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

The Girls – a musical comedy

Yesterday, Kelly (my wife) and I attended a special performance of The Girls at the Phoenix Theatre in London.

The Girls follows on from smash hit play and film Calendar Girls, the true story of a group of Yorkshire housewives who posed nude in order to raise funds to buy a settee for their local hospital, in memory of one of their husbands. To date, they have raised almost £5million for Bloodwise. This musical comedy shows life in their Yorkshire village, how it happened, the effect on husbands, sons and daughters, and how a group of ordinary ladies achieved something extraordinary.

Me with the amazing REAL Calendar Girls (2013)

The show has brought together the writing talents of Gary Barlow and Tim Firth; it originally opened at The Grand Theatre in Leeds and The Lowry Theatre, Salford. Now it’s in the West End until April.

We were kindly invited by the producers of the show and by Bloodwise, along with lots of other patients and many health care professionals. This was the first performance at The Phoenix and as we settled into our seats, we weren’t sure what to expect.

The show was a smash; great songs, as you would expect from Gary Barlow, and a fluid, creative set. All of the performance were strong and the time flew by. The incredibly familiar story was brought to life in a way the film and the previous production didn’t, it was all too easy to fall in love with these characters again. The show ended with a magnificent standing ovation from a packed theatre.

The trouble is that it’s an incredibly difficult watch. 24 hours later and I’m still completely and utterly emotionally drained. The scenarios and situations felt all-too-real and I’m not ashamed to say that I spent the majority of the performance with tears streaking down my face.

The subject of blood cancer and an ultimately tragic illness were dealt with respectfully and with great compassion and as a patient, I didn’t feel patronised at all.

My emotional connection wasn’t helped by the fact that I’ve spent time with the real Calendar Girls. At two Bloodwise Impact Days, I’ve been led astray by the girls and their husbands (the boys?) until the early hours. They are incredible company and the relationships I saw on stage were an uncanny reflection of people I’ve spent time with.

This show deserves to play packed houses for the entire run, it’s a wonderful night out. It’s a show where you’ll find real emotional attachment. The people are real…really, real. And the comedy is real, the laughter is real, the passion is real and the potential life-affirming outcome from a tragic illness are real. It’ll make you want to plant a sunflower and toast ‘Clarky’. Congratulations to all involved.

Huge thanks to Bloodwise (especially Andy), the UK’s specialist blood cancer charity, who hosted patients and really looked after us. Bloodwise will receive monies from the production.

www.thegirlsmusical.com
Bloodwise: The Girls

Bloodwise Video – Kris Griffin (me)

Long time no see. I hope all is well. Just wanted to drop in with some shameless self promotion and to celebrate my association with Bloodwise (formally Leukaemia and Lymphoma Research).

I recorded this video some time ago now, it’s just been put live. I’m delighted with the results and I’d urge you to have a look at this and the other videos to learn a little more about the lives of blood cancer patients.

Thanks, Kris

‘Unlocking off-patent drugs’ campaign

Thanks to Bloodwise for this info – too important not to share. Thanks, Kris

Next Friday (6 November) the Off-patent Drugs Bill is expected to have its second reading in parliament. Here we highlight the key issues under discussion, why they are relevant to blood cancer patients and the ways you could get involved to support this Bill.

Context
Thanks to breakthroughs in research several existing drugs have been found to be effective in treating conditions other than the ones they were originally made and patented for.
These drugs are known as ‘off-patent’ and in order for them to be made routinely available they need to be licensed and approved for their new uses. These drugs are safe and cheap but because they are re-purposed these drugs are not getting to all patients who may benefit from them. The major hurdle in this process is the way drugs are licenced in the UK.

Barriers to licensing
Rather than price being a restriction, it is the lack of a pharmaceutical company to sponsor the treatment that presents a significant barrier to these re-purposed drugs reaching patients.
Because the price of a drug substantially falls once a patent has expired, there is little incentive for a pharmaceutical company to sponsor the licensing process for an off-patent treatment and the UK has no system in place to enable old drugs to be re-licenced for new purposes.

