Withdrawal of drugs and National blood cancer awareness month

[bruddery]

So much for this. Just read the dreadful news of 23 cancer drugs to be withdrawn including some for rare blood cancers. Anyone know which ones ?

[piggie50]

Hi Bruddery,

I just found these on the Telegraph website..

Leukaemia

Bosutinib when used in the treatment of some Chronic Myelois leukaemia, including where patients have an intolerance for other treatments

Dasatinib, for lymphoid blast crisis chronic myeloid leukaemia

Ofatumumab, for chronic lymphocytic leukaemia

Lung cancer

Pemetrexed when used to treat advanced non-squamous non-small cell lung cancer

Lymphoma

Bendamustine for some cases of non-Hodgkin's lymphoma

Bortezomib in treatment of relapsed/refractory mantle cell lymphoma

Bortezomib for relapsed Waldenström macroglobulinaemia, a rare type of non-Hodgkin lymphoma

Myeloma:

Bortezomib for some cases of relapsed multiple myeloma

Best regards

Judy

[bruddery in reply to piggie50]

Thanks for that Judy - I guess we just have to keep rare blood cancers in the spotlight. Janice

[piggie50]

Ps. Also found this

Just three new drugs will be funded, following the review: Panitumumab, a treatment for bowel cancer; Ibrutinib, a treatment for Mantle cell lymphoma, a type of non-Hodgkin lymphoma; and Ibrutinib for use in chronic lymphocytic leukaemia.

I vaguely remember seeing Prof Claire Harrison talking about Ibrutinib? But I may be wrong. I guess as new drugs come along that we all benefit from older ones have to be withdrawn. Such a worry though for people that are relying on them.

X

[Paul42]

I believe if your already on them then they will continued to be provided.

However that is no comfort for those that will now miss out. It seems ironic in blood cancer awareness month so many blood cancer sufferers will be affected. Its estimated a total of 5500 patients will be affected by this news, of which 1800 will have blood cancer.

I know there isnt a bottomless pit of money but some things get me angry. The cancer drugs fund will be about 100million over budget but thats nothing compared to the money that the NHS spends on conditions relating to obesity, which is reported to cost the NHS around £6bn a year currently.

My local ambulance service is currently replacing ALL 272 of its ambulances so they can carry patients with weight in excess of 50 stone. Thats not going to be cheap and probably would pay for the cancer drugs fund for several years on its own.

I do realise is an emotive subject when you discuss things like that, and i do realise SOME people cannot help having weight issues, but the message this seems to send out is:

Look after yourself but unluckily get a life limiting/threating illness like cancer and you may or may not get the treatment you want, but dont look after yourself, gorge on food until you are seriously obese and the NHS will bend over backwards to treat you.

[bruddery in reply to Paul42]

I agree that the funds have to be distributed but replacement of all those ambulances is horrifying. I know some people cannot help being obese - due to genetics etc. - but many people have a choice - we have none and even less now!!!

[Paul42 in reply to bruddery]

Indeed, as i said it is an emotive topic and agree some people cannot help their weight issues.

I often think back to a girl i used to work with, i wouldnt describe her as obese but she was a good 20 stone in weight....always maintained it was her genetics and nothing she could do......i did have to raise the odd eyebrow at the regular fish and chips for dinner, and daily visit to woolworths for a pick and mix tub mind

[beetle]

There are other issues too that cost the NHS needless money. Take drug abuse and alcohol abuse. Nobody could blame those on their genes could they? Even if there might be a genetic tendency there are still life choices to make - e.g. the fish and chips and pick and mix.

I certainly would not want to come over as holier than thou as I do not live a perfect life either but I do try and take care of myself and limit my indulgences.

I see Ruxolitinib is not on the list of culled drugs which will be a relief to many who are perhaps destined to start taking it in the near future for MF but I wonder who makes the decisions and on what grounds the decisions are made. There are different drugs available in different parts of the UK too. Ruxolitinib has been approved for use by the NHS in Scotland for example. How many cancer sufferers are able to follow the postcode treatments though?

It is extremely distressing for people who know that drugs are out there that could help them but they are not available because of cost. I think we are still better off here than in may other countries though so perhaps we need to count our blessings at the same time as ranting!

[bruddery]

I guess life is tough for many. As you rightly say we can only do what is right for ourselves. I'm not holier than thou either but money is being siphoned off and I suppose each group feels they're entitled to a share of the pot! Have to just keep fighting! Good luck.

