Fundraising…it’s awkward!

It’s two weeks until the walk. We’re approaching 30 sign-ups for the day with more promises to come through. If each individual/family is able to raise £100 in sponsorship then we could raise nearly £2,000 toward the £10,000 total.

Easier said than done, right? Look, this fundraising lark is much more difficult than I could ever have imagined. Seriously, it’s caused sleepless nights. But it was never meant to be easy. £100 raised in sponsorship, £50, £25, whatever, is money that we have to work hard at. We have to ask friends, colleagues, family and tap into your networks. Without your support, we won’t ever hit that big target.

I’ve been living with leukaemia for 10 years and I’m one of the lucky ones. I’ve been through things that have been tough both mentally and physically. What I’ve learnt is that there are brilliant people out there diagnosing, treating and supporting people with the devastating diagnosis of a blood cancer. The money raised will be going right back into the system and ensure that we are even better at diagnosing and supporting.

I know it’s a pain and I recognise that asking for a charitable donation or sponsorship is completely awkward. There are 650 people diagnosed every year with my leukaemia (CML). Blood cancer is the third biggest cancer killer behind lung and bowel cancer. That moment of awkwardness could potentially save a life. That’s why I’m writing this and gritting my teeth through the awkwardness.

So sponsor me: www.justgiving.com/fundraising/kris10

Or join us, walk 10 miles with us: www.accesscmldrugs.wordpress.com/2018/08/30/charity-canal-walk-looking-for-participants-of-all-ages/

Thank you, Kris

P.S. Thank you to the Worcester News and the Kidderminster Shuttle for their support of the #Kris10 walk.

www.worcesternews.co.uk/news/16683894.join-kris-on-his-canal-walk-to-raise-money-for-worcester-charity-leukaemia-care/

www.kidderminstershuttle.co.uk/news/16683892.residents-urged-to-lace-up-their-walking-shoes-for-kidderminster-man-kris-griffins-charity-challenge/

Charity canal walk looking for participants of all ages

A picturesque canal walk set to raise funds for a Kidderminster man’s year of fundraising is looking for people of all ages to take part.

Kris Griffin is taking on a year of fundraising in celebration of reaching his 10-year anniversary since being diagnosed with chronic myeloid leukaemia (CML). All proceeds raised will be donated to Leukaemia Care, a national charity based in Worcester who support anyone affected by a blood cancer diagnosis.

The canal walk has been organised by Kris’ wife, Kelly Griffin, and will start and end at the Anchor Inn Pub on the Diglis Docks, with walkers following the 10-mile scenic route towards Droitwich and back again.

Kris said, “What can be better than a brisk 10-mile walk around the waterways of Worcestershire on a Sunday afternoon? The money we are raising is going to save lives and I’m sure we’ll have a blast doing it.

“The support that we’ve received so far has been really encouraging but we need more walkers, so dust off those walking shoes and join us.”

So far, Kris has raised over £4,000 of his £10,000 target, and with the walk coinciding with September’s Blood Cancer Awareness Month, he hopes to get ever closer to his goal whilst raising awareness of leukaemia. For the past two years, the charity has marked Blood Cancer Awareness Month with a month long #SpotLeukaemia campaign to highlight the signs and symptoms of leukaemia.

The walk will take place on Sunday 23rd September at 11am. Anyone wishing to take part in the walk can request a sponsorship form from Leukaemia Care by calling 01905 755 977 or emailing fundraising@leukaemiacare.org.uk.

If you’d like to make a donation to Kris’ fundraising, head to his JustGiving page: https://www.justgiving.com/fundraising/kris10.

Birthday Thanks

Just a huge note of thanks to everyone who donated and sent birthday wishes. I raised £343 towards my #Kris10 campaign. That’s a lot of socks and pants.

We’re fast approaching £2,000 and we’ve taken a step closer to that HUGE £10,000 target.

Never too late to donate. www.justgiving.com/kris10

Big thanks. Kris.

Happy birthday to me!

Happy birthday to me, happy birthday to me, Happy birthday dear me, happy birthday to me.

That all sounds rather self-congratulatory but I’m using my birthday as a weapon to raise money so I’m vindicated, forgiven and a year older.

Ten years ago when I was diagnosed with chronic myeloid leukaemia (CML) I wasn’t sure if I was going to live to 33 and now ten years later, I’m still here age 43; pretty good at maths too!

