Leukaemia and L...
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Response to the removal of blood cancer drugs from the Cancer Drug Fund

Leukaemia and L...
Posted by
12 Jan 2015

Leukaemia & Lymphoma Research is extremely disappointed by the news that a number of blood cancer drugs are to be delisted from the Cancer Drugs Fund (CDF). In total, five drugs will be delisted for eight different indications. The changes will come into force in March 2015. 

It is important to note that existing patients being treated with any of these drugs will still be allowed to take them. 

The delistings apply specifically to certain ‘indications’ for different types of blood cancer (an indication may be for patients at a specific stage of disease, or for those who have already been treated with other drugs previously).

The CDF was set up in 2011 to give patients in England access to cancer treatments ruled too expensive for routine use on the NHS. There are around a dozen different drugs used to treat blood cancers that are only available through the Cancer Drugs Fund for certain patients - a significant proportion of the drugs on the list. Today’s announcement comes as the result of an evaluation that was launched at the end of last year of the cost-effectiveness of many drugs available through the scheme.

There is some positive news for blood cancer patients in the announcement too. While Bortezomib has been removed for the treatment of relapsed mantle cell lymphoma, Ibrutinib has been added to the Cancer Drugs Fund for these patients, which is exciting news. While Ofatumumab has been removed for CLL, Ibrutinib has also been added for these patients. 

Bortezomib (also known as Velcade) will no longer be available through the CDF as an option for myeloma patients who relapse after previous treatment with the drug. Patients who relapse who have not received the drug before can continue to access Bortezomib through the CDF. Other treatments for chronic myeloid leukaemia, non-Hodgkin lymphoma and chronic lymhocytic leukaemia have also been delisted. (Full list below).

Professor Chris Bunce, Research Director at Leukaemia & Lymphoma Research, said: “We are very concerned indeed that so many drugs for blood cancers like leukaemia, lymphoma and myeloma have been delisted from the Cancer Drugs Fund. The decision to remove effective drugs from so many patients represents a dramatic step backwards. Many of these treatments can significantly prolong survival times and provide a good quality of life for diseases that can have devastating symptoms. In many cases, patient populations for the drug indication are very small, so the total cost burden to the NHS is actually relatively low.

“A constructive dialogue between all parties is needed to get to a long term and sustainable system that ensures patients can access the treatments they need.”

Speaking regarding the de-listing of Bortezomib for myeloma patients who have had prior-treatment with the drug, Dr Andrew Chantry, Leukaemia & Lymphoma Research Medical Advisor and Consultant Haematologist, Royal Hallamshire Hospital, Sheffield, said: “This decision is extremely unfortunate and will substantially disadvantage many patients who have previously benefitted from this important drug. Many patients respond extremely well to Bortezomib and may well not respond nearly as well to other myeloma drugs. This will shorten their lives and hasten the return of considerable suffering and often lead to a terminal decline.”

The full list of blood cancer drugs and their indications that have been delisted:

Remember, if you are taking any of the drugs for any of the indications below, you will be allowed to continue taking them.

Bosutinib (Bosulif)  for the treatment of blast phase chronic myeloid leukaemia refractory or intolerant to nilotinib or dasatinib
Bosutinib (Bosulif)  for the treatment of blast crisis Chronic Myeloid Leukaemia
Dasatinib (Sprycel) for the treatment of lymphoid blast phase chronic myeloid leukaemia with resistance or intolerance to prior therapy
Ofatumumab (Arzerra) for the treatment of chronic lymphocytic leukaemia
Bendamustine (Levact) for the treatment of Rituximab refractory low grade non-Hodgkin lymphoma
Bortezomib (Velcade)  for the treatment of  relapsed/refractory mantle cell lymphoma
Bortezomib (Velcade)  for the treatment of  relapsed Waldenstrom’s macroglobulinaemia
Bortezomib (Velcade)  for the treatment of relapsed/refractory multiple myeloma with prior response to Bortezomib

Comments

Anonymous
12.01.2015

Absolutely ghastly!

12.01.2015

It's always deeply dissapointing to see that money is barrier to life saving drugs when so many work so hard to achieve these marvellous things to improve the lives of those in need. A sad day for all.  

