Video: Taking blood

When I visited the hospital in October 2016 I decided to document my visit for the benefit of other Chronic Myeloid Leukaemia (CML) patients. The video does contain footage of blood being drawn.

I received my results early and my leukaemia continues to be undetectable. I hope that this video helps newly diagnosed patients or patients who have concerns about regular blood tests. Please contact me if you have any comments or questions.

Thanks for watching, Kris

Leukaemia Man – not exceptional (follow up)

This is turning into a rather extraordinary day and I hope that you don’t mind me publishing a brief update. I hope that you’ve seen my previous post regarding the situation Khalid Younis finds himself; he is unable to access ponatinib – a drug that is essentially his last resort.

The media have picked the story up. I’ve just been interviewed for ITV Central News, that’ll be going out this evening and I’ll be doing a live interview on BBC WM Drivetime around 1715. Please tune in if you are able and spread the word on social media.

The story has also been covered by the Daily Mail and the Daily Mirror, links below:

Mirror – Dying dad denied ‘life-saving cancer drug’ by NHS in postcode scandal is told his case ‘not exceptional’

Mail – Dying father-of-four is denied life-saving cancer drug by the NHS in postcode lottery scandal that’s outraged doctors

We’re breaking ground here and bringing, what is essentially a tiny disease, to public consciousness. We can and will make a difference. Khalid and his family deserve our support. Please help.

Birmingham Mail story – Leukaemia Man – NOT EXCEPTIONAL!

This is possibly the most important post I’ve carried to date. It compounds all of our fears about our CML drugs and exposes NHS England bureaucracy as a cruel, unsympathetic, misguided fool. This is the story of a father-of-four, who lives in England, and has received the devastating news that he does not qualify for Ponatinib, a treatment freely available in Scotland and Wales. This drug is his last chance and he’s been told that his case is “not exceptional.” Thank you to the Birmingham Mail and to reporter Alison Stacey for covering this and for contacting me and asking for my comment.

This is not an isolated incident and I am in touch with another gentleman who is in a similar position who has been told that he’s not exceptional either, I’ll be writing about him next week.

This, in a city where we have one of the finest blood cancer charities in Europe, Cure Leukaemia, desperately raising money to save lives. Khalid attends the same hospital as me, the QE in Birmingham; I can only imagine their despair at not being able to give him the drugs that he needs.

And the response from NHS England: “NHS England and NICE will shortly be consulting on a proposed new system for commissioning cancer drugs…” SHORTLY!! Written by people who don’t realise the consequence of their actions – cancelled reviews, cancelled meetings and a new process that only exists as a blank sheet of paper. All this whilst people die. If Khalid lived in Scotland or Wales he’d be taking Potaninib right now; afforded another lifeline.

We’re putting a patient pack together right now to help you campaign but in the meantime share the blog post, share the original article and show your support for Khalid. NHS England have to hand the keys to the medicine cabinet over, this is not about extending lives, it’s about saving them – to refuse to do is a death sentence.

Kris Griffin

Click the headline to take you to the original article.

Kings Heath dad denied ‘wonder’ cancer drug and told his case is ‘not exceptional’

Father-of-four Khalid Younis, 43, does not qualify for Ponatinib because of postcode lottery

A dying Birmingham dad has been denied a potentially life-saving cancer drug by the NHS in a postcode lottery scandal – and told his case is ‘not exceptional’.

Father-of-four Khalid Younis, from Kings Heath, has received the devastating news that he does not qualify for Ponatinib, a treatment freely available in Scotland and Wales.

The new ‘wonder’ drug is the only treatment left for the 43-year-old who is battling Chronic Myleoid Leukaemia (CML), as his body has become resistant to all other medicines.

Former carpet fitter Khalid, a patient at Birmingham’s Queen Elizabeth Hospital, said: “They say I’m not exceptional, but talk to my Mum, talk to my kids, they’ll tell you I’m exceptional.

“It seems crazy. I have even considered moving to Wales so that I can get the treatment, but I worry about putting my family through it.

“We are in a very sad, vulnerable and stressful situation.”

Khalid’s case comes just days after NHS England announced it is cutting 16 drugs from its Cancer Drugs Fund after overspending by £70 million.

For Khalid the postcode cancer lottery seems desperately unfair as living in England means his survival odds have been drastically reduced.

As he is unable to have a stem cell transplant due to a lung condition, the drug would have been his last shot at beating the leukaemia.

“In a way it’s more painful to know that there’s something out there that could treat me, but I just can’t get Ponatinib,’’ said Khalid.

“This is England, the most beautiful country in the world. They can spend millions on Wembley Stadium, but when it comes to a Dad’s cancer treatment there is not enough money.

“I am truly blessed that I have my amazing family and friends around me. I worry that there must be people out there going through the same thing as me, but on their own.”

Patient advocate Kris Griffin explained this in not an uncommon story for CML patients, as NHS England restricts the amount of drugs patients can access.

“We are not talking about extending his life for a few months so he can prepare to say goodbye,” said Kris.

“We talk about finding a cure for cancer and one comes along we say it is too expensive. It’s insane.

