Modern morality tale of life-saving drugs
The scandalous dearth of the cystic fibrosis drug Orkambi in Ireland is a modern morality fable, writes Joe Brolly
“The point is, ladies and gentlemen, that greed — for lack of a better word — is good. Greed is right. Greed works. Greed clarifies, cuts through and captures the essence of the evolutionary spirit… And greed will save that other malfunctioning corporation called the USA.”
TELL that to the 25 million Americans living in trailer parks (2013 US census) or the 55 million living in poverty. Gordon Gekko may not have been real, but he was an entirely accurate representative of the corporations that rule over us. The greed, the ruthlessness, the staggering corruption. The absolute immorality. As they perpetrate their giant con on the planet, they disguise it with the language of gobbledegook. It is not a surprise that a recent poll found that almost 50pc of Wall Street traders relied on horoscopes. Basically, the markets are a casino, where bets are almost always based on ‘hunches’ or plain old insider dealing.
The real greed is good speech was given by Ivan Boesky, a self-promoting charlatan known by an adoring American public and media as ‘The Great White Shark of Wall Street’. He gave the speech at Berkeley University, one of the country’s Ivy League colleges, and received a standing ovation. “Greed is good. I think greed is healthy. I want you to know that. You can be greedy and still feel good about yourself.” Within a year, this god of Wall Street was in federal prison, convicted of wholesale fraud and stock manipulation. Not that it made any difference. The control that corporations have over the world now is unprecedented.
A successful Martian invasion couldn’t leave ordinary citizens any more powerless. Politicians have no power. They merely operate in the slim margins allocated to them by the corporate world. The reason we feel powerless is because we are powerless. You think Bill Gates lies awake at night worrying about what Enda Kenny might think? The European Commission rules that Apple owes us €13bn. Its CEO casually waves it away, like a man drinking a beer on his porch swatting an errant fly. “That’s just political crap,” he said.
Our Government — as it must — agrees, leading to the perverse situation that ordinary Irish people are going to pay through the nose for corporate lawyers to appeal against the decision. We may have 1,500 homeless families in Dublin, a crumbling health system and poverty accelerating out of control, but we cannot accept €13bn — a perverse, immoral outcome that is explained via gobbledegook.
One of the main Apple production factories in the Far East had so many suicides from oppressed workers (earning a dollar an hour) that they had to string catch nets around the perimeter. Yet the face of Apple here is very different. Go into an Apple store and you will see shining, young, pretty faces, reminiscent of young Mormons. Earnest, polite, hoping fervently you’re “having a good day.” If you’re running a slave trade, keep it out of sight, and put pretty faces at reception.
When my friend, Gary Dillon, died from cystic fibrosis three years ago, I never really recovered. I see it every day now. The blood running from his eyes. His mother hugging him as he choked. Since then, many other young Irish people have gone to this bitter end.
In 2012, an American bio-pharma corporation called Vertex, which had been funded by the Cystic Fibrosis Charitable Trust to the tune of $60m, finally made the big breakthrough. Kalydeco was a game-changer. For 10pc of cystic fibrosis sufferers, it was basically a cure.
Professor Jim Egan, clinical director of respiratory medicine at the Mater Hospital, describes its effects as near-miraculous. Vertex knew it was on to a winner and priced the drug accordingly. Ireland is the world capital of CF and Vertex offered it to us at just shy of €250,000 per patient per annum. These drugs are not priced for individuals to afford. The price is designed to blackmail governments and health care systems. One of our negotiators told me at the time: “They screwed us to the wall. They sat there listening to us for a fortnight, smirking. In the end, they told us we could take it our leave it. They knew we had no choice.” In the end, we paid them their quarter of a million per patient. Because, unlike these corporations, we cannot leave our citizens to die.
On Kalydeco’s tidal wave of success, the corporation quickly brought another drug to the market. Orkambi is a combination of Kalydeco and another compound. For Vertex, this drug has a vastly greater earnings potential, since it is designed for the 55pc of CF sufferers worldwide who suffer from the most common form of the disease. It just doesn’t work as well. Vertex’s own research shows that it works in around 30pc of those patients. Not as a cure, but it buys precious time, can dramatically improve quality of life and could be the bridge that keeps many of our neighbours and loved ones alive until the next drug finishes the job.
Jillian McNulty is one of the lucky ones. She has been on a free Orkambi trial and her life has been transformed. A few years ago, she could barely walk. She almost died at one point. She spent last week leading a protest march to the Dail, making a TV programme, addressing the lower house and criss-crossing the country.
What happens with CF is that your cells create mucus which starts to fill up your lungs. So you get infections. You exercise. You buy a treadmill to run on or a trampoline to bounce on in a desperate attempt to dislodge the mucus.
