Pathological Myopia/Myopic CNV - told Eylea is licensed for use in UK but not funded in England (only Scotland and Wales)

[kalahuchi]

After 8 injections in my left eye and 4 in my right for pathological myopia, my right eye was actually worse after my Lucentis injection a fortnight ago, although thankfully, my left eye has responded well. They're going to try another Lucentis in my right eye to see what happens, but I talk to lots of people in clinic and know that if Lucentis stops working in AMD, most switch to Eylea with good results. Naturally I asked if I would switch drugs if there was no improvement after the next injection and was shocked and horrified to learn that although Eylea is licensed for use throughout the UK for myopic CNV, it is denied to those of us in England but is routinely used in both Scotland and Wales where it is fully funded.

I was also told that, although I'm of working age and only have one fully functional eye which I rely on to work and to drive, the vision in that eye hadn't deteriorated sufficiently to be allowed funding for Eylea even if I needed it in the future. In other words I'm expected to become partially sighted when a perfectly good treatment already exists which could prevent sight loss.

I know that if this becomes necessary then long-winded applications for funding can be requested by my consultant but, let's face it, in that situation I'm not likely to have a lot of time to spare before my vision becomes permanently, and unnecessarily damaged.

I would like to campaign to rectify this appalling situation where English people are being discriminated against and if there was a referendum right now to ask if I wanted to opt out of being English and choose to be part of a united Scotland then I would. I simply don't know where to start with this, but is there anybody out there who has experience of this? I know I don't need to switch from Lucentis yet, but I can't be the only person affected by this and feel I can't simply accept this dreadful and unfair situation and hope someone can guide me with what to do next.

Thanks for listening x

[Raemar]

Hi Kalahuchi

I live in Lancashire and receive Eylea after 16 Lucentis injections. I've never heard of anybody being denied Eyelea because they live in England. Go to the highest authority in your eye clinic and ask them. Ask the Macular Society to assist in this. I think they are fobbing you off on cost grounds! I don't know if Eyelea is more expensive than Lucentis which is £700 per injection. Enquire on the NICE website when're you should find the information and licensing info. Good luck and take care.

[kalahuchi in reply to Raemar]

The Macular Society have confirmed the information I was given is correct and I have made an appointment to see my consultant after my next visit. The NICE website says it is licensed for use throughout the UK but it is not funded for use for pathological myopia in England. Do you have myopic CNV/pathological myopia or is your Eylea for AMD?

[Raemar in reply to kalahuchi]

Sorry Kalahuchi I totally misread your post. I have wet AMD. At least now you have opened the topic and got your answer hopefully. Good luck

[kalahuchi in reply to Raemar]

Thank you. I need it x

[kalahuchi in reply to Raemar]

Thank you for your reply Raemar - I will indeed do all of those things. I'm sure it's all about funding but I'm not going down without a fight. x

[RosMacularSociety Partner]

Dear kalahuchi,

I gather that you have possibly just spoken to us on the Macular Society helpline.

Have you asked your ophthalmologist if they would be willing to consider using Avastin, if your eye does not appear to be responding so well to the Lucentis injections?

The Macular Society could write a letter in support of an application for funding for the use of Eylea if the ophthalmologist is willing to initiate this.

Kind regards,

Macular Society helpline

0300 3030 111

[kalahuchi]

Thank you Rosalyn.

I have just spoken to a lovely lady on your helpline and she has made similar suggestions to yourself. I'm waiting for my next injection in the right eye within the next couple of weeks and will be seeing my consultant a couple of weeks after that to discuss what will happen next, so who knows how my eye will respond (or not) to this one. Does this time scale sound reasonable to you? I teach the mechanism of action of monoclonal antibodies and the immune response to my A level biology students and I'm concerned that I may be producing antibodies against the Lucentis in which case it's not going to magically start working again.

I'll mention Avastin and if the consultant thinks I need to switch drugs after my visit to see him I will let you know so thank you for the offer of help.

I still feel that I shouldn't have to fight for this treatment and this funding discrepancy needs to be addressed at source. Although there are fewer people with myopic CNV than AMD, we are often of a younger age and have dependants so the economic repercussions for us and our families, and indeed of society in general is huge if we are to be denied available treatments or if treatment is to be significantly delayed.

Do you know of a campaign group which I could join? If not then I think it may be time for a call to my MP. x

[RosMacularSociety Partner in reply to kalahuchi]

Dear Kalahuchi,

Our posts have just crossed.

It may be worth emailing your ophthalmologist via their secretary in advance of your next meeting in approximately a months time and outlining your concerns and requests as applicable.

Kind regards,

Rosalyn

[Hidden in reply to kalahuchi]

One possible fly in the ointment is that Lucentis was developed from Avastin and so if you are reacting against one there may be the same issue with both drugs.

There are some new drugs of this type undergoing trials in the USA including an oral one but as ever, these are some way off release for general use.

[kalahuchi in reply to Hidden]

Thanks Rennatk,

I take your point about Avastin.

Fortunately, Lucentis and Eylea are quite different monoclonal antibodies and although they act in similar ways our response to one doesn't affect our response to the other.

