US health chief becomes new NHS boss…

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The appointment of the “US health chief” as the new NHS boss worries me too. The following article appeared on the BBC last week:

A senior executive at a private US health firm has been appointed to lead NHS England – the most powerful body in the health service. Simon Stevens, who has worked as an NHS manager and acted as a health adviser to Labour, will take over from Sir David Nicholson in April.
http://www.bbc.co.uk/news/health-24635890

I’d echo the comments from the Unite representative – was there really nobody in the current NHS structure or the Third Sector capable of doing this job? I believe that there are many people in government who would like to see the privatisation of the NHS, in some areas we have already seen this happen. These American medical values are worrying and represent a polar opposite to a service that should be free at the point of delivery. if we need reminding of those guiding principles again:

Aneurin Bevan, on July 5 1948, the NHS was based on three core principles:

  • that it meet the needs of everyone
  • that it be free at the point of delivery
  • that it be based on clinical need, not ability to pay

These three principles have guided the development of the NHS over more than 60 years and remain at its core.
http://www.nhs.uk/NHSEngland/thenhs/about/Pages/nhscoreprinciples.aspx 

I hope that I’m being cynical again, after-all what type of barbaric society would allow medical care to hinge on a person’s wealth?

Cancer Drugs Fund extended until 2016

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Whilst I applaud and welcome the news that the Cancer Drugs Fund (CDF) has been extended until 2016 with a budget of £200m a year it’s important we don’t see this as a win and look for the next battle. It is likely that this ‘new’ £400m has been top-sliced from the NHS budget in a similar fashion to original CDF thereby creating a problem at another level.

Let’s also not forget that the CDF was established in order to provide a means by which National Health Service (NHS) patients in England can get cancer drugs that are not routinely available on the NHS. This includes drugs like dasatinib (treatment for CML – Chronic Myeloid Leukaemia) that effectively saves lives (like mine) but for some misguided reason are rejected by NICE (National Institute for Health and Care Excellence). The new value based pricing (VBP) system that we were expecting next year appears to have been swept under the carpet, presumably because when the government did the sums it was going to cost them more than £400m. So our new £400m is a stay-of-execution. Get the next election out-of-the-way, note that this 2 year extension ties very nicely into the coalition term, and make an unpopular decision at the beginning of the next term if the election is won. In the meantime the Conservative party can bang their drums over the next few days at the party conference to the tune of being saviours of cancer patients everywhere. Not sure how people who are suffering with other illnesses are going to feel about that one.

Even I’m astounded by the level of my own cynicism but in this case I feel it is well founded. The complete and utter failure of VBP to even emerge from the starting blocks and the countdown to the end of the CDF left the coalition with no alternative.

Patients deserve the best treatment. We should not be held hostage by pharmaceutical companies or be pawns in politics. Much of the problem lies with NICE, their flawed processes and their reliance on limited information about the clinical effects of new products supplied to it by the pharmaceutical industry. There is much to unpick. In the short-term we’ll save lives and I can’t be angry about that but in the long-term the system will still be in a mess. What we’ve been presented isn’t a solution, it is another finger in the dam and I’m losing count of the number of holes.

Kris Griffin

BBC NEWS: Cancer drugs fund ‘to be extended’ until 2016

SKY NEWS: NHS’ Life-Extending Cancer Drug Fund Extended

The Guardian: Cash injection to keep cancer drugs fund running for two more years

 

All Party Parliamentary Group on Cancer (APPGC) consultation

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Just wanted to drop this link in to a very important consultation:

The All Party Parliamentary Group on Cancer (APPGC) is seeking the views of the cancer and wider health community about what should be the cancer priorities of each of the five new NHS England ‘domains’. And we want to hear your views. Respond to the consultation.

http://www.macmillan.org.uk/GetInvolved/APPG/Cancer-Priorities-Consultation.aspx#Takepart

Thanks,

Kris

Nice’s drug-approval formula is flawed, warn researchers

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Sorry about the break in service, I’ll start back with some older news but well-worth documenting here nonetheless. It does back to the argument for personalised treatment once again. Kris

Nice’s drug-approval formula is flawed, warn researchers

The method used to assess which drugs should be recommended for widespread use on the NHS is “flawed”, researchers have said.

