EP is a community where members connect through shared life experiences-- like MS--and so much more. You are not defined by any one thing, so be your true self and find others just like you at
Experience Project.
Posted: Wed Jan 24, 2007 3:26 am Post subject: New treatments unlikely in the UK
Well, whatever anyone thinks about the so-called "free" health service in the UK, it seems unlikely that anybody using the UK NHS will receive any of the new treatments in the offing because they will all be too expensive according to my neurologist. Great. I went in to see him yesterday and we discussed Tysabri which will definitely not be bought in England since Scotland can't afford it and they're the spendthrifts in our crazy communal system. Other medicines of similar costs will similarly not be available to patients in the UK. _________________ 1st traceable symptoms Jan 01, last edss by doctor 6.5. Feeling better on salvia/ginkgo, curcumin, scutellaria, capsaicin, inosine. Interest in vit k, calcification inhibitors. Not sure re horsechestnut (2 vasoconstrictive?)
Posted: Wed Jan 24, 2007 4:11 am Post subject: Re: New treatments unlikely in the UK
GG
gibbledygook wrote:
... it seems unlikely that anybody using the UK NHS will receive any of the new treatments in the offing because they will all be too expensive according to my neurologist.
I'm not so pessimistic. The very recent release of the monoclonal antibody Trastuzumab (Herceptin), an expensive medication previously denied to to people with early breast cancers but now made available to them is a case in point. But it wasn't without a struggle and there are I'm sure people in the UK prepared to struggle for these drugs.
I think one of the drivers will be when the new medications are approved in the EU people will purchase them and the overt inquity of that discrimination (based on wealth) with the right political pressures will make them generally available. Fingers crossed. _________________ John
I am what I am
I certainly hope so but for the time being the latest "wonder" drug for MS, Tysabri, will not be available in the UK except privately. It costs about £15,000 per annum. Not that it works, of course! _________________ 1st traceable symptoms Jan 01, last edss by doctor 6.5. Feeling better on salvia/ginkgo, curcumin, scutellaria, capsaicin, inosine. Interest in vit k, calcification inhibitors. Not sure re horsechestnut (2 vasoconstrictive?)
Posted: Tue Jan 30, 2007 1:02 pm Post subject: Tysabri in the UK are you dreaming?
Hi
sorry for being so pessismsitic about the Tysabri coming in the Uk, but my own experience makes me think it should not come at all.
In the case of cancers ,there is a death risk, this is why maybe some expensive medecine were used in its treatment.
Also my English neurologist told me that she did not think that Tysabri would come before 6 years.
I believe her, when i see how tight she is to give me some steroïd when I got some crisis.
While in a country i am used to have at least 3 days of Solumedrol infusion, i just got in the uk some Methylpredinsone pills.
Fortunately I keep some contact with my Frogland medical system
Joined: Sep 12, 2006 Posts: 901 Location: Dayton, Ohio USA
Posted: Tue Jan 30, 2007 2:30 pm Post subject:
This makes me just wait with baited breath for the impending state run health care in the US. I can hardly wait........ People in this country will just vote it in and then bitch like mad when they can't get what they want.
This makes me just wait with baited breath for the impending state run health care in the US. I can hardly wait........ People in this country will just vote it in and then bitch like mad when they can't get what they want.
Tysabri might not be available yet in the UK or Australia (both being countries that subsidise phama drugs), but I wouldn't swap the situation in Australia or UK with the US for anything.
In the UK and Australia, drugs that are subsidised are made available to the entire population (working, unemployed, retired, whatever) for between $3.50 and $35 (Australian dollars, so even less in USD). This means that nobody goes without essential drugs because they can't afford them. 'Essential' doesn't mean you have to be on your death bed - it includes the full range of well-established drugs. In the case of MS, that includes Rebif, Avonex, Copaxone and Betaseron.
