Posted on 21st October 2014 by PB Consulting in Lobbying, News
The Secretary of State for Health, Jeremy Hunt MP, has pledged his support for a new law permitting terminal patients treatment with untested medicines. The Medical Innovation Bill, also known as the Saatchi Bill, is due to be debated in Parliament next week and could well see a significant improvement in patient care and advancement in treatments for rarer cancers, such as brain tumours.
The Saatchi Bill, the brainchild of Lord Maurice Saatchi, will provide legal protection for clinicians offering new or different options where existing treatments have failed. By removing the fear of being sued from doctors, it is thought that many patients could bypass lengthy or non-existent clinical trials and allow for a more flexible and effective series of treatments for previously fatal diseases. Lord Saatchi launched his campaign earlier this year and has won over many initial critics, including Mr Hunt and the Department of Health.
We believe that this new law is a positive step for all patients with brain tumours as it allows for greater patient choice, as well as for an increase in trials and research into this terrible disease. We are calling on Parliament to approve the Bill.
Posted on 19th September 2014 by William O'Brien in Lobbying
The number of patients traveling abroad to receive proton beam therapy in the last 5 years has been published by the Government. In response to a question by Tessa Munt, Member of Parliament for Wells, Jane Ellison MP, Parliamentary Under Secretary of State for Public Health, published the figures below that show the number of patients funded for the treatment increasing from 20 to 124 in the last five years.
||France, USA and Switzerland
||USA (38 patients) and Switzerland (12)
||USA (majority of patients) and Switzerland
||USA (majority of patients) and Switzerland
|1 Figure includes treatments given and treatments due to be given following approval.
Proton treatment works by targeting radiation in a range of beams from different directions at a tumour, leaving healthy tissue surrounding the tumour unharmed. There are several countries that offer this therapy but the majority of the patients from the UK have travelled to the USA. While it is currently unavailable on the NHS, from 2018 it will be available to patients across the country at University College London Hospital and The Christie in Manchester.
We would like to thank Tessa Munt MP for her question and raising the issue of access to proton therapy treatments up the political agenda. As the recent Ashya King story has reminded us, all families want the best treatment for their loved ones and are willing to travel vast distances to secure it. We believe more funding should be guaranteed so that new treatments such as proton beam therapy are both created and available in the UK.
You can sign our epetition calling for government to act on brain tumours at http://epetitions.direct.gov.uk/petitions/55378
Posted on 29th August 2014 by William O'Brien in Lobbying, News
Yesterday the Health Secretary Jeremy Hunt announced an extremely welcome increase in the budget for the Cancer Drugs Fund. The Government has pledged an extra £160 million to the programme, increasing the annual spend from £200 million to £280 million until March 2016. This is brilliant news for patients and campaigners for all cancers as this money will help to fund the treatment for patients who are in most need of radical treatments.
The Cancer Drugs Fund was created by the Coalition in 2010 to improve cancer services. It enables patients to have access to drugs not yet approved by the National Institute for Health and Care Excellence, or not regularly provided by the NHS. So far the fund has helped 55,000 patients in England to receive cutting-edge treatment by making new and innovative treatments cost effective. The scheme has been a success and we hope that it continues to provide cutting-edge treatment for those cancers where mortality rates have increased over the past 10 years.
Rarer cancers such as brain tumours require innovation. The Government should ensure the necessary funding for research and treatment. We urge the Government to ensure that the Cancer Drugs Fund is the beginning of series of initiatives (including a focus on cancer deaths in under 75s and increased research spending for brain tumours) aimed at reducing mortality rates of cancers.
Please join our cause and let the Government know that more needs to be done to fight brain tumours by signing our E-Petition.
The list of drugs currently available through the fund can be viewed here.
Posted on 18th August 2014 by Crispin in Lobbying, News, Research
Some encouraging news has appeared in many newspapers and media outlets today with the new figures from Cancer Research UK showing that deaths from the most common cancers have dropped by a third over the past 20 years. The cancers involved are breast, bowel, lung and prostate. This is fantastic news and shows the focus on these cancers has had the desired result as research money and awareness initiatives have led to new drugs and other innovative forms of treatment.
It also demonstrates why we need to continue the fight to raise awareness of brain tumours and the need for research money for this deadly form cancer to match the amounts for the more high profile forms of the disease. The results speak for themselves.
While breast, bowel, lung and prostate cancers account for almost half of all cancer deaths, brain tumours kill the most young people. Brain tumours kill more children and adults under 40 than any other cancer. While every cancer death is a tragedy – to lose a young son or a daughter (or any other relative) is an unique devastating experience as many Brain Tumour Research supporters will tell you. That is why it is simply wrong that just 1% of all national spend on cancer research goes on brain tumours and is why we will never give up our fight!
So yes – lots done and a big well done from Brain Tumour Research on breast, bowel, lung and prostate cancer – but so much more to do on the young person’s cancer, brain tumours.
Please join the fight and sign our petition - http://epetitions.direct.gov.uk/petitions/55378
Posted on 19th June 2014 by William O'Brien in Lobbying, News
We welcome David Cameron’s announcement today a £100 million guarantee of funding for research into treatment for dementia. Following the 2013’s G8 commitment to develop a cure for dementia by 2025, Mr Cameron attended a London summit and reaffirm his commitment to this goal and call for a united global effort. Through cheaper, streamlined clinical trials, earlier access for patients to drugs and improved incentives for investment, it is believed that a cure for dementia will be found.
The Government’s commitment to tackle dementia is essential. We believe that this support highlights our central message: that without the necessary money for research, any disease, be it brain cancer or dementia, cannot be cured. Research is the only way to find the treatments and drugs that will cure the diseases that account for thousands of lives a year in the UK and yet there are diseases, most notably brain tumours, which do not receive the funding they need to move therapies forward.
The number of deaths caused by brain cancer in the last decade has increased, peaking at 3,443 people in 2012. Despite this, and despite the fact it is the largest cancer killer of children and adults under 40, research into a cure receives only £4.9 million a year from NCRI members. Brain tumours need a similar Government commitment to that given to dementia research, a commitment to spend the level of money needed to save the lives of thousands of men, women and children a year.
We need your help to let the Government know that change to research funding is needed. You can do this by signing and sharing our E-Petition with your family, friends and colleagues, as well as writing to your local MP, making them aware of the current state of research funding.
Link to E-Petition: http://epetitions.direct.gov.uk/petitions/55378
Link to Brain Tumour Research Report: http://www.braintumourresearch.org/uploads/document/BrainTumourResearchNationalFundingReportJuly_2013draft9_897.pdf