THE stories are sadly familiar — a child, a mother, a grandparent desperate to get access to a medicine that will give them hope, but denied it because the price charged by the pharmaceutical corporation is too high.
In Ireland, we’ve seen it most recently with Orkambi, a treatment for cystic fibrosis that is priced at an eye-watering €160,000 per patient per year and with Respreeza, a treatment for certain types of emphysema at over €100,000.
No one wants to deny a child — or anyone for that matter — a drug that could save their life, but over the last five years the pressure on the health budget from a range of new medicines has been steadily rising.
Spending more on medicines means less money to pay nurses, run diagnostic services, deliver prevention programmes or hire home helps.
The tension is real and something has to give.
This problem is not unique to Ireland.
In the UK, debate is raging follow a draft decision to withdraw breast cancer medicine Kadcyla (trastuzumab emtansine) from use on the National Health Service in England, having been judged too expensive to be cost- effective.
Across the world, the story is the same — unaffordably high medicine prices crippling health services, and patients suffering, even dying, without access.
So what is going on? Firstly, it is important to note that these prices aren’t high because the drugs are expensive to manufacture.
Hepatitis drug Sofosbuvir, which is sold in the US for $1,000 (€930) a pill, is being made and sold at a profit in India for less than $5 a pill. Rather, the prices are high because of patent-based monopolies which prevent competition and allow the patent holder to charge whatever price makes them the most money.
In 2016, Ireland had an annual budget of €35m to treat its estimated 40,000 patients living with hepatitis C.
At €55,000 for a 12-week curative course of treatment only 636 people can be treated each year, leaving the majority of hep C patients on a very long waiting list — a wait that puts their health at risk.
However, at generic prices all 40,000 patients could be treated with just one year’s budget while at the same time saving over €20m.
It is argued by the pharmaceutical industry that these high prices are necessary in order to stimulate innovation and the development of new medicines.
But this profit-driven system means that we get innovation many can’t afford, or no innovation at all.
It is impossible to convince the families of the 1.8m people globally who died from tuberculosis (TB) last year that the system is working.
TB predominantly affects the poor, meaning there is little prospect of companies making big profits from new TB treatments.
As a result, it has been ignored by big pharma and only two new TB medicines have been developed in the last 50 years.
There is a better way to pay for the development of new medicines than through high drug prices.
Globally, we already spend $1 trillion a year on pharmaceutical products but, at most, $127bn of that goes into research and development.
We don’t need to find new money — we just have to spend it more wisely.
By paying up-front for medical research — much like we do today through grants to universities and institutes, and through prizes awarded to groups that crack specific health challenges — we can encourage the innovation we need. And as it’s paid for up-front, there is no need for monopolies; we can allow quality- assured generic competition to drive prices down close to the cost of production.
The €20m Ireland would save when switching to generic hepatitis C treatment could be allocated for research into new treatments for diseases that currently go without.
These ideas and many more have been proposed by international bodies including the World Health Organisation, the UN Secretary General’s high level panel on access to medicines, and the Lancet Commission on Essential Medicines Policies.
The Irish punch well above their weight in medicines.
The country is home to nine out of the top 10 big pharma corporations.
The Government is well positioned to have an impact.
Unless we act, we will continue to be held to ransom by drug companies that force us to choose between paying their sky-high prices, or watching our loved ones die too soon.