It horrifies me to read that there are people in the US that:
- don't use MS drugs because their insurance won't pay;
- don't use MS drugs because they can't afford the co-pay;
- use interferons, but can't afford the regular liver tests; or
- can't afford regular visits to a neurologist.
Although Tysabri was denied government subsidy in Australia recently, Biogen is expected to reapply for subsidy soon, and the drug is expected to be listed. Not that it really means all that much anyway; let's remember:
- Tysabri is a monocolonal antibody that can cause PML;
- anaphalaxis to Tysabri is not that uncommon;
- oral drugs are being developed that equal or exceed's Tysabri's efficacy, with much less risk. These drugs are expected to be available within 2 years or so.
I should also add that Tysabri is approved for use in Australia, but you just have to pay for it in full.
Joined: Jul 28, 2005 Posts: 1331 Location: Sydney, Australia
Posted: Wed Jan 31, 2007 1:57 am Post subject:
mjs wrote:
In the UK and Australia, drugs that are subsidised are made available to the entire population for between $3.50 and $35.
.... 'Essential' doesn't mean you have to be on your death bed - it includes the full range of well-established drugs. In the case of MS, that includes Rebif, Avonex, Copaxone and Betaseron.
I get 80mgx30 lipitor for about $25AUD. Now, technically I should not get it at the subsidised price (as I am taking it off label), and my DR does NOT tick the subsidy box, but all chemists go into autopilot and charge me the subsidised price.
On one medication script I pointed out to the pharmasist it was not subsidised, and when he saw the price, he asked me how much I normally pay, and could not bring himself to charge me the full price; he gave me a discount. The subsidy is really ingrained into our culture. The concept of medicine being affordable is as if its believed to be a god given right.
Tysabri might not be available yet in the UK or Australia (both being countries that subsidise phama drugs), but I wouldn't swap the situation in Australia or UK with the US for anything.
+1 !
All my medications cost me only £90 ($170) a year ! And if I cant work then nothing ! _________________ John
I am what I am
Joined: Sep 12, 2006 Posts: 901 Location: Dayton, Ohio USA
Posted: Wed Jan 31, 2007 6:58 am Post subject:
Those are good points all. I guess looking at it from both sides is what it takes. I just know how people in this country are. There will be a huge fight and a documentary the first time someone had to wait because of the slower system and didn't make it.
However, the points mjs makes are all points of view I didn't consider since I've never been in that seat personallly. They are all very valid and I definitely would not want to be denied treatment because I couldn't work. I guess in all things there are pros and cons. On one hand, you can get whatever you want in the US, but on the other, you have to have either good insurance or good $$. Thanks for making me think out my viewpoint some more. It really looks like this is the direction we are headed in the US with the recent changes in Washington DC.
Well, my neurologist just denied me the possibility of returning to beta interferon 1a and I had to fight very hard to get that prescribed in the first place. In the UK, if you don't fight to get prescriptions then you won't get them unless they're cheap, of course. So it's the middle classes who benefit at the expense of the less well-educated.
Still I wouldn't import the US system wholesale. I do, however, like the fact that there are more MRI scanners in the state of Florida than the entire UK! You pay for what you get. _________________ 1st traceable symptoms Jan 01, last edss by doctor 6.5. Feeling better on salvia/ginkgo, curcumin, scutellaria, capsaicin, inosine. Interest in vit k, calcification inhibitors. Not sure re horsechestnut (2 vasoconstrictive?)
You cannot post new topics in this forum You cannot reply to topics in this forum You cannot edit your posts in this forum You cannot delete your posts in this forum You cannot vote in polls in this forum
We encourage you to also visit our Multiple Sclerosis story and support community on Experience Project.
Experience Project is a vast and powerful community where people connect anonymously through life experiences. It's made by the same people who built This is MS,
on the premise that no one life experience-- like having MS-- defines a person. It now covers over 2 million life stories. Find and share yours!
Forum FAQ
Search
Usergroups
Profile
Log in to check your private messages
Log in
