New cancer drug treatments

New cancer drugs can only be widely used if they have been given a licence in the UK.

To get a licence, a drug treatment must have been thoroughly tested to show it is effective and safe to use. The licence will confirm what the drug can be given for and the dose that should be used. However, having a licence does not mean the drug will automatically be available on the NHS.

You can read more about licensing on Cancer Research UK website.

Before new cancer drugs are made available on the NHS they need to be assessed and approved by the relevant organisation for England, Scotland, Wales and Northern Ireland.

England

In England, the National Institute for Health and Care Excellence (NICE) produces guidance about which drugs should be available on the NHS.

NICE looks at how well a drug works and whether it’s cost-effective.

Based on its assessment, NICE can:

1. Recommend the drug for routine use on the NHS
2. Not recommend the drug for use on the NHS
3. Recommend the drug be made available through the Cancer Drugs Fund (see below for more information)

If NICE recommends a drug for use on the NHS, it should be made available within 90 days. Cancer drugs are often available sooner than this.

Wales

In Wales, all drugs recommended by NICE should be made available on the NHS within 60 days.

The All Wales Medicines Strategy Group (AWMSG) can make recommendations about drugs that have not been assessed by NICE.

Scotland

In Scotland, the Scottish Medicines Consortium (SMC) makes decisions on the use of drugs on the NHS. Like NICE, it looks at how well a drug works and whether it’s cost effective.

SMC can make one of the following decisions about a drug:

1. Accept the new drug
2. Accept with a restriction – for example, the drug can only be recommended in a particular group of patients
3. Accept on a temporary basis – the drug will have ongoing reviews
4. Not recommend the drug

When SMC accepts a new drug, NHS boards have 90 days to consider SMC advice and decide whether the drug should be made available. If an NHS board chooses not to provide it, they need to explain why.

Northern Ireland

Health and Social Care Trusts in Northern Ireland usually follow what NICE decides about making new drugs available. Once they’ve chosen to follow a NICE decision, Trusts have to make medicines available within 9 months. 

If NICE has not made a decision, Northern Ireland can choose to follow the SMC.

Your treatment team will discuss your treatment options with you. If they think a new treatment will benefit you but it’s not available on the NHS, there may be other ways to access it.

The Cancer Drugs Fund (CDF)

The Cancer Drugs Fund (CDF) gives people in England early access to new cancer drugs not yet routinely available on the NHS.

When a drug is available through the CDF, the NHS and the drug company work together to collect more information to see whether it can be made routinely available on the NHS.

After around 2 years on the CDF, NICE will review the drug and will make a final decision on its use.

If NICE decides the drug should not be available on the NHS, people already receiving the drug will be able to continue treatment.

While the CDF covers England, the drugs on the fund also benefit people in Wales and Northern Ireland.

Private treatment

If you have private health insurance, it may cover the cost of some drugs.

You may want to find out if you can pay for a treatment privately (self-funding). Private cancer treatment is usually very expensive. Self-funded treatment will include the costs of the treatment as well as any nursing time or other tests, such as blood tests. Speak to your treatment team if you want to find out more about self-funding.

Find out more about private treatment on the Cancer Research UK website.

Individual funding

You may be able to access treatment through individual funding. Individual funding is different in England, Wales, Scotland and Northern Ireland.

Find out more about individual funding on the Cancer Research UK website.

In some cases, drug companies provide treatments free of charge. This may be:

1. While the drug is waiting for a licence
2. After a drug has been given a licence, but a decision has not been made on its use on the NHS

This is called early access. You may also hear it referred to as an expanded access, managed access or pre-reimbursement scheme.

Speak to your treatment team if you think you may be eligible for a new drug treatment. They can contact the medical team at the drug company.

If a decision is made not to make the new drug available on the NHS, people already receiving the drug will be able to continue treatment.

Drug companies may sometimes provide a drug that is not yet licensed for a particular group of people. It may be provided if other treatments are not available or have already been tried. This is called compassionate access.

You can speak to your treatment about compassionate access. They can contact the medical team at the drug company.

Similar to early access, a decision can be made not to make the treatment available on the NHS for these groups of people. People already receiving the drug will be able to continue treatment.

You may hear about a new drug treatment and want to know why you’re not being given it.

It may be for one of the following reasons:

1. The drug can only be used for breast cancers with certain features
2. The drug can only be used in certain situations based on the available evidence. For example, it may only be given at a specific stage of treatment, after another type of treatment, or if you have not previously received a certain treatment.
3. There may be other drugs that can be used first
4. It’s not been approved for use on the NHS, often because NICE or the SMC does not consider it cost-effective

Everyone’s treatment plan is based on individual circumstances. Speak to your treatment team if you’re unsure about what drug treatments you can have or whether there are any clinical trials you can take part in.

We know it can be distressing to not have access to a new drug treatment. You can call our helpline to speak to one of our nurses about your concerns – see the bottom of this page for ways to get in touch. And you can speak to others who may be in a similar situation to you on our forum.