What the Bill would do
That is why Nick Thomas-Symonds MP has introduced the Off-patent Drugs Bill in Parliament, which Bloodwise are supporting alongside a number of other organisations led by Breast Cancer Now.
The Bill would put into UK law a duty on the government to act in the public interest to license and approve off-patent drugs for use on the NHS, when they have been shown to be effective in their new purpose by the necessary trials and journal articles.
The Bill could benefit a huge number of patients across a range of diseases including blood, breast and prostate cancers, multiple sclerosis, Parkinson’s and Alzheimer’s. It also presents a crucial opportunity to take advantage of inexpensive drugs that have benefits beyond their intended uses.

The use of off-patent drugs to treat blood cancer
The ‘redeployment’ of drugs originally developed to treat other conditions has had notable success in recent years in the blood cancer field. Thalidomide, which was originally developed in the 1950s for the control of morning sickness in pregnancy, has now become part of standard treatment for the blood cancer, myeloma.
Because Thalidomide is off-patent it is cheap and relatively well evaluated, and its use has since sparked the development of similar promising drugs for myeloma – a disease where new therapies are desperately needed.

How you can help
In order for the Bill to become law enough MPs need to attend its crucial second reading debate on Friday 6 November and vote in favour of the Bill. The vote is on Friday, when most MPs return to their local constituencies, which will make it more difficult to get a large number of MPs in Parliament to support the Bill. That is why we’re joining up with other organisations in calling on MPs to attend the debate and vote in favour of the Bill.

To find out more about the Bill and email your MP to encourage them to back it, visit Breast Cancer Now’s ‘Unlocking off-patent drugs’ campaign page.

Letters from NHS England and 10 Downing Street

Some very pertinent housekeeping. Earlier in the year David Ryner from CML Support asked me, Bloodwise, Leukaemia Care and CML-UK (Facebook) to co-sign a letter he penned to Simon Stevens (Chief Executive of NHS England) and Prime Minister, David Cameron. The letters and responses are all posted below.

The letter from Professor Sean Duffy confirms that the new model for the evaluation of drugs, including cancer drugs, following the Accelerated Access Review’ s report will be launched on April 1st 2016. Not good enough. I want to make this clear. We currently don’t have a method of evaluating new drugs and the old method was flawed (see the issues ponatinib had with small population numbers). This gap in service and the delisting of life-saving drugs is going to kill people.

I’m making this extra clear because a politician I’ve spoken to recently questioned me, quite ferociously, on the launch date of the new model. I know that this politician subscribes to my blog updates and I hope that they now have all of the facts they need to do something about the issue and register their protest.

A huge thanks to David Ryner from CML Support for coordinating this activity.

Kris Griffin

LETTER TO SIMON STEVENS

Dear Mr Stevens,

We are writing to you regarding the recent announcements relating to the Cancer Drugs Fund (CDF) and the specific decisions that have been taken on treatments for chronic myeloid leukaemia (CML).

As patient groups representing the concerns of patients with CML, we are particularly alarmed by both the inclusion of CML treatments in the next review of the CDF for delisting at the end of this month, and by the suggestion that there may not be any further meetings of the CDF panel to consider new treatments or indications for the remainder of the 2015/16 financial year.

In particular, I would like to draw your attention to the situation currently facing two medicines which treat patients with more advanced CML, who therefore face severely limited treatment options. Bosutinib is scheduled for review at the next meeting of the CDF panel at the end of this month. Ponatinib, a drug which has never been appraised by NICE due to its small patient population, is only available through the CDF for patients with the T315i mutation, rather than in its full licensed indication. Ponatinib was due to be assessed by the CDF panel for its full licence in June, before the cancellation of the last scheduled meeting.

This situation for those patients needing access to ponatinib is particularly acute; with NHS England’s Commissioning Intentions for 2015/16 committing to producing algorithms for all chemotherapy within the year, ponatinib now faces the prospect of being effectively excluded from the CML algorithm entirely, with the exception of the T35i mutation.

When the threat to bosutinib is factored in and with the exception of the minuscule number exhibiting the T315i mutation, patients in England now face a lack of access to two of the five drugs that are currently available to them. The clinical effectiveness of these drugs in being able to secure optimal responses at speed and scale relative to the current entry level CML inhibitor, imatinib, now over a decade old, is well established.

