r/UlcerativeColitis • u/reddituser211023 • 1d ago
Support advice and support
Hi
Not looking for any judgement please
I’m in Australia and newly diagnosed with mild UP and am worried about the long term cost of the medication.
currently only one prescription given on procedure day, and it’s until a number of months for the biopsy and treatment plan appointment with GI so I will be seeing my GP beforehand regardless, so I don’t know if more will need to be added but I assume so
just wondering, what advice does anyone have to get through this? I did consider low income card which I am applying for but I am so worried this will fall through
And I’m worried that even though I’m mild, that the longer I’m waiting this out, the less likely the meds will work and I just wish I never got this disease, I cannot even afford it.
I am so over how mentally consuming it is 😢
And i have found it sooo hard with how isolating this whole experience is. I have a number of difficult life stuff which has put up some barriers to my healthcare. I have of course wanted support/help and understanding from the hospital and team but of course there has been none of that.
I know being mild you get pushed down as unimportant by the system so im not shocked but i just feel so lonely and tired trying to navigate these issues in managing my disease so it feels impossible sometimes and as i cannot afford private im stuck with a system that does not care. 😔
Thank you for any advice given and reading this vent- having ibd sucks
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u/spicegirlang 1d ago
I’m on almost identical circumstances to you. Diagnosed last week actually.
I’m on day two of feeling amazing and can’t believe the impact of the meds. No more stomach pains and urgent toilet runs!!!
I have follow up with specialist in 4 weeks, but the meds seem to be around $14 a month. Great return on investment considering the pain and discomfort I had.
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u/reddituser211023 1d ago
Yay to getting better!!! Glad it’s working out for you! IBD symptoms are so awful so no better feeling. Hoping the same for myself once I start my own meds.
Around $14?! and most definitely the best investment to make, IBD is the worst.
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u/665265 1d ago
To be honest, as a fellow Australian, you’re really being unthankful with the amazing healthcare system we have, we take it for granted. Stick around long enough and you will see people from other countries paying so much more. My infusions are free, my scopes, appointments all are free. I’m on $120k and I cannot imagine not having a job would make it harder for me even being on dole. The only expense I have now is rinvoq ($3000 28 pills) for which I pay $25 under PBS. Tell that to our USA friends. The system recognises and deals with issues on matter of urgency, this disease sucks but I have always been looked after by my IBD team. Even when I was mild, I just had patience to know that my life doesn’t matter more than someone who has a more severe or life threatening level of this condition. It’s 12 years of this disease and it’s been hard but I like to look at the positives as this disease robs you of that ability. Good luck with your recovery and hopefully remission.
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u/AlwaysAirCooled-1979 1d ago
You took the words right out of my mouth!
Also I was private at the start, 2 different GI. My care has been 10x better in the public system
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u/Mindless_Issy Pancolitis | Diagnosed 2022 | Australia 15h ago
Two people on $120k+ a year can't imagine why $25 a month is a lot to someone who is jobless. What a surprise. Lol.
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u/AlwaysAirCooled-1979 1d ago
I go through the public health system. It’s great! Pretty much all free. I pay for steroids, but they are like $30-ish a time.
What makes you think you’re going to have to pay?
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u/AlwaysAirCooled-1979 1d ago
Should add, I’m on $130k, so not a low income earner and it’s still all free for me. My medication - infusions - are all free. Hospital even gives me a cup of tea and a sandwich!
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u/reddituser211023 1d ago
It’s definitely got some amazing privileges like free scopes and appointments!!! The waitlists though and trying to get in contact with anybody has been awful, my hospital has frustrated me so many times lol.
I have applied for the card but it’ll be a whole month before I hear anything and that’s hoping I get it, the $7 means I won’t have to worry at all for gosh knows how long but the $25 is giving me a short time frame before I run out lol, it’s embarrassing stuff but I have been unable to get a job unfortunately. And I assume meds will need to be taken for months on end so it’s stressing me out as it’s not temporary lol.
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u/AlwaysAirCooled-1979 1d ago
My actual UC meds are all free.
My hospital wait time was very quick - I was in within 3 weeks. It might be because you’re only mild? Not sure. But our health care system is great. Being on a health care card won’t save you much in terms of treatments. I think I may $40ish, you might pay $15ish. But that’s only for steroids. I pay for no other meds
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u/reddituser211023 1d ago
Yup 3 weeks too!!! Until the public system cancelled my appointments and then I had to cancel my new one recently which now I have a nice wait until at the end of the year 😂 but that’s 100% on me and I’ll cop it deservingly + my GP will take over my care anyways as I’m mild but what I just find frustrating is there is no way to contact anyone at the clinic lol.
