Monthly Archives: February 2010

NICE deny Leukaemia Patients Life Saving Cancer Drugs

NICE (National Institute for Health and Clinical Excellence) have recently returned their provisional results on Nilotinib and Dasatinib as alternative therapy for Imatinib (Glivec / Gleevec) intolerant patients. Basically they are denying these patients a chance of life on what I can see as purely a cost issue.

The CML Support Group has set up an Online Petition against this which I implore you to sign.

A representative of the CML Support Group said ‘Patients are angry, frightened and very frustrated by the provisional recommendation by the NICE appraisal committee- a recommendation that seems to us to have much more to do with cost cutting than with a rational appraisal of two highly effective and innovative therapies.

If the recommendation is upheld, and NHS funding of these therapies is refused in cases of imatinib intolerance, it will undoubtedly cost lives. It is a shocking prospect that UK citizens, who prove to be intolerant to standard dose imatinib (Glivec) will be denied access to such effective and life-saving alternatives. Clinicians will find themselves unable to offer these therapies to their patients in the knowledge that expert clinicians in Germany, France, the Netherlands and other EU countries, will continue to treat CML patients with these life-saving therapies. NICE have clearly acknowledged that both nilotinib (Tasigna) and dasatinib (Sprycel) are clinically effective and very well tolerated oral therapies.

It is difficult to understand why NICE have singled out imatinib (Glivec) intolerant patients in chronic or accelerated phase CML (but not blast phase) for a provisional recommendation that they alone should be denied access to these life-saving therapies. As a consequence, this group of patients, who currently represent around 30-40 British citizens of all ages, will suffer an appalling injustice that puts them at great risk of dying from acute (blast) phase CML.

We call upon the Secretary of State for Health to ensure all CML patients intolerant of Glivec (imatinib) have equality of access to these life-saving drugs.

This reminds me of the issues I had back in 2001 when trying to get Glivec. You can read the outcome on My Leukaemia Story.

It is difficult to put into words how this makes you feel as a patient. Jed’s story on the video below sum’s up the issues and feelings and I strongly recommend watching the short clip.

This also has potential significance for me personally. If I was to become intolerant to Glivec then I would effectively be denied the opportunity to try what is showing to be a successful alternative. For me it is my Plan B.

I (and all other CML patients) would appreciate if you could show your support by signing the petition:

Sign The Online Petition By Clicking This Link!

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Filed under chronic myeloid leukaemia, gleevec, glivec, imatinib, leukaemia, NICE

Interviewed by Russell Walker on BBC Radio York!

It has been an interesting morning after being inside the inner sanctum of BBC Radio York to be interviewed live on air by Russell Walker.

It is the first time I have been in a radio studio (apart from a 30 second recorded clip interview when I was 10!), it was great to see the set up and meet the team.

The 10 minute interview seemed to go in a flash, Russell was great and made it a relaxed chat about my story and fundraising walks with Sir Ian Botham and my Pennine Way Challenge.

I would also like to thank Anna Wallace who smoothed my transition into the studio which resulted in my dulcet tones being aired which can be heared by following the link below.

To listen you can go to my interview on the BBC iPlayer by clicking:

Harvey’s interview on BBC iPlayer

The interview starts on 43:00 minutes into Russell’s show and lasts for around 10 minutes. You can fast forward by dragging the time bar at the bottom along to the time.

Please be aware this is only on iPlayer for a few days, so if you come back at a later date and it is not there then sorry – it’s not under my control!

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Filed under chronic myeloid leukaemia, fundraising, gleevec, glivec, imatinib, leukaemia, leukaemia & lymphoma research, leukaemia research, pennine way, sir ian botham

Walking with Sir Ian Botham

The PR team have been in full swing with an article in the York Press on Thursday 18th February, page 16, titled ‘Striding Out With Beefy’.

As part of my fundraising I will be walking with Sir Ian in Manchester prior to my Pennine Way Challenge.

The full press release below:

‘A leukaemia survivor is preparing to join one of his childhood heroes, Sir Ian Botham, in Manchester on 10 April for the first leg of the cricketing legend’s walk for leading blood cancer charity Leukaemia & Lymphoma Research.

Harvey Greenwood, 39, was diagnosed with chronic myeloid leukaemia (CML) in March 2001. He will rendezvous with the former England all-rounder at Heaton Park for the final four miles of the day’s walk. Beefy’s walk will begin outside the Marks & Spencer’s store on Market Street and Sir Ian will then walk through the city before arriving at Heaton Park where people can join him in exchange for fundraising.

After visiting an optician nine years ago to investigate a problem with his vision, Harvey was advised to go to Southampton General Hospital for blood tests, which revealed he had had leukaemia for sometime: “It was the most frightening time of my life”, says Harvey, “the doctors were amazed that I had walked through the door at all – I was very lucky that the leukaemia hadn’t reached a more advanced stage”.

Although the next few months were a very stressful time for Harvey and his wife Fiona, thanks to the development of new drug treatments, he has been able to manage the disease by taking daily medication.

Recognising that he has been very fortunate, cricket fan Harvey is determined to help Leukaemia & Lymphoma Research get closer to a cure for all blood cancers: “After what I’ve been through beating blood cancers is very personal to me. I can’t wait to meet Beefy and get walking.”

Beefy will be walking through ten towns in ten days from 10-19 April. Setting out each day from a branch of event sponsor Marks & Spencer’s in the town centre, he will complete an approximate 10-mile route around the town, before making his way to a local park meet members of the public where they will join him for a sponsored walk.

