MPs take action on blood cancers

There has been some great news for blood cancer patients coming from Parliament recently. Firstly, Henry Smith, the MP for Crawley (and someone I met with last year), has set up an All Party Parliamentary Group (APPG) specifically on blood cancer. The group will look into the key issues affecting patients with blood cancers, and is an acknowledgement that MPs understand that haematological cancers are very different to solid tumours – in the impact they have on patients as well as the need for different kinds of information, support and treatments to be available. MPs who will sit on the APPG include Jim Shannon, Colleen Fletcher and Birmingham Yardley MP Jess Phillips Bloodwise will provide the secretariat to the group. I hope to engage with the APPG soon, and will update you as to how I get on.

In addition to this, Jim Shannon and Henry Smith hosted a debate in the House of Commons last week to discuss blood cancers and the Cancer Drugs Fund (CDF). The debate, which took place in Westminster Hall, saw a number of MPs from different political parties discuss issues relating to the diagnosis, management and treatment of different blood cancers. Many of the MPs had had personal experience of blood cancer and spoke about how their families had been affected and the need to improve patient access to vital, life-extending medicines. Improved awareness of the signs and symptoms of blood cancers for GPs was also noted as being crucial to improving diagnosis rates and earlier diagnosis.

Another topic repeatedly raised during the debate was the appraisal methods used by NICE which don’t work for blood cancer medicines, which generally treat very small numbers of patients and don’t fit the usual model by which NICE evaluates the “value” of a drug. The ‘postcode lottery’ which exists in terms of patient access to treatment was also covered, something which I have campaigned extensively on, particularly in the case of Khalid Younis who could only access treatment with ponatinib by moving to Wales as the drug is not approved in England.

The creation of the APPG and the debate are very positive steps towards getting improved recognition of blood cancer. Parliamentarians focussing on the key issues can only be a good thing for patients. Whether or not your local MP is on the list of people who attended the debate or not (below), I would encourage you to write to them to ask them to support the APPG and get involved in campaigning for improvements to the lives of anyone affected by blood cancer.

The MPs who contributed to the debate were:

• Jim Shannon, DUP MP for Strangford
• Henry Smith, Conservative MP for Crawley
• Colleen Fletcher, Labour MP for Coventry North East
• Maggie Throup, Conservative MP for Erewash
• Martyn Day, SNP MP for Linlithgow and East Falkirk
• Nigel Dodds, DUP MP for North Belfast
• Nic Dakin, Labour MP Scunthorpe
• Dianne Abbott, Labour MP for Hackney North; Shadow Health Secretary.
• George Freeman, Life Sciences Minister

Thanks, Kris

Kris Griffin and Henry Smith MP

Please sign and share this important petition

I’m not a huge fan of petitions, they are far too easy to ignore but this one is just 1,707 short of the target of 10,000 signatures. It’s simply too close to the target for us not to go after it.

I’ve been writing about my friend Khalid Younis on this blog for some time now. Like me, Khalid is a leukaemia patient as well as a father of four. He 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.”

As well as this petition going off to NHS England if we achieved the 10,000 signatures, it would also mean that any correspondence we have with ministers and government departments we could reference it – it’s quite a powerful statement and makes the case to get access to these drugs a little strong.

Please sign. https://www.change.org/p/nhs-nice-cancer-dad-denied-tratment#petition-letter. Please share.

Thank you. Kris

Khalid Younis – A Letter From Number 10

In October I wrote this letter to David Cameron, our Prime Minister.

Dear Prime Minister,

The photo below is of me with my new friend, his name is Khalid Younis. We both have a rare form of leukaemia called Chronic Myeloid Leukaemia (CML). Treatment for CML was revolutionised in 2001 when Time magazine hailed a drug called imatinib a magic bullet against cancer. Now, 14 years later, my friend cannot access a new, potentially life-saving drug called ponatinib because it hasn’t been appraised by NICE.

Khalid Younis and Kris Griffin

I don’t understand why the cancer drug fund process was closed alongside the appraisal process, we find ourselves falling through an administrative gap. Khalid’s situation has attracted nearly 8,000 signatures on a petition and the story has been featured in the Daily Mail, Daily Mirror and the local Birmingham newspapers. We’ve contacted Khalid’s MP, Roger Godsiff and my MP, Mark Garnier. Mark knows my work and has always been really supportive.

Whilst I realise you have many responsibilities and must receive many letters like this; if you have time to meet or discuss this issue and help us I would be extremely grateful.

Ponatinib offers the last real hope Khalid has, not being able to access it in England is devastating.

Yours sincerely,

Kris Griffin (Mr)

Last week I received this reply:

Of course I’m disappointed, I’m not sure if I ever thought he’d agree to a meeting and fix the problem. My issue with this letter is that the Department of Health is part of the problem. They’ve allowed this issue to manifest and within the space of two days (last week) I’ve managed to extract three different dates when they expect the appraisal process to be ready. Not ready for use…oh no..ready for it to be reviewed. In the meantime, we don’t have an appraisal process and by that point we won’t have a cancer drugs fund. I don’t want to write a ‘told you so’ letter to our PM.

