[ianbParticipant]

Hi Gerry, sorry to hear things are not too good.

Also sorry to see that your consultant said that only 1/3rd of patients have a successful outcome, that concerns me no end. The drug info sheet rates the success rate at nearer 61% as a mono treatment. When used as a combination treatment this increases to 83%-93% depending on your starting condition. Much greater than 33%. What really gets me here as well as the discrimancy is that almost everyone else, including NHS Scotland have approved this drug for use as a combination drug based on phase III trial results which NICE are happy to ignore under the guise of gathering more data. Data which, I assume, has all ready been supplied under the Phase III trials, or why would others be saying it is the best approach. It is all down to cost, are we worth the spend on better drugs over the lesser live saving results and cost of existing drugs. I cannot see any acceptable reason for NICE to take this approach if any care or compassion was given to the patient and their families. Everything is financial.

Good luck, and i wish you well.

ian.

[davidainsdaleParticipant]

Hi Ian and All

Just a comment along the lines that the Policy and Public Affairs work which Myeloma UK do to influence the organisations such as NICE and NHS is really important.

It’s great that new drugs are coming along but no good if patients can’t access them – remember the original campaign by Eric Lowe ago to get patient access to Velcade?

The reality is that we live in a world where policy and politics cannot be ignored so it is vital that Myeloma UK fights for our corner.

Hope this helps.

David

[galaParticipant]

Generally, the policies are very short-sighted. it has now been established that monoclonal antibody drugs, which Daratumubab is an example of, when used as a front-line therapy in combination with either Velcade, Revlimid or Dexamethasone have superior affect on the overall outcome, producing a deeper response upfront. The earlier MM processes are switched off, the better overall and progression-free survival will be. Unfortunately, in the UK they still have it all in reverse and new drugs can only be accessed by people who already have been heavily pre-treated and whose MM is now very advanced and resistant to treatment. Then it is easy to say that the drugs are not as effective as one would wish them to be. Money can be saved considerably, if fewer people have early or frequent relapses due to smart use of novel drugs from the onset.

[GerryParticipant]

Hello Ian

Good luck with the Daratumumab start on Monday – all good wishes for a positive response.

I am 77 years of age and was looking forward to Daratumumab monotherapy to hopefully give my body some respite from the four regimes of chemotherapy I have had. Not to be……and I agree with you that as most other places approve Daratumumab from Phase III trials, why can’t England and why do they need further data? Is it just the monotherapy they require evidence for? Finance and age/MM stage come to mind.

Anyway, thanks for the contact – good to hear other views – and sending all good wishes to you and your treatment.

Gerry

[GerryParticipant]

Hello Gala

Interesting to read your email and thanks for the helping me to interpret what is going on. The more chemotherapy one has, obviously there is less chance of anything working positively, which is depressing.

I was certainly looking forward to the chance of Daratumumab monotherapy, but no luck. My wife has written to our MP and is willing to go to the media if something is likely to come from that, but it is all rather heavy at this stage of MM and so very disappointing that we should even be thinking along these lines.

Thanks again for the very informative contact.

Gerry

[Author]

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