Nora Ephron, Leukaemia and I

Nora Ephron passed away this week, she was an amazing screenwriter who also suffered with Leukaemia. I hope you take time to read my other blog today where I share my thoughts about Nora, our love of screenwriting and our respective battles with Leukaemia.

Nora Ephron and I shared a disease. We both suffered from Myeloid Leukaemia. Hers was more advanced than mine, in acute stage, whereas mine is simply chronic. Nora lost her battle this week. I thankfully remain in remission.

Nora Ephron, pictured on set in 2000, has died aged 71. Photograph: Sportsphoto/Allstar/Cinetext Collection


Talking Politics and Leukaemia: Lobbying Parliament

The drugs I take everyday keep me alive. I have Chronic Myeloid Leukaemia (CML) and my 100mg dose of a drug called dasatinib has put the cancer into remission. I’m 36 now and it’s been a 4 year journey, I work full-time, don’t consider myself ‘sick’ and am very, very lucky. The reason I consider myself lucky is because if I had been diagnosed today I would have less drugs available to me than there were available to me 4 years ago.

I started my treatment on a drug called imatinib, hailed as the “magic bullet” to cure cancer by Time magazine back in 2001. I soon moved to a high dose of imatinib because it wasn’t working well enough and after 3 years my consultant decided to move me onto dasatinib, a second generation of treatment which has evidently worked very well.

When reviewing treatment for a resistance in standard dose imatinib earlier this year the National Institute for Health and Clinical Excellence (NICE), a special health authority of the English National Health Service (NHS), rejected the use of dasatinib and higher dose imatinib because it considered them not to be cost-effective. It did however approve the use of nilotinib, another second generation drug, because the manufacturer offered a price discount to the NHS called a patient access scheme. Upon diagnosis this would have left me the choice of just one drug before a risky bone marrow transplant was considered. At the time I had the choice of two drugs and high dosage imatinib. I’d consider this a step backwards in treating CML.

Not content with restricting the choice of second line therapy NICE are currently reviewing first line therapy. They will be making recommendations on which, if any, drugs are to be made available on the NHS for first line use in CML. In the very worst case scenario they may not approve any, although I have been told this is very unlikely. It is likely that they will once again restrict access to these life-saving drugs by approving just one and basing their decision on cost rather than effectiveness.

It is important to consider that these drugs don’t buy a few months or a few years they buy your life back! Thanks to these drugs it is more than likely that I will die from something other than Leukaemia. The drugs I take that target cancer cells and shut them down are, what I believe, the start of the elusive cure for cancer. Yet a government body, which is part of the NHS and paid for by the taxpayer is trying to stop that progress in the name of cost effectiveness.

So last week I visited the Houses of Parliament. Mission objective: to take part in a CML Patient Lobby. The idea being to have a single day when patients could meet respective MPs, and ask them to take action by urging NICE to give positive guidance to all three drugs being appraised for first line treatment: nilotinib, standard dose imatinib, and dasatinib.

With support from Leukaemia Care, a charity based in Worcester, I went with a high moral stance and a very personal story to tell. It would clearly be best for all CML patients and families for their doctors to have the widest choice of treatments possible, in case of any intolerance and/or resistance by individuals to any one or more of these drugs. Hence the lobby wanted them all to be made available one way or another.

My fellow CML patients who also attended the lobby had travelled in from far and wide and included a gentleman who was in his 80s and had Leukaemia for 18 years! Only thanks to the wide range of treatment was he still active and enjoying life. We had all arranged private appointments with our local MPs but managed group discussions with Alan Meale MP, who was the sponsor of an Early Day Motion (#1831), and Alex Cunningham MP who is a member of the All-Party Parliamentary Group on Cancer. Both listened intently and agreed that they would look into ways to support us by writing to NICE and the pharmaceutical companies to ask for better patient access schemes. We also had a chance encounter with Lord Maginnis of Drumglass who was concerned about our case and told us he would be happy for us to contact him with a view to getting a question raised in the House of Lords.