The formula used by the National Institute for Health and Clinical Excellence (Nice) should be scrapped, according to the authors of a European Commission-funded study.

The method, called quality-adjusted life years (QALY), fails to reflect personal differences about medical outcomes, they said.

The QALY method is used to assess the value of new drugs for patients in England and Wales. The method involves looking at the cost of using a drug for a year and weighs it against how much someone’s life can be extended and improved.

The authors of the report, who present their findings at a conference in Brussels today, surveyed 1,300 people across the UK, Belgium, France and Italy about the way they rate different medical outcomes.

The responses varied “hugely”, the European Consortium in Healthcare Outcomes and Cost-Benefit research (ECHOUTCOME) team said, adding: “The way people rate different medical outcomes is personal, and cannot be summed up by a neat formula.”

Some of the foundations of the formula were scrutinised. For instance, the assumption that someone who prefers 10 years of healthy life to five years, will also prefer 10 years in a wheelchair to five years, did not always reflect the views of those surveyed.

Project leader Ariel Beresniak said: “The research provides robust scientific evidence that QALYs produce hugely inconsistent, wrong results, on which important decisions are being made.

“Agencies such as Nice should abandon QALY in favour of other approaches. European Health Technology Assessment agencies currently looking to adopt the Nice model must seriously reconsider.”

Gerard Duru, emeritus research director in mathematics at the French National Centre of Scientific Research, said: “The underlying assumptions of the QALY outcome are very theoretical and are not verified in a real population.

“The QALY indicator is not a valid scientific scale. It is impossible to know what we are measuring, and therefore impossible to base a formula upon it.”

A Nice spokeswoman said the study was “rather limited”.

She said: “When we want to find out whether a new treatment provides more for patients than current practice, and whether any improvement in quality or length of life justifies the price the NHS is asked to pay for it, we need to use a measure that can be applied fairly across all diseases and conditions.

“The QALY is the best measure anyone has yet devised to enable us to do this.

“Economists will argue about the precision of the QALY methods and it’s not perfect. But it’s based on solid research and uses a way of measuring how quality of life changes when using different treatments, which is the best we have available.

“It’s developing and improving all the time and the criticisms in this, rather limited, study haven’t shaken our confidence in its value to Nice in helping make decisions on the best way to use new and sometimes very expensive drugs and other health technologies.

“QALYs only help to inform decisions about what the NHS should provide. The final decisions are taken by people who work in the NHS, informed by the views of patients, manufacturers and academics.”

ELLA PICKOVER   FRIDAY 25 JANUARY 2013

http://www.independent.co.uk/life-style/health-and-families/health-news/nices-drugapproval-formula-is-flawed-warn-researchers-8466904.html

Leukaemia Care: Patient and Carer Conference 2013

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Yesterday was the Leukaemia Care Patient and Carer Conference held at Worcester Rugby Club. Anyone who reads this blog will know how fond I am of Leukaemia Care and the event was tackled with the usual friendly, welcoming attitude we’ve come to expect from the family. Doctor Richard Taylor, independent member of Parliament for Wyre Forest between 2001 and 2010 and co-Leader of National Health Action Party, facilitated the day. As President of Leukaemia Care he was the perfect choice to ensure the day ran to time and bring order to discussions.

The day started with a presentation on ALL (acute lymphoblastic leukaemia) from Monica Else, a senior scientific officer from the Institute of Cancer Research. Monica’s husband, a patient,also attended and they provided a fantastic insight into how the science translates into real life. This was followed by the inspiring Lisa Nelson who, although enduring two transplants, brought optimism and courage to the stage. Tuney Thomas, a clinical nurse specialist from Worcestershire Royal Hospital spoke about chemotherapy and cut through the science and rumour with panache. Deborah Alsina, CEO of Bowel Cancer UK, spoke from a carer’s perspective as her husband has leukaemia. Their story of imatinib, dasatinib and babies struck a chord with me and it has been a long while since I have been captured by a speaker so much. I’m not sure anyone in the room wanted her to stop.