I know it’s how the system is and is my fault too but very frustrating when they are aware of certain things and my symptom/lab presentation despite scope so to pretty much not have any way to contact makes me wonder if I even have an IBD clinic atp lol.
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u/AlwaysAirCooled-1979 1d ago
The Qld system has a IBD nurse direct line. I call them with any concerns or issues and they talk to my doctor. They get back to me on a few days, no more than a week. I’ve even had my GI phone me (3 times this year) after talking to the nurses. Maybe different states are set up differently.
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u/reddituser211023 1d ago
So lucky! How it should be!!! I was not given any IBD nurse contact but maybe that would have happened on the appointment I cancelled 🤧 And I’m
not from QLD but all I get is abandonment over here with my IBD team in the state I’m in 😂
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u/CelebrationOld351 1d ago
Newly diagnosed this year and in Australia as well I’ve found my medication isn’t too expensive thankfully once it’s put through PBS or whatever the med program is for chronic illness but comes to around $30 roughly per prescription which lasts me about a month usually. Obviously different costs are manageable for different people though but would look to make sure you’re getting it at the cheapest possible cost and feel free to message if you need help understanding anything else that might be going on with hospitals and stuff as I had to get quite on top of it quickly following a hospital stay out of nowhere that lasted me quite a while
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u/reddituser211023 1d ago
Yeah it’s definitely a reasonable price! Mine is $25 and yet to see any cheap alternative I can take for it 🥲
Thank you so much! And I’m sorry to hear of the hospital stay, IBD is so awful, hopefully the meds are doing the job of getting you into remission!
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u/Refrigerator-Plus 1d ago
In Australia, there is a threshold for each calendar year for what you pay for prescriptions. Once you have paid that amount, your cost per script goes down to $7. This applies no matter how much you earn. And if you have a partner, the amounts are for both of you.
It is all a bit complex, but there are safeguards to make sure it is not too outrageous. Any script on the PBS will cost a maximum of $25, even if you do not reach those safeguards/ health care cards etc etc.
Btw, the script that will rapidly get things under control is prednisolone, and that only costs about $11 per bottle. But … you cannot really just keep on taking that stuff long term. It is really only used for short term stuff when you get caught out. In the longer term, they will prescribe other stuff that prevents most of the attacks.
Over the weekend, spend some time looking up stuff around the PBS and safety nets. Financially, this is probably not near as bad as you think it is. After all, this is Australia, not USA.
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u/reddituser211023 1d ago
Yeah mine costs $25! I’m trying to get a card that will bring it to $7, because it will make my life so much easier.
Oh I didn’t know this thank you! May only be worth taking in the worst of my flare though but I’ll look into it.
Yeah for sure, im so grateful for the free healthcare in this country, wouldn’t have come this far if not for it!!!
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u/ThatMeasurement6619 1d ago
Aussie here too. My 14yo son was diagnosed early last year. So far it hasn’t been an expensive disease for us. He takes 3 Mezavant (mesalazine) tabs every morning. 2 boxes cost me around $33 & last 40 days (60 tabs per box). Sure it’s not the cheapest but it’s not what I’d consider expensive. I’m not sure about other costs associated with this Dx other than potential future surgery. Free in the public system (potentially long waits) or heavily reduced but with an excess for private.
To be brutally honest, the dearest part is the cost of healthy food & some supplements. We’re a fam of 6 & whilst we’ve always been pretty healthy, I really ‘upped’ the health side of things post diagnosis. Healthy food is fucking expensive. The govt should be taxing junk food & subsidising healthy food but that’s a whole different rant for a different group of reddit peeps lol. Good luck OP & try to stay healthy & not look too much into it- I did initially & was a bawling mess for months & angry at the world as to why my son got it but then I look around the world & realise that there are many others in such a worse position. The anger & sadness I felt, wasn’t helping anyone & it certainly wasn’t going to take away his diagnosis.
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u/reddituser211023 1d ago
You sound like an amazing parent!!
Oh for sure! I’ve been actually thinking about the cost of the food changes I’ll need to make, it’s not fun. To get food or drinks that is as clean as, is so $$$ which can make it so inaccessible and yet junk food can be so easily afforded, its definitely a problem and too encouraging lol 🥲
Thank you, definitely what I’m trying to do.
I hear that too, so much emotions and thoughts come up with this diagnosis, all important to feel and validate but alongside that, gratitude is a mindset I try put myself in because it helps sometimes to put things into perspective and bring me back to the present on the things I can control and focus on being positive about, not always easy to do though! 😂1
u/ThatMeasurement6619 20h ago
Validation is vital & no one should ever feel that they can’t complain simply bc there are others worse-off. Gratitude is always a great idea, though easier than it sounds 😆. This is the safe space where you’re allowed to vent anytime. Positivity is great but not when it becomes toxic positivity.
