Christian charity: Magnus gets support from a monastery in Denmark for his self-funding treatment with the magic muscle juice Spinraza

A therapy must be secured. If you must to paying for your own social treatment with your own financial means, then it’s a poker game. Out of pure desperation, many parents and patients do that.

Spinraza is still not available to all SMA Folks. Especially adults, teenagers over 18 years struggle so hard. Magnus 18 years old from Denmark with SMA type 1 has paid his own treatment for more than 1 year.

Now a monastery from Denmark has donated to Magnus, so that he can continue his therapy

Please consider a treatment with Spinraza must be a lifetime

In Denmark have round about five childrens access to Spinraza.. Thats really sad what hard regulation there are. It’s really sad how politic play with others life.

Please donate for Magnus

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Liz

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4 reaktioner till “Christian charity: Magnus gets support from a monastery in Denmark for his self-funding treatment with the magic muscle juice Spinraza”

  1. I must correct you. 🙂

    Magnus gets the drug from the Biogen for free in Belgium (EAP Program), but his parents have to paying 9600 Kronen (1.286,08 Euro) for each hospital visit and doctor work.

    In contrast, Bettina from Switzerland has to pay completely for Spinraza with the high costs. Of course Magnus does not have to. Only hospital and doctor must be paid, that is the big financial difference.

    Agreed. Normally, a country like Denmark should provide this treatment. But you have other priorities!

  2. I guess certain people have failed in my eyes. This resulted in the bad reviews. These include among the muscle organizations in Denmark. She doesn’t done better job and presented all the study results, it would not have come to that. The whole thing was taken lightly.

    All patient protests were fruitless.

    Good for Magnus, he was fortunate that he came in the expiring EAP program. Others are no longer lucky. I find it not quite so tragic if the costs of doctor treatment itself must be taken.

    In some treatments this is the standard.

    Nevertheless a nice gesture to the family. 👍

  3. He is covered by the EAP program. The cost of maintenance is still tolerable every quarter. We pay these costs every month for the tube feeding , where our insurance does not want to pay anymore. Is it getting more extreme the situation for people with a disease in this world.

  4. Wie meine Vorredner schreiben. Es ist zwar erschreckend das Familien zu dem letzten Strohhalm greifen müssen, auch in einem europäischen Land wie Dänemark. Aber, nun das aber. Durch das EAP Program was mittlerweile geschlossen wurde, hat Magnus die geringe Kosten der Arztbehandlung zu tragen.
    Bettina aus der Schweiz muss die komplette Summe von einer halben Million Euro aufbringen. Dass ist krass , da muss weiter die Therapie gesichert werden.

    http://www.sma-schweiz.ch/spinraza-kostenuebernahme-durch-iv-stellen/

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