I have made no secret about the fact that I expect pharmaceutical companies to play fair.
In the six weeks since my appointment as chief executive at Epilepsy Society - the news agenda has been dominated by the collaborative overcharging by two pharma companies - Pfizer and Flynn Pharma - for the epilepsy drug phenytoin sodium.
They hiked the price for the drug taken by 48,000 people in the UK with epilepsy by up to 2,600 per cent; the Competitions and Markets Authority rapped them sharply across the knuckles with a record £84.2million and £5.2million fine, respectively; and the two pharmas have launched an appeal.
But there is a bigger story at play here. The two pharmas were able to ramp up the price of phenytoin sodium by exploiting a loophole in the NHS Act 2006. By debranding their drug as a generic, it was no longer subject to price regulations, and bingo, the price rocketed overnight and the NHS was stung with a bill of almost £50 million.
Thankfully, sense is prevailing. Today (21 December) the House of Lords will give a second reading to the Health Service Medical Supplies (Costs) Bill 2016-17 which could effectively close that loophole and enable the government to secure better value for money for the NHS from its spend on medicines.
The Bill would give the government power to limit the price of unbranded generic medicines where competition in the market fails and companies charge the NHS unreasonably high prices for these products.
The Bill is appropriate, robust and urgent. All credit to this government. But it has taken 10 years since the 2006 Act, for us to wake up and count the cost of the loophole to our cash-strapped healthcare system which spent £15.2 billion on medicines in the financial year 2015-16. That is £50 million that could have been better spent in providing better epilepsy services throughout the NHS.
When it comes to delivering healthcare in a timely and costly manner, we cannot wait a decade to get our act together. We are on the cusp of a new era in the diagnosis and treatment of many conditions. Epilepsy is the condition close to my heart. Genetic diagnosis could change the medical landscape with the need for new and re-purposed drugs. Personalised medicines are now more than just a promise. But we need them today, not tomorrow.
In November 2014 the government commissioned an Accelerated Access Review to make it easier for NHS patients to access innovative medicines, medical technologies, diagnostics and digital products. This is exactly what is needed.
And this is big news not just in the epilepsy community but also for people with other long-term health conditions such as cystic fibrosis. But while the UK are proud to be world leaders in research and innovation, legislative processes can be sluggish and lumbering.
The Accelerated Access Review makes several vital recommendations, including flexible pricing arrangements and the gathering of real-world data to show the effectiveness of a drug.
We urge the government to get behind the recommendations of the review immediately and implement a common sense approach that could be life changing for many people with long-term health conditions - epilepsy included.
One of our patients recently received a potentially life-changing genetic diagnosis for his epilepsy. The drug he needed was available in Germany but not licensed for epilepsy in the UK. His mother was fortunately able to buy the drug herself, setting up a trust fund that would ensure her son a lifetime's supply of the drug.
This is not how healthcare in this country should look. It should not be the case that the right drugs are only available to those who can afford to pay for them. This effectively establishes a two-tiered system based on means and not need, and that is unacceptable.
The Accelerated Access Review makes admirable strides towards building a health system that can keep pace with changing technology, new diagnostic tools and innovative treatments.
But it remains to be seen what this means in practice for people who rely on medical research charities like Epilepsy Society. If other barriers, like the current evaluation criteria for the cost-effectiveness of drugs, still stop us getting the right drugs to those who need them, then we are ultimately prevented from acting in the best interests of our patients.
These hurdles mean the UK is in danger of lagging behind in the race to deliver world-class care. The NHS could and should lead the field in guaranteeing that the groundbreaking advances we have in research and medicine, are translated into appropriate and timely treatments, no matter how individualised that treatment is. Otherwise we are failing those who need us. And the results of our research will benefit people all over the world - but not here in the UK.
Yes, the pharmas must play fair but the government must play fast. And the charities? We must be emphatic and fearless in lobbying for change. Epilepsy Society speaks for over 600,000 people in the UK living with epilepsy. The majority face a lifetime of medication. We must make sure they receive the best and most appropriate drugs at the right price, and as quickly as possible.