Main Points from Parliamentary Lobby

John Leech MP

(Lab, Manchester Withington)
The debate covered two points Lack of MP awareness about process by which mew medicines are made available and NICE appraisal of azacitidine for MDS.

John Leech MP

 1. Lack of MP awareness about process by which mew medicines are made available

MDS UK Lobby of parliament on 26th October was to coincide with the publication of a survey that found that 2/3 of MPs didn’t know what NICE HTA (Health Technology Appraisal) or a QALY (Quality Adjusted Life Year) was.

During a time of large scale reform in the NHS they need to have a better knowledge of new policies that will help address barriers to access for rarer cancers such as the CDF (Cancer Drugs Fund) and VBP (Value Based Pricing), to ensure that they really do benefit patients.

This is why MDS UK have published their ‘MP Rarer Cancers Toolkit’

2. NICE appraisal of azacitidine for MDS

NICE appraisal of azacitidine a ‘fiasco’

Has so far taken 18 months- could go on until March 2011- 1500 patients missed out on the opportunity of treatment in this time

The Appraisal Committee did not take account of all the evidence presented to them - something highlighted in the appeal against their decision

Joint letters from UK haematologists and European Centres of Excellence to the DH and NICE have made the case for access to azacitidine and criticised NICE’s decision making

NICE refusal to acknowledge medicines’ ‘orphan status’- of 50 orphan drugs, only 3 have been recommended by NICE

Problems with NICE methodology are widely recognised - high costs of developing new medicines and small patient groups mean they are costly but they are also unique, innovative treatments that provide real benefits to patients, these are not ‘me too’ drugs - the only alternative to azacitidine is best supportive care that only manages the symptoms of the disease

End of Life criteria and Patient Access Schemes have not sufficiently addressed problems in access to medicines for rarer cancers

Even if azacitidine is given away free- the QALY would still be >£20k- how can this be?

Value Based Pricing (VBP) is three years away – we have to make sure in the mean time that new medicines like azacitidine that bring vast improvements in patient care are accessible

Cancer Drugs Fund is welcomed but must make sure it helps patients with MDS - a life threatening condition

Hope that NICE approves azacitidine but in the mean time, CDF must support patients with rarer cancers and addresses inequalities in treatment access.


Rehman Chishti MP

(Con, Gillingham and Rainham)

Had been briefed by Macmillan ahead of the debate.

  • Rarer Cancers should be given priority in CDF - and the full amount of money pledged must be used to help patients with greatest need.
  • Important that people with rarer cancers get access to clinical nurse specialists - they also save money in the NHS in the long term by coordinating services better
Rehman Chishti MP

Paul Burstow, Minister of State for Care Services

(also has responsibility for cancer)

There are inequalities in the NHS which the Government’s reforms seeks to address - drug pricing and access to medicines does need reform

CDF Consultation launched today – the Fund will provide treatment for many people with rarer cancers.

Paul Burstow MP

27,000 people are diagnosed with a rarer cancer each year - the Rarer Cancer Forum estimates that the interim CDF will help over 2000 patients this year alone

It is right that MPs should know how medicines are accessed, thanked MDS UK for their Rarer Cancers Toolkit, a valuable resource that he hopes MPs will use to assist constituents with their inquiries

CDF provides bridge to Value Based Pricing - will ensure better treatment access for all patients- especially those with rare cancers

Must ensure VBP also provides better value for money for the tax payer - the DH will consult on proposals later this year

On MDS, he said that patients with low risk MDS receive supportive care- transfusions, chemo and stem cell transplants that manage the disease

NICE is independent, can’t intervene in the appraisal but the critique of the evaluation was upheld by the appeal and those are issues now being looked at

Recognises the frustration felt by Members and patients at the length of time HTA can take- supposed to be 6 months but this longer where there are appeals- it is right that NICE takes the time to consult and undertake a comprehensive evaluation

The Interim CDF can be accessed before NICE gives final guidance and PCTs should not use the lack of guidance as a reason not to make treatments available

The CDF consultation seeks guidance on what to do when there is limited evidence on the clinical effectiveness of a drug

NICE doesn’t recognise ‘orphan status’ of drugs but End of Life criteria take into account small patient populations - this has already helped some orphan treatments get approved such as Yondelis and Revlimid

He will ensure that NICE gets a transcript of the debate – he advised people to contact them directly about the need for further reform

December 2012 - Update

We have revised our Rarer Cancers Toolkit for MP's.

This is a most useful document to share with your MP to explain what MDS is - and what he/she can do to assist and represent you as their constituent at government level:

MP Rarer Cancers Toolkit

Your constituent, their treatment and how you can help. Updated July 2012

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