A terrible beauty: A short history of the National Institute for Health and Care Excellence by Nicholas Timmins, Michael Rawlins and John Appleby. Free download.
This story of NICE is a great read. The main author Nick Timmins, a former journalist for the Financial Times, now with the Kings Fund, tells a thriller like story in the early chapters about the origins of NICE. The presence of Mike Rawlins, who was there, underpins key anecdotes. John Appleby provides health economics.
Much was new for me, particularly the roles played by Simon Stevens and Frank Dobson, both early advocates of what became NICE. An independent body dealing with cost effectiveness was the lesson drawn by ministers and the Department of Health from several difficult policy episodes. These included beta interferon, sildenafil (viagra), zanamavir (ralenza) trastuzumab (herceptin) and the cancer drugs.
Beta interferon rightly plays a key role. It saw minister Gerald Malone ambushed on news programmes. This led to a cautious NHS Executive Letter in 1995 which grudgingly permitted its use in the NHS. In the lead up to the 1997 General Election the Labour partly began to advocate what in Government became NICE. NICE went on to reject beta interferon in 2001. This in turn led to the Multiple Sclerosis Risk Sharing Scheme, which the authors see as the forerunner of the now widely used Patient Access Schemes.
Viagra (sildenafil) which the then new Labour Minister of Health, Frank Dobson, mainly refused to fund, further emphasised the need for some independent body to make such difficult decisions. Frank Dobson’s report of waiting for the chair of Pfizer to smile at a joke about “tax funded erections” alone makes this worth reading.
Before its rejection of beta interferon in 2001, NICE had rejected zanamivir (ralenza) for influenza, its first decision. Quotes from Rawlins has him celebrating the luckiness of that episode. The drug had a modest effect but cost a lot. GPs feared a flu avalanche. Newspapers were broadly supportive. The threat by Glaxo Wellcome to leave the UK turned out to be an empty threat. Ministers did not interfere.
The role of other key figures, such as Tony Culyer, Alan Maynard, Clive Smee, Alan Langlands, Graham Winyard, Alan Milburn and many others is told with rich context. The account of Mike Rawlins and Tony Culyer plotting over breakfast and cigars on the northern trail to London recalls other versions of how York health economists like to describe their influence on policy.
Some ministers did interfere. Patricia Hewitt on trasuzumab for breast cancer is presented as either doing the decent thing or cracking under pressure. As the evidence and the pressure increased to make the drug available, she told the NHS in 2005 to start testing to identify who might benefit. Not only had NICE yet to consider it, the drug was not then licensed. NICE went on to recommend it in May 2006. The episode was presented by Hewitt as a one off, not fatal to the doctrine of non interference by ministers. Perhaps key was Hewitt’s subsequent support for NICE’s partial restriction donepezil for Alzheimer’s Disease.
A chapter headed the “The road to the cancer drugs fund” picks up the story of the pressure to allow patients to “top up” (pay privately without losing entitlement to free NHS services) for cancer drugs denied by NICE. This led to the new end-of-life threshold in 2009. And also to David Cameron announcing the Cancer Drugs Fund a month before polling day in 2010. The attempt by Andrew Lansley, the new health minister, to link it to value based pricing is described as “the start of a six year journey down a long blind alley” (p.105). More interestingly, Mike Richards, the-then-cancer czar is presented as opposing the restriction of the fund to cancer (p.108). The book portrays the cancer drugs fund as an unfinished story.
While the book is a highly enjoyable read, it has faults. Written by three authors in three parts, styles and length differ. The first part, 135 pages by Timmins occupies most of the book and is the gripping read. The second part, 20 pages by Rawlins on law, social values, and stakeholders comprises summary accounts. The third part: 20 pages by Appleby on the cost per QALY threshold takes another style in which the drama of key individuals is largely lacking.
Interestingly, the book appears to have been partly funded by royalty: Thailand’s “Prince Mahidol Award Conference” is cited with several other organisations as supporting the production of the book. It is available free for download on the website of the Thailand Health Intervention and Technology Assessment Program (www.HITAP.net). The cover states that it is not an official history of NICE, not endorsed by NICE and does not necessarily represent the views of NICE. This almost certainly contributed to it being the best available account.
James Raftery is a health economist with several decades’ experience of the NHS. He is professor of health technology assessment at Southampton University. A keen “NICE watcher,” he has provided economic input to technical assessment reports for NICE, but has never been a member of any of its committees. The opinions expressed here are his personal views.