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

All Party Parliamentary Group on Cancer (APPGC) consultation

Just wanted to drop this link in to a very important consultation:

The All Party Parliamentary Group on Cancer (APPGC) is seeking the views of the cancer and wider health community about what should be the cancer priorities of each of the five new NHS England ‘domains’. And we want to hear your views. Respond to the consultation.

http://www.macmillan.org.uk/GetInvolved/APPG/Cancer-Priorities-Consultation.aspx#Takepart

Thanks,

Kris

Letter to Rt. Hon. Andy Burnham MP

Further to the media attention we received yesterday in trying to get some answers on the Cancer Drug Fund and the future funding for dasatinib I’m sending the Shadow Secretary of State for Heath, Andy Burnham another letter. I didn’t receive an answer to my February correspondence with him. K.

Rt Hon Andy Burnham MP
Shadow Secretary of State for Health
House of Commons
London    SW1A 0AA

5th April 2013

Dear Mr Burnham,

My name is Kris Griffin and I am the founder of the Access CML Drugs Blog, which campaigns to improve patient access to treatments for Chronic Myeloid Leukaemia (CML). I wrote to you about the issues facing CML patients in early February, however I have not yet received a response. You may remember that we briefly discussed this issue at the Britain Against Cancer conference back in December and I would welcome the opportunity to have an exchange of views about the availability of treatment for the disease and current access to medicines arrangements.

You will be aware that the future of the Cancer Drugs Fund is an issue that has received significant media attention this week. A number of patient groups have raised concerns that when the fund ends in April 2014, patient access to medicines will be severely restricted. This is certainly true for CML patients as the only NICE approved drugs available are imatinib and nilotinib. However for a number of patients, including myself, these two treatments are not effective.

There are now fewer drugs available for the treatment of CML than when I was diagnosed five years ago. Due to the vagaries of the NICE appraisal process, the drug that has kept me alive, dasatinib, is no longer available via the NHS. In the majority of cases, access through the Cancer Drugs Fund is the only way that patients can receive life-saving treatments such as dasatinib.

Whilst I understand that you do not support the continuation of the Cancer Drugs Fund, I would be keen to hear your views on how patient access to treatments could be improved. Particularly, I would be interested to hear how this issue sits within Labour’s recently announced health policy review. Similarly, I was also interested to hear your recent policy announcement on the future of the NHS and the prospect of “whole person care”. While I hope that your plans to change local commissioning of services can lead to less geographical variation in the treatment of rarer cancers, I would be very keen to hear your views on how access to medicines arrangements would operate under this system. I would be more than happy to work with you on this issue and help ensure that patients are able to have access to the widest range of cancer treatments.

The situation I have described is not unique to CML and many people suffering from rarer cancers will experience the same trouble accessing potentially life-saving medicines. That is why access to medicines programmes such as the Cancer Drugs Fund are so important. I would be delighted to discuss the issue of Chronic Myeloid Leukaemia and access to medicines with you further at a later date.

Kind regards,

 

Kris Griffin
Access to CML Drugs

Britain Against Cancer 2012 report

Recently I attended Britain Against Cancer, a one day conference in London where politicians, clinicians and patients come together to talk about the issues surrounding cancer policy in the UK.

I attended this conference as I wanted a chance to explain why CML patients need access to a wide range of treatments.  Regular readers will know that I am currently being treated for Chronic Myeloid Leukaemia (CML) with dasatinib. Whilst other treatments, including imatinib and nilotinib, are available having been approved by NICE, dasatinib is only available on the Cancer Drugs Fund (CDF).

I am concerned that, across the country, patients have variable access to dasatinib and other non NICE approved treatments through the CDF.  It is important that CML patients have access to a wide range of treatments as for some, neither imatinib nor nilotinib prove clinically effective or patients find the side effects too severe.  This is the reality for CML patients and I wanted to make sure that attendees at the conference were aware of this.

The first speech I heard was from the Labour Shadow Health Secretary Andy Burnham and what struck me most were his comments about the Cancer Drugs Fund (CDF).  The CDF is designed to give patients access to cancer drugs that have not been approved by NICE and this is the route that many CML patients take in order to access dasatinib.  In his speech Burnham explained that he did not support the continuation of the CDF and he did not view it as a funding priority for the NHS.