I don't reckon the new drugs are going to be approved in time for me but it's a hope to cling onto x

[Hidden in reply to kalahuchi]

Hi kalahuchi

I agree about the different response potential which is why I might find myself with the Ozurdex pellet.

Similarly, I suspect that the new drugs will not be available for me but we can live in hope.

[RosMacularSociety Partner]

Dear Kalahuchi,

We have a member who is not on Health Unlocked but would like to discuss this with you. If you are interested in a phone conversation with them, if you could ring the helpline and ask to talk to me, Rosalyn/ Ros, then I can pass on the members details to you. They have given permission for you to call them.

Many thanks,

Macular Society helpline

0300 3030 111

[Hidden]

Hi Kalahuchi, hope things get better for you x

There is a government site for online petitions which get debated in parliament if they get enough signatures.

Also, there's a site called change.org which I think is more well known but doesn't have the link to parliament (I've seen people use both, getting their message to the widest audience).

I'm sure if you created a petition and posted it here we would all sign it. Maybe Mac Soc would highlight it on their site and comms too. Facebook etc also a good way to tell friends of friends etc .to get more signatures.

Best of luck. X

[kalahuchi in reply to Hidden]

Eyesright, you are an absolute angel; thank you so very much for giving me something practical to do before I go totally mad with worry. I didn't know where to start and this means so much to me.

I'm going for a walk to get rid of a bit of tension and then I'm going to set up a petition; I reckon a chat to the Macular Society may be a good idea. Even if all of this turns out to be too late for me, a change will benefit those who will develop this less common, but just as devastating condition in the future. x

[Hidden in reply to kalahuchi]

Glad to help x enjoy your walk x

Contact your local mp too and newspaper. You could even write into the various tv progs - they all have contact details on line (although don't get your hopes up with them, I've been part of a campaign they've ignored for years 'the chennai 6').

Another thing is check out the House of lords website - they list their interests and contact info - there might be someone to take up the cause there for you.(again. I didn't get far with Prescott but it's worth a try and your cause is not as much of a political minefield as mine was).

[kalahuchi in reply to Hidden]

Thank you; I will try all of the above. You never know who will take an interest until you try. I reckon that is a job for over the weekend. Hope you have a nice weekend yourself x

[Jayral]

Well, kalahuchi, you have opened up another can of worms as also having myopic CNV (even though I was never particularly short sighted!), I too can testify that we are not considered with the same degree of need by the powers that be as those with AMD.

I am in Scotland and, despite presenting with a macular bleed and seeing wavy lines, I was given an appointment 8 weeks later by which time I had further bleeding and scarring. This was in 2013 and NICE hadn't approved any injections for our condition but my consultant went ahead with Avastin injections until Lucentis was approved by NICE in November of that year. For me, it was all too late and my central vision never improved.

We all have devastating eye conditions and it seems unfair that they are prioritised - our consultants know that we would benefit from early intervention and the same drugs as those with AMD but their hands are tied.

Good luck and I hope you get the treatment you deserve and need.

[kalahuchi]

My heart goes out to you. All of these random factors like where we live, how long we have to wait for an appointment and simply the care and humanity (or otherwise) shown by our particular consultants puts us at the mercy of so many people. Of course while they take their time our eyesight fades.

Thank you for your good wishes and I do intend to put up one heck of a fight x

[RosMacularSociety Partner]

Dear kalahuchi,

It may be worth you raising your concerns directly with our Chief Executive Cathy Yelf. She can be contacted by emailing:

[e-mail]

and marking it FAO Cathy Yelf.

Kind regards,

Rosalyn

Macular Society helpline

0300 3030 111

[kalahuchi in reply to RosMacularSociety]

Thank you so much for your suggestion Rosalyn. I have contacted Cathy via twitter over the weekend and she now has my email address, but Chris tells me she is still on holiday so I don't want to disturb her break too much and will wait for her reply. I understand you also have an advocacy service and I think I may need one over the coming weeks or months. If you feel it's appropriate should I ring the helpline?

[RosMacularSociety Partner]

Dear kalahuchi,

I do the advocacy.

It may be worth waiting until Cathy Yelf comes back to you first, but yes, contact me any time. You can always email in the first instance via:

[e-mail]

This is the email address for the helpline.

Obviously contact the helpline with any other queries that we can help with at any time.

Kind regards,

Rosalyn

0300 3030 111

[kalahuchi in reply to RosMacularSociety]

I will wait to hear from Cathy but may contact you via email in the meantime so you have a clearer picture of my predicament. Thanks again x

[new2AMD14915]

Hi , I have wet AMD and I've been having eylea jabs for 2 years after which my eyesight, haemorrhaging and damage is NO different to how it was at the beginning. I asked to be changed onto lucentis because I am very disappointed in the lack of progress. Also ,I was told I couldn't have the eyelea as often as I need it, because of the expense. I have since found out that these jabs; lucentis and eylea, cost upwards of a thousand pound each! I don't understand how that can be possible. Maybe this is why the use is limited. What do you think?