[GerryParticipant]

Hello! I’m hoping someone may relate to my history.

I was diagnosed with Multiple Myeloma, light chains, in 2012 and have since had four treatments of chemotherapy. Our consultant wanted Daratumumab for me but NICE could not commit as to how long before licensing in England. Therefore the fourth chemo was started to cope with the increasing light chains.

I was so pleased to hear that Daratumumab had the go-ahead soon after, only to be told that there is a ruling of 3 chemo treatments only and therefore I am not eligible, especially as this was not evident at the time when the fourth session was administered, which maybe could have been delayed if we had known the waiting time would be so short for the Daratumumab.

Obviously wrong place, wrong time, but I would be interested to know of anyone else in this same position as I can’t possibly be the only one!
Gerry

[paulapurpleParticipant]

It does seem really tough doesn’t it. I have had three chemo treatments, all of which have failed to reduce my light chains significantly. Daratumumab is an option for me, but like you I could so easily have missed it. The only reason I didn’t start on another option is they were not sure what to try and have done some cytogenetics to inform further treatment; the results should be thorough this week and I see my consultant next week. Hopefully they will change their minds soon; you really would have thought it would have been fourth line or more.

Good luck

Paula

[GerryParticipant]

Thank you for your reply Paula – yes, it does seem really tough. I was hoping that the numbers affected would put some pressure on the ruling. Let’s hope so as it was really hard to accept ,hopes dashed not knowing the restriction in the first place. Anyway, I hope your news is constructive and wish you lots of luck with further treatment. Let me know how you get on.

Gerry

[GerryParticipant]

Paula – just as a matter of interest I have joined a petition so let’s hope the weight of opinion might be an influence. Feel I have to try something. Good luck with your next appointment.
Gerry

[paulapurpleParticipant]

Thanks Gerry.

[galaParticipant]

Hi Gerry

What petition is that? I would like to sign it also. How can I access it?

Thank you!

[GerryParticipant]

Hi Gala
The petition is about the fact that although Daratumumab is now licensed For use in the UK it has stated that it is for those who have had three chemo regimes only. I have had four, the last being because although Daratumam seemed to be my best option, NICE could give no indication when it might be available. As it happened, we could have waited for the short time.
The petition is to appeal for those of us who have just missed out. It is run by 38 degrees and if you just access DaratumumB Petition on Google, you will be able to sign.
Hope this is clear and that you feel able to support. Thank you.
Gerry

[paulapurpleParticipant]

I’ve signed the petition Gerry and shared it on the UK Myeloma Support group Facebook page.

Paula

[galaParticipant]

Thank you, Paula. I have applied to join the group on Facebook.

[ianbParticipant]

Hi, I am starting Daratumumab on Monday as a 4th stage treatment as per the Nice approval, based on the phase II level tests. All well and good, until you find out that most of Europe including Scotland  have approved it for use as a combination drug based on the results of the phase III level tests, which show are huge increase in success. Nice have openly stated that they feel they need more data so they can evaluate if the benefits of patients living longer against the cost of treatment. Basically is human life worth our expenditure. I do find this a rather disgusting and morally inexcusable. Why are Nice and the English NHS playing GOD.

BTW, I also find it disgusting that the rules mean you miss the opportunity to potentially benefit from this drug so will now go and sign the petition.

Ian.

[ianbParticipant]

Potition signed and shared on my FB page for more sigs.

Ian.

[galaParticipant]

I also signed the petition. It is astounding that the obvious and evidenced treatment options are denied, when they are life-saving! Darzalex is used in combination, I think, in all developed and some developing countries, except England. This is very sad. Also sad that people after four lines of treatment are virtually written off, though if the treatment works the life can be extended for months, maybe years. My sister has been denied Darzalex recently because of the cost, not for any clinical reason, as her doctors all agree that this is what she now needs. It makes me very angry and scared.

[GerryParticipant]

Thanks to all who have signed and shared the Daratumumab petition – still hoping the weight of opinion may be an influence. Really appreciate any support – thank you.
Gerry

[ianbParticipant]

Hi I am picking up a few sigs and shares and will keep sharing where I can. This could so easily have been me.

Has there been any thought in taking this injustice and what can only be described as moraly wrong to the media to try and get this story more public?

Ian.

[GerryParticipant]

Thanks Ian for voicing what we in this position must all be thinking.

I shall write to my MP and see what the situation is there, but have thought that the pharmaceutical company responsible for this drug had not provided the evidence for those who have had four sessions of chemo already. It does feel that I and others have been written off as not being financially viable.

I shall push forward – both with the MP and with your idea of approaching the media – but energy is sadly lacking. I was told that only one-third of trial patients had a successful outcome with this drug and that is supposed to make it all OK? One does like to have a choice.

Gerry

[Author]

Posts