Hi all,
I have high-risk multiple myeloma and I am being treated successfully with Empliciti (elotuzumab), Revlimid, and dexamethasone. My husband and I are think about moving back to Europe. Empliciti has been approved by the European Commission, but it is not available in either Denmark or Sweden.
Does anyone know why that is? Maybe individual healthcare systems in the EU decide themselves what drugs are made available to patients?
We'd love to move, but we don't want to risk having to be treated differently and less successfully.
Thanks in advance for any help!
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Re: Emplicit (elotuzumab) in Denmark and Sweden
The European Commission approval of Empliciti is just the regulatory approval. As you suggest, it's not a reimbursement approval, and reimbursement decisions are made at the individual country level in Europe (and sometimes at the individual insurance organization level within countries).
My sense is that your treatment options could be more limited if you return to Europe rather than staying in the U.S. "Off label" prescribing of myeloma therapies is permitted – and very common – in the U.S., while it is not that common in Europe. This means, for example, that there is regular use in the U.S. of Revlimid, Velcade, and dexamethasone in newly diagnosed myeloma patients, even though that regimen is not officially approved for that use.
New therapies also are typically approved first in the U.S. Sometimes the difference in approval times is just 6 months. But sometimes it is years. Kyprolis was approved in the U.S. in the summer of 2012. It wasn't approved in Europe until late last year. And it still may not have reimbursement approval in many European countries.
Other factors to consider are ease of access to clinical trials testing potential new therapies, the extent to which physicians can customize therapy rather than having to stay within national or regional treatment guidelines, and the extent to which patients and caregivers have a real say in their treatment.
Good luck with your decision!
My sense is that your treatment options could be more limited if you return to Europe rather than staying in the U.S. "Off label" prescribing of myeloma therapies is permitted – and very common – in the U.S., while it is not that common in Europe. This means, for example, that there is regular use in the U.S. of Revlimid, Velcade, and dexamethasone in newly diagnosed myeloma patients, even though that regimen is not officially approved for that use.
New therapies also are typically approved first in the U.S. Sometimes the difference in approval times is just 6 months. But sometimes it is years. Kyprolis was approved in the U.S. in the summer of 2012. It wasn't approved in Europe until late last year. And it still may not have reimbursement approval in many European countries.
Other factors to consider are ease of access to clinical trials testing potential new therapies, the extent to which physicians can customize therapy rather than having to stay within national or regional treatment guidelines, and the extent to which patients and caregivers have a real say in their treatment.
Good luck with your decision!
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Jonah
Re: Emplicit (elotuzumab) in Denmark and Sweden
Hi Jonah,
Thank you so much for your reply. Lots of really useful information. You make a very interesting point that getting current (successful) treatment is one thing, but getting access to new and even more effective treatment in the future may be challenging in Europe.
Many thanks!
Thank you so much for your reply. Lots of really useful information. You make a very interesting point that getting current (successful) treatment is one thing, but getting access to new and even more effective treatment in the future may be challenging in Europe.
Many thanks!
Re: Emplicit (elotuzumab) in Denmark and Sweden
Hi BeckyH,
Many important facts from Jonah.
Let me exemplify by my situation in Sweden. I'm also high risk and suggested to my doctor Kyprolis, Revlimid and dex. My doctor in a small hospital said no; too expensive. He allowed me to have Velcade instead of Kyprolis. However, I also have a doctor in the capitol of Sweden after my allogeneic transplant in 2012, and I may have to register there to have Kyprolis. We are discussing it right now.
The health care system in Sweden is under a huge strain, partly because of the arrival of a quarter of a million migrants in Sweden the last two years in a population of less than 10 million. Costs an enormous amount of money. Increase in sexual harassment. Sweden is lost. Denmark and other Nordic countries are better. This is so sad ...
Good luck to you!
Many important facts from Jonah.
Let me exemplify by my situation in Sweden. I'm also high risk and suggested to my doctor Kyprolis, Revlimid and dex. My doctor in a small hospital said no; too expensive. He allowed me to have Velcade instead of Kyprolis. However, I also have a doctor in the capitol of Sweden after my allogeneic transplant in 2012, and I may have to register there to have Kyprolis. We are discussing it right now.
The health care system in Sweden is under a huge strain, partly because of the arrival of a quarter of a million migrants in Sweden the last two years in a population of less than 10 million. Costs an enormous amount of money. Increase in sexual harassment. Sweden is lost. Denmark and other Nordic countries are better. This is so sad ...
Good luck to you!
-
asaryden - Name: asaryden
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: August 2010
- Age at diagnosis: 48
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