Insurance co excruciatingly frustrating

So, for the past appx. two weeks I had been feeling SO much better--anxiety and depression that had me often wishing for death since August had almost completely subsided. For three nights in a row, I'd slept through the night--seven straight hours on Tues. night--after dealing with insomnia since August as well. I finished up one month of malarone a week ago today. Paid for nine pills myself ($57!) to get me through an extra day and a half. Have been without Malarone since April 11.

My frigging insurance company requires pre-authorization for every month of Malarone. When I checked with them 3 weeks ago about what they'd require for a refill (I wanted to get things sorted out ahead of time to avoid a gap in treatment--HA!), they assured me they'd just need the authorization filled out again with a note that treatment was progressing well. After several phone calls to the doc's office, which is 1.5 hours away from me, the authorization form was finally submitted after a week. The darned insurance company requires 48 hours, business hours only counted, to process a request. Yesterday, I find out they aren't accepting the pre-authorization without documentation that extended treatment with Malarone is required for my condition.

Spoke with two different insurance reps to find out what the hell, exactly, they WANT. They couldn't give me any more info. They won't allow you to talk to the actual pharmacist who processes the authorizations. They DID say that the darned 48-hour clock starts again when they receive supporting documentation, so I'm not gonna get any meds until AT LEAST early next week now! I searched online for two different articles supporting extended treatment of Babesia with malarone (I have several positive blood tests for Babs). I've emailed the articles to the doc. When they open (it's 5 a.m. now--the insomnia is back), I'll call and BEG the doc's office to fax these articles to the insurance co. They may or may not get around to it--they are understaffed, overworked, and not very organized. They aren't open on Friday, so I've got a one day window to get them to act.

I believe I'm backsliding after FINALLY making progress--after MONTHS of HELL and years of intermittent symptoms before that. I need this Malarone. This is infuriating!

So here's where I need help:

1. Any suggestions about how to light a fire under the insurance co's butt? Should I contact Richard Blumenthal's office (I live in CT)? The insurance commissioner?

2. Can anyone think of a good article from a reputable source that recommends treatment of several months' duration for long-term Babesia? The articles I found were wish-washy, and I believe, from what I can tell from the insurance reps, that this is the type of supporting documentation they are looking for right now.

I agree--they SHOULD be made to feel some pain when their decisions cause us harm. Thanks for the suggestion re Burluscano. Will check it out. I searched for an hour yesterday and could only find a couple of wishy-washy sources. Seems the entire Lyme community understands that after long-term Babs infection, at least two months, and usually more, of treatment will be necessary. So where does this knowledge COME from?

I would say be as nasty as you have to be.

Say that you filed the paperwork as required by them so they have no reason to deny it. I might even suggest you say that you are sliding backward without the necessary medicine and you might have to go to the ER if it isn't filled immediately. When in doubt ask for a supervisor, you will be on hold for awhile, when that doesn't work keep going up the chain. Threat legal action if you have to.

I'm so sorry you are going through this. :(

**Edit** Alright so I looked into it a little bit. An insurance company Can NOT DENY MEDICATION IF IT IS PRESCRIBED** They can substitute with a generic alternative at their discretion but regardless I would call right now, go above the chain of command, disregard the 48 hr notice especially since it has been longer, tell them you don't care about the 48 hrs because your meds have lapsed and it could be putting your health in danger etc. etc.

Let the insurance company know that if you don't have the prescription filled/approval paid for this afternoon that you will report them to the Department of Labor’s Occupational Safety and Health Administration. Bluff if you have to, tell them you have the phone number and you are ready to call.

What Do I Do if My Employer or Insurance Company is Not Following the ACA?

The Affordable Care Act contains many requirements for insurance companies and employers.

If your employer or insurance company is not following the ACA, you can report them to the Department of Labor’s Occupational Safety and Health Administration. A fact sheet explaining how to report ACA violations can be found here: http://www.osha.gov/Publications/whistleblower/OSHAFS-3641.pdf

The ACA protects people who report violations. This is called whistleblower protections. This means that insurance companies and employers cannot stop a person’s health insurance, fire a person, or retaliate against people who report violations.

To view the Department of Labor’s interim rule about reporting violations, go to: http://www.osha.gov/pls/oshaweb/owadisp.show_document?p_table=FEDERAL_REGISTER&p_id=23585

Opugirl--I wish I'd seen your message earlier. Here's what I ended up doing. Spoke with the doc's office at 9:30 a.m. Ended up emailing over a copy of a Burrascano article (good thinking, Sarah) that said for long-term Babs, 4 months is the minimum treatment period with Malarone and Azith (I'm also taking Azith and Rifampin). Begged the receptionist to give this to the doc and ask him to fax it over to the insurance co. with my latest positive titer for Babs. She gave me the runaround about how they're busy, she'll try to get to it, etc. They're closed tomorrow, as is the insurance co., for Good Friday. So I figured I was facing until AT LEAST Wed. of next week until I get my Malarone.

A friend referred me to goodrx.com, which had a coupon for 60 tablets of malarone for $155 at CVS (this would last 10 days at my dosage). This translates to $450 a month, give or take a few bucks, which is significantly less than retail prices I'd been quoted. (The 60 pills at Walmart, where I got my first 9, would have cost me $380!) So I called, had my existing rx transferred from Walmart to CVS, then used the coupon to pick up a 10 day supply. More than I can afford, but I don't want to backslide.

Next week, I contact the doc and insurance co again, using the strong-arm tactics suggested by Opugirl. And Dannarhan, you're correct--in CT it is against the law for insurance co's to deny coverage of Lyme drugs, which I believe pertains to co-infections as well. So they've simply adopted the tactic of delaying for as long as possible, instead. I bet a lot of people simply give up and pay retail out of desperation. It's disgusting. In my opinion, I should be eligible for reimbursement of the $57 I was forced to pay for the original 9 pills, as well as the $155 I just shelled out for the 60. I bet that if I pushed it hard enough, I'd get this money back. I am FURIOUS with the insurance company right now!