Living With E.Coli: Pain, Doubts And Drugs At 5,800 Euro Per Dose

Like hundreds of others in Germany, and a few cases popping up elsewhere, one 29-year-old is lucky to be alive, but otherwise facing major health problems.

(Francis Bijl)
(Francis Bijl)
Edgar S. Hasse

HAMBURG - Andrea Heinze was a 29-year-old in perfectly good health -- until she ate those sprouts.

Like hundreds of others in Germany, she had consumed produce contaminated with the E. coli bacteria.

Now Heinze knows this summer won't include trips to the swimming pool: not only would people stare at the blue marks on her legs and hips, she's got a catheter in her arm -- and there's also the high risk of infection. She won't be going jogging or playing other sports either - she'll be happy if she manages to climb the stairs on her own. Heinze, in fact, is still very, very sick.

She has to undergo four hours of dialysis three times a week. Once a week, she needs antibody therapy. Heinze suffers from the hemolytic-uremic syndrome (HUS), caused by the E. coli bacteria. Some 850 others in Germany present the same condition. At least 47 of them have died.

While Heinze's situation is no longer life-threatening, her world has been turned upside down. Her body is always at risk due to swellings caused by toxins and her kidney function is severely limited.

Although she is back in her own apartment, going back to work as a sales agent is out of the question for now. Her mother has moved in with her part-time.

One of the priciest drugs on earth

The Asklepios Clinic in Hamburg-Barmbek has become a second home for Heinze. She's there this particular morning, making her way to the third floor in her wheelchair. There she's greeted by Dr. Tobias N. Meyer who takes her to the treatment room where she lies down with a folded towel supporting her head. Meyer, the hospital's lead kidney specialist, attaches the catheter in Heinze's shoulder, and for 30 minutes the liquid from the bag suspended overhead drips into her bloodstream.

It contains Soliris. One dose of the drug costs 5,800 euros, making it one of the most expensive medications on the planet. For many HUS patients it's their only hope of one day leading a normal life again. Kidney specialists know the drug well, but it has never been tested or approved for treating an E. coli infection. However, because of the astonishing results in some cases, it is being used on 100 seriously ill HUS and E. coli patients in Germany.

"Five outpatients and four patients here in the hospital are presently being treated with Soliris,"" says Meyer. He adds that the drug, produced by American biotech company Alexion, may prevent or at least alleviate the swellings in the brain and kidneys that HUS causes.

Alexion‘s German subsidiary currently provides the vials free of charge, and began researching other possible uses of the drug. Andrea Heinze is part of that study. She knows that there may be risks, but she just wants her life back; a life that doesn't involve dialysis or the risk of inflammation. She says, to her, the risk is worth it.

Heinze first went to the emergency room at the Barmbek Asklepios Clinic on May 20th. She was complaining of serious stomach pains and doctors told her she was infected with E. coli. Not long after, she developed the hemolytic-uremic syndrome, which can lead to severe neurological damage and renal failure.

It was the sprouts

Later, doctors determined her illness had been caused by contaminated sprouts that she had eaten at her favorite restaurant on May 1st. Since, Heinze has avoided raw foods. "Everything I eat is cooked," she says.

As the anti-inflammatory antibodies slowly drip into her veins - a process that in itself is not painful -- Heinze talks about her illness, and the terrible headaches she suffered. "But it's a lot better now than those first four weeks in intensive care."

Back then, she even suffered hallucinations. She only partially remembers what happened. Her parents came to see her twice a day. She was in a lot of pain. And she was very afraid. "I also slept a lot, I was sedated."

As Heinze slowly began to feel better, she started watching news reports about the E. coli epidemic on TV. She then knew she was not the only case; there were others at the clinic who had also been infected. After three weeks of lying alone in her room, she was well enough to be wheeled outside. "I met other patients like me, who looked just like me. Green hospital gown, covered head, surgical mask," something she says helped her feel better.

Heinze doesn't ask herself why she had to be one of those who ate contaminated sprouts, and now has to receive antibodies and undergo dialysis three times a week. "It was just bad luck, it happened by pure chance," she says. "And I'm glad that I got through those terrible first few weeks." Psychologists call this inner strength resilience, the ability to bounce back when things go wrong.