After a very tasty lunch break with the opportunity to catch up with old friends and new, we headed into breakout sessions on clinical trials and benefit advice. John Donohue, a charted clinical psychologist from Russells Hall Hospital, spoke in-depth about the psychological and emotional experiences of blood cancer patients. This was a difficult one, a very divisive subject and John handled questions and wide-ranging topics carefully and with care.

Then it was my turn. I thoroughly enjoy spending time, talking and sharing my experiences with an audience, it’s a very liberating and cathartic thing for me. This was also the first time, against advice, I spoke about sperm banking and fertility treatment. Without it I wouldn’t be a Dad; it is so important for the cancer patient. I’d like to think the delegates felt comfortable, well they laughed in all the right places, although I’m not sure they’ll ever hear a bell ringing the same way again. The day finished with a panel discussion, which I was part of. Lots of questioning and a fascinating discussion about the part Facebook plays in the care network. My good friend Nigel Deekes was in attendance and delivered some impromptu and informative words about the subject.

What struck me from the day was that Leukaemia Care really do care, they are a fantastic national charity who have great potential to make lives better. Controversially, perhaps, I did challenge them to bring more young people into the fold. I don’t think there was a delegate under the age of 25. Without young people, who are sadly the next generation of patients, I fear for any charity. The challenge was accepted with eager vigour as I expected. I can’t wait for the next conference.

I left brimming with new ideas, watch this space, and inspired by stories of courage and care. The Leukaemia Care team deserve a huge pat on the back for delivering a fantastic event and if anyone can tell me a better way to spend a Saturday I’d like to hear it.

www.leaukaemiacare.org.uk

More Parliamentary questions answered.

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My thanks again go to Mark Garnier MP for asking these written questions for us in Parliament. It’s vitally important that we keep asking questions, forcing answers (even if we don’t like them) and giving this cause as high a profile as we can manage. These answers are recorded for posterity in Hansard and we can refer back to them any time. Hansard is the name of the printed transcripts of parliamentary debates in the Westminster system of government. It is named after Thomas Curson Hansard, an early printer and publisher of these transcripts.
Kris

22 Apr 2013 : Column 753W
Leukaemia

Mark Garnier: To ask the Secretary of State for Health (1) what steps he has taken to ensure that those diagnosed with chronic myeloid leukaemia have access to a wide range of treatment options, including Dasatinib’ [151773]

(2) what recent discussions he has had to ensure that those diagnosed with chronic myeloid leukaemia have access to a wide range of treatment options, including Dasatinib. [151774]

Norman Lamb: The Mandate to NHS England clearly states the need to improve access to treatment for people when they need it.

The National Institute for Health and Care Excellence (NICE) has issued technology appraisal guidance that recommends the drugs imatinib and nilotinib for use in the treatment of chronic myeloid leukaemia. NICE guidance does not recommend dasatinib as a clinically and cost-effective use of national health service resources.

Commissioners are under a statutory obligation to provide funding for such treatments and drugs recommended by NICE within three months of the guidance being published.

Patients have a right under the NHS Constitution to clinically appropriate drugs and treatments recommended by NICE technology appraisal guidance.

Since October 2010, the £650 million Cancer Drugs Fund has helped over 28,000 patients in England to access the drugs their clinicians believe will help them. NHS England has now taken on oversight of the fund, bringing even greater consistency to decision making.

The Secretary of State for Health, the right hon. Member for South West Surrey (Mr Hunt), has had no recent discussions about this matter.

http://www.publications.parliament.uk/pa/cm201213/cmhansrd/cm130422/text/130422w0007.htm#13042383001683

 

22 Apr 2013 : Column 735W
Cancer: Drugs

Mark Garnier: To ask the Secretary of State for Health with reference to the Cancer Drugs Fund, as announced by the NHS Commissioning Board, whether access to some treatments previously available through the fund will be restricted. [151790]

Norman Lamb: Since NHS England took on oversight of the Cancer Drugs Fund from 1 April 2013, it has published a national list of cancer drugs covered by cohort policies on its website at:

www.england.nhs.uk/wp-content/uploads/2013/03/ncdf-list.pdf

We understand that the great majority of cancer drugs previously funded by strategic health authority panels are on this cohort policy list, supporting timely and consistent access. Clinicians can apply to the national Cancer Drugs Fund for the inclusion of a drug within the approved cohort list.