To celebrate the ten years since diagnosis (or as the Bee Gees would say, Stayin’ Alive), I’ve set myself a challenge to raise £10,000 for Leukaemia Care, the Worcester-based national charity that I’m a trustee of. The money will be spent training more GPs about the signs and symptoms of blood cancer. It will save lives.

So instead of showering me with gifts and cards this year, I’m encouraging you to throw money at me. That’s right, I’m making the ultimate sacrifice and giving up my birthday. No new socks and pants this year but we all get a warm and fuzzy feeling for doing the right thing.

Also, I got a target to hit, that £10,000 isn’t going to raise itself. So, join me, in wishing me, a happy birthday. Donate at www.justgiving.com/kris10 or text KTEN99 £5 to 70070 to donate £5.

All together now…for he’s a jolly good fellow…

One Week In For #Kris10

We’re a week in, only 51 weeks left to go! If you haven’t donated yet there’s plenty of time.

Nearly £900 of donations have come in, we’re approaching 10% of our target. I’m absolutely delighted and send my thanks and appreciation to everyone who has supported me so far.

Plans are coming together for a 10-mile walk on the 23rd September, the day after world CML day. We’ll start in Worcester and walk to Droitwich. As soon as we open sign-up, I’ll drop a message. Keep that date free!

Tickets are selling for the concert at the Cavern Club and we haven’t even announced any acts yet! More to come on that too. It’s on the 1st November and you can buy tickets now: http://bit.ly/CavernClubKris10.

The local media have been incredibly supportive, click the publication to open the story:

Kidderminster Shuttle
Worcester News
Express & Star

I’ve also been interviewed by my good friend Cavan Scott who is a number one best-selling author and comic writer for both adults and children. You can find the interview here: http://bit.ly/2o73ofl

If you can help me reach my £10,000 target through supporting any of the events, donating or getting involved, please contact me or visit www.justgiving.com/kris10.

To follow my story and to find out more about the fundraising, search online using the hashtag #Kris10.

Thank you. Kris

I’m celebrating a decade since diagnosis with £10,000 fundraising goal!

I was diagnosed with Chronic Myeloid Leukaemia (CML) in 2008, aged 32, after visiting my GP with symptoms such as night sweats and pain in my hip. A blood test went on to reveal a leukaemia diagnosis which had me asking the question, “Am I going to die?”

When you’re told you have a leukaemia, or a blood cancer, or some other terrible disease, you never forget what being told feels like. There’s a ringing in the ears, everything just drains out of you. You just feel like you’ve been punched, really hard, but you feel no pain.

Now ten years on, I’m a marketing expert, blood cancer charity trustee and a passionate campaigner working with fellow leukaemia patients across the world seeking access to treatment. I’m also a seasoned public speaker, I recently spoke at a training day for 40 West Midlands GPs to help them understand what a blood cancer diagnosis feels like from a patient perspective.

The diagnosis made a huge difference to my life. Clearly, I could do without it, but it has made me a better person, I’ve no doubt about that. It’s made me recognise the important things in life.

To celebrate ten years since diagnosis, I’ve set myself a challenge to raise £10,000 for Leukaemia Care, the Worcestershire-based national charity that I’m a trustee of. I am also donating 10 days of my time to help support the charity, from marketing support to holding live webinars for anyone affected by a blood cancer diagnosis.

One of my key events in this year of fundraising will include a gig which is being held at the Cavern Club in Liverpool on 1st November 2018. As a huge Beatles fan, I was delighted when the Cavern Club gifted the space to hold the fundraising event. Other fundraising ideas include a 10-mile walk and donating my birthday to the charity in lieu of presents.

Nicole Scully, fundraising manager for Leukaemia Care said, “Kris is a fantastic example of somebody who is living well with a blood cancer. Kris is using his own strength to support others who sadly may not be living as well as he is. His fundraising pledge is a huge boost to the charity and will enable us to train more GPs about the signs and symptoms of blood cancer, support haematology nurses and continue to fund our support services for patients. We’re really excited to see how Kris’ year pans out.”

Tickets for my charity gig in Liverpool are now available through the Cavern Club website http://bit.ly/CavernClubKris10.

To follow my story and to find out more about the fundraising, search online using the hashtag #Kris10, follow Leukaemia Care on social media or visit the JustGiving page: www.justgiving.com/fundraising/kris10.

