Cancer patients face postcode lottery – report

Patients with rarer forms of cancer may have been denied potentially life-saving drugs due to a postcode lottery, campaigners said today.

A study by the Rarer Cancers Forum has found that patients faced a postcode lottery when it came to being prescribed drugs that are not licensed for their condition, resulting in many people being refused treatment.

Prescriptions of this nature are deemed as ‘off-label’ treatments. Off-label treatments are an issue for people with rare cancers because there are usually very few – if any – licensed treatments for rare cancers. Instead, patients are prescribed treatments by their doctors which are licensed in more common cancers, but where the cancer which they have has a similar underlying disease process.

The issue is challenging for patients because – since the treatments they need are not licensed for the use for which they are needed – no mandatory national guidance can be issued. This means that patients are instead forced to apply for the treatments they need to their local NHS organisations.

The charity, which says up to 1,000 patients may have been denied potentially life-saving treatment, described the variations as “unacceptable” and called for improvements.

The Off Limits report used freedom-of-information requests to collect data from health trusts and authorities across England about how they dealt with requests for “off-label” drugs.

The survey found many trusts refused such requests due to funding issues and because the National Institute for Health and Clinical Excellence (Nice) cannot order NHS organisations to provide these treatments free of charge.

The charity used the figures obtained from 43 primary care trusts to calculate a national estimate of the number of requests for off-label treatments.

Of the 43 trusts that provided data, 902 requests were made over three years, with 583 of those being approved and 298 rejected. The charity said this suggested a total of 3,188 requests would have been made to England’s 152 primary care trusts during the same time period, with 2,061 approvals and 1,053 patients being denied the treatment.

The study also found that the attitudes of NHS hospitals to near-label prescribing vary widely. Some trusts appear to actively discourage the practice whilst others acknowledge its necessity in high-quality patient care.

The study has resulted in the Rarer Cancers Forum making 25 recommendations, including the introduction of mandatory national guidelines applying to the most frequently used off label treatments and that the treatments used rarely should be funded at the national level.

Commenting on the report, Stella Pendleton, Executive Director of the Rarer Cancers Forum said:

“If a doctor thinks that a patient with a rare cancer should be given a drug, then the NHS should fund it. The NHS is forcing desperate patients into the cruel situation where the chances of their being given the treatment they need depend on where they live.

“No patient should be denied a treatment recommended by a doctor simply because the cancer it treats is too rare for the medicine to be licensed. We need these obstacles removed.

“Drugs companies, politicians and the NHS have a responsibility to patients to fix this system.”

A Department of Health spokeswoman said: “Doctors can use their clinical judgment to prescribe any treatment that will benefit their patient, even if it is outside its licensed indication. Such decisions need to be made in discussion with the patient concerned and funding may need to be agreed with the local PCT.

“Where Nice guidance is not available, it is only right that local PCTs should continue to make these difficult funding decisions according to the needs of their local population.

“The government is committed to increasing patients’ access to innovative new drugs and treatments. In addition, Nice has introduced new flexibilities into its appraisal of certain ‘end of life’ drugs.”