Eventually the tides will have to turn

On her desk there’s a framed quote of Nelson Mandela: ‘It always seems impossible until it is done.’ She got it from her kids for mother’s day. The quote fits. Professor Carin Uyl-de Groot, of Erasmus School of Health Policy & Management, has a clear mission: honest medicine pricing and better medical accessibility for everyone. Earlier this year Volkskrant called her the ‘promise of 2018’. It’s a title that she lives up to: she’s managed to get as far as the European Parliament.

What’s your research about?

‘I’ve been researching cancer medicine for about a year now. In a particular I’ve been looking into access patients have to these medicines. The last twenty years the costs of these medicines has multiplied by twenty. Treating one patient can sometimes cost up to a hundred-twenty thousand euro – and that’s for a three months’ life extension. And when there’s a lot of patients, you can imagine that there’s a problem in insuring it all. At the same time it’s the pharmaceutical industry that cashes in the big money. For comparison: banks make a profit of about ten precent, the pharmaceutical industry – twenty. Some pharmaceutical companies claim, ‘We haven’t made a profit.’ But their CEO makes about 17 million a year. Well.’

How is it possible that the profit margin is that big?

‘The producer of every new medicine has its patent, which means a monopoly. With a monopoly you can ask for whatever price you want. The pharmaceutical companies feel pressured by stakeholders – they need to make a large profit. We also see that when the rights to a patent end, the producers find ways to still keep it running, keeping the prices up. Sometimes old medicines are rebranded in order to get them a new patent that’ll last another twenty years.’

Wouldn’t anyone in their right mind say that we shouldn’t want that?

‘I’m in talks with everyone including the European Parliament to see what we can do about this. The tricky thing is that we’re dealing with a lot of lobbyists who want to keep the prices the way they are. The pharmaceutical industry has people everywhere.’

You say that the pharmaceuticals have lobbyists in politics – isn’t that a bit cynical?

‘It’s just the truth. So we also have to lobby. As citizens we have a right to be healthy, a right to get treatment. This isn’t quite yet reality in Netherlands, but in some Eastern-European countries the scales have completely tipped. Everyone can see it. Eventually the tides will have to turn.’

Will they?

‘Of course they will. I’m not doing this research on my own – at Erasmus I have twelve PhD students, we’re a whole team. Also doctors and patient organisations are participating. The KWF, for example. But I do think we’re going to be playing the long game here. It’s mostly the injustice of it that bothers me. For example: a lot of medical research is funded by the people, but then at some point it’s bought up by a pharmaceutical. They’ll be charging for production costs, but in truth those have already been paid for – by us.’

Is your solution to put a stop to the free market?

‘No, but there needs to be a certain transparency when it comes to production costs. Companies can do whatever they want. My formula is: by all means take on the development costs, the failures, the profit too – but be transparent about the costs.’

Are they all bad guys?

‘I’m not inherently against big pharmaceuticals. But they need to know their role in the healthcare system. If they develop medicine: fine. But make sure it’s happening more ethically, that companies take some social responsibility. Right now they do this by supporting a project here and there in Africa. But at the same time they keep on making massive profit off of the people who are sick and dependent on them. And of course there are good aids, ones that really matter. Not every single aspect of it is bad. But the goal is to get the numbers to make sense. Make the prices reasonable.’

Which company is going to say: you’re right, we’re earning too much?

‘There needs to be transparency, there need to be organisations that can check the prices and say, ‘You have sky-high production costs? All right, show me how.’ Beyond that we can have a look at what’s feasible for each country. For example, we can make patients’ medicine accessibility far better.’

In what ways are patients dealing with the current high pricing rates?

‘A lot of people simply don’t have any access to certain medicine. The Netherlands is really behind in this aspect. It differs depending on where you are, which hospital you go to, which doctor you have. I believe that everyone should have access to the medicine they need. Right now what’s happening is that budget agreements are being made with health insurers: ‘We’re going to treat ten more people and then that’s that.’ And if you’re number eleven, you either don’t get treatment or you have to go to different hospital altogether.’

Are you an activist fighting the good fight?

‘I’d rather call it a mission. I have three of them, this is one.’

What are the other ones?

‘Next to this I’m doing real world data research. Clinical researches often use patients that are young and healthy. We look at who gets what kind of aid, and what happens when the cancer patients who get certain aids are older, or have different illnesses?

The third mission is to help cure pediatric cancer. There’s certain tumours that haven’t seen new treatments in thirty years. Because the demographic is so small and so full of risks the development just halts to a stop. I think that’s unacceptable. I want to stimulate international research and knowledge exchange.’