I disagree with this.  My personal experience of the CDF is that patients can receive drugs that they otherwise would not. If the CDF is removed and nothing is put in its place then there is a risk that access to CML drugs will get worse, not better.

I raised this issue with Andy shortly after his speech and explained that it is critical that patients have access to as broad a range of treatment options as possible.  He agreed that this is indeed important and requested that I write to him following this conference.  I will of course write to him and make this case in more depth.

After taking part in a session about including the patient voice where I highlighted the need for patients to be involved with cancer networks, we took a break for lunch.  Refuelled and refreshed I then heard from Sir Mike Richards who was the former National Clinical Director for Cancer and the now Director of Domain One of the NHS Outcomes Framework.  I explained to him that it was important that not only were the right treatments available, but that the NHS didn’t lose sight of treating rarer cancers such as CML.  Sir Mike agreed and pointed to the recent figures on CML, as reported on this blog post , which showed that the deaths from CML have halved.

We then heard from the Secretary of State Jeremy Hunt who gave a wide ranging speech that focused on the importance of improving patient outcomes and even covered dementia.  It was interesting to hear him speak so much about dementia, as it is expected that this will be a core focus of the Government in the run up to the next general election in 2015.  I managed to catch up with him afterwards and made clear my views about the importance of the CDF.  He told me that whilst the Government is very proud that 23,000 people have currently received treatment through the CDF, he could not yet give further details as to whether the scheme would be extended post 2014.  I intend to write to Mr Hunt to raise this issue again and to ensure that access to CML drugs is at the forefront of his thinking in the run up to the next election.

I found Britain Against Cancer to be a very rewarding experience and I welcomed the opportunity to express the views I raise on this blog, in person to politicians and key decision makers.  I am keen to use the momentum from this event to further my campaigning activity and I will continue to post details on this blog.    Kris

Meeting Labour Shadow Health Secretary Andy Burnham MP at the Britain Against Cancer conference.

LINK: All Party Parliamentary Group on Cancer – website

 

Update on reviews…

I’ve used the words of a very good friend to explain where we are right now. Essentially waiting for the public release of the ‘first line use’ review, expected on the 23rd March. If as expected dasatinib is rejected then we register our incredulity with appropriate bodies and move the fight towards the Cancer Drug Fund and ensure that it is sufficiently equipped and able to respond to demand nationally for CML patients. Thanks. Kris.
Briefly, as a reminder, NICE was carrying out separate reviews (Health Technology Appraisals – HTA’s) of the use of these three drugs in the treatment of CML.

The first review undertaken was for – Second line use

Essentially they were looking at the cost effectiveness of the  use of dasatinib, nilotinib and high dose imatinib as a second line treatment of CML, after the first line choice of drug had failed (resistance) or where the side effects got so bad that people were unable to keep taking the first line drug (intolerance.)

The second review – First Line use

In a separate review they were also looking at the cost effectiveness of the first line use of dasatinib, nilotinib and imatinib at initial diagnosis.

The Results of the reviews

The ‘Second line use’ review was finished a while ago, and the recommendation we all now know, was that after Novartis offered the Department of Health (DoH) a Patient Access Scheme (PAS), NICE concluded that provided the PAS remained in place, imatinib and nilotinib were cost-effective and could be prescribed and reimbursed in the NHS, dasatinib was not cost-effective, no PAS was offered by the manufacturer BMS (Bristol Myers Squibb) and therefore was not recommended and could not be used in the NHS (THIS IS NOT ACCEPTABLE).  Nor was high dose imatinib found to be cost-effective, so this too was not recommended.

This recommendation was appealed, but the appeal failed.

This recommendation does not affect the rights of patients already on treatment.

The ‘first line use’ review is nearing its conclusion now, and the interim consultation document would seem to imply that there will be a similar result; i.e. that imatinib and nilotinib will be deemed cost-effective and can be prescribed and reimbursed in the NHS, dasatinib will be found to be not cost-effective, no PAS has been offered by the manufacturer BMS (Bristol Myers Squibb) and therefore is not likely to be recommended and will not be used in the NHS in first line treatment of CML either.

The documentation will be released to consultees and commentators during the week commencing Monday 12 March 2012, with the public release on or around the 23rd March.