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Moving abroad with CML diagnosis

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Hi all,

My name is Zdenek, I am 33 years old, I live in Czech Republic and I have been diagnosed with CML 6 years ago. I am on 400mg/day Glivec ever since and having deep molecular remission for last 5 years. First I wanted to say thank you to whoever is running this site, I have never posted in here but been following the articles and forum for very long time and it helped me a lot in many ways and I think this is not a wrong place to come with a question i have.

I have been working in Finance for many years and luckily never had any side effects from Glivec and the fact that I was diagnosed with CML luckily did not have any impact on my professional or personal live. I am actually always telling my Doctor that as much as stupid this can sound that I feel like am I living better life than before the diganosis, treating my body and mind better and appreciate every little thing much more...

I have never shared details about being diagnosed with CML to my employer or my manager, I was always afraid that they might look at me different or start to give me reliefs. I did not want any of that and i guess it was part of me trying to fight CML with having mindset of healthy person.

As I work for international corporation company and doing quite fine, I now have an option to go and get promotion and work abroad in our Corporate central HQ which is located in Seattle Washington U.S. - this is something me and my family would really love to do but there is too many questions now about how to handle the move and make sure we don't run into any health related troubles. My Doctor is fully supportive of this move as long as I keep my Glivec treatment under suprevision of a specialist. Here comes the tricky part, in Czech Republic you have to pay mandatory healthcare insurance (which works as % of your salary) and then you have basically free of charge unlimited healthcare. this means I don't have to pay anything on top of what normal healthy person pays, for my Glivec treatment.

Having done some research I found that in US the price of Glivec is crazy high. Way much more that what insurance company pays for it in Czech Republic...

My company is paying for their employees  private healthacre program (in Seattle US) but it is not sure how this situation can be handled. I understand this would be treated as some kind of precondition and would fall under some negotiation?. I have obviously shared this with my company now and they are very keen to support me in my move and making sure I get the right treatment.

With that I still wanted to come here and ask if anyone has this kind of experience, moving abroad with family, changing health insurance, Doctor etc. and ask for your experience or advise? I also wanted to ask if there is anyone diagnosed in US (Seattle area) and would be able to share some details about CML treatment in that area, how does the CML treatment work with private health insurance and what are the costs associated?

I really want to make sure that before my family makes this kind of decision we negotiate everything in the right way and don't run into any troubles which could have been avoided.

I know this is a long post and I apologize if this is a wrong place to come and ask this question. I do really appreciate any reply or feedback to my post

thank you very much

Zdenek

 PS: I have heard from many people "just stay home its easier" - if I do this I would feel like I have let my diagnosis to impact my life and I am not sure I want to do this..... 

 

 

Hi Zdenek, this is all great news for you! As a US citizen with CML, I have a suggestion for you. Seattle has a world-class cancer center, as you may already know. Here is a link: https://www.fredhutch.org/en.html ... It is affiliated with the University of Washington in Seattle, a great research university of the world. (I went to graduate school there a long time ago!)

If I were you, I would contact them and explain your situation. They would be able to answer your questions very well, and probably set you up with a hematologist. (You may even be a candidate for treatment free remission!) Also, not far away in Portland, Oregon, is Dr. Brian Druker at the Oregon Health Science University, one of the developers of Gleevec.

You could also contact the Human Resources department of the company you work for, say you are looking into employment there, and want to understand the health benefits of the company. At the moment it is illegal in the US to discriminate against someone with a medical condition in employment, but you wouldn't need to reveal your particular diagnosis. You didn't say the name of the company, but I am 99% certain they have a great health insurance program that would be very affordable for you, and there are no pre-existing condition exclusions allowed by law. (The only thing I don't know about is how it would affect you as a non-US citizen, but the HR department would have the answer to that.) 

I am no expert, but earlier in my career I worked in the employee benefits world, and I do follow the US health care debate closely. Others on this site will no doubt have good advice, too.

Good luck and I hope you are able to move to Seattle! It is a great city! 

