[MothasParticipant]

Peanuts.
2 years ago the government gave millionaires a tax cut that equates to 3 billion a year. The cancer drug fund costs 280 million a year. Like millionaires really need a tax cut.

[MicheleParticipant]

Don’t get me started on health tourists and other services offered by the NHS that shouldn’t be free (eg cosmetic surgery for reasons of vanity).

If they want to save money, there are masses of other avenues they could explore first before deleting cancer drugs.

[jeff605Participant]

Hi All, well this has really stirred things up hasn’t it? I’ve contacted Myeloma UK and asked them if they can explain exactly where we stand in the light of these decisions, as I for one am not fully conversant with whats been decided – I just know it’s not good news. I will feedback any answer and information I get. Try not to get too down over this, easy to say I know. Best wishes to all Jeff

[janwParticipant]

I was so emotionally upset this morning when I read the newspaper articles about withdrawal of a number of effective drugs from the cancer fund for blood cancer patients. At present, blood cancer is the UK’s third biggest killer, but unfortunately with little public awareness as compared with other cancers such as breast and prostrate.

Whilst I realise the cancer fund is over subscribed with ever increasing costs, when new drugs are recognised as clinically effective but denied on a cost basis, this leaves patients with little hope of personalised cancer treatment, or ever finding a cure for their cancers and more specifically removes the hope of patients for an effective treatment and a quality life with more time with our families and friends.

Pomalidomide was only available to myeloma patients, when two other treatments had failed, offering them hope of overcoming resistance to the other immunomodulatory agents. The newspaper articles estimate just over a 100 myeloma patients will be affected by denial of this drug. But as the standard treatments begin to prolong life expectancy for myeloma patients, presumably the number of cancer patients being denied access to this drug will substantially increase?

Pomalidomide has gone through the lengthy and costly process of R&D and clinical trials before being recognised as clinically effective and gaining fast track approved for use by myeloma patients in America in 2013, followed by approval in Europe and eventually the UK. I just don’t understand why the drug is only denied in England, where as authorities in Scotland and Wales appear to be able to fund the drug, as well as the rest of Europe. Being part of the EU, we should have cancer treatments at comparable levels with the rest of Europe.

We are extremely fortunate to have Myeloma UK fighting our battles with the Government. However, I feel they need to action our support to lobby the Government and seek justice for myeloma patients. We should be bringing together the 1,000’s of myeloma patients and relatives to the appropriate HQ to protest against the latest decisions. In particular. we should be approaching David Cameron, who promised in 2012 that patients would no longer be denied drugs on cost grounds.

The NHS does have a limited budget, but Like others have also said, when looking at saving and cutting costs in the NHS. One area requiring immediate attention is the abuse by health tourists who take advantage of the health service which is estimated at 2 billion pounds a year (2013) and in reality only a fraction of these costs are ever recovered. The NHS is handing out 5 million european health insurance cards per year with no records being kept of cards being issued to overseas citizens, with apparently some eastern europeans using them in their home country to make the NHS cover costs. Surely, we should be able to put into place effective systems and procedures to stop abuse of our NHS. Two billion pounds would go a long way to provide necessary treatment for UK citizens.

Jan

[susieParticipant]

Jan. I just wanted to say how well you have put it. We have to stand up as one body to try and get this decision overturned. It’s bad enough to cut one drug but two ! If Scotland and Wales can have these drugs let them explain why not in England.
I shall be emailing a lot this w/e. Health Secretary, David c and my local m p .
Come on everyone the fight must start.

[MothasParticipant]

I’m afraid this is what you get when you vote in a party hostile to the very idea of the NHS and who is prepared to give a 3 billion yearly tax cut to 1% of the country’s millionaires. It doesn’t help that we have health tourism but the 1 billion figure quoted above is hugely contested with independent organisations putting the figure at £110 million to £280 million and others as little as 0.001% of the NHS budget. Jeremy Hunt himself declared in parliament that the figure was 10 million. Frankly it’s a sideshow and one the government is happy whip up as it distracts attention from the real issues.

https://fullfact.org/health/costs_health_tourism-37227

We are the 5th richest country in the world, health tourism or not we have more than enough financial assets to support this kind of treatment.

I will be writing to my MP and asking why the CDF fund hasn’t been adequately replaced, and why the government hasn’t kept its manifesto promise to continue to fund access to new cancer treatments.

