A Patient’s Perspective on The People's Prescription

Mariana Mazzucato launches the People’s Prescription report.

Mariana Mazzucato launches the People’s Prescription report.

Last week, I attended the launch of ‘The People’s Prescription’, a report written by the renowned economist Mariana Mazzucato, who had joined forces with Just Treatment, and campaign groups Global Justice Now and STOPAIDS to re-imagine innovation in health.

I have a personal interest in this report as I was initially denied access to a treatment because it was deemed ‘too expensive’ - one of the central problems with the status quo which the report argues needs to be fixed.

I was diagnosed with active Hepatitis C in 2008 and at the time the only treatment available was a toxic course of pills and injections with a success rate of just 40%. After 14 weeks I was suffering from the side effects but the treatment was having no effect on killing the virus. The decision was made to stop the treatment. This had a massive negative effect on my mental health and I became increasingly depressed and anxious; after a breakdown I was put on a variety of psychiatric medication.

I was shocked when told that I was not ‘ill enough’ to be treated
— Clare Groves, former hep c patient

By 2013 patients in the United Kingdom were being treated with a new treatment sold by Gilead called sofosbuvir, which had a cure rate of 98%. But the price was incredibly high - approximately £40,000 per treatment course. The NHS had little choice but to ration the treatment and when I first asked for the medication I was shocked when told that I was not ‘ill enough’ to be treated.

It was not until April 2016 that I was finally given the treatment I needed. Because it was so expensive the hospital pharmacist warned that if I lost any of the pills they would not be replaced, they would only issue me with 4 weeks treatment at a time, one pot contained 28 pills with each pill worth £498.  The treatment worked and I am now classed as cured of Hepatitis C.

This whole experience really angered me and compelled me to learn more about how the pricing of medications worked. This led me to Just Treatment and I became a patient leader with them. The fact is that this is happening to many patients, and not just to patients with Hepatitis C, it is happening with many different illnesses. Due to high prices, patients are being denied access to the life changing treatments they need.

Just Treatment’s Simon, Emma and Clare in the audience.

Just Treatment’s Simon, Emma and Clare in the audience.

As argued in the People’s Prescription report, the law as it stands does not encourage the innovation that we really need. It doesn’t give us, the public, value for money or fair access to medicines. Instead pharmaceutical companies have become over-financialised, chasing short term maximum profits, often spending as much buying back their own shares (which helps increase shareholder profits) as they do on R&D.

The report sets out a clear diagnosis of the multiple problems with the current system, then argues for short term and long term action to fix the broken pharmaceutical R&D model and transform how medical innovation happens. It will give patients and former patients like me a lot of hope. It shows there are other options and models available to encourage innovation, such as the pooling of knowledge and transparency.

A lot of public financing goes into health research which is then bought by private companies who sell it back to the NHS at a vast profit. So we the public are in effect paying twice for our medicines.

It is clear is that we are being ripped off and our health is losing out to profit. Since joining Just Treatment I have met other patients who have had to wait a long time to access the necessary medicines or who are being denied them completely due to the high price. I really hope that the politicians will sit up and take notice, and realise that another fairer model is possible, policy change is vital if we are to achieve just treatment for everyone. The current policy means the public purse is losing out, the NHS is losing out and vitally patients are losing out too!

I believe we can make this happen. It is time to bring an end to the profits before patients rules we have now, and start putting patients before profits.

Clare Groves