new diagnosis

[Rumble_on]

hi, I live in Australia, our son who turns 40 soon was diagnosed with kidney disease stage 4, 8 years ago, he was on dialysis for 5 and a half years and finally was given a kidney transplant, that was 2 and a half years ago, he has just been diagnosed with C3G, currently still in hospital, in Australia it is very rare, and his specialists really don’t know what the game plan will be, the other problem is that most of the drugs for treatment are either not available here or too expensive, everything I have read basically tells me there is a poor prognosis for this disease, he has already said he will not go back on dialysis again if needed nor will he have another kidney transplant as there is no point, are people living with this disease or dying. Thank you

[Lualfa5]

You know C3G is incurable & has a high rate of recurrence in transplant patients... but please tell him not to give up - there's good news & new treatments for C3G!Iptacopan (Fabhalta) from Novartis seriously reduces proteinuria. A friend of mine is taking it & doing extremely well.

Apellis is awaiting US FDA approval for an even more effective drug named Pegcetacoplan. They expect approval around July.

If you haven't already, I suggest you join Lindsey Fuller's FaceBook page, 'C3Warriors'. It's a remendous resource for us & other Aussie patients are on there as well. I'm sure they'll jump right in to tell you what they're doing & answer any questions you may have.

I just attended a NephCure Summit (a great resource for us) & met a Kiwi mum who's tranplanted daughter (currently on dialysis with a failed transplant), will be receiving a new kidney from a family member with a very new surgery at Stanford Medical Center in California.

This new surgery prevents recurrence! I believe Stanford is the only hospital performing this exciting, new surgery.

May I suggest you contact Stanford (med.stanford.edu/cdcm/why-c...

& ask how a non-US resident can receive this new surgery. I've no idea how the Kiwi family worked this, but NephCure is a patient advocacy organization, so they may also know how to help your son. If all else fails try a Go Fund Me page.

If you must go through go fund me, take the time & effort to build a page that makes people really care about your son & his situation.

I'll keep him in my prayers & I wish him & your family the best of luck with this. Please don't hestitate to join C3Warriors. I hope to see you there... it's been a God sent for me.

[Rumble_on in reply to Lualfa5]

Thank you for your reply, my sons medical team have mentioned fabhalta, just recently approved for Australia, unfortunately it is not on the pbs list so cost may be exorbitant

[Lualfa5 in reply to Rumble_on]

Check with Novartis. They have a patient advocacy team... I've no idea what help they offer, but maybe they can offer a grant. Organizations like the PAN Foundation and EveryLife Foundation do offer financial assistance through copay grants and other programs for patients facing high medication costs. I've no idea if their financial help is only for US citizens or if it's worldwide, but I do know, if you don't ask, you won't get. You've nothing to lose by asking.

I'm awaiting a reply from the FB group just to make sure there are Aussie patients on it. I'm pretty sure there are, but I'm not certain. They should be a great resource for you if they're active members. I'll let you know as soon as she replies.

[Rumble_on in reply to Lualfa5]

I’m waiting to be accepted on the FB page, thank you so much for your help in replying, so appreciated

[Lualfa5]

Just heard back ~ so yes, if you'd like to connect, there are active Australian patients on C3Warriors. Best of luck ♡

[Lualfa5 in reply to Lualfa5]

It's a very active page ~ I like that questions are answered very quickly.

[Lualfa5]

Just paying it forward ~ helping eacother.