So, I’ll be writing to Mr Cameron again, perhaps I’ll also include the 8,000 signatures on this petition and ask him what he thinks the Department of Health will do; because from where I’m sitting they are making the situation worse.

Kris Griffin – Access CML Drugs

Another Day In Westminster

I spent an exhausting day in Westminster meeting parliamentarians this week. Henry Smith MP, Mark Durkan MP and Nic Dakin MP all gave up their valuable time to sit with me in Portcullis House to discuss Khalid Younis, Chronic Myeloid Leukaemia (CML) and the problem we currently face with the lack of an appraisal system for new drugs.

All three MPs were incredibly kind with their time and very supportive. They all agreed to support a letter from Roger Godsiff MP (Khalid’s member of parliament) to the Prime Minister asking him to intervene in Khalid’s case as well as agreeing to submit written parliamentary questions where appropriate. All three were very concerned with the issues I raised and offered lots of advice and opinion on how we can move forward.

It’s great to have days like this. We’ve made friends with more, influential, people who now know about the struggle CML patients face as well as issues facing the wider cancer community. Although to their credit all three men were very aware of the restrictions faced getting the right drugs to the right people in a timely and cost-effective way. I certainly appreciated the balance in conversation; we all know that the funding pot is finite but to have a productive discussion on how to address this in a fair and progressive way, ensures we, as patients, become part of the solution, rather than part of the problem.

I’ll progress this by suggesting some written questions we can submit and go on record by thanking all three gentlemen very much for caring about CML patients.

Best, Kris

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MPs to debate the availability of cancer drugs in Parliament

I am pleased to announce that next Tuesday, 20th October, MPs will take part in a Westminster Hall Debate on the availability of cancer drugs. This has been sought by DUP MP Jim Shannon, a big advocate of cancer patients, following his attendance at a dinner to discuss access to medicines for blood and rarer cancers earlier in the year. The debate will give MPs the opportunity to discuss the significant problems many cancer patients in England are currently facing in terms of gaining access to the medicines they need.

You will have read about the fight I have taken up to help 43 year old Birmingham father of four, Khalid Younis, gain access to ponatinib for his resistant Chronic Myeloid Leukaemia (CML), including the meeting we had last week with his local MP, Roger Godsiff. I have alerted Roger to the fact that this debate is happening and asked if he can raise Khalid’s case with the Minister to see if we can progress the situation further with the Government and NHS England. In addition, an Access CML Drugs briefing has gone out to a number of MPs I’ve met before, or who have an interest in CML, stem cell transplantation or the ending of the Cancer Drugs Fund. The briefing highlights our key issues and the inequity of access English patients currently face compared to those in Scotland and Wales. You can download the briefing below.

Whilst the debate won’t focus solely on CML or blood cancer, I hope Khalid’s story will form part of the discussion and be used to demonstrate the problems which exist with the current evaluation methods used for cancer medicines in England, particularly with the Cancer Drugs Fund (CDF) refusing to appraise any new medicines between now and when the Fund ends in March 2016. I hope the issue of how the National Institute for Health and Care Excellence (NICE) and the CDF work (or don’t!) together will also be discussed; any future system of evaluation for cancer medicines needs to be able to work for cancers with small patient populations and previous drugs have, sadly, fallen down the gap between NICE and the CDF.

I would encourage everyone to contact their local MP and ask them to attend and contribute to the debate. You can find out who your local MP is here. The more MPs that attend, the greater the level of awareness there will be amongst parliamentarians of the issues we face.

I will post again following the debate.

Kris Griffin – founder of Access CML Drugs

ACCESS CML DRUGS – WESTMINSTER HALL DEBATE – BRIEFING

Khalid Younis – an update

You’ll recall that we’ve been working with Khalid Younis, the 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. The new ‘wonder’ drug is the only treatment left for the 43-year-old who is battling Chronic Myleoid Leukaemia (CML), of which there are 700 new cases a year in the UK. His body has become resistant to all other medicines and he is not eligible for a stem cell transplant. Mr Younis, a former carpet fitter, is being treated at Birmingham’s Queen Elizabeth Hospital and this drug is his last chance; he’s been told that his case is “not exceptional.” You can find my original posts HERE and HERE.

Whilst the story received exceptional media coverage, things may have appeared to have quietened down over the last two weeks. They haven’t.

Firstly, the petition set up by Debbie Williams has attracted 7,507 supports, the target is 10,000. If you haven’t signed the petition, please sign it now: www.change.org/p/nhs-nice-cancer-dad-denied-tratment

Kate from The Pamela Northcott Fund is putting together an appeal against the decision. Kate is an incredible person who has an amazing track record of supporting cancer patients who have been denied access to new drug therapies that have yet to be approved by NICE or refused by NICE. Kate offers this as a completely free service to patients, her reward is seeing a cancer patient on the right treatment. You can find more out about the Fund by visiting the website www.pamelanorthcottfund.org.uk.

