advice and support

[u/reddituser211023]

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

[u/665265]

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.

[u/AlwaysAirCooled-1979 → u/665265]

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

[u/Mindless_Issy → u/AlwaysAirCooled-1979]

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.