Regional clinical panels will continue to consider individual patient applications where a patient is considered to be exceptional to a cohort, policy or where use under a cohort policy has not been considered due to the rarity of the condition.

http://www.publications.parliament.uk/pa/cm201213/cmhansrd/cm130422/text/130422w0006.htm#13042383001615

Tom Watson MP joins our cause!

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I’m still trying to get my head around today! It may just be the most amazing thing to happen to the AccessCMLDrugs campaign to date. Tom Watson who is the Member of Parliament for West Bromwich East, Deputy Chair of the Labour Party and the Labour Party’s Campaign Co-ordinator has agreed to support our cause!

We met this afternoon in West Bromwich and spent some time going over the issues affecting CML patients, namely the unavailability of dasatinib. We discussed, in detail, the STOP trial data, the effectiveness of dasatinib, what the TKI (tyrosine kinase inhibitor) drugs mean to CML patients, survival rates and the cancer drug fund. I told him about our campaign so far and how hard it is get our voice heard, especially by NICE, the pharmaceuticals and his own party. He agreed that it is important to ensure that all CML drugs are available to patients, free at the point of delivery. He has told me that he will do all he can to support us, he looked me in the eye and he told me that he believed in what we are trying to do.

To say I was blown away is an understatement. Tom is one of the most powerful men in politics today and I’d gone prepared; I’d even taken my box of dasatinib to show him what this is all about. He was sharp, working out quickly how much the NHS could save if the STOP trials findings are conclusive and adopted in England. These being the ongoing trials where 40% of patients who achieve CMR (Complete Molecular Remission) over a period of time come off their drugs and don’t need them again. The other 60% take the drugs again and the leukaemia goes back into remission. Hopefully you never tire of me writing about this as a cure for cancer.

So that’s it in a nutshell. Tom wants me to put a report together and propose how I want him to help out. He was sincere, friendly and genuinely interested in leukaemia and blood cancer patients. I sat in my car for 20 minutes afterwards just taking everything in, it was emotional. The implication on what we are trying to achieve is huge and having someone like Tom behind us is simply fantastic (sadly that doesn’t feel like a big enough word).

I need to start gathering research and writing up that report but in the meantime I’m sure you will join me in thanking Tom for taking an interest in a handful of poorly people and their little fight to stop a big disease. Thank you.

Kris

Tom Watson MP and Kris Griffin

Tom Watson, Member of Parliament (MP) for West Bromwich East, Deputy Chair of the Labour Party and the Labour Party’s Campaign Co-ordinator, with CML campaigner and patient Kris Griffin

Front page of the Independent: Cost of CML Drugs

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Well, look here. Front page of The Independent yesterday with “the news” that CML drug prices are way too high. It’s something we’ve known for ages and it’s fantastic that the damaging price of these drugs is being brought to public attention.
I think it is important that we consider the other side of the argument for a moment though, and this is not an attempt to justify the prices and defend the pharmas. These drugs are saving lives and, in some cases, curing a form of cancer. What price on that? These drugs have revolutionised CML treatment and have certainly kept me alive. Do I care about the price? No. I care that they’ve saved my life and it helps that I live in the UK and don’t have to find that money. Do I care that there are people on this planet dying from CML. YES – and this is the issue.   Morally these pharmaceutical companies have an obligation to service each territory to ensure these drugs are available at an affordable price. There are plenty of opportunities to cover research costs but there is bigger picture stuff here…even bigger than the shareholders of these companies. Let’s not use these prices as a stick to beat the industry with, after-all they’ve come up with something truly amazing that is going to change the face of healthcare forever. Instead let’s appeal to their common decency, their moral compass and put the pressure on them to deliver a fair solution. This applies to you too BMS. Your failure to provide a Patient Access Scheme in the England has meant the NHS has not been able to deliver dasatinib as a standard treatment.
What a fantastic opportunity for people to do the right thing. Will it happen? Probably not but I must have faith in the human condition. We can put pressure on the pharmaceuticals,  we can write, ask the awkward questions and make sure they know every time a CML patient dies because they can’t afford the treatment they need. Let’s be brave about this, we thank the industry with all our heart, but the time has come to be bigger than the bottom line.  Kris

The wounded surgeon plies the steel
That questions the distempered part;
Beneath the bleeding hands we feel
The sharp compassion of the healer’s art
Resolving the enigma of the fever chart.
T.S. Eliot (1888-1965) – Four Quartets ‘East Coker’ (1940) pt. 4

The real cancer killer: rip-off prices for drugs set by ‘profiteering’ Big Pharma giants

An influential group of cancer experts has warned that the high prices charged by pharmaceutical companies for cancer drugs are effectively condemning patients to death.

