I dreaded signing up for the health insurance under Obamacare, because I figured it wouldn't cover the very expensive drug Xolair, that I'm getting for an off-label use.   The drug costs me almost $10,000/year.  I complained that with health insurance, people like me who have unusual problems fall through the cracks, and health insurance does everything it can to pay as little as it can and has caused me a lot  of headaches and stress in the past.  
I did sign up for health insurance, Blue Cross Blue Shield.  But my predictions have come true - and worse!  
The insurance company is indeed very unlikely to pay for Xolair for me - an allergist I'm seeing told me that it's very difficult to get Xolair covered even for on-label use.   He thought I shouldn't even bother trying.  
But ALSO, almost all my drugs are made for me at a compounding pharmacy, because I'm allergic to the usual fillers.  I get sick if I take regular drugs.  The pharmacy buys drugs in bulk powders from FDA-approved manufacturing facilities, and puts them in capsules for me, with a hypoallergenic filler.  
My drug expenses are almost all of my health care expenses!  Besides the Xolair, I pay roughly $6000/year for other drugs.  
When I was shopping around for health insurance, I called this insurance company 2 or 3 times, and got several representatives to find out if the insurance would cover my compounded drugs.  I told them I was allergic to the fillers, so the compounding pharmacy makes the drugs for me without the usual fillers.  
Each time I checked, the representative got back to me and told me the compounded drugs should be covered, that they would be insured as "specialty drugs".  
BUT, when I actually got some prescriptions refilled, I was told the insurance doesn't cover "bulk powders".  
So the insurance isn't covering almost all of my medical expenses, and this health insurance would only be an added financial burden for me!!!  At a time when I have horribly high medical expenses already, because of my allergy crisis.  
I asked my doctors to fill out the insurance company's "medical exception request forms", to try to get my compounded drugs covered.  However, a supervisor at BCBS told me she'd never seen that particular medical exception granted.   A pharmacist at one of the compounding pharmacies told me the insurance company would end up covering the compounded drugs, they just want to make it really hard for people by making them fill out the forms, making doctors write letters, etc.
BCBS did a bait and switch with me.  I sent a complaint letter to the state office that administers Obamacare.  
So BCBS is acting exactly like those horrible insurance companies from my past - doing everything they can to wiggle out of paying claims.  
The other Obamacare options in my area are no better about covering compounded medications, according to the pharmacists.  
I may try to start a class-action lawsuit, because this is completely unfair!  I cannot be legally required to buy insurance that doesn't help with my medical expenses.

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Comment by Luara on March 16, 2014 at 8:14am

Personally I don't see how you can be legally required to buy health insurance in the first place.

Since they are now forcing people to buy health insurance, it had better take care of people's actual health needs!   One huge problem with health insurance is that the insurance company tries to make decisions about what's "reasonable" medical care. This is how health insurance companies are used to operating.  They try to exclude care that tends to be expensive. 

But this is NOT ACCEPTABLE if people are forced to buy the insurance!  They have to honor the decisions that are made by the doctor who knows the patient. 

And I wouldn't mind having catastrophic health insurance.  If I get hit by an uninsured motorist, it would be nice to have insurance covering hospitalization. 

But courtesy of Obamacare, I can't buy catastrophic health insurance!  I'm too old to buy it. 

Their excuse for not covering compounded drugs made from bulk powders is that they aren't FDA approved.  They are made using FDA approved bulk powders but the final formulation hasn't gone through the FDA approval process. 

Sometimes non-compounding pharmacists argue that the fillers and excipients are important.  But for me, the drugs compounded without the usual fillers have worked fine.  The antibiotics cure my bladder infections.  The compounded thyroid hormone is effective at normalizing my thyroid tests.  And so on. 

There are people with severe milk allergies who can't take most standard drugs, because most of those drugs have lactose in them.  So I don't know how an insurance company can possibly get away with refusing claims for compounded drugs. 

When a doctor prescribes a compounded medication for me, there's no excuse for the insurance refusing to pay for it. 

The insurance company should also cover my Xolair.  The two allergists I've seen have both been willing to prescribe Xolair for me.  They realize that my allergy situation is severe enough that I need to do everything I can to recover.  I'm taking all possible medications and doing everything I can to get over my problems. 

I've been willing to pay for the Xolair myself, and the insurance company won't.  I'm willing to do more for my health than the insurance company is willing to do.  That's the basic problem.  The insurance company wants to pay as little as possible.  I'll pay what is necessary. 

And forced health insurance needs to pay for necessary health care. 

The idea of paying another monthly premium to BCBS really galls me.  I think what I'll do is let the policy lapse and go through various appeals of their decision re: compounding.  It's possible to get an external appeal also, to some government agency.  The federal government has oversight over the Obamacare insurance companies.  If that fails, perhaps I could start a class action. 

The insurance company's policy regarding drugs made using bulk powders needs to change, so that they cover compounded medications without a big hassle.  Sick people can't necessarily deal with big hassles.

This shit of forcing people to go through a "medical exception" process, making them go through appeals etc., is abusive and it has to stop.

I was willing to buy the Obamacare insurance on the understanding that it would cover my compounded drugs.  But if it doesn't, the fine for not buying it wouldn't be high.  Without insurance, my taxable income for 2014 isn't going to be very much, because of all my medical expenses.  And maybe I could get out of the penalty anyway. 

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