“How is a man not ‘exceptionable’, when he has no other option? This could save his life, and to refuse him is inexcusable.”

A spokesman for NHS England said: “We have every sympathy with anyone in this position.

“NHS England and NICE will shortly be consulting on a proposed new system for commissioning cancer drugs. The new system will be designed to provide the NHS with a more systematic approach to getting the best price for cancer drugs, meaning more treatments can be made available, and give a greater focus on evaluation, leading to the best drugs progressing swiftly to routine commissioning.”
21:00, 16 SEPTEMBER 2015
BY ALISON STACEY

Khalid Younis (Birmingham Mail)

Britain Against Cancer 2014

This was the busiest Britain Against Cancer conference to date. The hall was packed and the exhibition heaving with exhibitors and delegates. Had the election brought people out? The chasm that opens next May could realise plenty of opportunities. Such a shame that various stakeholders in the war on cancer don’t realise the same opportunities.

The Cancer Drug Fund was booted around like a wartime Christmas football and plenty of goodies were hung on the tree of ‘what if’, enticing delegates with their sparkly charm; alas like many decorations, hollow inside. The conference was chaired by the suave, authoritative figure of Jon Baron MP, again in his guise as Chair of the All Party Political Group on Cancer (APPGC). If ever there was a politician with an assured career as a TV heavyweight politico, should the election go wrong, this is your man.

Kris Griffin and John Baron MP

After snappy opening remarks where John Baron suggested that Clinical Commissioning Groups (CCGs) would be driven to focus on public health if their cancer survival rates were up in lights, the conference swung into action with Simon Stevens, Chief Executive NHS England. Stevens almost immediately announced plans for 1 year survival rates to be added to CCG delivery dashboard – it was almost like it had been foretold. Cynicism aside, this is a positive development allowing us to compare CCGs and focus on the areas that need the most support.

The rest of Stevens’ delivery was less of a feast and more of an overview with one eye firmly on 2020. He covered childhood obesity and improvements in radiotherapy and diagnosis. He advocated a focus on coming to sensible agreements with pharma, as if we hadn’t been trying to do this for the last 20 years, and promised to set up a new task force with a view to delivering cancer treatment through 2020 and beyond. The ‘task force’ is a political black hole, in the same twilight zone as the independent enquiry, I have no idea what it means, what it does and how much it costs. Sounds good when it’s hauled into a packed conference though!

Onto the Secretary of State for Health, The Right Honorable Jeremy Hunt MP; sleeves rolled up, no notes and striding the stage like a modern-day master of illusion. He told us that we have the best hospitals, doctors and research but we have the lowest survival rates for cancer. He suggested this was a paradox, I’d suggest it is simply bad management. I love our NHS staff to bits but when I had to take my 91-year-old Nan into hospital last week I counted 16 trolleys in a corridor queuing to get into A&E; it took nearly 12 hours to find my Nan a bed on a ward. The smoke and mirrors continued; there would be investment into genome research (where data could be linked to individual records) and a focus on prevention and early diagnosis.  We would build our cancer strategy on four pillars: money, new models of care, innovation and culture (improved accountability and transparency). This makes me wonder what we’ve been building our strategy on for the last 5 years. He sounded like a man who had run out of steam, there was lots of, ‘what we want’ but not much how it’s going to be done, or how it’s going to be paid for. All-in-all a typical pre-election offer with very little substance. A flash of light and a puff of smoke, he was gone. I was quite disappointed he didn’t pull a coin from a child’s ear.

The panel with Professor Julia Verne (Strategic Public Health Lead for the National Cancer Intelligence Network), Professor Nazneen Rahman (Professor of Human Genetics and Head of Division of Genetics & Epidemiology at The Institute of Cancer Research, London and a Consultant Clinical Geneticist and Head of Cancer Genetics at The Royal Marsden), and Geoff Thomas (Former patient and Patron of Cure Leukaemia) was blessed with a single moment of genius. In summing up, the panel were asked to make one wish in the battle against cancer, Geoff suggested that we unshackle our consultants and give them what they need, in order to treat people effectively. Geoff’s moral cause is a simple one but it’s effective and, as patients, it cuts to the heart of what we want and try to do every day. Geoff’s approach is one we can all learn from, don’t listen to the cynics and if you can’t go around them, go through them.

The panel discussed heath literacy, the power of information, alcohol, tobacco, getting systems right and the prevention of the HPV virus with vaccination. Professor Verne suggested that data is everything in understanding cancer survival agenda and that patients should be better informed. There were lots of questions for them on how to reduce inequalities in cancer outcomes and a clear message about the one year survival rates on the CCG delivery dashboard: that it will improve diagnosis and outcomes across the board. Time will tell.

The Shadow Secretary of State for Health, Andy Burnham MP, made the most of the opportunity to talk to the largest conference on cancer in the UK and certainly outshone his ministerial counterpart. He condemned the Coalition of missing targets and stalling the progress on cancer treatment.He promised a new cancer strategy within 6 months of forming a government with a view to being the best in Europe. He wanted to give children a healthier start in life, tackle tobacco related harm and will bring plain tobacco packaging in. He felt that no child should leave education without being able to recognise early signs of cancer and paid tribute to Stephen Sutton and the work of the Teenage Cancer Trust. He pledged to push access to tests to within 1 week by 2020, this would be paid for via a levy on the tobacco industry. He also promised to improve screening for lung, ovarian and bowl cancer and gave a firm commitment to radiotherapy.