The group of more than 100 leading cancer physicians from around the world, including nine from the UK, accuse the drug industry of “profiteering” – making a profit by unethical methods such as by raising the cost of grain after a natural disaster.

Of the 12 drugs approved by the Food and Drug Administration in the US in 2012, 11 were priced above $100,000 (£65,000) per patient per year. In addition the price of existing drugs of proven effectiveness has been increased by up to threefold.

The specialists say: “What determines a morally justifiable ‘just price’ for a cancer drug? A reasonable drug price  should maintain healthy pharmaceutical industry profits without being viewed as ‘profiteering’. This term [profiteering] may apply to the trend of high drug prices where a life threatening medical condition is the disaster.”

The high prices mean the drugs may not be approved by the National Institute for Clinical Excellence in the UK forcing doctors to fill in a 14 page application apply to the Cancer Drugs fund for British patients who could benefit from them.

In addition, the rising cost of existing drugs in a cash limited health service such as the NHS means treatment is denied to other patients with other conditions.

The authors of the article, published in the journal Blood, are all specialists in blood cancers such as leukaemia, where cancer drugs have proved most effective.

One of the best known – imatinib, whose brand name is Glivec – has proved so successful in chronic myeloid leukaemia that patients who a decade ago survived for a few years can now look forward to a near-normal life expectancy.

But the cost of Glivec has risen from £18,000 per patient per year to around £21,000 in the UK, and from $30,000 to $92,000 in the US. This is despite the fact that all research costs were covered by the original price, and the number of patients treated and the length of time they are on the drug have both vastly increased because of the drug’s success.

Daniel Vasella, former chairman and chief executive of Novartis, the manufacturer, said the original price charged for Glivec in 2001 was considered “high but worthwhile” and was estimated to yield annual revenues of $900 million, enough to cover its development cost in two years. A decade later Its annual revenues in 2012 were $4.7 billion (£3 billion).

The cancer specialists say the revenue earned by Glivec over the last ten years “represent generous profits to the company”. But this has put heavy pressure on those who have to foot the bill. “Grateful patients may have become the financial victims of the treatment success, having to pay the high price annually to stay alive”.

In the US even those with health insurance may pay an average of 20 per cent of drug prices out of pocket. Drug prices are the single most frequent cause of personal bankruptcies in the US.

Three new drugs have been approved for chronic myeloid leukaemia in the last year by the FDA but the prices are “astronomical” the authors say at up to $138,000 a year per patient.

Worldwide only about a quarter of the patients with chronic myeloid leukaemia who could benefit have access to drugs because of the cost. “A small fraction are rich enough to pay individually, and most are treated intermittently or not at all. The effects of these financial pressures on long term survival… are yet unknown.”

In the UK, patients are shielded from the “direct economic anxieties of illness”, the article says.  But Professor Jane Apperley, chair of the Department of Haematology at Imperial College, London, and one of the authors, said high drug prices were still a cause of harm in Britain .

“The price of a drug heavily influences the decision of NICE whether we can prescribe it on the NHS. I am chief of service at Imperial College and we are constantly being asked to reduce our spending. We have to look very carefully at the cost of the drugs we use.”

“Of course we need the pharmaceutical industry to go on developing new drugs. It is very exciting that a number of cancers are now becoming susceptible to these new drugs. But the rising cost is unsustainable. “

“The drugs are very effective at keeping people alive. But if they are priced out of what you can afford you know that you can keep people alive but you can’t afford to do so. It is completely unsustainable for the NHS because the costs are going up every year. We need a serious dialogue about whether we can sustain these costs.”

The authors of the article in Blood conclude: “We believe the unsustainable drug prices may be causing harm to patients. Advocating for lower drug prices is a necessity to save the lives of patients who cannot afford them. We believe drug prices should reflect objective measures of benefit, but should not exceed values that harm our patients and societies.”