Sir Ian says: “I never forget why I put myself through the pain and the blisters; I know it will mean in the future that every child and teenager diagnosed with leukaemia will survive. I won’t stop until we beat childhood leukaemia, but I need your help. Together we can make sure every child survives. Lets make this my best walk yet!”

If you would like to join Sir Ian on one of his walks please visit www.beefy25.com, email beefy25@lrf.org.uk or call Botham Walk Fundraising Coordinator David Blandford on 020 7685 5143. Or if you are unable to walk you can sponsor me at http://original.justgiving.com/harveygreenwood

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Filed under chronic myeloid leukaemia, fundraising, leukaemia, leukaemia & lymphoma research, leukaemia research, pennine way, sir ian botham

My Provisonal Pennine Way Schedule

I have just posted a page with my provisional Pennine Way Schedule so people looking to join me and see dates, distances and locations. Thanks to all who have already stuck their hands up and will be joining me at various locations. The more the merrier, I could really do with the support!!

Check HERE to see provisional dates.

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Pennine Way Taster – Video Aerial View

A quick taster video of what will be around Day 11 / 12 of my walk. The likelihood is that the video captures scenes which I will walk across both days dependent on where I make overnight stops.

The video covers from Middleton-In-Teesdale to the stunning High Cup which I have to say is one of the (many) highlights I am looking forward to seeing.

This incorporates a stretch of Teesdale with it’s Low Force and High Force waterfalls, Cauldron Snout, Cronkley Scar and Falcon Clints – enjoy!

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Filed under fundraising, leukaemia & lymphoma research, leukaemia research, pennine way, Uncategorized

My Pennine Way Challenge Facebook Group Now Online!

I have created a Facebook Group for Facebook users to easily follow My Pennine Way Challenge.

To join the group just click HERE!:

All are welcome, I look forward to seeing you there!

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Filed under fundraising, leukaemia & lymphoma research, leukaemia research, pennine way

CML – NICE – epetition response – Dasatinib (DS) & Nilotinib (NL)

Just a quick post to show the reply to 10 Downing Street’s latest reply to the Dasatinib and Nilotinib petiton and challenge to acceptance as 2nd line therapy for resistant / intolerant Imatinib (aka Glivec, Gleevec).

I am not going to comment directly here at this stage, as in my opinion there are huge flaws in the study for the judgement, however we await the full reply and go from there.

Direct quote from 10 Downing Street:

We received a petition asking:

“We the undersigned petition the Prime Minister to overturn the decision by NICE to refuse 2nd generation life saving drugs to CML patients.”

Details of Petition:

“Chronic myeloid leukaemia is a form of blood cancer. The current treatment is Imatinib (IM).

Approx. 40% of individuals may display resistance to IM. Dasatinib (DS) & Nilotinib (NL) are licensed for the treatment of adults with chronic & accelerated phase CML with resistance or intolerance to IM.

DS is also effective for Blast Crisis CML. Both received approval by the FDA & EMEA.

NICE do not accept the evidence supplied in the initial report, as they consider open label, non blinded trial designs seriously flawed.

Cost of supply is the issue. We are urging NICE to reassess their decision NOT TO fund the use of these EFFECTIVE treatments on the basis of cost – without the need for 4 arm (DS, NL, high dose IM) double blind randomised studies including a control group receiving ‘best supportive care’ – allowing none of them to crossover and no dose escalations according to how they respond.

The NICE assumed average age for CML is 60. Would you accept such a trial would be morally/ethically correct if it was aimed at young children with CML? What if your National Insurance scheme now doesn’t treat you with the best drugs because the cost is considered too high?.”

Read the Government’s response

In response to the concerns that many people have about the availability of dasatinib and nilotinib for the treatment of chronic myeloid leukaemia, the Department of Health should stress that the National Institute for Health and Clinical Excellence (NICE) has not yet published final guidance on the use of dasatinib and nilotinib.

NICE has recently issued draft guidance that does not recommend the use of dasatinib and nilotinib for the treatment of chronic myeloid leukaemia and registered stakeholders had until 7 December 2009 to submit comments.

NICE’s Appraisal Committee is considering the responses to the consultation and the Institute currently expects to issue its final guidance to the NHS in April 2010.

NICE is an independent body, which makes decisions on the clinical and cost effectiveness of products based on a thorough assessment of the available evidence involving extensive consultation with stakeholders and in the context of a finite NHS budget.

Some of these treatments cost thousands of pounds, so NHS bodies must find a balance between funding expensive drugs for a limited number of patients and providing services and treatments that will benefit many other people.

The Department recognises that the Institute’s decisions have serious implications for patients and their carers. These are very difficult decisions and they are made only after careful consideration.

It would therefore not be appropriate for Ministers or officials to intervene in an ongoing appraisal. However, several patient groups are registered stakeholders in this appraisal and concerned parties may wish to raise concerns about NICE’s guidance with one of these organisations. Details of stakeholder organisations can be found at: http://www.guidance.nice.org.uk/TA/Wave17/18

Where NICE guidance is not yet available for a treatment, the NHS Constitution gives patients a right to expect local funding decisions on the availability of drugs and treatments to be made rationally and on the basis of the available evidence. NHS organisations are also required to have processes in place for the consideration of exceptional cases, even where NICE has not recommended a particular drug or treatment.”

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Filed under chronic myeloid leukaemia, gleevec, glivec, imatinib, leukaemia, leukaemia research