Professor Tessa Holyoake Memorial

The loss of Professor Holyoake is a massive blow to the CML community and a sad loss to her family. Below, you can find a link to a page of remembrance.

Professor Holyoake was a world-leader on Chronic Myeloid Leukemia (CML) achieving outstanding results in CML. Through her research, she developed methods to purify the cells of leukaemia patients. Her most recent study analysed both CML and normal blood stem cells and the key to the survival of CML stem cells. The team led by Professor Holyoake then developed a drug combination to simultaneously target these critical proteins and kill the CML stem cells.

The page will be collated with comments from CML patients all over the world. Most won’t have known her, but many will have benefitted from her work.

It would be nice to show our appreciation, the tributes and photos will be used in a Memorial Book for her family.

Thank you. Kris

www.cmladvocates.net/professor-tessa-holyoake-memorial

Ponatinib (Iclusig) – GREAT NEWS!!!

I love news like this, especially when it’s been four-years in the making.

Iclusig (ponatinib) for the treatment of Chronic Myeloid Leukaemia (CML) in adult patients with chronic phase, accelerated phase, or blast phase 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.

For CML patient in England, this means we now have another safety net that is readily available for consultants to prescribe immediately. This is going to make a big difference to treatment options and the mental well-being of many patients.

Just a quick shout to all of the people who work for and are associated with Incyte (formally ARIAD) who’ve never given up on this and have worked so hard to get it to us. Congratulations and thank you.

NICE has also recommended ponatinib for treating Philadelphia-chromosome-positive acute lymphoblastic leukaemia in adults. Hit the link for more info on this: www.leukaemiacare.org.uk/news/NICE-recommends-ponatinib

The full press release follows.

Kris

 

NICE Issues Positive Final Recommendation for Iclusig (ponatinib) for Chronic Myeloid Leukaemia (CML) in England

CML patients across the UK who are resistant or intolerant to second generation tyrosine kinase inhibitor (TKI) therapies will now have equal access to Iclusig

LONDON, UK [28 April 2017] – Incyte Corporation (Nasdaq:INCY) announces that the National Institute for Health and Care Excellence (NICE) Technology Appraisal Committee (TAC) has published a positive Final Appraisal Determination (FAD) recommending Iclusig^â (ponatinib) for the treatment of Chronic Myeloid Leukaemia (CML) in adult patients with chronic phase, accelerated phase, or blast phase 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.[i]

The positive FAD from NICE brings CML patients in England in line with those in Wales and Scotland who have had full-access to Iclusig, according to its license,[ii]^,[iii] since 2015; providing patients with CML across the UK who have failed other treatments equal access to an additional and important option.

“Today’s decision is important for patients with CML who have failed other treatments, as well as for physicians in England, who will now have access to the clinical benefits of Iclusig,” commented Mark Tanner, General Manager of Incyte Bioscience UK. “Together with the CML community, we have worked very hard over the last four years to encourage NICE to reconsider their original evaluation and are delighted that NICE has acknowledged the unmet need and the value that Iclusig brings.”

CML is a rare blood cancer with around 700 new cases each year in the UK.[iv]  CML affects economically active people, with around 50 percent of UK cases in people aged under 65 years.^iv Many patients with a new diagnosis of CML have a prolonged clinical benefit from targeted therapy with tyrosine kinase inhibitors (TKIs). However, there has been a high unmet need and poor prognosis for patients whose advanced disease is resistant and intolerant to other therapies.[v] Once available treatment options are exhausted, the prognosis can be poor.^v  Despite advances in treatment, there remains a need for additional effective therapies for the management of CML.[vi] Iclusig fulfils an important need in the treatment pathway for CML patients and provides clinicians and patients with a full suite of treatment options for CML.

Professor Jane Apperley, Department of Haematology, Imperial College School of Medicine, Hammersmith Hospital, London said, “This is an exciting and long-awaited outcome, which allows physicians to manage patients in a logical and clinical-evidence based manner with the goals of improving long-term survival and providing a good quality of life.”