The group say they intend to organise regular meetings and campaign for lower cancer drug prices.

A spokesperson for the UK charity Beating Blood Cancers said: “As a charity we want to see an ethical approach to drug pricing . There is no point in us investing in research if the pricing policy means drugs won’t be available to patients.”

In a statement to The Independent, Novartis said: “We recognize that sustainability of health care systems is a complex topic and we welcome the opportunity to be part of the dialogue.  Our critical role, as one of many parties working towards improving cancer care, is to discover and develop innovative treatments.”

“ Novartis innovation in chronic myeloid leukemia (CML) has changed the course of the disease. Before Glivec(imatinib)* and Tasigna (nilotinib), the five-year survival in CML was only 30 percent. Today, nine out of ten patients with CML have a normal lifespan and are leading productive lives.”

“Over the years, our programs have evolved to improve patient access to our medicines. We work together with government health care systems, charities and other payers to build successful cost-sharing models.”

Expert view: ‘Price of drugs is harming patients’

The following is an extract from an article, contributed to by more than 100 leading cancer physicians from around the world, including nine from the UK, published in the journal, Blood.

This perspective reflects the views of a large group of CML experts, who believe the current [high] prices of drugs may compromise access of needy patients to highly effective therapy, and are harmful to the sustainability of our national healthcare systems…

If drug price reflects value, then it should be proportional to the benefit to patients in objective measures, such as survival prolongation, degree of tumour shrinkage, or improved quality of life. For many tumours, drug prices do not reflect these endpoints, since most anti-cancer drugs provide minor survival benefits, if at all.

As physicians, we… believe the unsustainable drug prices in CML and cancer may be causing harm to patients. Advocating for lower drug prices is a necessity to save the lives of patients who cannot afford them … For CML, and for other cancers, we believe drug prices should reflect objective measures of benefit, but should also not exceed values that harm our patients and societies.”

An ethical price tag? Cancer drugs

Brands used for the treatment of chronic myeloid leukaemia

Imatinib (Glivec) £21,000 per patient per year – Novartis
Designed from first principles, it proved hugely effective and unexpectedly turned into a blockbuster, earning billions of pounds for its makers.

Nilotinib (Tasigna) £21,000 – Novartis
Designed for patients who fail to respond to Glivec, Novartis reduced the cost to get it past Nice, whilst increasing the cost of Glivec.

Dasatinib (Sprycel) £31,000 – Bristol Myers Squibb
Also designed for patients who cannot take Glivec. But it has not been approved by Nice for use on the NHS because of its high cost.

Bosutinib (Bosulif) £76,000 – Pfizer
For patients who suffer side-effects from the other drugs. It won approval in the US in 2012 but is awaiting a licence in the UK.

Omacetaxine (Synribo) £100,000 – Teva
For patients who cannot tolerate other drugs. Approved in US in 2012 but awaiting licence in the UK.

Ponatinib (Iclusig) £90,000 – Ariad
A third-generation drug which works in a different way. Approved in the US in 2012 but awaiting a licence in the UK.

JEREMY LAURANCE    MONDAY 29 APRIL 2013

http://www.independent.co.uk/news/uk/home-news/the-real-cancer-killer-ripoff-prices-for-drugs-set-by-profiteering-big-pharma-giants-8591825.html

Letter to Rt. Hon. Andy Burnham MP

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Further to the media attention we received yesterday in trying to get some answers on the Cancer Drug Fund and the future funding for dasatinib I’m sending the Shadow Secretary of State for Heath, Andy Burnham another letter. I didn’t receive an answer to my February correspondence with him. K.

Rt Hon Andy Burnham MP
Shadow Secretary of State for Health
House of Commons
London    SW1A 0AA

5th April 2013

Dear Mr Burnham,

My name is Kris Griffin and I am the founder of the Access CML Drugs Blog, which campaigns to improve patient access to treatments for Chronic Myeloid Leukaemia (CML). I wrote to you about the issues facing CML patients in early February, however I have not yet received a response. You may remember that we briefly discussed this issue at the Britain Against Cancer conference back in December and I would welcome the opportunity to have an exchange of views about the availability of treatment for the disease and current access to medicines arrangements.

