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A cancer may be defined as ‘rarer’ if it affects an unusual site in the body, or because the cancer itself is of an unusual type or requires special treatment.
People with rarer cancers often feel isolated. They may have never heard of their illness or not know anyone else with it. Health professionals may also lack knowledge about their type of cancer. This issue of Mac Voice focuses on treatment and support for people with rarer cancers.
One of the key difficulties people with rarer cancers face is securing access to drugs and treatment. Because there will only be a small number of people who need a particular drug, they are often expensive to develop and produce. As a result, the drugs are often not approved for NHS funding.
The Cancer Drugs Fund| was launched in England last year following a successful campaign by Macmillan. The fund was created to improve access to cancer drugs that aren’t routinely available on the NHS.
However, the fund comes to an end in 2014. Macmillan believes it has provided some important lessons for the future, which are set out in the report, Improving access?| [PDF, 1.71 Mb]. Crucially, we argue that the drugs currently available through the fund must continue to be funded by the NHS once it ends.
The Westminster government is in the process of developing a new ‘value-based’ system for the pricing of drugs. Macmillan is working with the Department of Health on what ‘value’ means for people with cancer, but it's essential that any new system improves access to drugs for people with rarer cancers.
For more about access to treatment in the UK, visit our pages on access to treatment|.
1. Rarer Cancers Foundation. What is a rarer cancer?| (accessed 5 July 2012).
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© Macmillan Cancer Support 2013
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