Iclusig was approved by the European Commission[vii] in 2013 as an orphan drug for the treatment of adults with chronic phase, accelerated phase, or blast phase 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. In Ph+ALL (Philadelphia chromosome‒positive Acute Lymphoblastic Leukaemia) patients, Iclusig is licensed for adult patients with Ph+ ALL who are resistant to dasatinib; who are intolerant to dasatinib and for whom subsequent treatment with imatinib is not clinically appropriate. Iclusig is also licensed for people with CML and PH+ALL who have T315I mutation.[viii]

About CML and Ph+ ALL

CML is a cancer of the white blood cells that is diagnosed in approximately 7,000 patients each year in Europe.[ix] CML is characterized by an excessive and unregulated production of white blood cells by the bone marrow due to a genetic abnormality that produces the BCR-ABL protein. After a chronic phase of production of too many white blood cells, CML typically evolves to the more aggressive phases referred to as accelerated phase and blast crisis. Ph+ ALL is a subtype of acute lymphoblastic leukaemia that carries the Ph+ chromosome that produces BCR-ABL. It has a more aggressive course than CML and is often treated with a combination of chemotherapy and tyrosine kinase inhibitors. The BCR-ABL protein is expressed in both of these diseases.

About Iclusig^® (ponatinib) tablets

Iclusig targets not only native BCR-ABL but also its isoforms that carry mutations that confer resistance to treatment, including the T315I mutation, which has been associated with resistance to other approved TKIs.

In the EU, Iclusig is approved for the treatment of adult patients with chronic phase, accelerated phase or blast phase chronic myeloid leukemia (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, or the treatment of adult patients with Philadelphia-chromosome positive acute lymphoblastic leukemia (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.

Incyte has an exclusive license from ARIAD Pharmaceuticals, Inc, a wholly owned subsidiary of Takeda Pharmaceutical Company Limited, to develop and commercialize Iclusig in the European Union and 28 other countries, including Switzerland, Norway, Turkey, Israel and Russia.

About Incyte

Incyte Corporation is a U.S.-based biopharmaceutical company focused on the discovery, development and commercialization of proprietary therapeutics. For additional information on Incyte, please visit the Company’s website at www.incyte.com.

Follow @Incyte on Twitter at https://twitter.com/Incyte.

[i] NICE. 2017. Final Appraisal Determination: Ponatinib for treating chronic myeloid leukaemia and acute lymphoblastic leukaemia. Available at https://www.nice.org.uk/guidance/gid-ta10060/documents/final-appraisal-determination-document Last accessed 28 April 2017

[ii] All Wales Medicines Strategy Group. Ponatinib (Iclusig). Appraisals. Available at: http://www.awmsg.org/awmsgonline/app/appraisalinfo/1163. Last accessed 24 March 2017

[iii] Scottish Medicines Consortium. SMC Advice. Ponatinib (Iclusig). Available at: http://www.scottishmedicines.org.uk/SMC_Advice/Advice/1032_15_ponatinib_Iclusig/ponatinib_Iclusig. Last accessed April 2017.

[iv] CRUK. Chronic myeloid leukaemia (CML) incidence statistics. Available at: http://www.cancerresearchuk.org/cancer-info/cancerstats/types/leukaemia-cml/incidence/. Last accessed April 2017.

[v] Cortes JE, KimD-W, Pinilla-Ibarz J, et al. A Phase 2 Trial of Ponatinib in Philadelphia Chromosome–Positive Leukemias. N Engl J Med 2013;369: 1783-1796. Available at: http://www.nejm.org/doi/pdf/10.1056/NEJMoa1306494.

[vi] Woessner DW, Lim CS, Deininger MW. Development of an Effective Therapy for CML. Cancer J 2011;17(6):doi:10.1097/PPO.0b013e318237e5b7. Available at: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3251313/pdf/nihms-332259.pdf. Last accessed April 2017.

[vii] EMA. Iclusig EPAR summary for the public.  Available at: http://www.ema.europa.eu/ema/index.jsp?curl=pages/medicines/human/medicines/002695/human_med_001656.jsp&mid=WC0b01ac058001d124. Last accessed April 2017.

[viii] Iclusig Summary of Product Characteristics. Available at: http://www.medicines.org.uk/emc/medicine/28145. Last accessed April 2017.

[ix] Rohrbacher M, Hasford J. Epidemiology of chronic myeloid leukaemia (CML). Best Pract Res Clin Haematol. 2009 Sep;22(3):295-302. Based on current estimate of population of Europe (738,199,000 in 2010).

 

All-Party Parliamentary Group on Blood Cancer Launches Inquiry

You may remember that I spoke at the inaugural All-Party Parliamentary Group (APPG) on Blood Cancer earlier in the year. I’m delighted to say that the first inquiry undertaken by the APPG, will look at all aspects of blood cancer, including awareness, diagnosis, patient experience, commissioning of services and clinical research.

