[adminKeymaster]

Just for interest I thought I'd look up the price of Velcade – its about $1500 for 3.5 mg. Its relevant because of the NICE evaluation that rejected it as a first line treatment because it was over £35,000 per QALY. I think they might have got their logic a bit wrong, because if you don't have Velcade then you have something else (that will probably be less efficacious) and that will also have a cost – does anyone else have ideas about this?

Take care

Nigel

[EvaParticipant]

Hi Nigel,
Eva here from Scotland. I think some of the older drugs are a bit cheaper: for example, Thal is cheaper than Rev. I'm sure that Nice will fight to save money. In the end treatments become available when they've been used in other countries for ages and it becomes obvious that we are very backward in funding them.
One of my neighbours who was a surgeon and a psychiatrist died recently of kidney cancer. She was refused a drug that can be accessed in other countries. Of course, she would have died anyway but she might have lasted longer.
In the US people who have very good insurance might get better treatment and those who don't and have very little money can benefit from various schemes to assist them. There is a group of people in the middle who are really struggling though and who have to come up with massive 'co-pays' each month. Some of them have had to sell their homes or use up their childrens' inheritance. I've had medical insurance here for at least ten years. I had a chat with my insurance company and told them about my myeloma. They are very very keen for me to use the NHS for all treatments. When I gave some reasons for going private, at least at times, they said they were prepared to fund one second opinion in London as I live in a more sparsely populated area.This was for the consultation, and not for treatment. The person in charge of my 'case' implied that any attempt to get treatment on the policy would be met by very very rigorous procedures. In the end I was told that there would have to be no NHS treatment available. I always thought that insurance gave us an entitlement to private treatment if that was our choice. I've been paying over a hundred pounds a month for my policy for many years and have continued it even though I've had to stop working. I think it's unfortunate that an insurance company is determined to not lose any money even if someone has a condition as complex as myeloma. Good luck with your Velcade treatment – I haven't had Velcade yet as I was diagnosed almost three years ago.
Best,
Eva

[MinParticipant]

Hi NIgel,
I understand that the funding for velcade is quite complex and if like my husband you do not respond to the velcade then the manufacturers pay for it not the NHS.
I believe that this was the reason he had to have his 4th cycle even though prior to the fourth cycle he was not responding. So essentially by completing the 4th cycle the NHS gets to claim the entire cost back from the pharmaceutical company because it was not effective.
I believe for those people who do respond after they do respond well following the 4th cycle the company provides the rest of the cycles for free. Or something like that! I only know that myeloma Uk helped to get the deal going to ensure that patients in the uk got access to front line drugs
If I got this wrong it was as I remember it at an Info day earlier this month in Newcastle. The main speaker there was Professor Jackson who you will see a lot of on this site in video format. Well worth a watch, very up to date
Min

[PerkymiteParticipant]

I am getting slightly confused here. Velcade is not Revlimide under a diferent name is it?

If it is not what advantage does Velcade have, just a cheaper treatment than Revlimide or somewhay better?

kindest regards

David

[MinParticipant]

Hi David
Revlamid and Velcade are manufactured by two different pharmaceutical companies
Revlamid is like thalidomide you take it in tablet form. for 21 days then a week off. Velcade you get in an injection at hospital twice a week for 3 weeks then a week off.
Not everyone is able to tolerate one or the other, but velcade means your are 'tied' to the hospital and cannot make any plans as it intrudes on your life so much there is a commitment to spending at least a half day twice a week on a day ward waiting for blood test s and the jab to be prepared by the pharmacy for you. It quite tying and each have there own side effects. Both incidentally are accompanied by the lovely Dex!
Its Revlamid that becomes a maintenance therapy and you stay on it for whatever length of time it works for you. One man on here has been using it for over three years.
Love Min

[PerkymiteParticipant]

Thanks for that Min, I never did have the eye for detail:-D

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