Roger Godsiff MP, Khalid Younis, Kris Griffin

Khalid and I have been in touch with Khalid’s MP, Roger Godsiff – www.rogergodsiffmp.co.uk – who has written to NHS England, NICE and the Secretary of State for Health about the case. Roger has been incredibly supportive. We met up with him last week at his home and he listened with interest to Khalid’s story and offered advice on next steps.

If you are a patient, based in England and wish to take action on this matter, please get in touch with me through my contact form. I’ll ask you to write to your MP as a CML patient and request they too write to the Secretary of State to Health to highlight Khalid’s case. I’ll help you out with the wording of the letter.

Finally, if all else fails we are considering a fund-raising campaign to pay for Khalid’s drugs. We hope that it doesn’t come to that.

All things considered, Khalid is in incredibly good spirits. He very much appreciates the efforts that everyone is making and wishes to send thanks out to you all.

We’ll keep fighting. Thanks, Kris

Khalid Younis and Kris Griffin

World CML Day 2015

9/22 represents the genetic change of Chromosomes 9 and 22 that is the cause of Chronic Myeloid Leukaemia (CML).
Since 2008, patient organisations around the world have initiated events and projects on “CML Awareness Day” on September 22 to raise awareness of the needs of patients living with CML. Since 2011, the worldwide community unites to celebrate “World CML Day” on that date.  – from CML Advocates Network

Sitting down to write a post for World CML Day, even if there are only a few hours left, is always a daunting prospect. Ultimately it’s not just one day for patients, but I understand the sentiment. For patients like Khalid Younis it brings more attention to his cause to get the drug (ponatinib) he deserves – you can read his story here.

So, when it came to writing I was in danger of either repeating myself or simply bashing governments and organisations again. PING. An email arrives. It’s a blog post from my good friend Greg Stephens, the executive director of the National CML Society in the US. Greg is one of the good guys, a really good guy. That’s the thing about CML, it brings people together. I would be a poorer person for not knowing Greg. His fiery determination, humility and wit makes for great company which come in handy when the sensible people have gone to bed at conference.

His blog post was a complete inspiration and I asked him if I could post it here, he said yes in the most beautiful way. Here it is, he said things I wanted to say in a much better way. Cheers Greg x

Kris

Some things to ponder on World CML Day
by Greg Stephens

Today, 9/22, is a day that is known well among those of us in the CML community. It’s a day set aside for awareness activities and a time to call attention to the many challenges faced by anyone living with Chronic Myeloid Leukemia. Over the past seven years, today’s awareness initiatives have grown in scope, rising from the first CML Awareness day in Canada to a global emphasis. Right now, activities are going on around the world and key issues are being discussed. So, what are some things to consider on this day set aside as a day of awareness?

First off, it’s not for us. While we benefit from raising awareness, the true purpose for promoting blood cancer and CML awareness (year round, actually) is so the public and those who know nothing about blood cancers can learn more about this group of diseases, recognize the amazing progress that has been made through medical research, have a better understanding of the realities of blood cancer, and dispel myths and misconceptions that may exist. For those of us in the CML community, it’s an opportunity to share our “reality” – truths if you will, with friends and family, medical professionals, the makers of our treatment drugs, and countless others who need to know just how much CML impacts one’s daily life. While there is focused attention on CML, we have a great opportunity and responsibility to create awareness for those outside our community.

Here are a few things to think about:

1. Eighteen! Today, 18 people will be diagnosed with CML* in the United States. There will be 18 more tomorrow and the next day, and the next….all throughout the year.
2. For the majority of those people, their CML will be brought under control with treatment, however, a small portion will not have that experience.
3. The current costs of our CML treatment drugs are unsustainable and many, even WITH insurance coverage and other assistance, are suffering financial ruin as a result.
4. There is no “GOOD” leukemia. Did I just say “GOOD” and LEUKEMIA in the same sentence?
5. Side effects are an ever-present reality that impedes many patient’s daily lives.
6. Drug parity legislation and fair access to oral chemotherapeutic drugs at a national level is needed, now more than ever.
7. Some may be able to achieve a treatment-free remission (TFR) and go months – even years without treatment. Others will be dependent upon treatment for their lifetime.
8. Quality of life issues are widespread and more attention must be focused on addressing them.
9. Learning about CML from reputable resources and becoming knowledgeable about the disease is imperative for anyone diagnosed.
10. We aren’t “finished” with CML – we not only need curative research to continue, we need it to increase.

This list could go on for countless pages and not even begin to cover all the things our community deals with on a daily basis. You probably have a list of your own. It may seem overwhelming, but together we can bring greater awareness to these and other realities we face every day. To succeed, we must look beyond ourselves and our community and boldly speak up so that those who minimize the life with CML or know nothing about it will know the truth. Yes, great things have happened and will continue to happen for our community, but much work remains.

I hope you will join us in making a difference for anyone living with CML.

Greg

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)