Andrea Heinze hopes that Soliris will work and that one day she'll be able to come off dialysis. Until then, she can't return to work. She may have lost over 13 lb (6 kg) since falling ill, but she hasn't lost her sense of humor. "Talk about a summer diet!" she says with a laugh.

Read the original story in German

Photo - Francis Bijl

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Air Next: How A Crypto Scam Collapsed On A Single Spelling Mistake

It is today a proven fraud, nailed by the French stock market watchdog: Air Next resorted to a full range of dubious practices to raise money but the simplest of errors exposed the scam and limited the damage to investors.

Sky is the crypto limit

Laurence Boisseau

PARIS — Air Next promised to use blockchain technology to revolutionize passenger transport. Should we have read something into its name? In fact, the company was talking a lot of hot air from the start. Air Next turned out to be a scam, with a fake website, false identities, fake criminal records, counterfeited bank certificates, aggressive marketing … real crooks. Thirty-five employees recruited over the summer ranked among its victims, not to mention the few investors who put money in the business.

Maud (not her real name) had always dreamed of working in a start-up. In July, she spotted an ad on Linkedin and was interviewed by videoconference — hardly unusual in the era of COVID and teleworking. She was hired very quickly and signed a permanent work contract. She resigned from her old job, happy to get started on a new adventure.

Others like Maud fell for the bait. At least ten senior managers, coming from major airlines, airports, large French and American corporations, a former police officer … all firmly believed in this project. Some quit their jobs to join; some French expats even made their way back to France.

Share capital of one billion 

The story began last February, when Air Next registered with the Paris Commercial Court. The new company stated it was developing an application that would allow the purchase of airline tickets by using cryptocurrency, at unbeatable prices and with an automatic guarantee in case of cancellation or delay, via a "smart contract" system (a computer protocol that facilitates, verifies and oversees the handling of a contract).

The firm declared a share capital of one billion euros, with offices under construction at 50, Avenue des Champs Elysées, and a president, Philippe Vincent ... which was probably a usurped identity.

Last summer, Air Next started recruiting. The company also wanted to raise money to have the assets on hand to allow passenger compensation. It organized a fundraiser using an ICO, or "Initial Coin Offering", via the issuance of digital tokens, transacted in cryptocurrencies through the blockchain.

While nothing obliged him to do so, the company owner went as far as setting up a file with the AMF, France's stock market regulator which oversees this type of transaction. Seeking the market regulator stamp is optional, but when issued, it gives guarantees to those buying tokens.

screenshot of the typo that revealed the Air Next scam

The infamous typo that brought the Air Next scam down

compta online

Raising Initial Coin Offering 

Then, on Sept. 30, the AMF issued an alert, by way of a press release, on the risks of fraud associated with the ICO, as it suspected some documents to be forgeries. A few hours before that, Air Next had just brought forward by several days the date of its tokens pre-sale.

For employees of the new company, it was a brutal wake-up call. They quickly understood that they had been duped, that they'd bet on the proverbial house of cards. On the investor side, the CEO didn't get beyond an initial fundraising of 150,000 euros. He was hoping to raise millions, but despite his failure, he didn't lose confidence. Challenged by one of his employees on Telegram, he admitted that "many documents provided were false", that "an error cost the life of this project."

What was the "error" he was referring to? A typo in the name of the would-be bank backing the startup. A very small one, at the bottom of the page of the false bank certificate, where the name "Edmond de Rothschild" is misspelled "Edemond".

Finding culprits 

Before the AMF's public alert, websites specializing in crypto-assets had already noted certain inconsistencies. The company had declared a share capital of 1 billion euros, which is an enormous amount. Air Next's CEO also boasted about having discovered bitcoin at a time when only a few geeks knew about cryptocurrency.

Employees and investors filed a complaint. Failing to find the general manager, Julien Leclerc — which might also be a fake name — they started looking for other culprits. They believe that if the Paris Commercial Court hadn't registered the company, no one would have been defrauded.

Beyond the handful of victims, this case is a plea for the implementation of more secure procedures, in an increasingly digital world, particularly following the pandemic. The much touted ICO market is itself a victim, and may find it hard to recover.

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