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

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

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)

Ponatinib: Scotland 1, Wales 1, England 0

In recent news I reported that Iclusig® (ponatinib) had been granted access to patients in Wales by NHS Wales. You can read the whole story here. I’m pleased to be able to write today to say that patients in Scotland have been given access to ponatinib too! Both countries are providing access for ALL phases of chronic myeloid leukaemia (CML).

In England ponatinib is only available on the Cancer Drugs Fund (CDF) IF the patient has the T315i mutation. We recently reported the majority of patients were being turned down in England after making individual funding requests; full story here.

Whilst you can read the full details of the appraisal by NHS Scotland I’ll draw your attention to this:

A non-comparative phase II study of ponatinib was conducted with primary outcomes of major cytogenetic response in patients with baseline chronic phase CML and major haematologic response in patients with baseline accelerated or blast phase CML or Ph+ALL. Ponatinib demonstrated efficacy in heavily pre-treated CML and Ph+ALL patients who had received dasatinib/nilotinib as second line or further line tyrosine kinase inhibitor therapy or who had the T315I mutation.

The studies of ponatinib show it to be very effective and NHS Scotland have recognised this, but NHS England remain steadfast and refuse to appraise ponatinib because the patient numbers are too low. We find ourselves in a situation where patients aren’t able to access a drug that could save their lives. How can the system be fair when, depending on which NHS authority you come under, will depend on the availability of a drug to you?

There is little that can be done at the moment but once Parliament reconvenes we’ll start to apply pressure and ask direct questions of the organisations that are allowing us to fall behind our counterparts in the United Kingdom.

Thanks, Kris

Advice: following a full submission considered under the orphan and end of life process:

ponatinib (Iclusig®) is accepted for use within NHS Scotland.

Indication under review: Adult patients with
• Chronic phase, accelerated phase, or blast phase chronic myeloid leukaemia (CML) who are resistant to dasatinib or nilotinib; who are intolerant to dasatinib or nilotinib and for whom subsequent treatment with imatinib is not clinically appropriate; or who have the T315I mutation.
• Philadelphia chromosome positive acute lymphoblastic leukaemia (Ph+ALL) who are resistant to dasatinib; who are intolerant to dasatinib and for whom subsequent treatment with imatinib is not clinically appropriate; or who have the T315I mutation.

A non-comparative phase II study of ponatinib was conducted with primary outcomes of major cytogenetic response in patients with baseline chronic phase CML and major haematologic response in patients with baseline accelerated or blast phase CML or Ph+ALL. Ponatinib demonstrated efficacy in heavily pre-treated CML and Ph+ALL patients who had received dasatinib/nilotinib as second line or further line tyrosine kinase inhibitor therapy or who had the T315I mutation.

This advice takes account of the views from a Patient and Clinician Engagement (PACE) meeting.

Taken from: www.scottishmedicines.org.uk/SMC_Advice/Advice/1032_15_ponatinib_Iclusig/ponatinib_Iclusig

Freedom of Information campaign update

Just to let you know that the Freedom of Information request to all Strategic Health Authorities (SHAs) is now live. The questions we have asked are listed below, I’ll keep you up-to-date with progress.

Best,

Kris

1) How many people within your catchment area have been diagnosed with Chronic Myeloid Leukaemia (CML) in:
a) 2008
b) 2009
c) 2010
d) 2011
e) 2012

2) Is Dasatinib (Sprycel) currently on your approved list of treatments that can be funded under the Cancer Drugs Fund (CDF)?
– If not, is there any particular reason for this and could it be easily added?

3) How many applications for funding for Dasatinib did you receive under the interim Cancer Drugs Fund, between 1st October 2010 and 31st March 2011?
– Of these applications, how many were successful?

4) How many applications for funding for Dasatinib did you receive in the first year of the full Cancer Drugs Fund from 1st April 2011 to 31st March 2012?
– Of these applications, how many were successful?

5) How many applications for Dasatinib have you received in the second year of the full Cancer Drugs Fund since 1st April 2012?
– Of these applications, how many were successful?

Postcode lottery (or not)

Following the update on Sir Andrew Dillon’s letter below, I thought it was time to kick-start a campaign to ensure that, even though Dasatinib will not be available on the NHS (as per the final guidance from NICE here), it IS made available on the Cancer Drugs Fund (CDF).

About the CDF

In essence, the CDF has been designed to fund treatment options which have been rejected by NICE or those which have not yet been given a final recommendation by NICE. Currently therefore, while Nilotinib and Imatinib should be available on the NHS, patients should be able to access Dasatinib on the CDF. However, access can depend on geographical location.  This is because it is for individual, regional ‘cancer networks’ to approve a drug which will be available on a local CDF list. These ‘priority’ lists, which list those treatments that are funded on the CDF in a locality, are required to be kept under regular review. As Dasatinib will not be available on the NHS when newly diagnosed or as a second-line treatment, it should be available on the CDF as long as local lists include it.

So, while there is little more we can do with NICE than register our incredulity at their decision (as per my blog entry below), the most effective thing we can do is to ensure that Dasatinib is included as a treatment on every single CDF list across the country. We must do everything we can to ensure all patients can access Dasatinib on the CDF when they need it.

What we will do

We will be writing to each SHA (strategic health authority) responsible for deciding which treatments it makes available on the CDF, asking them whether it currently makes Dasatinib available or not. We know that updates are meant to take place quarterly, so after three months, we will approach SHAs again to see if they have since included Dasatinib on their lists. The aim is to see whether Dasatinib is available to all patients in England – and if not, to identify those areas that don’t make Dasatinib available. The plan will then be to take the evidence to Parliament, and for those areas that don’t include Dasatinib within their lists of treatments available on the CDF, to ramp up the Parliamentary pressure to review why Dasatinib isn’t available. It will be a long-term campaign, but watch this space…

What you can do

In the meantime, you can email or write to your local MP and let them know how disappointed you are that Dasatinib has not been made available at first or second line on the NHS, and ask for their support in ensuring that the treatment is available on the CDF, given that evidence shows that Dasatinib is clinically effective, and can be the only suitable option for a number of CML patients. You can ask them to table some written Parliamentary Questions on the issue, so that we get official answers in parliament about the issue. You could ask your MP to table questions along the lines of:

• What can be done to ensure that CML patients have access to a wide range of treatment options when newly diagnosed, or at second line?

• What can be done to ensure patients receive Dasatinib on the CDF?

• Ask about the number of people who have been diagnosed with CML in each of the last five years

• With the Cancer Drugs Fund scheduled to end in 2014, what are the long-term plans to ensure that those diagnosed with CML have access to the widest range of treatment options?

 (You can identify your local MP by entering your postcode at this link: http://www.parliament.uk/mps-lords-and-offices/mps/)

As ever,

Kris