obtaining IVIG/SCIG

[brooke]

My doctor wants to prescribe IVIG, but it's very expensive and almost impossible to get covered by insurance. How can I compare prices in different countries, for example, Mexico, UK, Europe? Does anyone pay cash for IVIG or SCIG in any of these countries? How do you get it prescribed and how much does it cost?

 

[Moof]

I haven't heard about anyone receiving this treatment in the UK. However, far fewer people here use private medicine than in the US, as most of us are covered by the NHS – we just aren't used to budgeting for healthcare services, so seeing the real cost of treatments comes as a huge shock! One of the difficulties is that it can be hard to access private clinicians without a referral from an NHS GP, and it'd be a tough job finding one who'd make a referral for what they'd consider a speculative treatment (we're somewhat behind the US in terms of experimentation). It's not impossible that you could just book yourself into a private clinic, but it's frustratingly difficult to find these things out.

 

[Gingergrrl]

How can I compare prices in different countries, for example, Mexico, UK, Europe?

I have done two years of IVIG in the U.S. but am not sure from your post if you are only trying to compare prices in Mexico, the UK and Europe? I would assume it is significantly cheaper anywhere outside of the U.S. but don't know any specifics.

Does anyone pay cash for IVIG or SCIG in any of these countries?

I do not know of anyone who has paid cash for IVIG and it is prohibitively expensive. I do know of a few people who have paid cash for SCIG, which is much cheaper b/c it is (usually) a much smaller dose and some people can do it themselves without even an infusion nurse (or going to an infusion center like I do). I have never done SCIG (only IVIG).

How do you get it prescribed and how much does it cost?

I got high dose IVIG prescribed by my doctors for autoimmunity although at this point, I cannot even calculate the cost to my insurance companies b/c the entire two years have been denied and are now being re-billed as part of an appeal by the hospital/ infusion center. Mine turned out to be a huge mess (insurance-wise) but treatment-wise, it was the best decision that I have ever made and was the beginning of the turning point in my illness.

 

[ryan31337]

IVIG is available on the NHS but unless anything has changed recently (unlikely) it won't be given off-label for conditions like POTS & CFS.

 

[Gingergrrl]

we just aren't used to budgeting for healthcare services

I don't want to get off-topic from the OP's questions re: IVIG but am just fascinated by the concept of not having to budget for healthcare! I literally cannot imagine what this would be like since we have to pay monthly insurance premiums, deductibles, co-pays for doctor visits, blood tests and treatments, very expensive medications, etc. Not budgeting for healthcare would be like not budgeting for groceries/food (and I actually pay far more for healthcare than I do for food LOL)! Just a random thought and no need for replies.

 

[Moof]

It's a completely different culture, isn't it. We do pay for our healthcare, of course, but it's through our taxes; how much you pay into the system depends on how much income you have. We probably pay more in income tax and national insurance than in the US (they always get you one way or another!)

 

[Vineyard1]

I have received IVIG for 2.5 years for low Total IgG and IgG1. After insurance, I am responsible for up to the catastrophic limit each year which is $5,000 out of pocket. It is a heck of a lot of money but without IVIG I would be bedridden versus primarily homebound.

 

[JES]

In Europe, at least in my country, cost per infusion is around 4000€. Public healthcare will pay for IVIG if it's officially indicated treatment like for life-threatening immune deficiencies, otherwise it's out of luck usually.

 

[Malea]

In Germany the price is 900+ Euro (around 1050 USD) for 10g of Ivig (Kiovig, Gamunex).

So for an fictive single autoimmune treatment of 90g the price would be around 9000 Euro (~10500USD).

Maybe a way to find out the prices in different countries is to search for an Ivig „brand name“ in an online pharmacy of a specific country.

 

[Gingergrrl]

It's interesting to read about the cost of IVIG in different countries. Mine was a lot more expensive than what was mentioned in posts above b/c I think the above posts were purely quoting the cost of the IVIG itself and not including the fees charged by the hospital and infusion center.

I was not able to do IVIG at home with a home health nurse (as many people in the U.S. do) b/c I was considered to be too high of an anaphylaxis risk when I started. I had all two years of IVIG at a phenomenal infusion center, and even though they are "in network" with my insurance, they are extremely expensive for what they billed to my insurance company for each day of IVIG. Most of my IVIG cycles were 3-days (so my insurance was charged for three days of fees). My primary insurance ended up denying the entire thing and it is now being re-billed and I've been dealing with this situation all week (but I am still hoping it will turn out okay in the end).

This is not to deter anyone, and it was absolutely 100% worth the effort, but it is an insurance battle (at least in my case) that took up an enormous amount of time and energy on an ongoing basis.