The inquiry has a wide remit and will be summarising findings and recommendations in a report to be published later this year.

This report will provide an important overview of the blood cancer landscape and will raise a range of issues which the APPG will explore in more detail in the months and years ahead.

As part of this inquiry, the APPG will be holding oral evidence sessions and inviting written evidence from stakeholders including patients and carers. Submissions can be made via an online form, by email or through the post by 27th April.

Henry Smith MP, Chair of the All-Party Parliamentary Group on Blood Cancer said: “Blood cancer is the third biggest cancer killer in the UK, and the fifth most common cancer overall, yet awareness among the general public and policy audiences is still low. We need to make sure that NHS provision meets the needs of all cancer patients, especially in areas such as blood cancer where the patient journey differs from the majority of solid tumour cancers.

“We have a deliberately wide remit for this inquiry, the first of the APPG on Blood Cancer – this inquiry and subsequent report will provide a valuable overview of the blood cancer landscape, and I’m sure it will raise several issues that the APPG will want to explore in more detail in future inquiries.”

PLEASE engage with this process, I hope that the APPG will provide an incredibly powerful force in ensuring blood cancer patients are not forgotten about or left behind. It is imperative that patients support the process and the people behind it.

Please click here for more information on the group, or follow them on Twitter: @APPGBloodCancer.

Thanks, Kris

Henry Smith MP, Chair of the All-Party Parliamentary Group on Blood Cancer

(Another) open letter to Dr Fielden: generic imatinib

I don’t take any pleasure in having to follow-up letters that haven’t been replied to, especially letters about something so important. I also dislike having to copy senior people in to force a reply out of someone, it feels childish and wastes time.

But, I’m left with no other option. The letter speaks for itself and I’ve linked PDFs to the two letters that have gone unanswered. I hope that this provokes a dialogue that reassures patients about the generic process. Thanks, Kris

 

Dr Jonathan Fielden
Director of Specialised Commissioning – NHS England
xxxxxxxxx
xxxxxxxxxx
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17^th March 2017

Dear Dr Fielden,

RE: Imatinib – your reference JF 16-1201.1

Sorry to have to write again but it has been a month since I asked for a swift response to my letter dated 16^th February 2017. I should also note that the reason I sent the letter in February is because I didn’t receive a reply to the letter dated 21^st December 2016.

I am concerned by your lack of communication and so are the CML patients that I represent, numbering around 2,000. I have copied the Secretary of State for Health, the Chief Executive of NHS England and my local MP who I hope will encourage you into dialogue with me. I have attached my previous communication and if need be my local MP, Mark Garnier, will vouch for my credibility, he is aware of my advocacy and has been incredibly supportive over the years.

At a time when you are expecting blood cancer patients to make significant changes to their treatment, I am appalled by the lack of communication and care that has been shown. I hope that we can kick-start this relationship and give CML patients some reassurances that their questions and concerns are being taken seriously and explored. Given the amount of money that the switch to generics will save the NHS, it is surely the very least that can be done.

With stretched budgets, patient advocates and charities are under increasing pressure to fill gaps. I am proud to represent my fellow patients and I will not stand by and be done unto and I will not go away. We are a ground-breaking bunch of cancer survivors and I expect to be treated with the same amount of dignity and respect by NHS England that we are shown at all other touchpoints within the NHS.

I’m sure you appreciate how important it is for patients to have faith in the system, I look forward to answers in full for all my questions including this addition to my previous letter.

5. Some patients are reporting that consultants aren’t fully briefed on the switch. What measures have been put in place to ensure information has been disseminated and how is the data from new side-effects being monitored and centrally collated? Some patients are reporting new and different side-effects after switching.

The concerns I had in my previous letter still stand; the process that brought generic imatinib to market is flawed and this is now being realised. I hope that you can provide the reassurances that are needed.

Yours sincerely,

Kris Griffin (Mr)
078xxxxxxxx

CC: Secretary of State for Health, The Right Honourable Jeremy Hunt MP
CC: Chief Executive of NHS England, Simon Stevens
CC: MP for Wyre Forest, Mark Garnier
CC: CML-UK Facebook Group
CC: CML-Worldwide Facebook Group
CC: Access CML Drugs blog

 

Letter to Dr Fielden dated 21st December 2016 – PDF
Letter to Dr Fielden dated 16th February 2017 – PDF