After several months of uncertainty, the end of July saw the new-look Cancer Drugs Fund (CDF) finally open for applications. The new fund is now responsible for providing cancer patients in England with access to new cancer drugs, as soon as they are licensed. (For patients living in Wales, Scotland and Northern Ireland, the devolved governments decide independently how they spend their money on health. None of them have their own cancer drugs fund as such, but they are looking at ways to improve access to cancer drugs).

The biggest change to the new system involves the National Institute for Health and Care Excellence (NICE) taking back full control of the drug appraisal process. The CDF will also now operate as a ‘managed access fund’ with a capped annual budget of £340 million. Any drugs that were available within the old CDF will continue to be available whilst they await review by NICE within the next 12 months.

It is not yet known what effect the new CDF will have on people’s access to the latest cancer drugs. There are concerns that NICE’s appraisal process and a capped budget will result in fewer drugs entering the fund where they could help cancer patients. Negotiations between NHS England and pharmaceutical companies will also now take place before a drug enters the fund – a renewed focus on cost effectiveness.

What happened to the old Cancer Drugs Fund?

Following the 2010 General Election and the formation of the Coalition Government, former Prime Minister David Cameron oversaw the introduction of the original CDF with an initial budget of £50 million. A 12-member panel representing oncologists, pharmacists, specialists in public health and patient representatives oversaw the drug review process. The annual budget was regularly overspent and steadily increased to the final 2015/16 budget of £340 million.

In just over five years, the old CDF spent over £1.2 billion, representing the true need of cancer drugs by patients and their families. The fund was established only as a temporary measure whilst alternative drug funding criteria were developed. Despite attempts to do so, a new funding framework that is truly responsive to patient need and reactive to the latest drug developments has yet to be implemented, requiring the CDF to continue as a new managed access fund.

What does this mean for brain tumour patients?

Within the old CDF, the only treatment effective against brain tumours is Avastin (Bevacizumab). In 2014, the panel recommended Avastin be made available for children with low-grade gliomas who have already received Temozolomide, a more common chemotherapy drug sometimes used to treat glioblastoma multiforme or anaplastic astrocytoma. The purpose of Avastin is to try and delay the need for radiotherapy until a child is older and less likely to develop side effects to radiotherapy.

Avastin works by shrinking tumours and stopping the formation of new blood vessels that feed tumours and supply them with oxygen, a process known as angiogenesis. When first introduced into the old CDF, NHS England anticipated that up to 75 children per year may be eligible. Out of the thousands of people who are faced with a brain tumour diagnosis every year in the UK, Avastin is only effective for a small fraction of these patients.

What does the new Cancer Drugs Fund provide against brain tumours?

The new CDF system has been stated to offer off-label drugs that show clinical and cost effectiveness, the opportunity to obtain CDF funding. Off-label drugs refer to treatments that are used for a disease or condition which they were not originally licensed for.

Drug repurposing is a new area of research for many cancers including brain tumours. Some current cancer drugs may possibly be effective against certain types of brain tumours in the future but issues such as clinical testing regulations and drug delivery (through the blood-brain barrier) require more research. Read more about drug repurposing elsewhere on our blog.

What can we do to help?

Our MPs and other elected-politicians need to know about the near total lack of brain tumour drugs available to patients and their families. Brain tumour research has long been underfunded compared to other cancers and more needs to be done for innovative treatments to be discovered and developed.

Cancers such as breast and leukaemia have a variety of drug options but for brain tumours, there are only a couple of drugs for clinicians to choose from overall. Temozolomide continues to be a first-choice therapy for some brain tumour types and available through the NHS. Avastin remains available through the Cancer Drugs Fund as a third-choice therapy (also known as third-line) available after previous treatments but is only effective for up to 75 children per year.

The charity Brain Tumour Research will monitor the roll-out of the new CDF in coalition with other leading cancer charities. We are also participating in a series of workshops on drug repurposing being coordinated by the Department of Health.

Take action, write to your MP

We have created a template email for you to use (In a word document – download here) to inform your MP of the new Cancer Drugs Fund and the lack of drugs to treat brain tumours. There’s a section in the email that allows you to add in any details of your own story should you wish to do so; please edit as you like. Don’t forget to include your address as proof that you are a constituent of theirs. If you’re unsure who to contact, you can find out your MPs name and email address here.

We’d love to know how you get on and please do send us any responses from your MP. If you have any questions arising from this blog or about our campaigning activities at all, you can get in touch using the email address below.

Together we will find a cure.

Greg Judge, Public Affairs Officer, Brain Tumour Research campaigning@braintumourresearch.org