The Government’s Accelerated Access Review (AAR) demonstrates a welcome recognition that current evaluation processes require revision to ensure they are fit for purpose in assessing the new generation of innovative products, including targeted therapies for CML. We recognise, too, that the CDF needs to adapt its processes to remain in step with the wider Government agenda.

It is therefore bewildering, contradictory and illogical for NHS England’s real time activity to be moving in the opposite direction of travel in reversing, rather than accelerating, access to targeted therapies for CML. This is made even more remarkable given the fact that, relative to other CDF list treatments, the performance of this class of drugs has been considered outstanding when judged against standard measures of survival. As a result, the overwhelming majority of patients are now able to secure decades of benefit from these home-based oral therapies, with their lives returning to near normal (and patients enjoying near-normal life expectancy) following treatment.

Such marked improvements in CML patient outcomes have been achieved by the steady increase in targeted therapies. We believe that to withdraw the opportunity from patients who would benefit from targeted CML therapies such as ponatinib and bosutinib is both discriminatory and perverse and we would strongly urge you to reconsider this decision by NHS England.

Yours sincerely,

xxxx

cc. Rt Hon Jeremy Hunt MP

RESPONSES

from the Department of Health (Malcolm Jones)

from NHS England (Professor Sean Duffy)

LETTER TO RT HON DAVID CAMERON

Dear Prime Minister,

We are writing to you following the intervention you recently made to NHS England regarding its consideration of the funding of medicines for a number of rarer diseases, to make you aware of the situation patients with chronic myeloid leukaemia (CML), a rare form of blood cancer, currently face.

As patient groups representing patients with CML, we were concerned with recent announcements relating to the Cancer Drugs Fund (CDF) and the specific decisions that have been taken regarding treatments for CML. We have great concerns about the fact that the CDF panel will not now consider any new treatments or indications for the remainder of the 2015/16 financial year, meaning new and innovative treatments for CML will remain unavailable to patients, and that CML treatments currently available on the Fund are at risk of being delisted.

CML is treated with targeted therapies which have ensured marked improvements in patient outcomes but mean patient sub populations are small. Patients need to have a wide range of treatment options available to them because of the problem of resistance to medicines, as well as contraindications and co-morbidities which mean some patients are unable to tolerate certain drugs currently within the treatment pathway.

Patients with more advanced CML face severely limited treatment options, with two of the five CML drugs either at-risk or unavailable to all patients who would benefit. Bosutinib, a second-line treatment for CML, is at risk of being delisted from the CDF following its inclusion in the review of current treatments conducted by the CDF panel on the 29th and 30th July. Ponatinib, a drug which has never been appraised by NICE due to its small patient population, is currently only available through the CDF for patients with the T315i mutation, rather than in its full licensed indication. Ponatinib was due to be assessed by the CDF panel for its full licence in June, before the cancellation of the last scheduled meeting, and now has no opportunity to be appraised for clinical and cost effectiveness, meaning the wider CML patient population are unable to access the drug other than through Individual Funding Requests (IFRs).

The clinical effectiveness of both drugs in being able to secure optimal responses at speed and scale relative to the current entry level CML inhibitor, imatinib, now over a decade old, is well established. The following comment from a patient on ponatinib, which was used in the CML Support Group submission to the SMC in Scotland – who approved the drug for its full licence – confirms its clinical effectiveness; “Ponatinib for me represents a quantum leap forward in the treatment of my CML and the impact of this condition on my family and work life. For me, even though I am likely to have to take this for life, ponatinib represents the optimum treatment that I could have expected and hoped for beyond the major trauma and loss of employment that the only other “ total “ cure , a bone marrow transplant, represents.”

We were reassured to read your comments in a letter to the Specialised Healthcare Alliance dated 28th April 2015, in which you stated “I am absolutely committed to ensuring that patients with rare diseases have access to the latest and most effective treatments that represent value to the NHS and deliver benefits to patients.” Any assistance you could offer in ensuring CML patients have access to the full range of effective treatments would be greatly appreciated. In addition, we would be grateful of any clarity you are able to secure on our behalf from NHS England regarding the new system of appraisal – particularly in terms of when the CDF will consider new medicine appraisals, and how medicines for rarer cancers and those with small patient populations will fit into the new system of evaluation – which will replace the current CDF when it ends in March 2016.

Yours sincerely,

RESPONSE

from 10 Downing Street (Ed Whiting)