I suppose it is inevitable that the moral and political issue of copayment for cancer drugs will result in an arbitrary, bureaucratic directive, such as that offered by the unelected Lords Finlay and Crisp,1 whose rules I summarise:
(1) The drug or device is listed as one for which copayment is allowed.
(2) The patient should want the treatment (and have discussed the risks, etc).
(3) The clinician should have a reasonable belief that benefits outweigh the benefits of other treatment.
(4) 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.
The rules are a sham. Who decides the first, which trumps all others? The second seems absurd, unless doctors foist unwanted treatments on patients. The third is precisely the rational/rationing problem, and begs the whole question. Until the National Institute for Health and Clinical Excellence (NICE) has assessed the evidence and ruled the drug in, only expert specialists (and their peers) can reasonably anticipate NICE judgments—precisely the situation which NICE was invented to contain.
The last rule is high handed and authoritarian. If I did not consent, or was otherwise “unable to participate” in a clinical trial, why should I be required to participate in records, registers, and research? What if I were to refuse? Why is it that NHS managers, doctors, and politicians want to control what I do with my money in a free society? They should limit themselves to that part which is taken from me in tax.
The question is not new, and a working solution has been usual NHS practice for 20 years. In 1986 the NHS decided to formally blacklist several drugs deemed to be of insufficiently evidenced effectiveness. The alternative and presumably effective drugs were later to become known as the whitelist. Patients who insisted that Mogadon was superior to nitrazepam were allowed to pay for it on private prescription from the same general practitioner who was forbidden to prescribe it on an NHS pad. The working rules seem to be:
(1) The drug or device is blacklisted (not NHS funded ).
(2) The patient should want the treatment (and have discussed the risks, etc).
(3) The clinician should have a reasonable belief that the prescription is safe, effective, and legal.
(4) Patients who are unhappy are referred to their elected MP.
Competing interests: None declared.
Cite this as: BMJ 2009;337:a807
References
- 1.Finlay I, Crisp N. Drugs for cancer and copayments. BMJ 2008;337:a527 (30 June.) [DOI] [PMC free article] [PubMed] [Google Scholar]