Dear All

I'm experiencing a very particular situation, not sure if anyone would have such experience.

My Child was born in Switzerland with a brith defect, which was successfully repaired and fully covered by IV

some years later the Child start to get sick and require hospitalization, sometimes intensive care and in all those times it was covered by the normal health insurance.

Turn out that I'm interested parent investigated and found the kids born with the birth defect my child had when born, usually also have another defect that would explain the regular sickness and hospitalization. I proposed it to doctors, which not totally believe on this possibility but agree to investigate for other issues. Turn out my Child, unfortunately really had such condition I suspected in a quite severe way.

Doctors then suggest a "conservative" approach to wait and see if the issue solves by itself, what fits to the traditional medical literature.

But my researches found out that a very well regarded Children Hospital in the USA have a different approach to this issue, and based on research disbelieves that the issue will solve when kids grows but at best they will learn to live with it in a limited way, and in order to solve it they have developed a treatment which is not available in Switzerland and possibly only in very few countries in the world.

- As this is a birth defect, and my child was born here in Switzerland, I assume this is and must be covered by the IV, right?
- I'm looking forward to get my child in this Hospital in the USA for a second opinion and eventually treat her there, how could we get the IV involved on it, if the Swiss doctors prefere to wait (Wait means new Hospitalizations in the future, we had 3 last year and already 2 this year, the last and current one is taking already 4 weeks and will take more even)

Any experience on a similar case? How could I deal with that?

Cheers
Mario

"Planned treatment abroad
In certain cases where a treatment is not available in Switzerland or waiting periods are too long, the costs may be reimbursed for these particular treatments abroad. In such cases, the policyholder’s attending physician must submit an application (explaining the reasons) to the health insurer’s independent medical adviser. In consultation with the latter, the insurer will decide whether the costs of the treatment abroad can be reimbursed (see the conditions specified in the information letter dated 8 April 2008 on medical treatment abroad; available in French/German)."

https://www.bag.admin.ch/bag/en/home...r-Schweiz.html

I think your first step is to see if this 2nd illness/condition is covered by IV/AI or not. The law or the regulation lists them. If in doubt the treating Dr probably can help you get through if not clear. Then you would need to see what IV says about the cost or treatment. In my experience, a good Dr on your side to work with IV would be key.

Alternatively if not covered by IV, you would need to see with regular health insurance as noted above

My guess is that your research will be insufficient to have IV or health insurance pay. You'll need the support of a Swiss doctor.

Msolis, I am so sorry you and your child are going through this.

I agree with the other posters, you will need a Swiss doctor - preferably a specialist in the area of your child's disease - to support your application to your insurance/IV.

On another note - do you know if this therapy is available in any country other than the US? You might ask the lead doctor at the US hospital you have found if he or she can recommend colleagues in Europe, for instance.

I ask because, as you likely know, hospitalisation is insanely expensive in the US. You'll need to be prepared for your insurance/IV to baulk at your proposal from a cost standpoint alone.

If you can find similar treatment elsewhere in Europe you might have a better chance. Please note I said 'might'. I know of a few people who tried to get treatment in Germany that was not available in Switzerland covered under their insurance here but were denied. Your case may be different, though.

The well-known hospitals in the US are used to dealing with international patients. Get a quote from them as to the cost of this treatment.

Be aware, though, that often an international patient needs to pay out of pocket first, then seek reimbursement from the home country insurance, as the hospital does not want to be put at risk of not getting paid.

To give you an idea of how insanely expensive treatment as a self-pay, non-US patient can be:

Some years ago I considered having surgery done in the US rather than here. The quote for the surgery alone was ca 100K. I bit the bullet and had the surgery done here. The cost billed to my insurance was 4-6K.

Now it should be noted that that 100K was 'list price' for a self-paying international patient. US patients covered by US insurance would pay less than that because insurers negotiate costs with the hospitals. Whether Swiss insurance or IV would be in a position to negotiate is something you'd need to find out.

IIRC, I think there might be a limit to how much my Swiss insurance would cover for an emergency in the US - something like twice the cost of treatment in Switzerland. Which wouldn't get you very far with typical US prices.

Some of the well-known children's hospitals in the US (St Jude's, Shriner's for instance) work with charities to help with costs for disadvantaged patients. However, coming from Switzerland I would be surprised if you would be eligible for that kind of help. Worth looking into, though.

There are also charities that help with family accommodation for very ill children being treated at centre-of-excellence hospitals far from their homes. (Ronald McDonald House, for instance.) But again, coming from Switzerland you might not be eligible.

Bottom line, you have a lot of research and leg work to do. But having all your ducks in a row cost-wise might help your argument with your Swiss insurance/IV.

Wishing you and your little one all the very best.

Yes, meloncollie is right: find out whether it can be done in any other country, besides the US.

Before that, be completely certain that it cannot be done in Switzerland. Just because your child's current doctor(s) don't offer it or don't deem it necessary, that doesn't mean that all doctors here see it that way. You might consider trying in a different canton, and especially in a different language area of Switzerland.

I agree with all those who say that you are likely to need at least one Swiss doctor and preferably a second on your side, who is willing to examine the child and explain, in a detailed medical report,

• why this procedure would be beneficial,
• why it is superior to the route that is currently usually taken in such cases in Switzerland,
• and why it would be harmful to deny the child access to it.

It might also be good for such a doctor(s) to have seen the child at least twice, over time, so that they can each write a second report, later, stating what has changed in the child since the first assessment, and why the doctor is still (or more strongly) of the opinion that this special treatment is the right way to go.

The Swiss medical insurance disguishes between

• an emergency abroad, which they generally cover, quite well, and
• a deliberate journey abroad with the express purpose of seeking treatment.

Therefore, OP, make sure that, in your reading, you don't trip up on the rules of emergency cover - which don't apply to your case.



The Swiss disability insurance, (and the Swiss medical insurance, too, wherever it does make exceptions to cover treatment for which a patient specifically travelled abroad), focuses on the usefulnes of any treatment or procedure, which is measures by whether or not it will increase the likelihood of the person needing fewer benefits, thereafter.

Therefore, it might be an argument in favour of the treatment if you can demonstrate - with Swiss doctor(s) report(s) supported by medical journal articles and success rate statistics - that if your child has this special treatment, the child (and the adult they will become) will therafter, as a direct or indirect effect of having had that treatment, cost the IV less. "Costing less" would include such aspects as

• a reduction of any treatments or medical procedures that the child now has to get,
• a greater degree of autonomy so that the child no longer needs x or y kind of help (by a person, or with the help of equipment) in everyday life,
• a higher potential for such a lesser degree of helplessness or care to be reached after some learning/rehab process which will only become possible after this special treatment,
• a higher potential that the child will be able to be educated, and thereby
• a higher potential for the adult they will become to earn a living.