eyes on the U.S.

A Dying Girl's Family Takes On Big Pharma Over Drug Access

A U.S. pharmaceutical company testing a drug meant to slow down child dementia refuses to offer the medication to a terminally ill young girl in Germany. Her family is fighting the decision.

Hannah Vogel with her father
Hannah Vogel with her father
Christina Berndt

MUNICH — Hannah suffers from child dementia, and the 9-year-old will die within the next few years. Special medication could help, but the pharmaceutical company that produces this medication doesn't want to give it to Hannah.

The Vogel family was in Spiekeroog for their summer holiday when Hannah's problems became obvious. She was suddenly unable to cycle anymore, and she needed help when she descended the stairs, or would instead go down by sliding one step at a time on her bottom. "That's when we realized something was seriously wrong," says Stefanie Vogel, Hannah's mother.

The family has known about what's ailing Hannah since February. She was diagnosed with the very rare hereditary disease NCL2, also known as CLN2, or child dementia. It is one of the worst diseases a child can develop, caused by a single genome in Hannah's DNA being defective, which in turn means her cells are unable to "digest" her body's waste products. The body is essentially poisoning itself over a long period of time. Walking, talking and writing are already difficult tasks for Hannah, but her steady decline will worsen over time. In the end, she'll be unable to do anything and will die in a few years' time. "After we received the diagnosis, we just cried for weeks on end," Hannah's mother says.

But there could be hope for Hannah. An American pharmaceutical company called Biomarin has developed a drug for NCL2 that is currently being clinically tested in four different countries. There are even 12 children in Hamburg who are receiving this drug, and some parents of these children say that the medicine, BMN 190, has stopped progression of the disease. Biomarin itself has noted the drug's "encouraging results."

But though it would be legally possible to offer the drug to Hannah, the company refuses to give her the medication. Biomarin cites its "ethical responsibilities" towards all patients, saying its goal is the quickest possible approval of the drug. Company officials argue that approval could be endangered if the drug were to be given to a patient outside of the clinical trial parameters.

The company's position is incomprehensible to Hannah's parents, who have decided to fight the decision. They have created both an online petition and a Facebook page to put pressure on Biomarin. "You simply have to help a terminally ill child if you have the means to do so," Stefanie Vogel says.

They have even found a physician who would be able to treat Hannah with the drug should it become available to her. "Some children from the study have already received the drug for over a year without any side effects worth mentioning," says metabolism expert Thorsten Marquardt of the University Hospital of Münster. This is also verified by Angela Schulz, who is conducting the study with BMN 190 at the University Hospital Hamburg-Eppendorf: ‘We are glad that, so far, we have not noticed any serious side effects,’ she says.

She doesn't want to comment on some of the success stories behind BMN 190 because a scientific evaluation would have to take place beforehand. But it is nonetheless clear that this situation presents a dilemma for her. "It is heartrending to exclude children from this trial who could benefit from it."

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What It Means When The Jews Of Germany No Longer Feel Safe

A neo-Nazi has been buried in the former grave of a Jewish musicologist Max Friedlaender – not an oversight, but a deliberate provocation. This is just one more example of antisemitism on the rise in Germany, and society's inability to respond.

At a protest against antisemitism in Berlin

Eva Marie Kogel


BERLIN — If you want to check the state of your society, there's a simple test: as the U.S. High Commissioner for Germany, John Jay McCloy, said in 1949, the touchstone for a democracy is the well-being of Jews. This litmus test is still relevant today. And it seems Germany would not pass.

Incidents are piling up. Most recently, groups of neo-Nazis from across the country traveled to a church near Berlin for the funeral of a well-known far-right figure. He was buried in the former grave of Jewish musicologist Max Friedlaender, a gravesite chosen deliberately by the right-wing extremists.

The incident at the cemetery

They intentionally chose a Jewish grave as an act of provocation, trying to gain maximum publicity for this act of desecration. And the cemetery authorities at the graveyard in Stahnsdorf fell for it. The church issued an immediate apology, calling it a "terrible mistake" and saying they "must immediately see whether and what we can undo."

There are so many incidents that get little to no media attention.

It's unfathomable that this burial was allowed to take place at all, but now the cemetery authorities need to make a decision quickly about how to put things right. Otherwise, the grave may well become a pilgrimage site for Holocaust deniers and antisemites.

The incident has garnered attention in the international press and it will live long in the memory. Like the case of singer-songwriter Gil Ofarim, who recently claimed he was subjected to antisemitic abuse at a hotel in Leipzig. Details of the crime are still being investigated. But there are so many other incidents that get little to no media attention.

Photo of the grave of Jewish musicologist Max Friedlaender

The grave of Jewish musicologist Max Friedlaender

Jens Kalaene/dpa/ZUMA

Crimes against Jews are rising

Across all parts of society, antisemitism is on the rise. Until a few years ago, Jewish life was seen as an accepted part of German society. Since the attack on the synagogue in Halle in 2019, the picture has changed: it was a bitter reminder that right-wing terror against Jewish people has a long, unbroken history in Germany.

Stories have abounded about the coronavirus crisis being a Jewish conspiracy; meanwhile, Muslim antisemitism is becoming louder and more forceful. The anti-Israel boycott movement BDS rears its head in every debate on antisemitism, just as left-wing or post-colonial thinking are part of every discussion.

Jewish life needs to be allowed to step out of the shadows.

Since 2015, the number of antisemitic crimes recorded has risen by about a third, to 2,350. But victims only report around 20% of cases. Some choose not to because they've had bad experiences with the police, others because they're afraid of the perpetrators, and still others because they just want to put it behind them. Victims clearly hold out little hope of useful reaction from the state – so crimes go unreported.

And the reality of Jewish life in Germany is a dark one. Sociologists say that Jewish children are living out their "identity under siege." What impact does it have on them when they can only go to nursery under police protection? Or when they hear Holocaust jokes at school?

Germany needs to take its antisemitism seriously

This shows that the country of commemorative services and "stumbling blocks" placed in sidewalks as a memorial to victims of the Nazis has lost its moral compass. To make it point true north again, antisemitism needs to be documented from the perspective of those affected, making it visible to the non-Jewish population. And Jewish life needs to be allowed to step out of the shadows.

That is the first thing. The second is that we need to talk about specifically German forms of antisemitism. For example, the fact that in no other EU country are Jewish people so often confronted about the Israeli government's policies (according to a survey, 41% of German Jews have experienced this, while the EU average is 28%). Projecting the old antisemitism onto the state of Israel offers people a more comfortable target for their arguments.

Our society needs to have more conversations about antisemitism. The test of German democracy, as McCloy called it, starts with taking these concerns seriously and talking about them. We need to have these conversations because it affects all of us. It's about saving our democracy. Before it's too late.

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