How illegal dealers of Hepatitis C treatment save lives across Europe.

Image by Arek Socha from Pixabay

David Cowley’s kitchen counter is littered with small boxes with obscure names like Sovaldi or Sovefpur. Inside each box rattles a bottle of 48 pills, a twelve-week treatment that can completely cure hepatitis C.

The 60-year-old has salt-and-pepper hair that falls gently across his forehead, where wrinkles and laughter lines hint of adventurous tales from the past. Cowley isn’t a pharmacist, nor a doctor, although he may look like an eccentric apothecary. He is, in fact, a former drug dealer. In the seventies, he was part of the generation of young Europeans that travelled to Thailand and explored life through a drug-induced haze. A life on the edge, which put him behind bars.

Cowley doesn’t know at what point he caught hepatitis C, but it was most likely during this time of shady company and shared needles. He only found out about the disease twenty years later, once he was back on the straight and narrow. Oddly enough this diagnosis would bring him back to his old profession — supplying drugs, but not recreational ones this time. Cowley began helping desperate patients throughout Europe to import life-saving hepatitis C medicine from India.​

But why do patients from Western countries turn to a former drug dealer organising an informal Buyer’s club from his kitchen?

Rationing health

Susan Cox was diagnosed with hepatitis C in 2015. She went to the doctor with pain in her back and wrist, and never expected to learn that she had the disease. « I don’t know when I caught it, because hepatitis C can lay dormant in the system for years, » she explains. The virus has few symptoms in the short term, but in over three-quarters of cases, it leads to chronic liver damage. A hepatologist told her about the miraculous Sovaldi treatment but told her that she couldn’t access the treatment, which is rationed and only given to the most advanced patients. “I was furious !” she recalls. “I was told that I wouldn’t get any care, even though the treatment exists. All I wanted was to get the virus out of my body!”​

In France, an estimated 230 000 people are infected with hepatitis C, and so far only 26 000 have been fully treated with Sovaldi, the medicine that eliminates the virus from the body. “We are under instructions to estimate the gravity of the case, and only provide Sovaldi to the patients in the most advanced stages,” explains Hachid Becher, a doctor specialised in the liver, working at Paris’ Hôpital Bichat. The patients that are allowed access to the treatment were those who had already developed stage two fibrosis, a condition that significantly lowers your life expectancy. “This decision isn’t motivated by clinical reasons, as many patients already suffer during the early stages of fibrosis. The only reason is the cost of hepatitis C medicine today”, explains the doctor. The fact is, the French social security is forced to ration Sovaldi, because if they treated all the patients that needed it, they would be bankrupt. Each twelve-week treatment costs the State 46 000 euros — that’s like swallowing an iPhone every time you take a pill.

“How much can we charge without starting a revolution? ”

Solvaldi is a medical marvel: in 90% of cases, it makes the hepatitis C virus disappear completely from patients’ bloodstream with next to no side effects. The drug was developed in 2014 by the American pharmaceutical company Gilead. It was immediately hailed as being miraculous, the scientific community compared it to the invention of penicillin. Just as immediately, Gilead placed their patent on the drug, meaning they are the only ones that can produce and commercialize the treatment, and so they can charge as much as like for it.

​Although high prices for innovative medicine have been the norm for decades, Gilead took it one step further. Before, pharmaceutical companies had explained their high prices by the amount of research and development that goes into producing innovative drugs, and by the need to have a return on their investment. But in this case, the US Senate found objective proof that the company had fixed their prices without any economic considerations, solely based on the monopoly they held on it.

The US lead a thorough investigation into Gilead because of one simple reason: harsh drug laws meant that many addicts had ended up in prison, and amongst them were many hepatitis C patients. The State itself has to take care of the people it puts behind bars, and so paying for Sovaldi suddenly became an issue. The US Senate launched an 18-month independent investigation into the ways the prices of Solvaldi were fixed. The report had worrying results: «Over the eight months Gilead spent determining the price of Sovaldi, the company repeatedly made clear its primary focus was outmanoeuvring potential competitors to ensure its drugs had the greatest share of the market, for the highest price, for the longest period of time. (…) During its pricing process, Gilead also considered what price it could set without risking “external factors,” such as public outrage, media attention, and congressional inquiries — potentially diminishing the drug’s reputation or revenue potential. » Gilead had created a colour coded system that calculated the benefits to be made by placing prices high, against the risk of a public reaction, and using this pay-off, they worked out how high they could fix the price. “The question they asked themselves was how high can we go, without causing a revolution”, sums up Olivier Maguet from Médecins du Monde.

Producing the treatment costs as little as 2,3$ a day, making the retail price 200 times more than production costs. And the majority of research that led to the little rattling bottles of pills wasn’t even done by Gilead. The molecule had been discovered by public research institutes, it had been further developed by the company Pharmasset, from whom Gilead purchased the patent in 2011, for 11 billion dollars. It is now worth 30 billion. The pharmaceutical company’s actual work didn’t consist in inventing a miraculous treatment that would save lives — it consisted of placing bets, purchasing patents and investing money to make more money. Eliminating hepatitis C definitely wasn’t on their to-do list. Since Sovaldi was discovered, deaths due to hepatitis C in the world have continued to rise, going from 500 000 in 2014 to 700 000 in 2015.

Last hope: pharma-pirates

Fanny turned to the internet in the hopes of finding an alternative solution and stumbled across David Crowley’s Facebook group. It felt like a dream — the Welshman could import the exact same treatment from India for a little under a thousand euros. Whereas Western countries accepted Gilead’s patent and paid the price for it, India had refused in the name of public interest, meaning the country could produce generic copies of the medicine for less than a thousand dollars.

