Move to a new country & reap the benefits of their medical system? #IVIG

[ChookityPop]

Move to a new country & reap the benefits of their medical system?

For free? Pay some OOP? Or pay everything OOP? #IVIG #Rituximab #Plasmapheresis

I have thought about this for a long time. I live in a Norway that for the life of them wont treat patients with immune mediated SFN, multiple autoimmune diseases like Sjogrens and so on with IVIG or similar treatments. If I wanted to pay for treatments OOP they wouldn't even let me.

I have just gotten my disability/social security in order so now I have the option to move to a new country and bring my disability payment. Norway have social security deals with most EU countries, USA, Canada, Australia, India, Great Britain and Northern-Ireland, Bosnia-Herzegovina, Chile, Israel, Montenegro, Serbia, Turkey and the province Quebec.

My dream would be to move somewhere where I can somehow get to reap the benefits of their medical system and get treatments like IVIG and other treatments I see patients on this forum get through their insurance. Is this possible?

Is this possible without having to pay ALL of it OOP? Is it possible if I pay some of it OOP? Is it possible for me to get insurance in a new country at this point? If so after paying for my insurance premiums and fulfilling my $6500 out of pocket maximum could I then get IVIG like some do in the US etc?

I wonder how I could go about finding out if this is even possible.

 

[BrightCandle]

What treatment do receive is incredibly specific to an individual doctor, there is no common treatment plan in any country that I know of. The NHS has the absense of treatment as its guidance replacing active torture and various other countries are moving towards doing nothing also but that is about it at a country policy level I don't know of any other doing anything else. There is no EU or USA drug approval for the treatment of ME/CFS. This does mean if you go to another country to receive treatment it will be to see a specific doctor who you have likely already discussed treatment with and have paid privately. That is as far as I know about it right now.

 

[Insomniac]

As someone who has lived in both the UK and Israel and has duel nationality in both countries, getting IVIG for Small fiber neuropathy is very hard in both countries. Israel currently has less long waiting lists for doctors than in Britain, both on the state and privately, but that doesn't say much. I think that will worsen once the 1990's generation of Russian immigrant doctors goes into retirement.

I don't know about the other countries mentioned, but I think BrightCandle is right. You need to find an specific doctor privately in one of those countries.

 

[Wood Guy]

It's a sad state we are in. I asked my PCP to consider LDN during a telephone consultation. She said she would consider it during our conversation. Nothing since then. Although I'm sure IVIG would help me, I cannot fathom how I could get it prescribed.

 

[heapsreal]

I wouldn't moved to Australia for any sort of cfsme treatment. Ivig has strict guidelines and lots of hurdles to jump over.
I don't know what sort of treatments they have for cfsme but I'd look at Thailand for cost and for how professional I've heard their health system is.
My only experience is dental work in Thailand, 6 crowns, fillings X-rays etc plus 16 nights in great accommodation with full breakfast included, a couple of day trips was thousands of dollars cheaper than if I stayed in Australia and just had the dental work.
I do need to research and contact their hospitals one day and check what's available. I know their pathology testing is really cheap. I'd like to know what sort of viral and immune testing they have, it can't be any worse than Australia that's for sure.

 

[Learner1]

@ChookityPop I hadn't heard that the US has any sort of reciprocal social benefits with any country. Health insurance is extremely expensive here, and healthcare is the most expensive in the world. We also discourage giving benefits to immigrants, although done of this is highly dependent on which state you settle in.

The US allows donors to be paid, which is why the gammaglobulins supplies are proportionally higher than most countries. There are patient assistance programs from various pharmaceutical companies which bring down the cost of the drugs, But for IV treatments, one must still pay for nursing and medical supplies for the infusions, which are not cheap.

It's a sad state we are in. I asked my PCP to consider LDN during a telephone consultation. She said she would consider it during our conversation. Nothing since then. Although I'm sure IVIG would help me, I cannot fathom how I could get it prescribed.

There is a great deal of good information on the use of LDN for a variety of conditions, including those, in ME/CFS. I have found it helpful, when my doctor is on the fence about prescribing something, to bring in medical journal articles backing up my request, and to remind the doctor about our previous conversation.

Gamma globulins can be delivered intravenously or subcutaneously, as IVIG or SCIG. There are risks involved, as well as the many benefits, and these treatments are not for everyone. There is a finite supply, as the product is made from donors blood, which goes through a process that takes up to a year to get to the delivered final product.

Each insurance company in the US, And each government's health program has criteria for what conditions, and what lab values qualify for this scarce and expensive treatment. You should be able to get the policy and see what it says. Immunodeficiency, certain autoimmune conditions, cancers, infections, etc are typically on the list. For each condition, there are criteria.

There are several of us who have qualified under Immunodeficiency, which typically requires total IGG to be below a certain threshold, multiple IGG subclasses to be low, as well as doing a vaccine challenge, where one is typically given a Pneumovax 23 shot, with labs before and a month after the shot, and if the after doesn't look like the vaccine worked, that is used as evidence that one has a defective immune system.

There are other patients here who have qualified due to autoimmune conditions. In addition to replenishing missing antibodies, IVIG can also cause a little war in there immune system that can neutralize bad antibodies, in layman's terms. There are specific criteria for which autoimmune conditions and under what conditions IVIG or SCIG are prescribed.

There is no substitute for becoming an educated patient and advocating for one's self.

 

[Treeman]

Hi, I'm in the UK. You have to be dying before they'll give you ivig.

I have panhypogammaglobulinamei and the recommended treatment is ivig. However, I don't have a bad enough level to qualify yet.

I challenged them on this as I'm house bound and spend the majority of the day in bed and can't support my family, still not enough.

There is a global shortage due to it been banned in the UK and I think Europe from donors 20 yrs ago because of mad cows disease. The UK reversed this ban last year so hopefully there will be more in the coming years.

However you'd find little success in the UK getting ivig at this time even if you're British.

 

[Learner1]

There is a global shortage due to it been banned in the UK and I think Europe from donors 20 yrs ago because of mad cows disease. The UK reversed this ban last year so hopefully there will be more in the coming years.

These products are typically screened through multiple processes to eliminate bad things. This article explains the factors influencing global gammaglobulin supply:

https://journals.lww.com/co-allergy...oglobulin_supply__steaming_towards_the.4.aspx