View Full Version : Normal Liver Enzymes after 10 weeks on Kaly

05-31-2012, 02:48 PM
Just wanted to report that I have been on Kaly for 10 weeks now and I just had my liver enzymes checked.
They were perfectly normal.
I will continue to check every 3 months and report back.
So greatful to live in a non socialized medicine country where not only do I have access to Kaly quickly, but can use it off label to benefit my lungs. Praise God!

05-31-2012, 04:53 PM
that's awesome!!! So happy for you!

06-01-2012, 11:46 AM
Fantastic news! I had mine tested after about 7-8 weeks and they were normal as well!

06-01-2012, 01:07 PM
That is fantastic news!!! So happy for you!! Thanks for keeping us posted. <img src="i/expressions/face-icon-small-smile.gif" border="0">

06-15-2012, 10:22 PM
Just a note, because I find this to be kind of a very useless, inaccurate and undeserved stab in socialized medicine : Socialized medicine has nothing to do with the ability or inability to use drugs off label. Socialized medicine or not, a drug still needs to go through an approval process with a government agency to be authorized for sale in a country. Socialized medicine or not, you can get a private insurance to cover for your meds, if the public plan doesn't cover them, because socialized medicine and public drug plans are two different things.
Whether you have access to Kalydeco also has nothing to do with socialized medicine. People in France and Australia have access to it, yet both are on socialized medicine.

06-17-2012, 12:10 PM
Australia absolutely has socialized medicine, and people are still lobbying the government to bring Kaly to their country. https://www.facebook.com/groups/343431685698805/ This is a group called Kaly for AUstralians and they don't anticipate access to Kaly until 2014.

The European Commission has the authority in Europe to allow a medication to by commercially available, and as of today, the EC hasn't approved Kaly. So it seems you are incorrect about Kaly being available in France. CHMP has recommended Kaly in late May, but no official government approval as of yet.


I have access to Kaly today. Right now. And I'm grateful to the healthcare structure and political structure of my country that encourages biotech research and FDA approval of such a game changing medication.

06-17-2012, 03:45 PM
I can confirm that we do not have access to Kalydeco in Australia yet. People who are seriously unwell (below 40% FEV1 or on transplant list) are getting the medication through Vertex (not through our health system).

Vertex has not applied to our TGA yet, so we cannot get access until after TGA approval and the PBAC recommends it for listing (so we can access it at a subsidised cost). Our private health insurance would not pay that large an amount.

We are hoping to get Kalydeco late next year but 2014 is possible. It really depends on the price that Vertex ask for...

07-21-2012, 06:57 PM
Sorry to hijack this thread but i can see there are people on here who are or have children that are taking Kalydeco. Our UK group Quest for Kalydeco are trying to make some headway on getting Ivacaftor approved for funding in the UK. We have been told that the stumbling block to all this (other than the massive price) is there is limited long term data and no evidence that people on Kalydeco use less treatments. Hence not being cost effective. So we are trying to get some personal testimonies to take to present to them at a meeting on Thursday to show this is true. If you can help us with this it would be amazing and we would hugely appreciate it. Plus feel free to email us on [email protected]

We also have a very quick anonymous survey that can be completed to help our cause <img src="i/expressions/face-icon-small-smile.gif" border="0"> http://www.surveymonkey.com/s/RNNC8HN

07-22-2012, 04:43 PM
It is awesome that your LFTs are normal! Are you going to post any info on your PFTs? Are they at least holding steady or has there been any improvement?
I know its still early and we still don't won't know if these results would be long-term, but it would be of great value to those who are heterozygous in America.....