As Cowley wraps up boxes of medicine in brown paper, ready to be dispatched to hopeful patients, he describes his feelings of the time. « When I found out about what the pharmaceutical companies were doing, I was disgusted. I found out that India had refused the patent, and I decided to begin importing the medicine to help other people get cured, » he explains. Time hadn’t marred Cowley’s rebellious side. He contacted a friend in India, and started importing the drugs to the UK and dispatching them throughout the world, on a voluntary basis. This system is known as a « buyer’s club », a term coined during the 80s. At the time, HIV treatments were also extremely expensive, and similar underground pharma-pirates began importing copies of the medicine from South Africa.

France is one of the countries from which the most patients turn to David for help, because of the country’s strict rationing of the medicine, and the fact that laws on importing medicine are stricter than in the UK. It’s a kafkaesque system that spans three countries, but for many, it is the only option. David receives hundreds of desperate emails a day, and helps around twenty people a month acquire treatment. “What I’m doing definitely has an activist element to it. I get quite nervous, because not all of it is legal. But Buyer’s clubs help bring these problems out into the open.” He hopes to raise awareness about the problem. « Pharmaceutical companies aren’t there to help people, all they want is profit, » he states, with a touch of bitterness.

David acts as a middleman between his clients and Indian pharmacies. Out of the 1000 euros sent to him, he pockets 200. The treatment arrives by post, right to the customer’s doorstep. To get the packages past customs, the Welshman has developed creative techniques. One client, Jacques, explains that he received his bottle of pills, opened and filled with cotton, « so that the pills wouldn’t rattle around and spark suspicion at customs.” Though forbidden in France, in most cases, the pills reach destination thanks to these techniques.

To bypass customs, other sellers prefer handing the treatments over in person. At Porte d’Italie on the outskirts of Paris, dealers frequently wait to sell their treatments. On the forum SOS Hepatite, patients explained having organised meetings with sellers met on the internet to recuperate their medicines.

Risky Business

Susan received her treatment, and is now completely healthy. David Cowley assures that the medicine he imports is all good quality and safe, and he works closely with an Indian pharmacy to ensure this. However, safety standards in the developing country aren’t as high as they are in the West. In 2014, the United States convicted the Indian generic medicine producer Ranbaxy for having falsified their safety and quality texts, and lied to regulators about their procedures. This isn’t an isolated incident. India’s CDSCO, Central Drugs Standard Control Organization, asserts, a little too optimistically, that « only » 4.5% of drugs available within the country are of bad quality, but the reality could be even worse than that. Recent studies show that one in every seven drugs could fail to meet quality and safety standards.

Other shady dealers on the internet provide even riskier options to treat hepatitis C. Just like counterfeit Vuitton bags, or suspicious “Lakoste” polo shirts float around the web, so too do counterfeit drugs. On the website, an Amazon for questionable pills, you can by Sovaldi for 100 euros the pill, 5 times less than its cost in France. But impossible to know what you’re getting. Ordering pills online is riskier than playing your life on a game of heads-or-tails, as 62% of medicine on the internet is fake, according to the EAASM, European Alliance for Access to Safe Medicines. Some fake medicines are merely useless, harmless pills made of flour. Others are expired drugs or dangerous mixtures. Drug trafficking kills an estimated 700 000 people a year.

Powerless state, omnipotent industries?

Unable to receive care in their own country, French citizens are being pushed towards far riskier options, all because France fails to stand up to the pharmaceutical industry. WTO agreements allow the use of an “ex-officio licence”, which enables countries to ignore patents on medical products when they stall easy access to health treatments. The Indian government applied the law, but in France, the pharmaceutical industry is too strong for the government to risk it. “The government doesn’t have the political courage to do it. Too many jobs hang on the line,” explains the doctor Hachid Becher. Pharmaceuticals, the second largest industry in the world employs over a hundred thousand people in France.

Instead of defying Gilead, the French health ministry took a different decision at the beginning of 2017. They decide to treat all patients with a far cheaper drug, that is only efficient for 2 out of 6 genotypes of the disease. Although this decision will enable three-quarters of patients in France to be treated, for Olivier Maguet, at Médecins du Monde, it’s too little too late. “The rules of the game have changed; we can’t carry on within this system. We need to change it radically.” The doctor runs the campaign “the Price of Life” within the NGO, which fights to restrict the maximum prices of drugs. A lot is a stake, according to the doctor. “We need to send a strong message to the pharmaceutical industry. The US Senate’s report proves that Gilead’s choices with Solvaldi aren’t just a change of scale, they’re a paradigm shift. It’s very dangerous.” For this industry upon which all of our lives hang, profit cannot be the only criteria in determining market rules. “Medicines are part of a market, but it can’t be a market like any other. For drugs, differences in prices don’t just determine whether or not you can afford that new iPhone. Prices determine whether people live or die!”

For the time being, the only difference between the market of pharmaceuticals and others is that drug companies have far higher profit margins. With Solvaldi, Gilead rakes in a staggering 50% profit, even after taking into account taxes and research and development costs. On most markets, that figure is around 10%. Imagine what would have happened if Alexander Fleming had put such a mark-up on the price of penicillin.

Gender, sex and politics. Sign up for my free newsletter

Get the Medium app

A button that says 'Download on the App Store', and if clicked it will lead you to the iOS App store
A button that says 'Get it on, Google Play', and if clicked it will lead you to the Google Play store