Hi all, I know many of you are frustrated over there in the UK about NICE not approving Gilenya for the NHS. It has just been approved here in Australia for the PBS which is our equivalent and will be available at the subsidised rate of Au$5.60 a script as of Monday. Maybe the fact that other counties are seeing the cost benefits of this drug may spur your NICE onto rethinking their decision. Fingers crossed for you… Belinda
Can be used as a first line medication for RRMS and for SPMS with relapses. No need to have tried injectables first. B x
Hi Belinda, Are you gonna get a go on the Gilenya? 
Steffi xx
Sometimes I really hate the UK. Kxxx
Remember - there’s no NHS in Australia !!
marilynh wrote:
Remember - there’s no NHS in Australia !!
We have a vaery similar system of Universal Health care here too. People pay 1.8% of their income as a tax to fund Medicare which gives people free treatment at a public hosptial and free GPs appointments. You can also get psychiatry, counselling, physio, dieticians, podiatrists, physios etc under Medicare. And children get free dental treatment. To fund drugs we have a two tiered sytem. The first hurdle is the TGA or Theapeutic Goods Administration which decies on the safety and efficacy of drugs for licencing for use here. The there is the PBS or Pharmaceutical Benefits Scheme which means certain drugs are Govt subsidised. Most medicines end up costiing $36.00 or less a script this way. If you are on a Disability Pension or the dole or other welfre payment the medicines are further subsidised to only $5.60. One of the advantages of our Medicare and PBS is that it is a National scheme and we don’t seem to be lost in a postcode lottery as you Brits are. In the 8 years I have had MS none of my treatment has cost me anything apart from the $5.60 script costs. And once I have spent $700.00 pa it is capped and any meds are free after that for the rest of the year. My neuro appointments, MRIs, hospital stays, rehab, disability aids, house modifications, everything is free. Hope this helps to clarify the Aussie system. Personally I think we have the best health care system in the world.
crumbs wrote:
Hi Belinda, Are you gonna get a go on the Gilenya? Steffi xx
Hey Steffi, No I won’t be going on Gilenya as I am on Cladribine which is the other oral treatment that was knocked back by the FDA and the EU for approval. Merck Serono subsequently pulled the drug from the market world wide (it had been approved in Russia and Australia) but those of us currently on it will be supplied the rest of the treatment by the drug company. And this one is totally free as it is supplied direct by Merck Serono. The Cladribine can only be taken for two years so after that I will be treatment shopping again but it won’t be Gilenya because after Cladribine I can’t take it or any Interferons, Tysabri or Copaxone. There is another new oral in the pipeline going by the glamorous name of BG-12 which the Cladribine group will be fast tracked onto as soon as it is available. Cosmetic Surgery & Plastic Surgery Specialists | Flawless From now on I will only be getting brand new, semi-experimental treatments which is a little bit scary :shock: But I am sure the uptake of Gilenya will be huge here… 
Cheers, Belinda
Hi Belinda, I don’t want to go on Gilenya, I have been on betaferon for a long time now, but really feel for the people here who do want it. How is the cladribine going and how are you and thank you for that clarification of the Australian healthcare system. Cheryl:)
Hi Cheryl, Cladribine has been a bit of a rocky ride. 3 weeks after finishing the first course of treatment I had a massive relapse and ended up back in hospital for a week. I am now coming good from it so fingers crossed that is the end of the relapses for a long time. But it was pretty discouraging… Also my liver enzymes are going through the roof with the treatment which is being carefully monitored. My white blood cells seem to be behaving the way they are supposed to on Cladribine which means they are very low so theoretically I am immune suppressed but my daughter caught the flu and I didn’t so who knows? But over all it certainly beats stabbing myself with a needle everyday! Thanks for asking and hope you are OK B xx
Thanks Belinda, yea I remember you being back in hospital, glad you seem to be doing a bit better now. Cheryl:)
hi Belinda
Sorry to read about your relapse the doctors are thinking of starting me on Cladribine soon this will be done under the
Barts hospital Trust in the UK I had a bad relapse last November and spent 25 days in hospital as they said I could had had a stroke which I told them that I did not,I still nave not recovered from this relapse. When you had your first course of treatment did you have to be a day patient to have the treatment? I have a outpatient appoint coming u on the 10 August so I should know more then
Pauline
Hi Pauline
Are you aware that you’re answering a post from 2011?
You might be better off starting a new thread or looking for a more recent post on Cladribine.
Meanwhile I hope all goes well for you at Barts.
Sue