Tresiba/degludec: available on the NHS?

[johnanthonyvaughan]

Dear all,
I have been on a split dose of Lantus for 11yrs (since diagnosis), and have always struggled with nocturnal hypoglycemia. My endocrinologist suggested I try Tresiba, and he gave me a private prescription for a 200 strength pen, which lasts me around a month. My conditions were far improved (less BG variability, fewer nocturnal hypos, more balanced lunch and dinner insulin dosage/requirements) and so i'd like to switch to it via the NHS. My local GP has informed me that is isn't available on the NHS, despite this website suggesting otherwise. There appears to be regional inconsistencies in the ability of individual surgeries to be able to prescribe it (mine is in Westminster), although they suggest a 'hospital' can prescribe it. Not sure what that meant, but it doesn't sound very permanent.
Has anyone come across this? I'd love to switch to it, but can't afford to pay for it indefinitely.
Any help or guidance is greatly received.
Many thanks.

 

[Gaz-M]

my DSN asked the Consultant for me at the hospital I attend, he approved the insulin and sent a letter to my Dr to change my prescription and gave me a prescription for it so I could collect it that day at the pharmancy in the hospital

 

[robert72]

I've been using it for over a year now. My GP prescribes it (but grumbles about the cost )

 

[donnellysdogs]

Certain CCG's have made this a double red drug... Only prescribable thru a consultant begging the CCG.

 

[iHs]

There was an article about Tresiba in IDDT Sept newsletter which can be downloaded from the IDDT website. Seems that the insulin will no longer be available in Germany due to cost.

 

[noblehead]

Sounds like your Dr is reluctant to prescribe Tresiba due to the cost, why don't you ask your Endo to write to your gp surgery and explain how this insulin has improved your diabetes control, it's surprising what a letter can do ........

 

[johnanthonyvaughan]

Thank you all. I've tried this. My endocrinologist wrote a letter to the GP suggesting it is prescribed, and when i met my GP to discuss, she looked it up in front of me and it wasn't on the 'approved list', whatever that is. I can only assume it varies from region to region....? Seems bonkers. I'm going to try Levemir instead (split doses), as i've heard that is a little better than Lantus for avoiding nocturnal hypo incidence. Any thoughts on this strategy?

 

[noblehead]

Thank you all. I've tried this. My endocrinologist wrote a letter to the GP suggesting it is prescribed, and when i met my GP to discuss, she looked it up in front of me and it wasn't on the 'approved list', whatever that is. I can only assume it varies from region to region....? Seems bonkers. I'm going to try Levemir instead (split doses), as i've heard that is a little better than Lantus for avoiding nocturnal hypo incidence. Any thoughts on this strategy?

I would query this again with your Endo, Tresiba has been approved and is available on prescription in England & Wales:

http://www.diabetes.co.uk/diabetes-medication/diabetes-and-tresiba.html

Worth trying levemir if your not successful at getting Tresiba prescribed, but if your suffering from nocturnal hypo's then you would fit the criteria for moving on to a insulin pump, discuss this with your diabetes team and see what they say.

 

[donnellysdogs]

Thank you all. I've tried this. My endocrinologist wrote a letter to the GP suggesting it is prescribed, and when i met my GP to discuss, she looked it up in front of me and it wasn't on the 'approved list', whatever that is. I can only assume it varies from region to region....? Seems bonkers. I'm going to try Levemir instead (split doses), as i've heard that is a little better than Lantus for avoiding nocturnal hypo incidence. Any thoughts on this strategy?

Your endo should have written to your CCG not your GP stating the case for your usage.....

 

[donnellysdogs]

Thank you all. I've tried this. My endocrinologist wrote a letter to the GP suggesting it is prescribed, and when i met my GP to discuss, she looked it up in front of me and it wasn't on the 'approved list', whatever that is. I can only assume it varies from region to region....? Seems bonkers. I'm going to try Levemir instead (split doses), as i've heard that is a little better than Lantus for avoiding nocturnal hypo incidence. Any thoughts on this strategy?

