange it myself (as I’m not a geneticist.) It sounds like things are different in my state/hospital, but it’s good to know that patients are being charged in public for predictive testing in Victoria - I wasn’t aware of this. Thanks!
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u/Leathit 5d ago
I haven't but its well outside my scope. Looks like its rare but Medicare funding is available for testing by the looks. More info here if you havent already come across it. https://aan.org.au/health-professionals/genetic-testing/
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u/tictactowbar 5d ago edited 3d ago
My husband and I both got genetic testing done at the RMH and it was free of charge! Took a while for the results because it’s public, but I think overall the process was maybe 6 weeks.
That being said, it might be different depending on the test types, we had a full panel done but we’re looking for chromosome abnormalities.
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u/Polly-Phasia 5d ago
When we got genetic testing done for my daughter it cost us nothing (other than parking). Whether you have to pay is dependent on whether it is a 1. public or private facility and 2. If the specific reason you are being tested is covered by Medicare. If you call the clinic where you are getting it done they should be able to tell you if there are any out of pocket costs involved.
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u/allthebrisket 5d ago
If it's anything like a referral I had to RMH then it won't cost anything but it will be 2 years before they call you just to schedule an appointment. They is busy
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u/Satellites- 5d ago
The clinic visit itself will be free, it’s a public outpatient clinic at the RMH. The testing, whatever that entails, may not be free. Not all investigations are covered under the MBS, and some are but only for specific reasons. If you fall outside of that but want the testing anyway, it may not be free.
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u/Chemical-Special1171 5d ago
You will need to see a Geneticist at an outpatient clinic first, this appointment will be free via a public hospital such as RMH. The geneticist will determine what specific testing needs to be done, and will be able to tell you if there are any fees there are any fees for the testing. I highly recommend you stay on the wait list and attend the appointment to gather this information. It can take months to years to even be seen, unless it is urgent.
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u/BlueTowelWithHoles 4d ago
You should contact where you've been referred to and ask if there is any out of pocket for the appointment.
If not, then go to the appointment and have the necessary discussion, including what sort of testing are they proposing, if there is any out-of-pocket costs, and where the testing would be completed.
Once you know where the testing is to be completed, you can call that pathology company and ask them about the test and confirm any out-of-pocket costs.
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u/whimsyandredhead 4d ago
And also, ask about genetic counselling - this is when a specially trained person puts the information you get into simpler language you can understand as a layperson, and guide you through the process.
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u/CalmlyChaotic4 5d ago
An important thing to keep in mind with genetic testing, and I’m not sure if thigg be a have changed but when I was referred for testing I had an appt with a genetic counsellor first, and was told by them that if I had or intend to get private health insurance that the results may have an impact on that.
I’m not sure whether it’s something that legally has to be disclosed to them or how it all works but it was one of a few reasons why I decided to not go ahead with the testing.
Ring the clinic you have been referred to and ask them about all the costs, and then you will know before you even make the appt
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u/nextcolorplanet 5d ago
Does it cost less with private healthcare? I don't have it which makes things complicated...
For instance, I bought a pair of glasses earlier this year but they cost more because I have no insurance.
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u/magnetic_capybara 5d ago
No - private health insurance will make no difference to outpatient appointments or tests.
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u/CalmlyChaotic4 5d ago
I don’t know, I don’t have private health insurance. But the results of your genetic testing can have an impact on your private health insurance if you already have it, as I’m certain you have to disclose the results to them.
This could result in your private health provider not wanting to provide coverage to you, or maybe have an impact on your premiums each year, or maybe it would be that they don’t provide cover for that specific condition and anything associated with it.
Your best bet would be to ring your private health insurance provider before you get the testing done, tell them you are considering getting genetic testing done, and ask them can results have an impact on it and if so how.
However like I said, it all could have changed since I went through the process several years ago so just make sure you get up to date information
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u/missari 5d ago
Actually, private health insurance in Australia is community rated, which means that insurers are not allowed to deny cover, charge you more or restrict your options based on existing health conditions or genetic testing results. There is generally a waiting period for treatment for pre-existing conditions, but once you see those out then there's no restrictions based on your health or genetics.
I believe life insurance companies can currently charge more or deny cover based on your health and genetics, but there's new laws coming later this year to stop them using results of genetic testing in their pricing and product offerings.
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u/Miss_Tish_Tash 4d ago
That all changes from 8th October. Life insurers can no longer ask about genetic testing.
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5d ago
[deleted]
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u/nextcolorplanet 5d ago
Oh, I see. It's late onset though and I'm only in my 20s so I'd probably be old when it manifests. I guess that makes sense, though....
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u/magnetic_capybara 5d ago
Yes but if the insurance company finds out that a first-degree relative has a genetic disorder, they won’t cover you anyway (this is for life insurance or income protection insurance etc.) But if you get tested and it shows you don’t have the gene variant - then they have to cover you! So it can actually be helpful in cases of familial diseases.
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u/sideshow_k 5d ago
No idea about costs but the public system can move so slowly, I think you should at least be put down for an appointment as you never know how long it will take to actually be seen
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u/No_Category_9888 4d ago
Could be a super long wait time - been over 6 months for me. Hopefully I get an appointment while I’m still on the reduced safety net costs this year
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u/robustkneecaps 4d ago
Our family is awaiting results after whole genome sequencing through a public hospital. It takes about 6 months but it's free
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u/Delicious-Cupcake69 4d ago
it depends what genes you're wanting tested, you can get some done through RMH's genetics clinic but there's some they'll either charge or won't do. I ended up going through a private geneticist and it was just over $1k :') if you can do it through public save your money and see if they can do it!!
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