You will be aware that the future of the Cancer Drugs Fund is an issue that has received significant media attention this week. A number of patient groups have raised concerns that when the fund ends in April 2014, patient access to medicines will be severely restricted. This is certainly true for CML patients as the only NICE approved drugs available are imatinib and nilotinib. However for a number of patients, including myself, these two treatments are not effective.

There are now fewer drugs available for the treatment of CML than when I was diagnosed five years ago. Due to the vagaries of the NICE appraisal process, the drug that has kept me alive, dasatinib, is no longer available via the NHS. In the majority of cases, access through the Cancer Drugs Fund is the only way that patients can receive life-saving treatments such as dasatinib.

Whilst I understand that you do not support the continuation of the Cancer Drugs Fund, I would be keen to hear your views on how patient access to treatments could be improved. Particularly, I would be interested to hear how this issue sits within Labour’s recently announced health policy review. Similarly, I was also interested to hear your recent policy announcement on the future of the NHS and the prospect of “whole person care”. While I hope that your plans to change local commissioning of services can lead to less geographical variation in the treatment of rarer cancers, I would be very keen to hear your views on how access to medicines arrangements would operate under this system. I would be more than happy to work with you on this issue and help ensure that patients are able to have access to the widest range of cancer treatments.

The situation I have described is not unique to CML and many people suffering from rarer cancers will experience the same trouble accessing potentially life-saving medicines. That is why access to medicines programmes such as the Cancer Drugs Fund are so important. I would be delighted to discuss the issue of Chronic Myeloid Leukaemia and access to medicines with you further at a later date.

Kind regards,

 

Kris Griffin
Access to CML Drugs

Cancer Drug Fund Running Dry

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The Cancer Drug Fund (CDF) is big news today, it’s all over the news and as I type this I am waiting for my local BBC radio station to call for an interview. The problem is that
this story has been brewing for a long time now and as we approach the moment funding will run out in 2014 the panic has started to set in.

The £650 million fund has paid for treatment for over 28,000 patients nationally since 2010. This is money the Government has set aside to pay for cancer drugs that haven’t been
approved by NICE (National Institute for Health and Care Excellence) and aren’t available within the NHS in England. For some it brings quality of life, others it gives precious time and for many it is truly life-saving.

The drug that I take for my leukaemia is called dasatinib. I receive it through the NHS, free at the point of delivery, as I should. But recently, since a change in NICE  guidelines, dasatinib is only available to patients who apply for it through the CDF. There are alternative treatments available but by restricting access we are restricting progress and potentially putting lives at risk. For patients who rely on the CDF for their medication this news will bring cause for concern and unnecessary worry on top of a cancer diagnosis.  They don’t know how their drugs will be funded post-2014 and no-one is reassuring them.

When I managed to catch up with Shadow Secretary of State for Health Andy Burnham MP and Secretary of State for Health Jeremy Hunt MP before Christmas neither man was willing to commit to extending the funding for the CDF and nearly 4 months later we still don’t have an answer or an alternative. I have written to both men and am still waiting for a response.

I am getting support. My local MP Mark Garnier, as always, is being very helpful as is the All Party Political Group (APPG) on Cancer. I hope that today is the start of the real pressure. Laura Weir, head of policy and campaigns at the MS Society and chair of the Patients Involved in NICE group, concerns me with her view that other conditions needed to be considered too. I wonder if Laura is aware that dasatinib is currently considered a breakthrough treatment for MS (see link here) and without the CDF no one would receive it, no funding, no drugs, no progress, no cures. For once I believe that we really are all in this together.

There is no point in us all fighting over funding, this is healthcare and if it benefits the patient we must all get behind it. 1 in 3 of us will be affected by cancer at some point in our lives, I was 32 when I was diagnosed. Those numbers are too high for us to sit back and do nothing.

I implore the Department for Health to either extend the CDF or provide us with plans for a real alternative now.

www.news.sky.com/story/1073672/cancer-drugs-fund-patients-to-lose-out
www.bbc.co.uk/news/health-22013399

Cancer Drug Fund usage from October 2010 - October 2012

Cancer Drug Fund usage from October 2010 – October 2012

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