By Morgane Clarke, Key Correspondent for the Irish Forum for Global Health
The Harsh Reality
Imagine that you have recently been diagnosed with breast cancer. Then, imagine discovering that there was a novel drug that could treat your breast cancer more effectively than any other. Now imagine that this life-saving drug is so prohibitively expensive that neither you nor your country’s health service can afford to pay for it. Imagine that there is no other option than to wait and see how the other treatments work out. Watch as your friends play the same deadly waiting game.
Now imagine that you’ve been recently diagnosed as HIV positive. You start one treatment. Bad side effects. A second. More bad side effects. You start a third, and a forth and then a fifth treatment. Your fifth treatment currently works for you. And then you realise that there are some countries where there are rarely more than one treatment available to help you. A far harder (and often far shorter) struggle with HIV awaits some people, purely by the virtue of their place of birth.
With their impassioned accounts of the harsh reality of living in a world with no guarantees on access to medicines, Babalwa Malgas of South Africa’s Cancer Alliance and Robbie Lawlor of the HIV advocacy group ACT UP Dublin remind us of why we have gathered here today. To fight for fair prices. To fight for the right to health. To stand up and say, “enough is enough”.
“I hear people talking about price. I hear people talking about profit. For me it is a matter of life and death.”
To echo a sentiment that was repeatedly mentioned over the course of the day, the epidemic of high prices in Ireland is unsustainable. We cannot afford to sustain our spending on medicines. The latest figures from the Department of Public Expenditure and Reform show that there has been a 75% increase in high-tech drug expenditure in the period 2000-2016. This culminated in a total public expenditure on pharmaceuticals of €2 billion in 2016 alone.
Unfortunately, Ireland is home to a variety of rare disorders. Rare disorders require orphan drugs, named specifically for their treatment of something for which there is little known about, or few people living with it. As a small consumer base of patients isn’t very attractive to the pharmaceutical industry, the research and development of treatments for rare diseases has been monetarily incentivised. Orkambi is one such orphan drug used to treat cystic fibrosis, which is currently costing Ireland 650 million per year over 10 years. I am glad that drugs such as Orkambi are accessible to the people who need them. However, something is not quite right here. By providing companies with extra monetary incentives just to make them – orphan drugs have become Big Pharma’s cash cow, with 7 of the top 10 FDA big sellers being listed as having orphan drug status.
As someone with a lab-based research background, I understand first-hand that a lot of good, hard work goes on behind the scenes – and this work merits a reward. However, I always had a feeling that the companies were being rewarded a little too much. This was confirmed during a presentation from Ellen t’Hoen where she outlined a study showing that with almost every drug, the cost of production is lower than what is actually charged, and on average companies make a 21% profit (Gilead, which owns the patent to the Hepatitis C drug Sofosbuvir, makes a whopping 53% profit).
Health economists would argue, as they did at the conference, that these prices are simply unaffordable, that our money would be better spent on other kinds of healthcare. While that might be part of the story, the reality of the situation is that what whether we spend a higher lower percentage of our budget on pharmaceuticals – in the first instance the price is not fair. What we are paying for does not reflect what we are gaining from it.
There appears to me to be an absolute lack of transparency, and a lack of respect on the part of the pharmaceutical industry to allow us to make informed decisions. This is not trade negotiation. This is extortion.
Where do we go from here?
Current monetary incentivisation practices are clearly not working. Looking to the future of healthcare in Ireland, we the public are daily, implicitly or explicitly, involved in paying for our pharmaceuticals. We are both funders and consumers of these products, we know what we want and we can band together to harness our stake in the future of healthcare.
Why shouldn’t we try something new? We know that the system is broken, that we are spending so much on pharmaceuticals that I don’t believe we have anything to lose from trying something new. Ireland is host to about 300 pharmaceutical companies, and has a wealth of home-grown talent working in the industry. We are well-placed to leverage these strengths to our benefit.
If we are often paying more than the pharmaceutical companies need to recoup their costs of productions and profit, I would like to know what we are actually paying for. Yannis Natsis, a policy manager with the European Public Health Alliance (EPHA) calls for controlled negotiations as a tool to offer countries greater transparency throughout the regulatory process. Seeing the political representation at this conference offers a glimmer of hope that there is in interest in providing some kind of political or policy-based solution to this issue.
Of course, Ireland is not the only country that has been affected by the exorbitant prices for new medicines. This is a global issue.
Within Europe, partnerships such as the Valetta Declaration or BeNeLuxA have formed in order to provide a stronger, more unified front in negotiations that could provide us with an alternative to the current model of one-sided negotiations.
The 2nd Annual Access to Medicines conference raised questions that have stuck with me. How do we want to shape our society? What are the values of this society? We can rationalise high prices and the necessities of closed negotiations and intellectual property until the cows come home. But should we?
When we talk about pharmaceutical pricing and negotiations, we cannot forget stories like Robbie’s and Babalwas’, which represent the harsh reality of life for far too many people. Do we want to live in a society that values patents and profits more than we want to live in a society that values the health of its people? I don’t think we do – but it is taking conferences like this for people to realise that is unfortunately the case.
“If we are complacent, well then, we are complicit”.
This phrase, uttered by Mr Lawlor certainly does not apply to the dedicated volunteers with Access to Medicines, or to the speakers and attendees alike at the conference, who have all decided enough is enough. It is time to speak out. I’ve joined them – will you?
May 2nd, 2018