April 25, 2021 at 10:58 am #16544IreneParticipant
I am 29 years old and live in Russia. During this time, there were different periods. I was born two months before the collapse of the USSR and adequate treatment became available for CF patients only when I went to school. At that time I began to receive Creon and Pulmozyme, which changed my life significantly.
Then there was a period of increasing of economics in Russia, when medicines and antibiotics, which previously people with CF could only dream of, became available. However nowadays we are thrown far into the past due to the state’s import substitution policy (original antibiotics from “Western unfriendly countries” have been replaced by cheap generic drugs, which not only have many side effects but also worsen the course of the disease).
As you can understand, in these circumstances it’s hard even to dream about Trikafta, since Russian authorities decided that even basic therapy is too expensive.
So my first question is how difficult it was for you to get Trikafta?
And I have to confess that I can’t help but think about immigration. I realize that authorities of other countries are not interested in immigrants with such health conditions, but what else can I do if my country is not interested to help to its citizens? I have law education, experience of work and volunteering, but I still have no rights in Russia.
My next question if you know any examples when people could immigrate with cystic fibrosis and with which foundation? As I know, it’s prohibited by US government to immigrate to USA for people with CF, but what about EU countries and UK?
When I talk about immigration I mean that I will study or work, but I’m afraid that my disease will not let me to get a residency.
Anyway, I will appreciate any advice, information and recommendations! Thank you!
April 28, 2021 at 2:48 am #16557Tim BlowfieldParticipant
Just recently the Australian Governments Advisory committee (PBAC) deferred a decision on Trikafta on the basis of cost. They will probably negotiate a lower cost sometime in the future but in the meantime CFers wait and suffer. They also considerred it only for the 508 mutations. Other mutations (there are about 120) that Vertex’s research has shown it should work were not even considered despite the fact that they would add little to the overall cost (90% of Australia’s CF population of 3500 have the 508 mutation. My wife has one of the rare mutations (R75Q) which it should work with but people with that mutation are just 9 (0.1%) recorded in the CF Database.
Sorry Irene, Australia wouldn’t have you too.
April 28, 2021 at 9:50 am #16559IreneParticipant
Thank you for reply, Tim. I have one 508 mutation and Trikafta suites me, but I can only dream about it to date.
April 29, 2021 at 1:14 pm #16569Canadian cf dadParticipant
Thank you for sharing your story and the challenges to get treatment in Russia. You certainly have my sympathy. Sadly Canada is likely not your answer as we are in the same position. Our government effectively witholds treatment for our 6000 cf afflicted children and young adults. Canada delays drug approval for years and years and hides behind Canada’s layers deep, snail paced, drug approval bureaucracy. Canada is currently the only G7 country in the world which has not approved Trikafta. Sorry on behalf of Canada. Wishing you well.
April 29, 2021 at 12:01 pm #16567Paul met DebbieParticipant
This will be a long process, Irene. Perhaps immigration to the EU is closest to your background. I only have some initial knowlegde I can provide here.
Immigration to a European country is easiest if you come as an immigrant using the ticket of a job. If you have some special skills that allow you to get a job with a company that is Europe based, this would by far be the preferred method of entering a European country. It would allow you to stay in the country on basis of the work permit. After a couple of years (mostly 5) you could apply for a residency of that country, after which you are free to settle in any European country. Which skills are in special demand differs from country to country. I have not heard of health discrimination in these cases. However, the company that hires you for the job could have certain standards if these are functional for the job that you must meat before they hire you.
Avoid entering any of the countries of the EU as a refugee, because the process is an ordeal and with a bad health you will suffer beyond capacity.
Try to contact bonafide people who have already done the process and let them advise you. You will find examples on these websites:
The EU medicine bureau (EMA) has approved of trikafta in 2020 (kaftrio it is called in EU). The individual countries are now in the process of approving it for the medical insurance coverage they provide. In the Netherlands for example, this approval has recently happened. After that, they have to negotiate a price with Vertex, which could take some time, probably months. I think in most other European countries this process will follow a similar timeline. In any case, by the time you have figured out your immigration, kaftrio will be available in most countries in the EU for residents.
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