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Proplacení terapie Zolgensma pojišťovnami

30.4 Oborová zdravotní pojišťovna dnes vydala na základě doplněných podkladů z FN Motol rozhodnutí o schválení úhrady LP Zolgensma dle par. 16 Zákona č.48/1997 Sb. S naší pojišťovnou jsme měli vždy ty nejlepší zkušenosti a opět jsme se nezklamali. Tímto chceme poděkovat pojišťovně OZP za rychlé vyřešení nelehké situace v které se ocitli.

27.4 V tuto chvíli máme potvrzenou informaci, že se i naše pojišťovna (byť nebyla panem premiérem jmenována) zabývá schválením terapie Zolgensma pro Maxíka. 

Pokud tedy dojde k zaplacení terapie pojišťovnou, k úhradě z naší strany nedojde. S Krajským úřadem Moravskoslezského kraje jsme řešili pro nás nepříjemnou situaci ohledně sbírky a vybraných peněz. Bylo nám sděleno, že není možné prostředky vracet a s penězi musí být naloženo dle účelu sbírky, tak jak je oficiálně stanoveno, tedy:

"Sbírka je určena na podporu Maxmiliána M., který od svého narození trpí nevyléčitelnou nemocí, spinální svalovou atrofií. Výtěžek půjde na zajištění léků a léčiv, které nejsou hrazeny z veřejného zdravotního pojištění a na následné náklady spojené s jejich aplikací. Dále na nákup podpůrných prostředků, které povedou ke zlepšení kvality jeho života, konkrétně na zajištění kompenzačních pomůcek, rehabilitačních pomůcek a na samotné rehabilitace, dále na úhradu osobní asistence. Z výtěžku sbírky mohou být podporovány i jiné děti a osoby trpící spinální svalovou atrofií."

Celá sbírka je pod dohledem Krajského úřadu Moravskoslezského kraje. Chceme tedy ubezpečit zlé jazyky, že není v naší moci s prostředky nakládat jakkoliv se nám zlíbí a vždy musí být vše doloženo.

Část prostředků bude Maxíkovi ponechána na nákladné rehabilitace, pomůcky apod. a část prostředků rozdělíme mezi děti a osoby se Spinální svalovou atrofií. Jakým způsobem to provedeme se musíme rozmyslet a poradit. A budeme to řešit až v době, kdy bude mít Maxík terapii za sebou vč. 3 měsíční lhůty a vše se vrátí do normálu. Celá situace se musí nejdříve uklidnit a vyřešit.

Application Zolgensma

21.4 Today we were pleased with the great news. We were allowed to apply Zolgensma gene therapy at the Motol Hospital. In the following days, Maxík will undergo antibody tests and an application contract will be drawn up. This should happen during May. You can read the information on the website of the Ministry of Health here.

15.4 It may seem that nothing is happening, but the opposite is true. As for the collection. The course goes down and at this point the amount is sufficient. Unfortunately, the joy of this is spoiled by stress and problems with Zolgensm application.
As we mentioned earlier on the website, we are in contact with Motol Hospital and Dr. Haberlová is making a great effort to apply them. However, the administrative burden in the Czech Republic is enormous, in comparison with other countries, almost incomprehensible, so everything takes so long.
Communication with Budapest is perfect. They have experience with the application since it was already performed in 3 children. Now is a fixed deadline by which it is necessary to express themselves in order to do everything necessary.

Aside from us, they are also dealing with Alex from Slovakia, so they need time to do everything. If Motol does not comment by this date, we will go to Hungary. This is the only certainty at the moment.
You may not understand why we are not going straight, but we do not want to give up. Everything is working intensively and from the beginning we counted on the fact that everything will  in Czech Republic..The application in Hungary brings the necessity of an interpreter and a 3-month stay where our family has to split up. At home, we also have everything designed to be as safe as possible from Covid-19.Even though our hope is getting smaller every day, we still hope it will succeed and the application will take place in the Czech Republic…

Frequently asked questions

6.3.2020 Since our in-boxes on social networks and email are full, we added a new category "Frequently Asked Questions" https://www.pribehmaxika.cz/nejcastejsi-quazky 

We will gradually add everything you ask most often according to our time possibilities

English version of the website

Newly added English version of the website. (click on the flag in the upper right corner changes) Many thanks to Mrs. Olga for the translation. Please excuse any mistakes, we solve everything on the go.

 

We must continue the fundraising

Due to the situation we are forced to continue the fundraising. The official US amount for gene therapy with Zolgensma is $ 2,125,000, plus a 10% tax. The price also does not include the cost of hospitalization, various examinations and tests. Furthermore the Czech crown currency rate is currently rapidly going down.

If the possibility of application in the Czech Republic did not work out application in Hungary is another option. The estimated application cost in Hungary is $ 2.3-2.5 million. (price of the drug, import of the drug, tests, examinations and application of the drug. The price does not include 3 months accommodation or price reserve for possible complications)

We have 100%, thank you!

100% !!! It's incredible what we've achieved together in those few days. THANK YOU !!

But everything is not as easy as it seems. Nobody expected the fundraising  to go at such a pace. We are still waiting for the final calculation of the drug. Moreover, it contains VAT, which none of us knew. Our IT has also set a disadvantageous rate, so the amount shows 100%. We still do not know whether application in Motol University Hospital will be possible. If not, the amount will additionally increase. Several examinations are also required. Maxik must pass an antibody test. We are very happy, but we have to wait until these issues, which are crucial, are resolved. Please be indulgent towards us.