My local MP Mark Garnier has been supportive in the past by writing letters to the Department of Health when NICE were debating second line therapy. Sadly all we ever got back were template letters from the offices of Earl Howe (Parliamentary Under Secretary of State with special responsibility for NICE) and Andrew Lansley MP (Secretary of State for Health). From their responses it felt that they were simply washing their hands of the situation. The population of CML patients who received these template letters all felt that NICE was simply a body set up by the Government to make unpopular decisions. Sadly even the Early Day Motion set up to draw attention to the issue was politicised. Out of the 43 MP signatures 27 were Labour, 5 were Liberal Democrats and 2 were Conservatives, the remaining 9 were made up from other parties.

Today Mark was really interested in finding out more about our issues and helping. He listened intently and asked questions. He was particularly concerned about the process NICE uses to make decisions. As CML is particularly rare, only around 550 people are diagnosed each year with it and the median age at diagnosis is around 60. So harvesting any research is hard because there just isn’t the number of people with the disease. The committee at NICE insist on a preference for a gold standard clinical trial model to make a decision, even though such a model is undeliverable in this case. NICE does not deny that these drugs are more clinically effective than their predecessors but their issue is that there is a paucity of acceptable data from international clinical trials and this serves to inhibit the appraisal committee’s confidence in giving a positive recommendation. In other words the drugs work but because NICE doesn’t have enough people to do a clinical trial to their gold standard then they won’t recommend.

Mark agreed that if this was the case it was concerning and he would be supportive of a letter to NICE to question their model. He also agreed to support my approaches to pharmaceutical companies asking them to offer patient access schemes and therefore reduce the cost of the drugs to the NHS. Finally he suggested we could ask written Parliamentary Question through him to get answers to questions that were previously ignored. In all he couldn’t have been more helpful and supportive.

The day was a great success. I think the group made a slight ripple in a rather big pond and we certainly gained some fantastic support from the people who run our country. I fear that this is just the start of the battle and although my drugs are unaffected by any new decisions this fight is for the people diagnosed today, tomorrow or next year.

Andrew Lansley promised a reformed NHS that would give patients, “real choice for the first time.” His promises have a hollow ring at the moment. The priority appears to be restricted choice and penny-pinching. NICE claims to be an organisation that is responsible for providing national guidance on promoting good health and preventing and treating ill health. Professor John Goodman, a world authority on Chronic Myeloid Leukaemia, stated when speaking of the NICE committee and their draft recommendation in a recent interview, “There must be a reason why intelligent people produce something that is crassly stupid.”

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My Leukaemia Story

I thought I’d post this considering the amount of time I put into it. I was asked some questions about my condition, of Chronic Myeloid Leukaemia (CML), by a journalist for a supplement in a national newspaper. Without going into too much detail it appears some of my comments didn’t sit well with the pharmaceutical company who were sponsoring the feature so I was told my story wasn’t required. Ironically it is likely that more people will actually read this blog in my lifetime (which will long and varied) than will have ever read the piece in the newspaper. Lesson to be learnt here PR people.

If you enjoy read this or are touched in any way by my story please sponsor my walk with Sir Ian Botham next March across the Clent Hills near Birmingham for Leukaemia & Lymphoma Research.

When were you diagnosed with CML?

It was February 2008 and I was 32. I had recently started a new job in the education sector doing marketing and PR (Head of marketing & PR) for a not-for-profit academy sponsor.

How did the diagnosis come about?

The new job involved a longer commute and I was experiencing some pains in my back. I was also having night sweats and had lost a little weight which, quite frankly, felt totally insignificant. I had no idea that my body was sending out a distress signal. I went to the GP who prescribed paracetamol and wasn’t overly concerned. Still in pain I returned 4 weeks later and was tested for arthritis. The blood results returned a white blood count of 190+ and a diagnosis of CML.