Anonymous
12.01.2015

Disgusting, so much spent on developing drugs that will improve peoples lives then to be denied the opportunity to live. Why are we raising funds to improve our knowledge of these devastating cancers then to be told we can't have the benefit.

Anonymous
13.01.2015

I don't understand why in this country it's all about drugs available on the NHS or nothing! Why don't people get the choice to at least pay for their meds if they can afford it? Or at least pay towards the cost? There's no need to pull these effective drugs completely because the drug is too expensive for the NHS. Rather let people have access to the drug so long they can contribute to the cost of it. It's better than just letting people die!

13.01.2015

I absolutely agree with you Danny.

Ellie Dawes
14.01.2015

Hello! Obviously this is disappointing but it is important not to be downhearted and look at this news in the wider context of the impact of the work we all do together to beat blood cancer. There are so many treatments that are only available because of our incredible fundraisers - remember that when we started back in 1960, blood cancer was effectively a death sentance. Today, thousands and thousands of people go on to live full and happy lives.

One of the ways we use some of the funds you raise is to speak up and represent patients in decisions like this. Our policy team have had great successes this year, for example, meeting with the Scottish Medicines Consortium about the impact drugs can have for paients, and have changed decisions about whether these drugs should be available (see: https://leukaemialymphomaresearch.org.uk/news-item/nhs-scotland-provide-...). In Scotland they do not have the Cancer Drugs Fund which is an extra measure designed to fund more drugs for cancers specifically.

So your support is making an enormous difference in so many ways! If you would like to see more drugs available to more blood cancer patients the best way to bring that about continues to be: support Leukaemia & Lymphoma Research and the work we do. :)

14.01.2015

Hi Claudine - these drugs may well be availalbe for patients privately for those that can afford it. Unfortunately the price of  the drugs and treatment, which can reach hundreds of thousands, are prohibitive for most people. 

Anonymous
07.02.2015

Its absolutely disgusting that these drugs are being stopped.When we can fight other countries wars we CAN afford these cancer drugs.

Anonymous
07.02.2015

Dear Lord, Please bless the soul and spirit of Jak Truman, May those inpower in government fund far more research into cures for blood cancer with a greater effort and realisation of how so many suffer from this awful disease. Amen.

Anonymous
08.02.2015

Ok Henry - so are you saying that we CLL patients who are categorised as 'watch and wait' ( I have been watching and waiting for 2 years now!), whose present treatment is 'no treatment' until we need treatment, have no chance of the NHS funding research into nipping the Watch & Wait category in the bud BEFORE it reaches the present 'Need Treatment' category?

Anonymous
08.02.2015

Disgusted by this development. Strange how the NHS can pay a pension to a woman manager who retires then 24 hours later returns to the same job at a large salary and continues to claim the aforesaid pension as well.
But the powers that be will no longer fund treatments that prolong life for cancer patients.

Anonymous
08.02.2015

Bendamustine has shrunk my Tumor, I'm now on a 2year course of Rituximab,now I hear its going to be delisted . God for bid it grows back ; does anybody care !

09.02.2015

Hi Bryan,

While Ofatumamab is no longer available on the CDF, there is good news for CLL patients in that Ibrutinib has been added, which many doctors see as a more effective at treating CLL. 

In terms of research, as a charity we are funding research into improved predictive testing for CLL patients, so that those patients who need early treatment can be identified, along with those patients that may never need treatment 

Anonymous
09.02.2015

Thanks for the update Henry. Re research into improved predictive testing for CLL patients - are trials open to 'W&W' patients, and if so where can one seek the sources of application - given the particular individual problem which in my case is a steadily rising white blood count & low platelets?

10.02.2015

Hi Bryan - I think that particular research is still in the lab stage, but if you'd like to talk through any  concerns you have about watch and wait and what your treatment options are, my colleague Reta, Head of our Patient Services team,  would be really happy to talk to you. She said if you drop her an email with your number, she can give you a call at a convenient time -Her address is RBrownlow@beatingbloodcancers.org.uk

best wishes,

Henry