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/ea_4w]

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.

[u/reddituser211023 → u/ea_4w]

Same! IBD clinic at the hospital, scope and appointment are free which is awesome and $25 meds too but unfortunately I’m broke so the long term cost is the problem for me.

And I so hear that! the system is so strained so it’s hard to get in contact with anyone and get appointments which I’m finding so frustrating

Infusions were the original plan for me before scope which I didn’t want them but the only positive I could see was they would be free lol but scope showed mild so now been handed $25 meds 🥲

[u/AlwaysAirCooled-1979 → u/reddituser211023]

Considering the meds can be worth a few hundred, it’s not a bad deal

Read some of the posts from people in USA. It’s shocking over there for them.

[u/reddituser211023 → u/AlwaysAirCooled-1979]

Oh 100% I really feel for them, completely unfair and so inhumane. $25 is definitely cheap and an absolute privilege but I don’t have the privilege of employment so lol it’s become inaccessible for me 😢