Hey all,
Not sure if anyone esle thinks about this but I have been looking into the insurance end of this problem and I see a huge problem. You get a diagnosis and bam, your black balled by insurance companies. That just isn't right. I understand but it still isn't ethical.
Right now I just have a diagnosis of Uctd. I have a good feeling my problem be Sjogrens, all the symptoms are lined up and I have a guess that it might be LUPUS too. but with all this insurance nonsense, maybe it's better they and I don't know and just roll with it. as long as I am seeing a doc to monitor me and treat me for the Uctd which is the same meds for the most part as treatment for SRS, why give the ammo.
What would you do? Any benefit to having a Diagnosis name if the treatment doesn't change?
Hi Dave,
I have Hashimoto's, fibro, and have been diagnosed with SICCA not SJS. When all of this first started, I was worried about being sero negative, believed that if I didn't have "the label" that I would not be taken seriously by others, the medical field, etc. Well, I'm still sero negative, but as long as I'm being treated for my symptoms, they can call it anything they want.
I know that this view is a bit different, but about insurance, like you, I already have an "AI" label, so what is one or two more? They've already raised my rates (this was a large raise across the board for the organization I work for), so the only thing I can do is to keep paying it.
Take care -
Patze
Hi Dave :)
In the UK our system's different but I hear where you're coming from. I was really taken aback how much it cost for me to get travel insurance to visit my son in the States for 12 days. Although I have the dxs, this has never caused me to have either a day off work or a stay in hosptial. I'm one of the lucky ones but it made no difference to the hike in travel insurance cost.
Take care - Scottie :)
Hi Dave,
You are right! Once you are labeled with a certain diagnosis, health insurance can be affected (increase in price or even denied). This is also true when you take certain medications that may indicate something is going on. I was denied once a while ago for some additional insurance through our employer due to the fact that I take Lexapro (an anti depressant). I guess they figure that it you take a medication like this you must be a "little crazy" and who knows what you will do! I think they are a lot crazy for thinking like that in this day and age....but that was the way it was!
It's not right...but its how they run the business of insuring people!
Dave, Many years ago I found out that I was refused insurance coverage because I was "uninsurable due to so many diagnoses---and not a dang one was autoimmune. This was back in the 80's or so and all the things I had gone to the doc for had ended up being about 10 diagnoses one of which was cysts on ovaries!!!! A very common thing indeed.
Anyway, I called the insurance company and had a good argument with them. Told them that what they wanted was for me to promise them that I would not get sick in order to be insured. So why would I need insurance then!!!!
Soo, unless I was covered under hubbies policys at work I had to pay for my own. In my state we have an "insurance pool" that charges higher rates for insurance but does give you the chance to have it. The insurance companies have to take turns by bidding for the business. Makes it more fair I guess.
Sooo, no matter what you do you are going to get caught eventually. If you don't have a diagnosis but are getting treatment for many symptoms the insurance company will find on audit that you are high risk. We just all do the best we can. Good luck. Irish ;D
One of the nice things about being insured through the federal government (just like your Senators and Reps) you can't be denied insurance and our rates have not gone up with the various maladies that my wife and I have. We can even change insurance companies within the system, without fear of being denied coverage, on the basis of a preexisting condition.
Apparently the federal government doesn't feel that the rest of you deserve the same treatment, too bad.
I also found out that trying to get any type of life insurance after a confirmed SLE/SJS diagnosis is a no go.So if you are in diagnosis limbo..get your ducks in a row there too.
The only policy I qualify now(that I have found so far)is
50,000 coverage
2yr wait after diagnosis with no health changes(worsening or hospitilization)
179.00 a month after the wait period
first 2 yrs after policy issues if you pass away you only get back the premium part you paid in
The only time having the actual diagnosis would benefit(as long as you are getting treatment)is disability..you have to have a confirmed diagnosis there..but if you arent going for that I personally wouldnt worry about it....some people require a "label" to ease their fears.I just want treatment and I am all good..unfortunately for me...I got the label really quick(in AI diagnosing world and didnt have enough time to get the insurance thing settled beforehand >:( )
Also, if you are in need of life insurance and have no diagnosis, etc. this would be the time to get some. Also, make sure that you get a policy with guananteed insurability so that if you do, in fact, get diagnosed you are all set with the life insurance department.Irish ;D
Apart from the insurance angle (we dont have to have insurance in UK) I just don't need to have more tests just to `prove' to the non believers that I have SS! Why put myself up for biopsies blood work scans ect - the outcome is all the same - there is no cure - we just have to live with it and manage our problems best we can. I don't need a certificate to `prove' I have it - I wish I didn't - am not in denial - but just don't see the point in wasting my life in hospitals and Dr's surgeries when half don't believe you and they can do nothing for us anyway. I have found more help on this forum!
Issey
Hi All
As far as the travel insurance from the UK goes, I have an annual policy with Tesco and they do not add anything for SJS.
Life insurance, just applied for more life insurance as forced to cash in endowment when it lost 25% of its value in 6 months, still waiting to hear but they seemed more bothered about hubbies migraines!
Glad we do not have to have health insurance it all sounds great until you get sick.
Heather