Argentina approves Spinraza for all SMA Types

Congrats to Argentina, Argentina have approved Spinraza for all SMA types without limitations, hurray. These children, adults get the chance for a better life.

In the next few days comes the management plan. This is a historically victory. Rich country like Denmark, which still refuses therapy for its patients.

All of Scandinavia countries has an age restriction.
Argentina can be proud of itself

Countries like Denmark (only for SMA type 1, SMA type 2 under 6 age,
Norway (SMA typ1) 
Sweden all SMA patients, but only under 18 years.

In Europe, there are few countries like Germany that have all SMA Patients access to Spinraza, without any age limit.

Publisert av

Liz

Until those day, was my kiss of death been stronger than those of the devil. I like to ride through hellfire with him ,when I come out victorious afterwards. I'm strong and proud rheumatoid arthritis warrior Följ mig, tack! Liz - Fotoblogg Spelblogg

8 tankar om “Argentina approves Spinraza for all SMA Types”

  1. A country that made a big leap into democracy. A country which health system has improved in recent years more and more. It has really set a historic milestone. Very well done Argentina. 👏👍🙏💪

  2. What helps, if Sweden to save most premature babies, when it is stuck in other important treatments?

    Really sad these countries differences.

    Grateful for Agentina. 🙌🙌🙌🌷

  3. I’m glad for this country. 👏🙌 At the same time, it is embarrassing for countries like Denmark, Norway, Sweden. Countries that do not want to invest in their patients.

    In general, the Swedish health system is catastrophic. My girlfriend has cancer. She has a long waiting time, instead of talking directly to doctors, she has to talk to administrative staff all the time, no post-operative rehabilitation, and she has to bring her own medication for nausea for chemotherapy.
    I admire the system in Germany, it offers many perspectives. We are now determined to leave Sweden. My girlfriend can be treated in Germany. The perspective of healing the cancer is much better. In our region, if you are not from Göteborg, Stockholm, Uppsala is not good. No good regional supply.
    I do not want to offend anyone now. I do not think the Swedish SMA childrens are well treated! How do you manage those Mia!

    1. First I congratulate Argentina. They took a big step in the right direction.🙌❣️

      Dear Rasmus, I’m sorry to hear you have to gain such negative experience.
      I agree with you on this point, that the system is going slowly and down. I experienced a situation from which I learned. I called the ambulance. In our area, these ambulances are staffed by specialized staff, but not an emergency doctor.
      Normally, usually they have an mobile ECG on board. They can this connected and sent to the nearest hospital the results, after that say a team which therapy are important.
      Unfortunately, this could not happen because the device was defective on this day.

      We had to go to the hospital and wait a long time, with a long time I mean very long. A patient with a heart attack would have died at this time.

      After this experience Nils and I had to learn, not everywhere in Sweden is a structure in health care. I bought an ECG device, I also learned important tactics in the revival.

      Yes you are right. Sweden can still learn a lot from Germany. Especially in cancer treatment. How do I rehabilitate a patient during chemotherapy. Yes, we also keep our son in Germany hands with his SMA. He is doing much better than many other children in Sweden with SMA type 1. I have to say that Germany has built up a golden network in the SMA treatment. Children benefit from it. We never regret this step.

      Many Germans and other folks see Sweden as the perfect country, but this ist not the case.
      Behind the scenes, things look different. It has as big deficits as Denmark. You fail because of the bureaucracy, long waiting time , this is only to call these cornerstones.

      Germany has saved us. I know that many people, even in Sweden, complain about the Germans. They buy their houses away, speak bad English, are intrusive. But I experienced quite different Germans. They are helpful, a folk who understand fun, they move together when others need help. See the case with Bettina.
      Bettina would like to live, please donate for a treatment with Spinraza

      There are all prejudices. I have respect for Germany, they embraced us and saved our son. Meanwhile, our son is sitting alone, he drives/pushes his wheelchair alone.
      In Sweden, I would never have imagined that
      Hopefully you will find a way, crossed my 🤞 for you. /Mia

      1. Argentina rocks and celebrates her rare heroes. ❤️

        Rasmus – I can recommend go to Germany.
        Norway has a two-part health system like Sweden.
        https://www.vg.no/nyheter/innenriks/i/rqWvl/bjoerg-dalen-47-reddet-livet-med-privat-kreftbehandling-fikk-medisin-som-det-offentlige-ikke-kan-tilby
        https://www.kreftfri.no/kreftbehandling-i-utlandet
        My mother has a rare form of cancer, Germany could help her.
        While our own country did not know the newest therapies, neither the drugs nor allowed. We had a lovely clinic at the same time provided us with an apartment to live.
        Germany is a special country for us. They gave us hope, they gave the help we need.
        I can not say anything negative about this great folks.
        You should finally forget the past.
        Every country has had its downsides. We look forward to the next check-up, we are using each trip to get to know new places.

        Thank you Germany for everything. 🙌 Greetings from Norway

    2. It sounds like honey in my ears what their say about Germans. Thank you all for a hot discussion, which is going in another direction, keep it up. 💗

      First off. German doctors (cancer doctor, neurologist, rheumatology) have more freedom. They show more courage in their treatment. The special, they speak every detail with you.
      Also I have very nice positive experiences with the treatments. I got a drug in the 70’s that was never approved for rheumatism (OFFLABEL). Aspirin helped my heart, I got a heart attack from my rheumatoid arthritis, I was 5 years old.

      Then another story. The first anticancer drug used in rheumatology MTX was given to a rheumatoid patient in Germany. At that time I was the patient in a children’s clinic in Garmisch Partenkirchen, specially for patients with rheumatic sjukdom. It was a unique story back then. 40 years later, rheumatology took a big step forward.

      I’ll agreed with Mia. She also found many improved options here. She had a flash as she would be in another century.
      Its the same in cancer treatment in Germany. German doctors are absolutely the best thing that can happen to you. There are therapies that aren’t approved where Denmark, Sweden and Norway – because of the high costs.

      I think it stupid how many think about the Germans. They want our help, they want the Germans to visit their country, but they do not want us to stay there forever. Even I have had a lot of negative experiences in Denmark and Sweden aswell.
      Rheumatic drug where I get now, it is also very expensive. Patients in Sweden and Denmark do not getting. You must all switch to cheaper alternative. Therefore, I am glad that I am here in Germany. Because of my husband who is Swede, I know the welfare system so well. With Mia and Nils I got to know the big gaps, that the Swedish system has.

      We do not have such serious waiting times, no matter if dentist, rheumatologist, etc

      Rasmus you can read more here.
      Germany has a very large network of specialists. The Oncology Centers can be found here.
      https://www.oncomap.de/centers (The website is available in English)

      Cancer centers, which have a lot of experience in the treatment of cancer patients, can be certified by the German Cancer Society (DKG) – or the German Society of Hematology and Oncology (DGHO). This is a seal that tells that the centers are verified and always controlled , hey have a high successful rate in the treatment

      Please feel free and let me know, how can I help you?
      Write in the internal forum where you live, so I can give you addresses.. 😉

      1. I never thought, I would give it other patients who wish for a better treatment. Thank you, thank you for your help. My girlfriend and I see a light on the horizon. 🌅

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