Drugs for cancer and copayments

Abstract

Principles underpinning copayments must preserve equity, be transparent, and enhance knowledge on treatment outcomes

The topic of how to pay for new and experimental drugs will not go away. The government of the United Kingdom has announced a review of whether patients should be able to remain NHS patients if they pay privately for such drugs. The current controversy exposes broader challenges, including how widely patients should make additional copayments for NHS services, and how an “episode of care” should be consistently defined.

The NHS has changed radically since its foundation in 1948. Major breakthroughs in therapeutic drugs and applied technologies have offered new hope of prolonging life and improving quality of life in people with serious disease. Although drugs for cancer have hit the headlines, others that may have wider indications and applications are just around the corner. So should the NHS simply allow copayments to deal with the problem?

In reality, other health systems signal problems with this.Copayments mean that—contrary to the founding principles of the NHS—access to treatment depends on ability to pay. In a recent study by the Commonwealth Fund, 40% of patients from the United States, which has a copayment system, reported that they had not sought medical attention when they needed it because of the costs involved. The UK proportion of 9% was the lowest recorded in the study.¹

The National Institute for Health and Clinical Excellence (NICE) was created to determine the use of drugs and treatments within the NHS. It draws much evidence from clinical trials, which usually study patients aged 18-65 without significant comorbidity and, in the case of cancer, with a clear histological diagnosis. Yet the clinician must often advise individual patients on whether anticipated benefits outweigh risks and burdens in their particular, perhaps atypical, presentation. Moreover, how can a clinician explain that, although there is new and emerging research evidence of benefit from a licensed drug, the drug is not available because it has yet to be appraised and funded, and if they access it they are excluded from NHS care?

Almost half of patients with cancer use a wide range of non-prescription complementary treatments,² yet no one suggests such self medication should be forbidden if they also access NHS care. Indeed, clinicians need to know what is being taken because drug interactions cause morbidity and mortality.

The number of patients wanting to pay for additional drugs is small in the scale of the NHS. Moreover, the drugs are mostly ones that have yet to be reviewed by NICE or for which insufficient evidence is available to show exactly which patients might benefit, at what stages of disease the drugs are most effective, and in what clinical and other circumstances they should be used.

One way forward would be to accelerate the NICE process as much as possible and—recognising that NICE cannot always produce a quick or definitive response—find a way to ring fence some drugs as specific cases. Thus, a definitive list of drugs on which copayments were permitted could be compiled, with copayments sanctioned on the basis of four criteria. However, it is a fundamental and essential principle that all drugs and devices fully proved through appraisal should be available freely and equitably to all NHS patients regardless of their ability to pay.

The first criterion would be that the drug or device is listed as one for which copayment is allowed. Secondly, the patient should want the treatment and have discussed the risks and likelihood of failure as well as success with their clinician, so that hopes are not raised unrealistically. Thirdly, the clinician should have a reasonable belief—supported by peers—that the anticipated benefits for their patient of the unfunded drug outweigh the benefits of other treatment. Fourthly, patients who are unable to participate in a clinical trial should be willing for their treatment and its outcomes to be recorded on a register and potentially available to research.

Such a register would enable copayments to be monitored and audited to ensure that the system is operating properly, and it would allow data on the outcomes of treatment to be used in subsequent reviews by NICE. The register would also allow monitoring of adverse incidents, support additional investigations, and provide mortality data.

Professor Michael Richards, the national cancer director, has been asked by the secretary of state to review whether patients should be allowed to pay for additional drugs and report in October 2008. It will not be an easy task. The review will have to tackle, for example, whether payments should cover not just the cost of the drug but also the costs of administering it and of possible complications, because the NHS often picks up the cost of complications arising from private treatment. He will need to balance choice against the founding principle of the NHS—that treatment is determined by need not ability to pay. But while preserving the general principles of equity and fairness in the NHS, whatever emerges must deal with the current problem, which is grossly unfair to desperately sick people.

Cite this as: BMJ 2008;337:a527