Importing Trikafta?

stock12

New member
Hello

Currently Trikafta is not approved here in Australia, but reading on the Therapeutic Goods Administration site for Australia you are able to import certain medicines for personal use provided you follow strict guidelines.

So my questions are: as someone with CF whose CF team are unanimous in their view that Trikafta would help me, I have family in the USA who I thought of reaching out to to do see if possible trikafta can be imported to Australia for my own personal use
1. What is Trikafta costing you guys over in the USA?
2. Has anyone had experience with importing medicines from overseas?

thanks for reading
stock 41 CF
 

Kangaroo15

New member
I'm Aussie too. You could contact Lauren Rowe @ rejecting Lauren . She has advocated for orkambi to be delivered to the USA. In typical Aussie fashion we know that we are SO behind the USA in CF therapies. I don't have CF but I supported someone with CF who passed away. And I also knew a family who's three of five kids had CF. Two have since passed and one is on his third transplant in his 50s with a family. I'm angry the govt does not prioritise CF . Given it costs so much for inpatient care you'd think they'd make it a priority. It also makes me angry that CF patients don't get their own room in adult hospitals, and very low infection control procedures compared to the USA where I have lived. As far as Trifkator importation goes. It will be extremely expensive. With no Medicare in the USA only Medicaid which is entirely different, most if not all have insurance which pays for these drugs. You'd be better off actually being in the USA and buying insurance and trying this drug. I'm not joking it could be upwards of $30k. And, customs could seize it. You could get on a trial, but nothing so far in Australia. Your best bet if you Really want to try it is go and live in the USA for a time. I am hopeful the govt here with eventually release it here. Good luck !
 

stock12

New member
Whoops mean to say Lauren has advocated for orkambi in Australia
Thanks Kangaroo, I appreciate the response, I was probably a bit naive thinking that perhaps a family member in the USA could simply get a prescription or go through their insurance and then mail it over for me to use. But given the costs and after messaging the TGA here in oz they tell me its not that easy and you might be anle to get special access but unfortunately I do not fit the criteria plus they do no give you any information if trikafta has been submitted for approval or if it has what stage it is at I am certainly not the only CFEr holding out lots of hope that this drug becomes avaliable soon as I wasnt eligible for orkambi due to my genetic mutation its really now a waiting game to hopefully have it approved here in Oz soon
Cheers
stock 41 w cf
 

Kangaroo15

New member
Thanks Kangaroo, I appreciate the response, I was probably a bit naive thinking that perhaps a family member in the USA could simply get a prescription or go through their insurance and then mail it over for me to use. But given the costs and after messaging the TGA here in oz they tell me its not that easy and you might be anle to get special access but unfortunately I do not fit the criteria plus they do no give you any information if trikafta has been submitted for approval or if it has what stage it is at I am certainly not the only CFEr holding out lots of hope that this drug becomes avaliable soon as I wasnt eligible for orkambi due to my genetic mutation its really now a waiting game to hopefully have it approved here in Oz soon
Cheers
stock 41 w cf
Hi, yes unfortunately the TGA makes things very hard. Im hopeful they will make it available soon
 
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