Secretary of State for Health, The Right Honorable Jeremy Hunt MP

He pledged to do all he could to understand and fix under-treatment for the elderly, commit to research, improve access to data, speed up clinical trials and provide physical, mental and social support for people living with cancer. He spoke with passion about the right to die at home and said he would do all he could to build a new right in the NHS constitution to ensure patients had the choice. He covered pretty much every base he could, a cynic would say it’s easy to do in opposition, perhaps it’ll be a different story given power and the financial restriction he would be under. Ultimately I trust Andy Burnham. I’ve been lucky enough to speak to him on several occasions, he has always been honest and has always been up-front in his beliefs. he has qualities that I admire in a politician.

What is worrying is his plan for the Cancer Drugs Fund (CDF). He feels it is indefensible to take money from one health-pot to put into another; referring to radiotherapy and surgery being treated as second class treatments. In his defence he told me this 2 years ago and he clearly hasn’t changed his mind. A Labour government would replace the CDF with a Cancer Treatment Fund, this would cover treatment and not just drugs.

There would be a continuation of drugs but a review of NICE (National Institute of Clinical Excellence) and the appraisal process. Ultimately he wants equality across the cancer board.  Labour would use Pharmaceutical Price Regulation Scheme (PPRS) revenues to replace and expand the new Cancer Treatment Fund. Existing funding would continue but there would be less money to fund expensive, new, innovative drugs, drugs that the CML community have relied on for such a long time. The fund would increase from £280m to £330m, there would have to be cuts to drugs to provide more money to other treatments. You can read the full story on this particular announcement at the BBC News website.

It’s a worrying development. My colleague and I debated, at length, whether we were cancer advocates or CML advocates. For the cancer patient this is welcome news and it pleases me. But as someone with CML who campaigns for newly diagnosed patients this is a disaster, it could mean that even less drugs are available in 1 year than there are now. CML treatment is at the forefront of the war on cancer. For generations we wished for a tablet that could cure the patient, now it’s here we make it difficult to obtain. There is much reflection to be had.

John Baron MP on stage

Next up a break-out session that was always going to be contentious: Are new cancer drugs too expensive for routine use on the NHS? Expertly chaired by Alastair McLellan (Editor, Health Service Journal) and featuring Leela Barham (Founder, Leela Barham Economic Consulting), Mike Birtwistle (Founding Partner, Incisive Health), Meindert Boyen (NICE Technical Appraisal Programme Director) and Barbara McLaughlan (Head of External Affairs, Oncology, Novartis). Whilst Barbara McLaughlan suggested that a new system for the Cancer Drugs Fund lacks transparency and fairness, Boyen countered by saying that every NICE decision to approve a drug means ‘denying health’ to other groups of patients. He went as far as saying that NICE would be happy to authorise more expensive cancer drugs if that is what commissioners want. The stand-off between pharma and government was never more evident, thankfully both guests reasoned with dignity and intelligence. Leela and Mike were the cats in the pigeon party.

Whilst Barham said that the Cancer Drugs Fund is driven by politics, it doesn’t offer value for money and distracts from more important issues. She also pointed out that the Government audit of the Cancer Drugs Fund has never been published. Birtwistle felt that the Cancer Drugs Fund was a temporary solution and is approaching ‘breaking point’ and that the first two years of Cancer Drugs Fund were wasted, as there was no development to establish permanent solutions. The panel was incredibly insightful and kudos to whoever put this one together, it’s been a long time since I’ve seen such a productive discussion.

Finally, to end the conference, Sean Duffy, National Clinical Director for Cancer for NHS England, presented on the inequalities faced by older people affected by cancer, late diagnosis and reduced access to treatment. He felt there should be more transparency on quality and outcomes and praised patient power. He was the only speaker who used the word cure and I applaud him for that. I was lucky enough to ask the question: what assessment has been made of how the outcomes for patients with rarer cancers in the UK compare to those in Europe and what more could be done in the run up to 2020? Sean provided a detailed, positive answer that intimated that  rarer cancers will be a focus for next round of International Cancer Benchmarking Project.

Time’s up. Conferences this challenging only happens before an election. Andy Burnham made the most of his opportunity, he drew a line in the sand. I think there were wasted opportunities and crowd-pleasing pledges, although the record crowd knew that they had the power in 6 months. I’m worried that Labour is a danger to CML patients and I’m baffled thatpharma and Government still can’t get to grips that, ultimately, they both want the same thing. As more generic drugs come on to the market, they’ll both lose out, all this will happen over the next 10 years. In the meantime we have a responsibility to patients newly diagnosed and I hope that we continue breaking through.

Britain Against Cancer website

My Story: Kris Griffin

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 to top it all off baby Luca Arthur Francesco Griffin arrived in October 2011

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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