Britain Against Cancer Conference

I’m delighted to have been invited to the 14th annual Britain Against Cancer Conference, hosted by the All Party Parliamentary Group on Cancer  on Tuesday 11 December at Central Hall, Westminster:

http://www.cvent.com/d/bcqsjf

“2012 has been a year of transition for the NHS, with the new commissioning structures taking shape.  Now the Health & Social Care Act has passed, this year’s conference will focus on what action needs to be taken to ensure that patients’ outcomes and experiences continually improve in the reformed NHS.  As ever, you will have the opportunity to hear from and pose questions to key decision makers behind the reforms and top health opinion formers, including: Andy Burnham, MP, Shadow Secretary of State for Health, Professor Sir Mike Richards, Domain One Director at the NHS Commissioning Board, Julietta Patnick, Director of the NHS Cancer Screening Programme and Alastair McLellan, editor of the Health Service Journal.  Plus with six breakout sessions on a range of pressing issues, from public health to improving access to treatment, you’ll be able to hear from experts on the issues which are important to you.”

The All Party Parliamentary Group on Cancer (APPGC) was founded in 1998 to keep cancer at the top of the parliamentary agenda, and to ensure that policy-making remains patient centred. The Group brings together MPs and Peers from across the political spectrum to debate key issues and campaign together to improve cancer services. The APPGC is supported by a Stakeholders’ Group consisting of representatives from: Breakthrough Breast Cancer, Cancer Black Care, Cancer Research UK, Macmillan Cancer Support, Marie Curie Cancer Care, Men’s Health Forum, National Cancer Intelligence Network, National Cancer Research Institute, Rarer Cancers Foundation, Prostate Cancer UK and Teenage Cancer Trust.

I’ll be sure to make notes during the day and write up a report.

Kris

4 written Parliamentary Questions tabled: Chronic Myeloid Leukaemia treatment

I’m happy to announce today that we have 4 written Parliamentary Questions (PQs) tabled about Chronic Myeloid Leukaemia treatment.

They can be found here, you need to scroll down to 112, 113, 114 and 115: http://www.publications.parliament.uk/pa/cm201213/cmordbk2/120713o01.htm

My local MP Mark Garnier has been kind enough to submit these and I am very grateful to him for this.

I will update you when these questions have been answered by the Secretary of State for Health. I have posted them below for information.

All my best wishes,

Kris

Mark Garnier (Wyre Forest): To ask the Secretary of State for Health, how many people were diagnosed with chronic myeloid leukaemia in (a) 2007, (b) 2008, (c) 2009, (d) 2010, (e) 2011 and (f) 2012 to date.

Mark Garnier (Wyre Forest): To ask the Secretary of State for Health, what steps his Department plans to take to ensure that chronic myeloid leukaemia patients have a wide range of treatment options (a) when newly diagnosed and (b) at the second line of treatment.

Mark Garnier (Wyre Forest): To ask the Secretary of State for Health, how many patients have received the drug Dasatinib on the Cancer Drugs Fund since the fund was created in 2010.

Mark Garnier (Wyre Forest): To ask the Secretary of State for Health, what long-term plans his Department has to ensure that those diagnosed with chronic myeloid leukaemia have access to a wide range of treatment options after the end of the Cancer Drugs Fund in 2014.

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

Setting out the stall

I have created this place to bring CML (Chronic Myeloid Leukaemia) patients, families, friends and carers together to put pressure on various bodies to ensure ALL drugs used for CML are available to ALL patients; so that our consultants are able to prescribe without having their hands tied by bureaucracy.

The aim of the group will be to undo the damage caused by NICE (National Institute for Health and Clinical Excellence) by doing the following:

• Lobby Parliament and your local MP for their support.
• Put pressure on NICE to reverse or reinvestigate their decisions and processes.
• Put pressure on Bristol-Myers Squibb (BMS), makers of dasatinib, to offer a Patient Access Scheme (PAS) thereby reducing the cost of their drugs.

The group will encourage influential parties to write letters and show their support publicly.

The group will write letters and participate in organised, peaceful demonstrations and lobbying events.

It is my hope that the group will obtain the support of Leukaemia charities, however it will act independently and take a cross-agency approach to all work.

The group will not solicit funds. The group will not make charitable contributions or pay anyone affiliated with it in any way. It is a voluntary organisation.