Funding!

[Angelcake2]

Hi everyone,

I hope you are all as well as you can be.

I’ve not actually posted here before but read and reply where I feel I can help in anyway.

I’ve had Juvenile RA for 41 years and have therefore been on many meds in this time. The last one was Gold injections which I reacted to and were therefore stopped quite quickly.

I have, according to my Rheumatology Nurse Specialist been on 6 biological meds and now they need to get permission and funding for me to be able to try any further meds.

My question is anyone in the same position where they’ve been told they need funding to continue your treatment?

Has anyone been on 6 or more biological meds?

I feel a little abandoned by my Rheumatologist as I’ve not had any meds for a year and I am only talking anti inflammatories, which are not really working.

Thank you for taking the time to read this. Angie x

[Nyreedw]

Yes biologics cost £10,000 a year so a criteria to qualify for them is set then funding is applied for. There is also a screening process,health and blood tests etc before starting them.

[Angelcake2 in reply to Nyreedw]

Yes I am aware of this as I started Enbrel over 18 years ago and had to go through screening for each one I was on. I just wondered if anyone had been told about the after 4 they need special permission/funding?

Thanks for your reply .

[AuroraB in reply to Angelcake2]

Maybe because you have gone in to the "inadequate of failed response to biologics" arm of biologic treatment pathways because of having had 6.

You may have come off the normal funding path for biologics and now they need to put a special individual patient treatment funding request in for you.

[Angelcake2 in reply to AuroraB]

Yes this would make sense, I just wish they would explain this to me . Unfortunately I have had severe reactions to a few of the biological meds !

Thanks for your reply .

[Angelcake2]

Yes I remember that they do require funding as I was on Enbrel over 18 years ago and this was funded by my local authority at the time .

However , after that I believe my hospital paid for some of the biological meds as they were not actually licensed at that point.

I was just wondering if anyone else knew for definite that the biological meds they are on are being funded by the local authority?

They have only mentioned one med to me at the moment, which is an old biologic.

No it’s not reclassified as RA , mine is JRA and always has been. I believe some meds as specifically for JRA too!

As I understand it , JRA is slightly different to RA as well.

Thanks for your reply .

[summerfruits in reply to Angelcake2]

I’m not sure but I thought it was government funding I know I had to wait for funding before I started my new meds and I’m sure they said at the hospital it was government funding, don’t know about 6 though as I’ve only been on two 🙈😂

[Angelcake2 in reply to summerfruits]

Thanks for your reply and I hope the second biological med is working for you .

[Ali_H]

Hi Angel,

This in my opinion is ridiculous and would suggest a couple of things -

Speaking to someone in the NRAS helpline

Have someone with you for any future appointments - a 3rd person in the room can changes things just by virtue of being there (sad but true)

If it’s not resolved speak to you local MP they usually have local clinics and their voice can get results around these kinds of things sometimes.

All the best

Ali

[Angelcake2 in reply to Ali_H]

Thank you for your advice .

I will contact the NRAS helpline as you have suggested as I am completely at a loss as to what to do next.

Yes, I usually go to my appointments on my own, so I think taking maybe my husband with me will be a good idea as he can ask questions I may not have thought about.

I will look into contacting my local MP too.

Thank you , your reply has helped tremendously as I’m now experiencing further joint damage and feel , like I said before, abandoned by my Rheumy Team .

X

[helixhelix]

I’ve never heard of local authorities funding biologics. Since 2013 biologics have to be approved by the relevant clinical commissioning group (except in Wales) via an individual funding request. Some hospitals do it so efficiently so you, the patient, aren’t really aware. And in other areas some biologics have automatic approval. Here's the basic info.

england.nhs.uk/wp-content/u...

It may be after 6 biologic they need to get an extra approval for you.

[Angelcake2]

I know my local authority funded my first biologic, Enbrel back in 2001 but I believe my hospital continued to fund them after some time .

Thank you for that link , it is very helpful and yes, it’s starting to appear that special/extra approval is the reason .

Thanks for your reply.

[Ontwowheels]

As Helixhelix said, all areas have their own CCG’s, who are responsible for funding. Each CCG will also have their own criteria for funding. So it may be your area won’t fund unless in exceptional circumstances. Years ago local authorities did fund medical services and treatment but this tends to change with each change of government.

[Angelcake2 in reply to Ontwowheels]

Thanks for your reply.

[Leviblu18]

Hello, I’ve been on various Meds including weekly methotrexate injections. I’ve just been put forward for biologics and a funding request has been put forward for me to start this, RA has affected my lungs so there is only option for me to have two to go for, so going on rituximab Iv medication.

Waiting for funding outcome

[Angelcake2 in reply to Leviblu18]

Thanks for your reply and I hope your funding is successful soon.

[Recorder500L]

As Helixhelix pointed out these drugs are so costly, your local authority would not be able to fund them. They are funded by NHS England if you are living in England. Not sure about Wales or Scotland, they may well have a different procedure. A telephone call to your Rheumy Department, this may have been overlooked. Take Care.

[Angelcake2 in reply to Recorder500L]

Thanks for your reply .

[Maggsie]

My authority currently has a limit of 5 biologics. Each of these 5 require funding from the health authority. Any more than 5 and there is a much more rigorous funding review which weighs the cost vs benefit of any further biological treatment.

[Angelcake2 in reply to Maggsie]

Thank you , that probably answers my question as I was unsure if this was something my Rheumatology/hospital had implemented or was widespread.

Thanks for your reply.