What has happened since? (An outline chronology of events is fine)

After diagnosis I had a 3 day wait before seeing my consultant at Worcester hospital. My GP didn’t know anything about CML so was unable to advise what my future held; if I was going to live or die. I felt numb and then, ridiculously, proceeded to scare myself senseless on the Internet for 3 days looking at out-of-date, incorrect information. I walked in to the hospital expecting an immediate bone-marrow-transplant and a slim chance of survival and walked out with hope. My consultant spent a long time with my partner and I explaining what had happened and how we were going to treat it. He was marvellous.

I immediately made a conscious decision to be very open about my situation. Telling family was tough, telling friends, oddly, was worse. I was open with everyone about my diagnosis and encouraged people to ask questions – it seemed to help. My work was very supportive as was my partner but it felt like we were really all along for the ride. I was totally in the hands of the healthcare professionals.

To this end it appeared all I could do was cooperate, live more healthily, do what I was told and stay positive. So I got on with my life. Kelly and I got married just 7 months after diagnoses, we had been together for 12 years and the whole situation made me grow up a little. We discovered Italy after being priced out of our American holidays because the travel insurance was so expensive. We worked hard and we played hard.

In the first 3 years my body didn’t ever really take to the first line of treatment which was Glivec (Imatinib). Almost immediately I was put up to 600mg per day from the standard 400mg. Some of the side effects weren’t nice: constantly upset stomach, bone pains and tiredness. However if this drug was going to keep me alive I was going to keep at it. My consultant was brilliant, always patient, always willing to try something different or new.

Perhaps the worst part were the fairly regular bone marrow biopsies. I tend to call them a necessary evil. Marrow and bone is extracted using a long needle inserted at the top of the buttock. The flesh could be numbed using anaesthetic, the bone couldn’t. I found it extremely painful but adrenalin, good care and a 3 day recovery got me back on my feet. In the first 3 years I probably had around 12 of these. The results of these gave my consultants a birds-eye view how well I was doing on the drugs.

I didn’t spend a single night in hospital and never really considered myself sick, I was too busy getting on with things. We managed to reduce the % of Philadelphia Chromosome right down to 4% at one point but it was hard to stabilise and sometimes crept up. My consultants were determined that considering my young age, dashing good looks and general good health I really should be having a better reaction.

Under the guidance of the magnificent Professor (Charlie) Craddock at the Queen Elizabeth Hospital in Birmingham I was taken off Glivec and put on Sprycel (Dasatinib). The was a newer drug with excellent results but Glivec was my safely net and I felt very nervous. There was a chance these new drugs may not work and I’d potentially I’d be looking at a transplant.

It was just before this happened that Kelly and I decided to have a baby. My consultant had sent me off to the sperm bank 3 years previously as they were unsure what affect the Glivec would have on my sperm. We went through ICSI treatment at the Women’s Hospital at the Queen Elizabeth in Birmingham and Kelly found out she was pregnant around the same time I was switching tablets.

It was quite an uncertain time and although very recently all feels a bit of a blur to me. After 3 months of being on the Dasatinib I had a bone marrow biopsy and just a few days after returning from a short holiday to Italy I received a phone call from my Worcester consultant Mark. He was very pleased with my progress and the results showed I had achieved major molecular remission, just one step away from the best result possible which is complete molecular remission. Needless to say I am hoping I’ll hit this target after the next biopsy.

To all intents and purposes I have very little to worry about. The likelihood is that Leukaemia will not kill me. The unknown has never been so welcome and baby Luca arrives in late October.

(UPDATE: Luca Arthur Francesco Griffin arrived a little earlier in October. He is well and we are enjoying being parents.)

How have you managed to cope with CML?

Quite frankly you aren’t left with a huge choice. I was determined it wouldn’t scar me psychologically or let it define me. That’s why I told people so early. I believe the only thing you can do is look for the positives and let your survival instincts kick in. Believe it or not there are many positives.