[Superwoman]

I also read in the Daily mail today that they are taking off Revlimid and Imnovid, Therapies for bone marrow cancers, very good read as it says that we are lagging behind richer countries in these treatments for rare cancers.

[Twinkly]

Don't get me started on obese patients ,,I sit in our hospital waiting areas ,thinking how awful it is ,so many very large people stuffing food into their mouths as they sit waiting for their drugs to be dispensed ,often for diabetics ,,in our cafe area is ""Berger king "",pizza ,as well as baguettes so big you could fall off them !! It seems all waking hours we must eat ,or sit watching cooking programmes on television ..no wonder we are brain washed !! Twinkly. X

[bruddery]

How very true Twinkly. I work in the area of mental health in the community. I remember one time working with someone who was over 40 stone.... Had to request special furniture for them to sit on. They had been advised they could eat dry crackers for a snack - they believed that to eat a whole packet in one sitting was okay and acceptable... And then they wondered why they didn't lose weight! Ah well guess we all have our problems. But mine - just like yours - are not self inflicted. Bruddery

[KevinJH]

Has a can of worms been opened here ? Very emotive subject..... So, how about bringing in some funds to the NHS by charging people who have been treated in A&E on a Friday and Saturday night for the 'self-inflicted injury' of being insensibly drunk ? Send 'em a bill (or charge them at point) and put the money back in the system to pay the nurses more and/or put towards cancer treatments ? Work's in my book

[Paul42 in reply to KevinJH]

Its a good idea in theory, but people are often considered 'drunk' if they are above the legal driving limit for alcohol...you see people referred to as '3 times' the legal driving limit making out thats a lot, but in fact its probably 3-4 pints tops.

I could easily see people who get punched, injured as a result of 'someone elses' drunken behaviour but then getting charged because they themselves had had 3/4 pints so officially classed as drunk.

The decision to charge might be down to opinion rather than fact.

[bruddery]

Good point but there's many a person would object to paying. In Ireland you wont get seen in A and E without paying €100 - unless you have a full medical card....

[Hidden]

So it seems that all these medicines have been withdrawn because people are overweight or is that just an easy target?

Maybe you could flip your blame to fit people who do sports and keep fit and then fill the A&E departments with their injuries, some of whom have long term care needs.

People who need care for Anorexia/Bulimia is also a good flip.

Those that smoke, take drugs, alcoholics, steroid users those that aren't as good at driving as us and crash their cars- none of these should get help either, or should they?

Removing help from anyone is wrong so why pick on this group just because they are not what you see as ideal?

[Paul42 in reply to Hidden]

I dont think anyone has said that, i believe whats been said is that the distribution of money seems unfair.

Take my example, does it seem fair or appropriate to replace 272 ambulances so that they can ALL carry people who exceed 50 stone in weight, which in itself will be a huge cost. Yet get Cancer through no fault of your own and find you are refused appropriate treatment because there are no funds to treat you.

I agree also that people who smoke, take drugs, alcoholics are a huge drain too.

All i am saying is if i was someone affected by the removal of drugs which could extend or make my life better because i have cancer, yet i find myself unable to get them and see that someone who has not only failed to take care of themselves, but literally abused their body, is getting any treatment they need. I would find this unfair.

[bruddery]

Not picking on any particular group as I said early on we all have our problems. We can only look after ourselves. There should be a fair distribution of resources - that's the best we can hope for.

[Hidden]

Paul, I agree that the ambulance thing seems extreme.

However my belief is that the biggest drain on the NHS is its staff. Besides it being management top heavy there are too many positions being filled through the use of Agency staff at both Doctor and Nurse level. They are trained by the NHS then leave join agencies and basically backfill positions of agency staff on double the cost to the NHS, to the benefit of their pay packet.

Maybe if the Billions these agency staff cost the NHS were stopped then the Government might not be removing drugs from the list.

[Paul42 in reply to Hidden]

It is probably like trying to fix a hole in a dam with a sticky plaster trying to sort the NHS out. We are lucky to have it, and I have to say my care has been fantastic since i was diagnosed (in the main).

[bruddery]

Agree with you completely. At least there is an NHS system and care is offered to all. I've come across lots of really nice haematologists. Consultants etc. Long may it continue