The latest media celebration of how terrible the NHS is gathers pace. The press has been reporting that people are going blind because they are being refused a drug (as opposed to going blind because they have a degenerative disease). Yet the fourth estate seems to be missing a far more interesting story.
The drug in question, Lucentis, was developed by the firm Genetech. It came up with a family of drugs that use gene technology to intervene at a molecular level, initially producing the drug Avastin as a treatment for bowel cancer. At some point clinicians began injecting this drug into the eyeballs of people with the eye disease "wet" advanced macular degeneration (AMD), with some success.
However, researchers thought it might be more appropriate to develop smaller molecules for the eyeball than used with bowels. So Lucentis, which costs a lot more, was developed.
The evidence for its effectiveness is limited but looks promising. However there is little evidence of longevity; available studies finish two to three years after administration of the drug. This seems to be just at the point that re-deterioration may be setting in, but we don't have the results to tell.
Meanwhile, ophthalmologists who have been administering Avastin claim to see individual clinical benefits - although of course such anecdotal evidence does not meet the usual standards of research and there is little information on performance over time. At the moment they have to prescribe Avastin privately off-licence because the manufacturer has not applied for a licence to use Avastin for AMD.
There are three companies involved in this story. Genetech developed both drugs. Roche is its manufacturing and marketing partner in the US, giving it an interest in promoting the more expensive Lucentis. In the UK, however, Roche is its partner for the cheaper Avastin while its partner for Lucentis is Novartis. Novartis has sought a licence for Lucentis which locally seems to cost 2.5 times the price of Avastin. Roche has not sought a licence for the cheaper Avastin to treat AMD in the UK.
Perhaps this is a tale of a poor business model. Genetech saw something promising and instead of going with it and developing the evidence base spent more cash on developing another very similar product - then tried to sell it at much higher cost to a monopoly customer (the NHS).
In any other environment one would expect the firm to take the hit on Lucentis and get on with bringing the potentially more cost-effective Avastin to market to treat AMD. A conspiracy theorist could interpret the favouring of Lucentis as part of a drug marketing strategy.
Here in Birmingham current estimates suggest a course of treatment with Lucentis will cost£20,000. Given the current evidence is of perhaps two years' benefit, this is a high cost per quality adjusted life year. However eyesight is key to quality of life and there are some arguments (as yet unproven) that the cost of going blind would be equally high and recurring.
There is no doubt that if commissioners had an affordable option to keep 190 people a year (in my organisation's case) with sight, we would take it. But Lucentis is not affordable. The annual cost of prescribing it is difficult to estimate as the National Institute for Health and Clinical Excellence has not yet distinguished from the limited evidence base who the target audience is, but a conservative estimate of£4m per year for our primary care trust is emerging.
We are currently planning to invest£12m in a range of large service developments which have been through a rigorous process of needs assessment, targeting, piloting and testing before comprehensive roll-out.
So if we spend£4m on Lucentis it will be at the expense of redesign and expansion of end of life care; significant investment in rehabilitation in partnership with the local authority; and making assertive telephone management available to 11,000 more people struggling with long-term conditions.
As well as being just as morally worthy as treatment for AMD, each of the above has the added benefit to local people of improving services at reduced cost, thereby enabling a growth in services alongside improvement. The same cannot be said for Lucentis.
There seems to be an uncomfortable collusion emerging between politicians and pharmaceutical companies to pressurise NICE as it conducts its quality adjusted life year assessment process. This seriously distorts a process which is supposed to present absolute costs so treatments can be neutrally compared.
Having already gone down this route on the myeloma treatment Velcade, the pharma world is proposing a range of deals on a whole series of very expensive, "difficult to evaluate" treatments still lurking in the labs.
It seems many organisations are on the back foot because there is too much cash in the system for the crucial year-end period.
In a system which still focuses on the balance on 31 March, rather than return on investment over several years, PCTs, strategic health authorities and the Department of Health are desperately trying to spend money. Lucentis offers an excellent opportunity to spend lots of money quickly and appear to the public to be doing the right thing.
However, spending is not the same as investment. Spending on a drug with a limited evidence base, produced by a firm that could give us access to a cheaper alternative, is not doing the right thing.
Perhaps, given its market power, the DH could start a conversation with the companies in question.