Your endo should have written to your CCG not your GP stating the case for your usage.....

After your endo has received the ok or not then he should write to your GP with the relevent letter of agreement from the CCG.

 

[johnanthonyvaughan]

Thanks all for the thoughts and comments; despite letters from my endo, I'm still 'stuck' at my GP, who claims not to be able to prescribe it to me owing to it not being available in North West London, despite it being approved in England & Wales. Apparently approval is regional, and NW London hasn't approved it. All I can get from her (with express approval from my endo) is a private script, and so I just paid £152 for three 200-strength pens, which should last me around 2.5mths. I really don't like the idea of paying almost £60/mth for my basal insulin... so does anyone know who I can lobby to try to get Tresiba approved at the NW London NHS Trust? Has anyone had any dealings with this Trust, and/or with various bits and pieces not being available at regional levels?
Thank you very much for any thoughts.

 

[noblehead]

@johnanthonyvaughan, you could try lobbying your local MP or ring the Diabetes UK Advocacy Service Helpline and see if they can assist in any way.

 

[robert72]

Thanks all for the thoughts and comments; despite letters from my endo, I'm still 'stuck' at my GP, who claims not to be able to prescribe it to me owing to it not being available in North West London, despite it being approved in England & Wales. Apparently approval is regional, and NW London hasn't approved it. All I can get from her (with express approval from my endo) is a private script, and so I just paid £152 for three 200-strength pens, which should last me around 2.5mths. I really don't like the idea of paying almost £60/mth for my basal insulin... so does anyone know who I can lobby to try to get Tresiba approved at the NW London NHS Trust? Has anyone had any dealings with this Trust, and/or with various bits and pieces not being available at regional levels?
Thank you very much for any thoughts.

@johnanthonyvaughan - I am in North West London (Camden) and am prescribed it on the NHS.

 

[robert72]

I wonder if it's because you are asking for the U200 version? I have it in U100 PenFill cartridges which I use in a NovoPen.

 

[tim2000s]

@johnanthonyvaughan, is there any reason why you can't use U100 Tresiba?

 

[steve_p6]

5 levemir penfills on pharmacy2u are £10.50, equivalent Tresiba is £18.00. If they are going to quibble over £8/month then the world has gone mad!

 

[robert72]

5 levemir penfills on pharmacy2u are £10.50, equivalent Tresiba is £18.00. If they are going to quibble over £8/month then the world has gone mad!

That is the price per unit so it's £90 for 5 penfill carts of Tresiba

 

[steve_p6]

I think are right, older post suggests about £10 per cartridge for levemir. http://www.diabetes.co.uk/forum/threads/cost-of-drugs-insulin.20655/
Will have to double check my sources next time! Cost difference is £30-35 a month if I want to switch.

 

[johnanthonyvaughan]

Thanks all. No particular need for U200 rather than U100, but it just makes it easier as the pen lasts almost a month rather than 2 weeks (i'm on 22 units/day). But I've been in the room with the prescribing doctor as she's looked on her screen, and there is no mention of Tresiba or degludec in any strength. Can't quite work out what's causing this inconsistency...it's as if each practice has it's own rules on what it can prescribe, irrespective of the England & Wales approval. So I'm bemused... and pretty sure I'm missing a trick somewhere. Re. the cost: £108 for three pens at Pharmacy2U is better than £152, but infinitely more expensive Lantus (free).

 

[tim2000s]

Thanks all. No particular need for U200 rather than U100, but it just makes it easier as the pen lasts almost a month rather than 2 weeks (i'm on 22 units/day). But I've been in the room with the prescribing doctor as she's looked on her screen, and there is no mention of Tresiba or degludec in any strength. Can't quite work out what's causing this inconsistency...it's as if each practice has it's own rules on what it can prescribe, irrespective of the England & Wales approval. So I'm bemused... and pretty sure I'm missing a trick somewhere. Re. the cost: £108 for three pens at Pharmacy2U is better than £152, but infinitely more expensive Lantus (free).

The NHS costs (according to NHS Prescribing data) are:

Each unit is a single cartridge or pen.