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Immunotherapy and the PBS


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#1 just roses

Posted 01 November 2019 - 07:48 AM

Hi there,

I'm hoping someone can help me help my close friend.

She has thymic carcinoma, which was in remission for about two years and has now returned. The new tumour is inoperable and because of its location, radiation isn't an option.

The one option she does have is immunotherapy with keytruda infusions. However, this drug is not on the PBS for her rare cancer so she'll be shelling out $6000 every three weeks for goodness knows how long. They'll do a PET scan after the fourth infusion to see if it's working (which will be $24k in). If she had lung cancer (which is very, very similar) it would all be covered under the PBS.  

Has anyone had success in getting this drug on the PBS for their treatment, having it covered under PHI and/or having it subsidised by the drug company on compassionate grounds?

#2 Rilee's~Mama

Posted 01 November 2019 - 08:21 AM

I don't have anything useful to say ... shamethe doctors didn't "find" something suspicious on the chest CT which would get in on the PBS.

#3 MooGuru

Posted 01 November 2019 - 08:24 AM

I think there's a charity called Rare Cancers Australia who provide financial advocacy or something. They'd probably be the best bet for advice.

I'm sorry for your friend. What a freaking nightmare dealing with cancer and the stupidity of the pbs.

#4 Grassyrat

Posted 01 November 2019 - 08:38 AM

Is there a clinical study your friend can take part in to access the drug for free? If I was her I'd be asking the oncologist at her next appointment and pleading with them for a solution. PBS funding is a lottery with certain types of cancers unfortunately, even if a drug works for multiple types of cancers, the common ones like lung, breast, liver and prostate get most of the funding.

I hope your friend is able to access Keytruda at a subsidised rate xx

#5 just roses

Posted 01 November 2019 - 08:40 AM

View PostMooGuru, on 01 November 2019 - 08:24 AM, said:

I think there's a charity called Rare Cancers Australia who provide financial advocacy or something. They'd probably be the best bet for advice.

I'm sorry for your friend. What a freaking nightmare dealing with cancer and the stupidity of the pbs.
Thanks so much, MooGuru. I've just passed that on and she hadn't heard of it.

#6 just roses

Posted 01 November 2019 - 08:42 AM

View PostGrassyrat, on 01 November 2019 - 08:38 AM, said:

Is there a clinical study your friend can take part in to access the drug for free? If I was her I'd be asking the oncologist at her next appointment and pleading with them for a solution. PBS funding is a lottery with certain types of cancers unfortunately, even if a drug works for multiple types of cancers, the common ones like lung, breast, liver and prostate get most of the funding.

I hope your friend is able to access Keytruda at a subsidised rate xx
Thanks for this. She only got the news yesterday that the cancer had spread and she will begin keytruda on Monday by self-funding with savings. But there are definitely more questions to ask and funding avenues to explore.

#7 just roses

Posted 01 November 2019 - 08:44 AM

And yes, the drug is funded for more common cancers because it can be demonstrated to effective in large numbers. The trouble with a rare cancer is, while the drug might also be demonstrably effective, the numbers obviously aren't there by the very nature of it being rare.

#8 Ivy Ivy

Posted 01 November 2019 - 08:55 AM

New monthly drug notifications sent out today for November by MIMS state there's a new PBS indication for Keytruda (endometrial carcinoma).  Doesn't help your friend right now, but there are new medication indications added to the PBS every month.

#9 just roses

Posted 01 November 2019 - 09:46 AM

View PostIvy Ivy, on 01 November 2019 - 08:55 AM, said:

New monthly drug notifications sent out today for November by MIMS state there's a new PBS indication for Keytruda (endometrial carcinoma).  Doesn't help your friend right now, but there are new medication indications added to the PBS every month.
Thank you, that's great to know.

I've just found out the drug company caps costs at $60k, so at least that's something. But she has to pay for quite a few PET scans too, so it's still a lot of money. What an awful situation people must find themselves in, when faced with having to sell everything or mortgage the house just to have a shot at living to see their kids grow up. And that's the lucky ones who have savings and assets to being with.

Edited by just roses, 01 November 2019 - 09:46 AM.


#10 BusbyWilkes

Posted 01 November 2019 - 09:56 AM

Can she access her super for this? I know of others that have for medical reasons.

It is so frustrating. My child has a rare disease (possibly life limiting) and there is a common medication that has been used in other countries, where children have effectively gone into remission. We can't access it here, even if we pay for it. Because, as you mentioned, it is so rare there are not large enough groups to conduct research.

