Another Day In Westminster

I spent an exhausting day in Westminster meeting parliamentarians this week. Henry Smith MP, Mark Durkan MP and Nic Dakin MP all gave up their valuable time to sit with me in Portcullis House to discuss Khalid Younis, Chronic Myeloid Leukaemia (CML) and the problem we currently face with the lack of an appraisal system for new drugs.

All three MPs were incredibly kind with their time and very supportive. They all agreed to support a letter from Roger Godsiff MP (Khalid’s member of parliament) to the Prime Minister asking him to intervene in Khalid’s case as well as agreeing to submit written parliamentary questions where appropriate. All three were very concerned with the issues I raised and offered lots of advice and opinion on how we can move forward.

It’s great to have days like this. We’ve made friends with more, influential, people who now know about the struggle CML patients face as well as issues facing the wider cancer community. Although to their credit all three men were very aware of the restrictions faced getting the right drugs to the right people in a timely and cost-effective way. I certainly appreciated the balance in conversation; we all know that the funding pot is finite but to have a productive discussion on how to address this in a fair and progressive way, ensures we, as patients, become part of the solution, rather than part of the problem.

I’ll progress this by suggesting some written questions we can submit and go on record by thanking all three gentlemen very much for caring about CML patients.

Best, Kris

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‘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in research several existing drugs have been found to be effective in treating conditions other than the ones they were originally made and patented for.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.

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

More Parliamentary questions answered.

My thanks again go to Mark Garnier MP for asking these written questions for us in Parliament. It’s vitally important that we keep asking questions, forcing answers (even if we don’t like them) and giving this cause as high a profile as we can manage. These answers are recorded for posterity in Hansard and we can refer back to them any time. Hansard is the name of the printed transcripts of parliamentary debates in the Westminster system of government. It is named after Thomas Curson Hansard, an early printer and publisher of these transcripts.
Kris

22 Apr 2013 : Column 753W
Leukaemia

Mark Garnier: To ask the Secretary of State for Health (1) what steps he has taken to ensure that those diagnosed with chronic myeloid leukaemia have access to a wide range of treatment options, including Dasatinib’ [151773]

(2) what recent discussions he has had to ensure that those diagnosed with chronic myeloid leukaemia have access to a wide range of treatment options, including Dasatinib. [151774]

Norman Lamb: The Mandate to NHS England clearly states the need to improve access to treatment for people when they need it.

The National Institute for Health and Care Excellence (NICE) has issued technology appraisal guidance that recommends the drugs imatinib and nilotinib for use in the treatment of chronic myeloid leukaemia. NICE guidance does not recommend dasatinib as a clinically and cost-effective use of national health service resources.

Commissioners are under a statutory obligation to provide funding for such treatments and drugs recommended by NICE within three months of the guidance being published.

Patients have a right under the NHS Constitution to clinically appropriate drugs and treatments recommended by NICE technology appraisal guidance.

Since October 2010, the £650 million Cancer Drugs Fund has helped over 28,000 patients in England to access the drugs their clinicians believe will help them. NHS England has now taken on oversight of the fund, bringing even greater consistency to decision making.

The Secretary of State for Health, the right hon. Member for South West Surrey (Mr Hunt), has had no recent discussions about this matter.

http://www.publications.parliament.uk/pa/cm201213/cmhansrd/cm130422/text/130422w0007.htm#13042383001683

 

22 Apr 2013 : Column 735W
Cancer: Drugs

Mark Garnier: To ask the Secretary of State for Health with reference to the Cancer Drugs Fund, as announced by the NHS Commissioning Board, whether access to some treatments previously available through the fund will be restricted. [151790]

Norman Lamb: Since NHS England took on oversight of the Cancer Drugs Fund from 1 April 2013, it has published a national list of cancer drugs covered by cohort policies on its website at:

www.england.nhs.uk/wp-content/uploads/2013/03/ncdf-list.pdf

We understand that the great majority of cancer drugs previously funded by strategic health authority panels are on this cohort policy list, supporting timely and consistent access. Clinicians can apply to the national Cancer Drugs Fund for the inclusion of a drug within the approved cohort list.

Regional clinical panels will continue to consider individual patient applications where a patient is considered to be exceptional to a cohort, policy or where use under a cohort policy has not been considered due to the rarity of the condition.

http://www.publications.parliament.uk/pa/cm201213/cmhansrd/cm130422/text/130422w0006.htm#13042383001615

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.