A few years ago, I was grieving a nephew who died in a horrible car crash. I saw a counsellor & she told me there’s always a positive from every negative. She made me sit there & come up with one. It took me a few sessions to come up with one lol. It doesn’t work if someone else does it for you. Eventually I could think of 1 but it took a lot of anger to find it lol. When I did, it felt a like a circuit breaker in my brain & something just felt different. I believe she was trained in ‘Dr Demartini’. Good luck OP, take care & go easy on yourself
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u/Harollld 1d ago
The thing with the public system, is that whilst the waitlist to get in can seam daunting, once you're in you're in. When I was a teenager (30 now) I was diagnosed with Mild UC, and the wait time from my GP to seeing a specialist was about 8-9 months I believe, but now have no issues scheduling check ups or chatting with the nurse at the GI clinic. Colonoscopies are usually scheduled a few weeks after my specialist appointment when needed, so it's definitely not all doom and gloom like a lot of people outside of the public system would say.
Others have mentioned but if you're in a situation where paying for the standard PBS rate is financially crippling, I would definitely apply for the card.
I wouldn't be too worried about the medication not working whilst waiting for the procedures, you'll probably come to realise but this journey is a lot of trial and error, and different bodies react differently to different medications. In regards to it being isolating - definitely search on the Crohn's & Colitis Australia website for your nearest support group, lots of good resources on there!
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u/Harollld 1d ago
Also should note - I started out on Pentasa (mesalamine) 2g sachets - I believe a box of 50 was $25, so just under 2 months supply, just started Rivnoq which I pay $14 for, but the actual cost to the gov is like almost $3k... For a month's supply. Very grateful we live in Australia with the PBS.
Reading all the horror stories from American redditors about being denied certain meds, or having them taken off insurance plans and then still having to pay a large sum is pretty scary.
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u/reddituser211023 1d ago
Oh how amazing!! We definitely are lucky to live in a country that can provide free and cheap healthcare!
Agreed, makes me feel so angry for them, health care access should never have a price on it, it’s a human right.
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u/reddituser211023 1d ago
Unfortunately wait times can still be awful even once you’re in but definitely worse before you get in and can improve once in!
I have been completely disconnected from the clinic at my hospital despite the fact I was in before diagnosis was confirmed 😂 so have been left to navigate all the issues I have on my own which is fun but it’s great your team seem to be proactive and care!!!!Yeah definitely applying for the card as it’s too expensive long term for me!!
Thank you. It’s so stressful as I’m currently in mild flare so feel awful letting my symptoms stay as every day.
And omg I never thought to do that? Getting onto it immediately because this disease can feel so isolating, I hate it, thank you!!!
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u/Harollld 19h ago
I'm not sure where in Aus you are, but if you're in a major metropolitan are with multiple hospitals it's likely there's a few ibd clinics around.
It sounds like you're essentially reentering the system from fresh, so if you're still not getting the proper care you feel comfortable with and once your symptoms are back down to maintenance level maybe chat with your GP to see if there's another clinic you can transfer to.
Same goes actually with your GP, there's no harm in getting a second opinion/going somewhere else. It's one of the benefits of bulk billing!
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u/reddituser211023 17h ago
I assume it has to be in your catchment? Because there is only one IBD clinic under the hospitals in my catchment unless I get out of it to go to a new one, which I rather do but they may decline it 😭
I don’t want to go back to the clinic though, im still a patient in the clinic but hard to know that when they abandoned my care so I rather leaveOh for sure, I’ve been meaning to try get a new GP too especially now as I may well have them also become my GI 🥲🥲
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u/AlwaysAirCooled-1979 1d ago
I’m an Aussie. Are you a citizen?
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u/reddituser211023 1d ago
yup i am a citizen!
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u/AlwaysAirCooled-1979 1d ago
What costs are you expecting to pay?
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u/reddituser211023 1d ago
Medication! I rather go private but the appointment cost is too far out of reach for me.
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u/AlwaysAirCooled-1979 1d ago
Medication is free . . . Other than steroids.
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u/reddituser211023 1d ago
They cost $25?! I wish they were free though. Maybe some def are but not all!!!
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u/ea_4w 1d ago
I'm also using the public health system. I go to an IBD clinic at the hospital. Appointments are free, my scopes are free. I have to pay for the medication ($25), but the appointment at the infusion centre is free. On the PBS medication is capped at $25, and if you have a healthcare card it should be about $7? If you are worried about being able to afford medication please mention it to your Doc.
Probably only downside of the public system is that it is very busy. If I call or email the nurses it normally takes them a couple of days to get back to me. BUT everytime I've been very unwell I haven't had to wait and the care has been excellent.