Peter Cardy, Harry Cayton, Brian Edwards, Harold Gay
Institute of Economic Affairs, London, 1999, 45pp, £5 (pbk)
(ISBN 0 255 36454 7)
According to this book, the laws and regulations which prevent patients from receiving information about drugs are "absurd and unhelpful" (p.42) in an information age when the rights of the consumer are supposed to be paramount.
In Keeping Patients in the Dark four authors contrast the rigid controls on the advertising of drugs, both prescription-only and over-the counter medicines, with the increasing freedom of information in all other areas, which is the necessary basis for empowered consumer choice.
The controls on advertising, maintained by European and UK law as well as regulatory codes policed by industry watchdogs, have traditionally been justified on the grounds that patients cannot be expected to know enough about their conditions to make informed choices, and the assumption that the doctor will always act on his own clinical judgement, in the best interests of the patient. Neither of these assumptions is tenable now.
Health issues are widely discussed in the media, and patients are better informed than ever before from a variety of sources, including the Internet. Peter Cardy, who ran the Motor Neurone Disease Association at the end of the 1980s (and now runs the Multiple Sclerosis Society), describes how, even when the Internet was in its infancy, it enabled an informed patient group to become thoroughly familiar with the research:
Unpublished performance data from companies might reach us before it reached Wall Street; medical journal articles on clinical trials would be on our desks before reviewers had replied to the editor; questions were suggested to us that might be put to researchers whose work showed therapeutic promise (p.25).We are now in the absurd situation that some websites have sections headed: "Information on this site for US citizens only".
British net-surfers presumably pass on before their minds are influenced by forbidden knowledge (p.39).Harry Cayton, who runs the Alzheimer's Disease Society, shows how the control of information regarding pharmaceuticals specifically excludes patients by defining the doctor, rather than the patient, as the consumer. The Code of Practice which governs the industry is drawn up by industry representatives and medical professionals. "Patients are conspicuous by their absence". Even the Consumers' Association "seems to connive with the definition of doctors as consumers by publishing the Drugs and Therapeutics Bulletin, written for doctors by doctors, with not a patient in sight" (p.37).
The assumption that doctors act only in the best interests of their patients is unconvincing in a cash-strapped NHS in which rationing is increasingly obvious and "financial rather than clinical criteria are applied" (p.35). As Professor Brian Edwards, one of the architects of the Patients' Charter, points out:
The laws preventing ... advertising were created when doctors in publicly financed systems had little, if any, financial accountability and could therefore discharge their Hippocratic oath unencumbered.... They now have budgets to manage, books to balance and managers to answer to (p. 17).Under these circumstances, the well-informed patient who requests a particular new and perhaps expensive drug is "a mixed blessing to the doctor" (p. 13). Even within a cost conscious NHS, a case can be made for increasing drug expenditures if it keeps patients out of hospital and prevents surgery, but new drugs are coming on to the market for conditions previously regarded as untreatable. In these cases, the NHS has no mechanism to determine priorities:
The effect is that new treatments are judged on much stricter criteria of effectiveness than existing ones and that political a media priorities influence decisions more than they should. It is much easier to resist the introduction of a new treatment for dementia in old people, for instance, than a drug for cancer in children (p.36).As David Green explains in his foreword, the paternalism which restricts the free flow of information on drugs has had an ulterior motive:
All post-war governments have... anticipated that well-informed patients would demand the best, inevitably increasing the pressure on limited NHS budgets. Instead of asking whether ‘free' medicine made sense, successive governments have preferred to restrict access to information in the hope that badly-informed patients would more willingly accept their lot. The time has come for a mature debate about widening the availability of information and increasing personal payment for medicines (p.vii).It would be better if the authors followed their argument to its logical conclusion, and insisted on our right to self-medication. In a free society, a prescription becomes nothing more than a letter of advice from a doctor to a pharmacist. If patients know what they want they will go and buy it for themselves regardless of what a doctor thinks. Give us the right not just to know what medicines are, but also to buy them direct - that means the right of any adult to walk into an unlicensed pharmacy, and buy whatever drugs take his or her fancy, and for any purpose. That means not more than 16 aspirin. It means unlimited amounts of heroin, cocaine, vitamin E, and laetrile. That would be an improvement.
Even so, this book is worth reading so far as it goes.
Iti Saflaia