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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MPs to debate the availability of cancer drugs in Parliament

I am pleased to announce that next Tuesday, 20th October, MPs will take part in a Westminster Hall Debate on the availability of cancer drugs. This has been sought by DUP MP Jim Shannon, a big advocate of cancer patients, following his attendance at a dinner to discuss access to medicines for blood and rarer cancers earlier in the year. The debate will give MPs the opportunity to discuss the significant problems many cancer patients in England are currently facing in terms of gaining access to the medicines they need.

You will have read about the fight I have taken up to help 43 year old Birmingham father of four, Khalid Younis, gain access to ponatinib for his resistant Chronic Myeloid Leukaemia (CML), including the meeting we had last week with his local MP, Roger Godsiff. I have alerted Roger to the fact that this debate is happening and asked if he can raise Khalid’s case with the Minister to see if we can progress the situation further with the Government and NHS England. In addition, an Access CML Drugs briefing has gone out to a number of MPs I’ve met before, or who have an interest in CML, stem cell transplantation or the ending of the Cancer Drugs Fund. The briefing highlights our key issues and the inequity of access English patients currently face compared to those in Scotland and Wales. You can download the briefing below.

Whilst the debate won’t focus solely on CML or blood cancer, I hope Khalid’s story will form part of the discussion and be used to demonstrate the problems which exist with the current evaluation methods used for cancer medicines in England, particularly with the Cancer Drugs Fund (CDF) refusing to appraise any new medicines between now and when the Fund ends in March 2016. I hope the issue of how the National Institute for Health and Care Excellence (NICE) and the CDF work (or don’t!) together will also be discussed; any future system of evaluation for cancer medicines needs to be able to work for cancers with small patient populations and previous drugs have, sadly, fallen down the gap between NICE and the CDF.

I would encourage everyone to contact their local MP and ask them to attend and contribute to the debate. You can find out who your local MP is here. The more MPs that attend, the greater the level of awareness there will be amongst parliamentarians of the issues we face.

I will post again following the debate.

Kris Griffin – founder of Access CML Drugs

ACCESS CML DRUGS – WESTMINSTER HALL DEBATE – BRIEFING

Foreseeing a Cure for CML – interview with Dr. Baccarani

Many patients with CML are now living well while taking powerful medicines that keep the disease in check. Researcher Dr. Michele Baccarani, from Italy, thinks that even a few years of taking medicine could enable some patients to cease therapy and remain in overall good health. For other patients, concern still remains in those who develop resistance to today’s approved medicines, cannot tolerate the effects of the medicine or develop the T315i mutation. In this interview from the Controversies in Hematology 2012 in Barcelona, Dr. Baccarani explains his hope for these patients with the use of Ponatinib.

Source: Patient Power

More Than a Decade of CML Experience at OHSU Knight Cancer Institute

For the past decade, hematologist/oncologist Dr. Michael Mauro has treated Chronic Myelogenous Leukemia (CML) patients at the OHSU Knight Cancer Institute and worked alongside Dr. Brian Druker on research that has made this a manageable disease for most patients. With rapid diagnostics, a “palette of clinical trials” and a team approach with community oncologists all at his fingertips, Dr. Mauro says it is a joy to see his patients in clinic, to offer them the best care possible and to see them living well with CML long term.

More Than a Decade of CML Experience at OHSU Knight Cancer Institute VIDEO

Credit: Patient Power