Hi Justine,

thank you very much for your reply and for sharing these useful links! this is really great piece of information and great advise.

thanks again

Zdenek

Hi Zed,

Welcome to the forum.  I was also diagnosed about 6 years ago.  Do I understand correctly, that your company will be providing commercial health insurance while you are in the U.S.?

If so, you'll find that in the U.S. TKI medications are considered a "specialty medication" and they usually require preauthorization before being dispensed by a "specialty pharmacy".  The preauthorization is usually easily obtained when the CML diagnosis is provided to the insurance company.

The next piece is how much will the insurance policy pay for the medication and how much will you be expected to pay.  In my situation, when I began treatment, the insurance policy expected me to pay a $100 copay for each 30 day supply.  That was affordable for me.

After a few years the insurance policy changed and then I was expected to pay a 30% copay for each 30 day supply until I had paid $7,500 "out-of-pocket" maximum for the year.  With the cost of TKI medication being so high it only takes a few months to reach the maximum for the year.  I've never had to pay the full out of pocket cost because the TKI manufacturers have had generous copay assistance programs.  Unfortunately the copay assistance has become less with the introduction of generic imatinib.

My recommendation would be to find an insurance policy that has a defined maximum copay amount for each 30 day supply of TKI, for example $200.  Another smaller cost consideration is the price of the PCR testing and doctor visits.  Hopefully, as Justine said, your HR department will help you determine the cost of your CML treatment while in the U.S.

Welcome to the Pacific Northwest,

Kirk

Hello Kirk,

thank you very much for your message.  Yes correct as part of the company benefits, an employee is being offered one of the two different insurance plans. As far as i have learned both of these have  "out of the pocket" maximum cap per year in the range of what you are mentioning.

As Justine said, I believe now that it should not be an issue to get signed up up for one of these, even if i have known pre-condition, but this is something I will check through my company.

From what you are saying, it seem that these plans should have well described conditions for providing TKI meddicaments and that is something I will as well check through our HR department, which of these is eventually the better option and what are the copay amount per supply.

This was very helpful so thank you again for all the information!

Zdenek

Hi Zdenek, just one thought which may be useful from me. I don't know whether Glivec is off patent in your country, but I believe it is in USA, and therefore you may be able to get generic imatinib which has the same content as glivec, but is much cheaper. Glivec is made by Novartis; they also market a generic imatinib under the Sandoz brand. This is worth including in your investigations I think.

Hi Alistair,

thank you very much for your reply this is great info - I will check this option and make sure to discuss with my Doctor about potentially switching to generic version.

thanks!

 

Zdenek

 

 

If this helps, here is the amount my pharmacy is currently charging for a 30 day supply of 300mg generic imatinib - $5,654.48

Hi Zed , my husband and I also are from Europe living in the US, in California.

My husband was diagnosed a year ago last Sept. He has a PPO plan through his employer which involves him paying a monthly fee to cover all of the family. He is on Sprycel and so far we have not paid a penny for his medication as the pharmaceutical manufacturer covers the copay ( not sure how many years this will continue ). He does have to pay for a percentage of blood tests but once the deductible for the year is met ( I think in his case $300 a year) then all additional costs are ‘free’ to him for the rest of the year.

My advice would be to go for a plan that has a low annual cap. Always go to see ‘in network ‘ doctors, blood testing facilities etc because if you go out of your insurance network you can be hit with a bigger bill. 

My husband is having heart palpitations right now and the doctor wants him to wear a monitor for 2 weeks. That treatment isn’t in network so we may have to pay a higher cost for that but it will count towards his out of network cap which is $700 a year. 

You are also allowed to put money tax free into an FSA which you can put towards meeting your deductible costs. 

Seattle is beautiful. Best of luck with your move ! 

Louise 

 

 

 

 

 

Hi Louise,

thank you very much for your message - this is very helpful information esp. about "in network". I will make sure that the specialist I need operates in the network of the insurance plan!

wishing all good to you and your husband

thanks again

Zdenek