French thyroid patients face Kafkaesque pill shortage after drug scandal

If you have a thyroid problem, better not to live in France. Last year angry patients hauled the French health authorities over the coals after enduring months of sickness from a new version of their sole treatment. So the government promised a choice of drugs. Yet three months later, those drugs are very hard to find. Not fun if your health depends on taking the right pill every day.

(This is an English version of a blog published on Mediapart in French.)

You would think you were in a Third World country. After the French government patched up what has become known as the Lévothyrox scandal last autumn by promising new drugs, people who swapped onto a new treatment now face acute shortages of those treatments. I should know. I am one of them.

The scandal broke last year after a new version of Lévothyrox, the only drug then authorised in France to treat patients with an underactive thyroid, was rolled out from April. By late summer patients were complaining of nasty side effects. One was a prominent actress, Anny Duperey, who got big TV coverage.

Lawsuits ensued, and an embarrassed Health Ministry persuaded Merck, the firm that makes Lévothyrox, to bring back the old formula – which three million patients had taken, mostly without notable side effects. They also asked pharmaceutical major Sanofi to supply its thyroid drug, L-Thyroxin Henning, currently sold in Germany. Both were to be available from mid-October.

If you read the official announcements made at the time, you would think that had resolved the problem. I can assure you it has not.

I had suffered some unpleasant symptoms, so after the announcements I was keen to change to L-Thyroxin Henning, as the old version of Levothyrox would only be imported until the end of 2018. And this is exactly what endocrinologists recommended in circumstances like mine.

In a document dated October 15th, 2017, the French Society of Endocrinologists said this: “In cases of persistent undesirable (side) effects despite (a good) hormonal balance, envisage a change of treatment… in priority to L-Thyroxin Henning from Sanofi, available perennially from mid-October 2017.”

Armed with my new prescription, I headed to the chemist’s shop. Even then, it was touch and go. The chemist had been told to deliver only one box of pills a day. Thankfully, I was the first person to ask that day, so I got my box with enough pills for three months. And my symptoms gradually eased.

But it was time to renew by mid-January, and this got hairy. Two chemists told me they could not get hold of L-Thyroxin Henning at all. The first one tried for a week, and the second one offered to give me Euthyrox, the new name for the old version of Levothyrox. But changing from one drug to another without medical advice is not advisable.

Then things got stranger. My GP phoned to say she had called Sanofi, and the company was still awaiting an authorisation to sell L-Thyroxin Henning in France. Until then it is importing stocks from Germany sporadically.

But wait – wouldn’t this authorisation usually come from the very same authorities that announced triumphantly that the drug would be available from October? This is Kafkaesque. Meanwhile, patients who have started on L-Thyroxin Henning need to keep taking it daily so as to keep their condition stable.

And although I was offered Euthyrox in one chemist’s shop, it too is apparently hard to find, according to the chemists I spoke to. “We have been lied to about everything right from the start,” said one of them.

Back to the first chemist’s. Finally, the wholesaler was able to send out boxes of L-Thyroxin Henning in half the dosage I need. Fortunately that was still OK, because two boxes would keep me stable for the next three months. But how many others are unable to renew their prescriptions?

And how much longer must thyroid patients live with this insecurity? In a country like France with a strong public health system, it is surely totally unacceptable to have to trundle from chemist’s to chemist’s to find a prescribed drug that your medical condition requires you to take every day. 

 

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