• This reply was modified 8 years, 8 months ago by  Mothas.

[pottermanParticipant]

Promises,  promises, promises before they get in and then they back track. We need these drugs. They are proven to work no matter what the cost.

[finnParticipant]

These drugs, and Revlimid especially, are routinely used for myeloma patients and therefore I think that the approach by Myeloma UK to get these drugs funded from the NHS normal drug funds instead of the special CDF fund is a correct one. I hope they will get this approved in the next two months!

[avantrompParticipant]

Hi all
I live and am being treated in the Netherlands. It has just been reported here that Celgene, manufacturer of Pomalidomide (and Revlimid), has reached an agreement with Dutch haematologists and 6 major health insurers to provide Pomalidomide on the basis of no-benefit-no-cost. Maybe this is something to campaign for. Revlimid, that I currently take, is standardly prescribed.
I cannot imagine a situation in which Revlimid is not prescribed. It is a life-saver for me.
Annette

[dickbParticipant]

Er, can we keep political views out of this and just stick to the facts and perhaps how we can lobby to have the policy changed.

[MicheleParticipant]

Yes I agree Richard. Please don’t use the forum to air your personal political views. They are your opinions and not necessarily everybody elses.

I’ve decided that worrying about the current decisions won’t achieve anything and am going to wait to see what actually happens.

[alexplypinParticipant]

My oncologist has responded, to state that she is unaware whether this will apply to existing patients – or prevent new ones being given the opportunity. However, this has to be clarified.

Whether, or not, is is disgraceful to be put in the position where I might get treatment – and someone else not – merely because of a discrepancy in timing.

 

[alexplypinParticipant]

I started with Thalidomide and Dexamethasone in May 2011, which resulted in an infection – to my heart. This meant that I had to have my aortic valve replaced in April 2012.

In December 2012, I had a stem cell transplant, which kept me in partial remission until November 2013. I was then put on Velcade, which crippled me – and did not work anyway. So, in March 2014, I was transferred to Lenalidomide and Dexamethasone. I had a break from this in November 2014, when a failed attempt was made to harvest more of my stem cells for a 2nd transplant.

Most patients are probably aware that subsequent stem cell transplants have much higher mortality rates than previous ones, and the patient is not the decision maker for such an expensive procedure. I also have 7 younger siblings, willing and able to donate whatever is necessary, but this also carries additional risk – which the professionals will not consider.

In April of this year, I reverted to Lenalidomide with Dexamethasone, and was transferred to Pomalidomide with Dexamethasone in August – when the Lenalidomide had stopped working. The Pomalidomide/Dexamethasone regime seems to be working, and the Hospital Pharmacy has apparently told my Oncologist that my treatment will not be affected, as an existing patient. If it works for me, I do not see why it should be denied others.

For those that have not seen it, this is the CDF Report from last Friday.

• This reply was modified 8 years, 8 months ago by  webteam. Reason: Removed extra tags

[alexplypinParticipant]

I have no idea why this website adds a load of unnecessary guff between paragraphs. This is a legible version of my previous post.

I started with Thalidomide and Dexamethasone in May 2011, which resulted in an infection – to my heart. This meant that I had to have my aortic valve replaced in April 2012.

I had a stem cell transplant, which kept me in partial remission until November 2013. I was then put on Velcade, which crippled me – and did not work anyway. So, in March 2014, I was transferred to Lenalidomide and Dexamethasone. I had a break from this in November 2014, when a failed attempt was made to harvest more of my stem cells for a 2nd transplant.

Most patients are probably aware that subsequent stem cell transplants have much higher mortality rates than previous ones, and the patient is not the decision maker for such an expensive procedure. I also have 7 younger siblings, willing and able to donate whatever is necessary, but this also carries additional risk – which the professionals will not consider.

In April of this year, I reverted to Lenalidomide with Dexamethasone, and was transferred to Pomalidomide with Dexamethasone in August – when the Lenalidomide had stopped working. The Pomalidomide/Dexamethasone regime seems to be working, and the Hospital Pharmacy has apparently told my Oncologist that my treatment will not be affected, as an existing patient. If it works for me, I do not see why it should be denied others.

For those that have not seen it, this is the CDF Report from last Friday.

• This reply was modified 8 years, 8 months ago by  webteam. Reason: Removed extra tags

[alexplypinParticipant]

No it isn’t, but the attached Word document is.

[Author]

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