Could also consider a Go fund me if they would consider something like this.

Edited by BusbyWilkes, 01 November 2019 - 04:15 PM.


#11 Soontobegran

Posted 01 November 2019 - 10:09 AM

This is a Go Fund Me I would contribute to. Would she consider it?
My friend’s son died not long after Keytruda was available for Melanoma treatment. It just came too late.

#12 just roses

Posted 01 November 2019 - 01:36 PM

View PostSoontobegran, on 01 November 2019 - 10:09 AM, said:

This is a Go Fund Me I would contribute to. Would she consider it?
My friend’s son died not long after Keytruda was available for Melanoma treatment. It just came too late.
Thank you STBG, and I'm so sorry for your friend's son.

My friend won't consider crowdfunding until she runs out of funds. Thankfully, she does have some savings and, while it's awful to have to spend it all on cancer treatment, it does put her in a more fortunate position than many others facing the same diagnosis.

Thanks to MooGuru's link above, I now know that Rare Cancers Australia hosts fundraising for individuals with doctor's referral, so that would be an option should more funds be needed (and without the admin fees of Go Fund Me)

#13 cait81

Posted 01 November 2019 - 02:34 PM

Where is she being treated? She shouldn’t be paying for PET scans as a stage 4 patient. She could (and should) get her tumour genetically tested. It costs about $2500-5000 but can help identify trials or drugs that may work. Her oncologist/hospital social worker should also help her apply to the drug company for compassionate access. And I second Rare Cancers - they are fab. I’d also suggest she go to somewhere like Peter Mac in Melbourne and get a second opinion on treatment options.

#14 Mollyksy

Posted 01 November 2019 - 04:04 PM

I see you found the drug company caps the dollar amount. That was going to be my suggestion other than a clinical trial. My mum had a no PBS drug in her cancer fight and the drug company had a similar cost sharing arrangement.

As for scans, ask drs staff or hospital staff as often a local scan place will bulk bill cancer sufferers. Again, most of mums were bulk billed through a specific local scan plan. Some wont be covered due to Medicare rules. I ran foul of that in my recent hospital stat for emergency lung surgery. One chest xray is allowed for reimbursement each 24hrs. A couple of times I had an early morning say 3am then an 11pm xray and they only paid one. Didnt matter I was in ICU fighting for my life.

Mum too when cancer spread to bones had issues where she could get both hips scanned on the same day. One hip one day then they wanted the next hip the next day. Sure, a wheelchair bound stage 4 cancer patient is easily able to get out and around.

One that really annoyed me PBS wise (before the price of zofran  fell due to generics) was it's on the PBS for people having radiation but not chemo. So the govt can say sure 'cancer' sufferers can get it. Not for chemo though which is renowned for causing nausea.

A cancer nurse or the hospital and dr staff are a wealth of info.

All the very best to your friend OP.

#15 PrincessPeach

Posted 01 November 2019 - 04:16 PM

Some private health funds will cover the cost of a private script for medication (which is what this would be), but its not usually a great deal.



#16 Mollyksy

Posted 01 November 2019 - 04:30 PM

My old fund had a maximum limit of 600 dollars which didnt go far for IVF progesterone that was 200 a go. I switched funds, same limit, but they said the progesterone was not on their list (bit wouldnt show me said list so I'd know what was on it!!). Sadly for the OPs friend, while every little bit helps, it doesnt go far.

#17 just roses

Posted 01 November 2019 - 07:00 PM

View Postcait81, on 01 November 2019 - 02:34 PM, said:

Where is she being treated? She shouldn’t be paying for PET scans as a stage 4 patient. She could (and should) get her tumour genetically tested. It costs about $2500-5000 but can help identify trials or drugs that may work. Her oncologist/hospital social worker should also help her apply to the drug company for compassionate access. And I second Rare Cancers - they are fab. I’d also suggest she go to somewhere like Peter Mac in Melbourne and get a second opinion on treatment options.
This is very helpful, thank you. I’ll pass on the suggestion of genetic testing but it may not be possible due to the tumour being inoperable. They didn’t even biopsy this time around, it was apparently so obvious what it was. But worth asking and worth considering second opinion too. Would she need her doctor to refer to Peter Mac?

She’s in regional Queensland and being treated in Brisbane. At the Wesley, I think.


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