Soliris in Australia
Hi all,
Here in Australia Soliris is not an available drug for aHUS, it late last year became approved by our governing body - TGA
but now we need to get the governemnt to fund the use of the drug (our health care system is different and our insurance companies dont pay for medications) Alexion have submitted an application to the Australian government to approve the funding of this drug to make it accessible to all in Australia with aHUS.
The link below is for patients/carers/family/friends.....anyone.... to make a public submission for the government to consider when making their decision... if anyone has the time (only 5 minutes) to fill out the form online and submit it all of us here in Australia would be so grateful as the more people that make public submissions hopefully the louder our voices will be heard by the government!!!
http://www.health.gov.au/internet/main/publishing.nsf/Content/PBAC_...
Thank you so much
Kerri
Views: 128
Comment
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Comment by sabrina kiernan on February 9, 2013 at 5:07pm -
Done, fingers crossed for approval of drug
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Comment by Kamal D Shah on February 9, 2013 at 5:52am -
Lol! Yes Len. Amazing thing it is - the internet!
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Comment by Kerri Grey on February 9, 2013 at 5:51am -
hahahahahahahahahahahaha.... Len you gave me a laugh... thank you!!!!
Internet is definitely a wonderful thing when used for good :)
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Comment by Len Woodward on February 9, 2013 at 5:46am -
Kama Now I have seen it all ,someone from India quoting Spanish to an Australian responding to someone from the UK on an USA website!
All with an hour, marvelous thing the internet.
I'll quote the Everly Brother's... "All I have to do is Dream"
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Comment by Kamal D Shah on February 9, 2013 at 5:12am
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Que sera sera....
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Comment by Kerri Grey on February 9, 2013 at 5:10am
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That's great Len, hopefully our government are hearing us loud and clear :) .
Kamal definitely need to work on getting it available for you there in India... Should be made to EVERYONE EVERYWHERE .... It's not right that there is a drug to make things better but yet you can't use it... Not right at all!!!
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Comment by Kamal D Shah on February 9, 2013 at 3:48am
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Oh yes, can't wait for that day! Just hope I am around hehehe...
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Comment by Len Woodward on February 9, 2013 at 3:47am
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I hear that Francisco in Spain and Nicolas in France have also contributed.Hopefully one day Kamal we can focus on India too!
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Comment by Kamal D Shah on February 8, 2013 at 8:16pm
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Done! Here's hoping the government acts quickly on this!
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Comment by Len Woodward on February 8, 2013 at 5:23pm
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A prevalence of 50 to 60 seems about right for a 21 million population , by that reckoning there should be around 12 aHUS patients in NZ. I guess the difficulty is diagnosis.
In the UK there are just short of 200 patients but there is a concern that the number could be nearly twice that level because of incorrect diagnosis.
Also adults with aHUS here are twice the number of children with aHUS. There are quite a lot of young female adults with aHUS and it is predominantly a female illness.
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