Two recent articles in The Independent (here and here) describe at length how UK patient advocacy groups have blasted NICE (National Institute for Health and Clinical Excellence) for refusing to cover certain expensive pharmaceuticals.
"Rationing" is a dirty word in U.S. public discourse. Sadly, almost all U.S. political leaders (with the exception of former Oregon Governor John Kitzhaber) speak of rationing as a moral crime, only contemplated by "uncaring bureaucrats" or "greedy insurance companies." In The Independent, journalist Jeremy Laurance describes rationing more accurately as an ethical imperative:
"NICE is a rationing body, established in 1999 to ensure the cash-limited NHS gets best value for money from the profit-driven pharmaceutical industry. It aims to establish not only whether a drug is effective, but whether it is more effective than existing drugs and, if so, whether it is worth the extra price (£1,000 spent on a cancer drug means £1,000 less for nursing care for cancer patients).The Independent articles go further. The ostensibly grassroots patient advocacy groups that have blasted NICE receive substantial support from the pharmaceutical industry. For example, the National Kidney Federation, which called NICE's turning down four kidney cancer drugs "barbaric, damaging and unacceptable," receives half of its budget from industry. Here's what Laurance has to say about conflict of interest for the advocacy groups:
NICE is merely a mechanism for sharing out a limited budget. The real argument should be between the people (who want the drugs), the pharmaceutical companies (who set the prices) and the Government (who fixes the NHS budget)."
"The extent of the drug companies' support for the smaller charities has led to criticisms that supposedly grassroots patient organisations are puppets of the pharmaceutical industry, being used to bludgeon NICE into making the drugs available on the health service. A positive decision by NICE on a drug not only guarantees sales to the NHS but can influence global markets worth billions of pounds.The Independentcited an August interview with Sir Michael Rawlins, chairman of NICE. Rawlins and his agency are accustomed to attack. Their government sanctioned role is to make evidence-based tough decisions. Perhaps the Kidney Federation's term "barbaric" got his goat. His response was polite, but clear: "We are told we are being mean all the time, but what nobody mentions is why the drugs are so expensive...We have a finite amount of money for healthcare, and if you spend money one way you can't spend it in another."
Yet none of the charities named has criticised the high prices charged by the pharmaceutical companies for their products in their recent campaigns.
Timothy Statham [chief executive of the National Kidney Federation] said 'We receive sponsorship from as many of the renal industries as we can possibly sign up. We take the view that by having all the pharma and machine-maker companies on board, we cannot be subjected to overbearing influence by any one of them.'
That leaves unanswered the question of whether accepting funding from any company compromises a group's ability to question the behaviour of the industry as a whole. The way in which NICE is pilloried by patient groups, while the drug companies are ignored, suggests a reluctance to bite the hand that feeds them."
Transparency and candor don't make painful decisions any less painful. But the U.S. should take pages from the British book. If we can't talk honestly about resource limits and rationing we will continue our spiral of out of control costs, massive numbers of uninsured citizens, and mediocre health indices.
Let's hope that the recent meltdown of the financial sector will help us in the U.S. move out of La-La Land into the real world in our approach to health and health care.