Roche, why all the secrecy?

After years of negotiations Kadcyla, a drug to treat secondary breast cancer, will now be available on the NHS. Roche Pharmaceuticals, who own the drug, finally reached an agreement with NHS England last week, although the final price is not known publically. As patients in the UK and globally are too frequently priced out of the drugs they need we need to ask, why all the secrecy?

Trastuzumab Emtansine (brand name Kadcyla) was initially priced at £90,000 and rejected by NICE in December 2016 for being too expensive. As negotiations went on, some patients were able to get Kadcyla through the Cancer Drugs Fund but many had to wait as the drug was rationed. This caused uproar across the UK, with over 115,000 people signing the Breast Cancer Now petition to get Kadcyla approved on the NHS and calls for the UK to issue a compulsory license. Last week, NHS England and Roche agreed on a final price for the drug so that it would be available to patients in England and Wales*.

As part of price negotiations, governments sign contracts with a confidentiality clause that ensures the price of the drug will not be not revealed. This secrecy is one of many blankets that shroud the inner workings and negotiations of the pharmaceutical industry, an industry with some of the highest profit margins in the world.

By hiding the final price from the public, we are losing our power to ultimately get affordable drugs for all cancer patients in the UK and globally. Transparency is a key democratic principle. It allows us as citizens to scrutinize decision-making and hold governments to account if necessary. If we don’t know the price, we do not have the information we need to determine if taxpayers money is being used effectively.

Not only is it our democratic right, but without price transparency the power of our health representatives are weakened. Imagine walking into the negotiation room and having to bargain for an item with no knowledge or evidence of how much others have paid? As a result there can be huge price differences between countries. For example, sofosbuvir, a cure for Hepatitis C, costs roughly 14 times more in Australia than Germany because Germany were able to negotiate a better deal.

Ultimately, Roche do not want the price released because they cannot justify the high price tag. Without doubt Kadcyla will be another on the list of extortionately priced drugs that are slowly bankrupting the NHS whilst Roche’s chief executive pockets millions (Roche’s CEO Severin Schwan earned US$ 12-million in 2015). This is not to say the drug is not important. Kadcyla offers patients an extended lifeline (6 months on average) and has very little side effects. The problem is that price tag doesn’t need to be so high. The estimated costs of R&D, whilst often cited as the reason for high prices, vary widely and are strongly debated.

Manon Ress from ‘The Union for Affordable Cancer Treatment (UACT) commented ‘UACT has some questions regarding the final negotiated price and has deep concerns over the lack of transparency of the negotiations and the price of the life-saving drug.’ There is a lack of real evidence and transparency about how much pharmaceutical companies actually spend on research and development (R&D) and how much the public have contributed to the drugs development, as 30% of global medical R&D is financed by the public.

John Piears, who founded Dying for a Cure after losing his wife to cancer, said “It is welcome news that Kadycla will now be made available to terminally ill breast patients on the NHS, but truly shocking that some patients are likely to have died needlessly while Roche, the drug company that owns the monopoly on the drug, withheld it for many months to try to extract the highest possible price from the NHS.  Even now it seems that the price is too high for the NHS to make it available to all breast cancer patients – cheaper drugs will need to be tried first, even if they are likely to be less effective or has worse side effects. For too long drug companies have held patients to ransom in this way, extorting unwarranted high prices in order to recoup R&D costs many times over.’

We must tackle high drug prices. In the case of cancer, just over half of 30 innovative cancer drugs are available in the UK. As cancer rates rise globally patients are not able to get the drugs they need. In South Africa, activist and mother Tobeka Daki died in November of breast cancer without ever having access to Trastuzumab, which is considered an essential medicine by the World Health Organisation. In South Africa, the drug costs over £30000 in the private sector despite the fact that the drug can be produced with reasonable profit for as little as £190 per treatment. It was announced last week that Roche, who also own Trastuzumab are being investigated by the Competitive Commission for ‘excessive pricing’.

If a company refuses to drop the price, the government is able to use Crown Use Provisions in patent law to enable others to produce the drug without consent of the owner. Ress, from UACT, commented ‘Today, about 43 months after the drug was first approved by the EMA, the pricing issue appears to have been resolved sufficiently to enable access to this important drug.  Clearly, the dispute over the price would have been resolved faster and with a better outcome if the government had informed Roche it would end the legal monopoly unless Roche offered a price that NICE considered reasonable’

The secrecy around the final price of Kadcyla is reflective of an industry that is consistently investigated and fined for backdoor lobbying and manipulating prices. High prices are not just a market failure, but a policy failure too. We’ve sat in the dark too long. We need to know how much our government pays for drugs, the truth about how much these cost to make and how much public funds are involved in their development.

*the drug was made available on the NHS in Scotland in April this year


Tabitha Ha, Advocacy Officer