For a while you keep ahead of it. But it keeps advancing. You get sicker and sicker. You end up on oxygen masks, carrying cylinders around on your back. Initially, it’s like watery porridge in your lungs. But in the end it becomes like cement. It can’t be dislodged then and you die. Your breath has nowhere to go.
Bernie Priestley’s beautiful daughter, Triona, died a few years ago from CF. She could have lived if she had been on the Orkambi trial, but it wasn’t offered, in spite of the Priestleys’ entreaties. She was only 16. Bernie’s son, Colm, also has CF. Orkambi could make all the difference for him. I was at their house recently and over a cup of tea, he said to me: “I can’t ask anyone to pay €160,000 a year to keep me alive. I just can’t do it. It isn’t right, Joe.” I left the house in tears.
The problem is that Vertex doesn’t give a f ***. It asked for €160,000 per patient per annum for our 550 neighbours. It did all the things these corporations do. It had our representatives sign a confidentiality agreement. Then, it provided CF families with information that couldn’t be verified, which casts Vertex as the good guy. These families are at their wits’ end, and they don’t know what to believe. The HSE, meanwhile, is bound by the confidentiality agreement so can’t say anything. I spoke with the families in question last week and it is outrageous to see the effects of this sort of manipulation. The point? It is to emotionally blackmail the State. Vertex won’t offer anyone to come on radio or TV. It wouldn’t come on Claire Byrne’s special on Monday night, when everyone else was there.
We have zero power over Vertex. It doesn’t care whether our loved ones live or die. So the only thing we can do is train our guns on the Government. Kalydeco was approved by the HSE in just three weeks. Orkambi is more difficult. Because it works for only around a third of people, the State is seeking a performance-related payment system. So, the State will pay for those patients for whom the drug works. For the others, we won’t. They will come off the drug once it is clear it isn’t working and Vertex will be paid through the nose for the remainder. Which is fine. We know we are going to be screwed.
Dr Helen Liddy, who works with CF patients, said on the Claire Byrne show that we should make a stand now. We should tell Vertex to go to hell. Jillian was sitting beside me, the tattoo on her arm reading ‘Just Breathe’. I said: “You are right, but how can we let Jillian die?” Vertex knows that we won’t. We cannot.
This is the crux. The patent laws, which were sponsored and framed by large corporations, mean that life-saving medicines are traded just like oil, or gold or any other commodity. The point is to make CEOs and big shareholders rich. Richer than Croesus. Whether an Irish kid chokes to death is irrelevant. Vertex says that the cost of its two drugs is based on its research costs. It is the constant refrain of Big Pharma. Yet, they refuse to disclose those costs.
Just last week, Pfizer and Flynn, two pharma corporations, were fined almost £100m by the UK Competition and Market Authority for a typically amoral scam to manipulate the price of a highly effective epilepsy drug. The drug, Epanutin, was a branded medicine, and therefore subject to a price control agreement. So Pfizer ‘sold’ the distribution rights to Flynn Pharma, who promptly de-branded it. It did this by taking the name Epanutin off the cardboard packaging. Everything else was identical. The cost of having the printers delete one word from the exterior package was a 2,600pc increase in the drug’s price. Since the drug was critical to the health of the patients, the NHS had no choice but to pay. Overnight, the state’s annual bill went from £2m to over £50m.
The wheeze was only brought to light when a GP decided to check out what was going on for himself. He reported it to the CMA and they uncovered the disgusting practice. It is the tip of the iceberg.
Orkambi is a modern morality fable. The lives of ordinary people are irrelevant. The corporations behave whatever way they like then walk away from it, leaving us to clear up the mess. These corporations created the financial meltdown. Capitalism is supposed to mean that the gambler who loses picks up the bill. But this is not a capitalist system at all. The Irish Government was powerless. The IMF, an elite, unaccountable grouping created by the super-wealthy, strode into town and ordered us to sign a contract obliging ordinary Irish people to pick up the tab. Or else? Or else they would do what they did to Greece when they tried to make the banks accountable. Starve them until they signed the contract.
The corporations rule the world now. They have trampled over the planet, leaving poverty, social devastation, economic insecurity and environmental ruin in their wake. Earlier this year, Stephen Hawking warned that to avoid extinction human beings need to start leaving the planet within 100 years.
There are 1.5 billion people on the planet living in poverty. Not Jeffrey Leiden, the CEO of Vertex. Last year, he earned $46.7m. While Jeffrey was raising the statuette for best new drug aloft at the Big Pharma Oscars, Triona Priestley was dying in the arms of her mother.
‘We should tell Vertex to go to hell. But Vertex knows we won’t. We cannot’