The support and advice I received at Worcester, Kidderminster and Birmingham hospitals was amazing and still is. I was exposed to a world of care filled with many wonderful people. I stopped searching the Internet for stories about Leukaemia and got my work/life balance just right. I tried being the best person I could possibly be. The CML became secondary, I let the medical professionals worry about my treatment. I’m a fit strong 36-year-old guy with a lovely wife and 2 cats. I’m learning Italian and enjoy writing film scripts. I’ve discovered that I’m strong enough to deal with CML so it isn’t important anymore. In my mind this reduces the effectiveness of the condition.

There are many people worse off than me. People diagnosed with cancer and other horrific diseases every day. On a grand scale I am lucky. I’m still here and I tell myself that every day.

I honestly believe I am a better person because of my experience, it has made me more mature, more considered, patient and understanding towards the needs of others.

What has been the impact of CML on your life?

Before diagnosis I knew very little about Leukaemia. To me it seemed to be the worst form of cancer. I was aware that Ian Botham walked to raise money for it and Geoff Thomas had it but was OK now. It made me understand mortality, at 32, very sobering.

I’m not the impact on my life is that important, as I said before I’m along for the ride. I think it was tough for my family and friends, I know that they felt pretty helpless about what I was going through but they did all they can to support me.

I tried to avoid the highs and the lows. I didn’t sob or get depressed upon diagnosis and I didn’t celebrate remission. I took, and take, everything in my stride. I’ve tried not to let myself get caught up in emotion.

The impact on my life: I got married, I’m having a son, I discovered a new country that I love (and a football team in AS Roma) and I’ve learnt valuable life lessons. It hasn’t all been a bed of roses, of course, but I believe in hope and positivity and that’s what I’ll take from this experience.

What do you hope for the future of CML research and awareness, and what needs to change?

Doing charity work is important for those of us that can. Society should be defined by how we look after those in need. I’m in a position where I am happy to appear on TV, radio or in print and tell people to support me in my charity efforts because I have Leukaemia. It’s the least they can do. I am happy to push any emotional button I can to ensure the fundraising and awareness continues.

The anti-cancer drugs that I take are revolutionising treatment for CML. In 2001 Glivec made the cover of Time magazine as the “magic bullet” to cure cancer. I believe that this revolution will continue on to treat other forms of cancers. Haven’t we been talking about a “cure for cancer” for decades, well here it is!

What needs to change is the bureaucratic process of healthcare, government departments that are incapable of making decisions and clueless national institutes that profess to have the best interest of health at heart but in reality are simply Government puppets designed to make unpopular decisions.

Assuming we are this close to the cure shouldn’t we be saying to people like Professor Craddock in Birmingham and his medical colleagues; what do you need? How much do you need? There should not be a price on life, these decisions should not come down to budgets and spreadsheets. These are the people who will improve our lives, be remembered for truly great things. They look after our health and we must do all we can to support them. Seeing them struggle for budget and campaign for the implementation of procedure that will save lives is plain and simply wrong and this needs to change.

We owe Doctors, Nurses and Scientists everything for dedicating their lives to health-care and for looking after us, if that isn’t inspiring I don’t know what is.


Quote from comedian Bill Hicks: “The world is like a ride in an amusement park, and when you choose to go on it you think it’s real because that’s how powerful our minds are. The ride goes up and down, around and around, it has thrills and chills, and it’s very brightly coloured, and it’s very loud, and it’s fun for a while. Many people have been on the ride a long time, and they begin to wonder, “Hey, is this real, or is this just a ride?” And other people have remembered, and they come back to us and say, “Hey, don’t worry; don’t be afraid, ever, because this is just a ride.” And we can change it any time we want. It’s only a choice. No effort, no work, no job, no savings of money. Just a simple choice, right now, between fear and love.”

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