Welcome to Aetna Health Insurance Hell

On December 17th – a Saturday – I received an e-mail from Aetna Health Insurance (something that always makes this guy with cystic fibrosis nervous) saying that there was a new communication for me. I clicked the link, logged in to find my “communication” was a plain and simple Certificate of Continuous Coverage with an ending date of 12/31/2011. Nice. A CFer with no coverage. Again.

Monday afternoon (because I would swear they were swamped at 9am), I called for an explanation of such a mysterious message.

“Oh, we’re just giving everyone in Florida with your plan a new ID card. Everyone’s getting them.”

Oh, okay. We went on with our day, our month, our year, and even our new year.

Then we got a call from Dr. Tabor‘s office about my visit asking if I had new insurance. “Sure, it’s the same plan, but here’s the number.” I went to that appointment and strangely, for the first office visit of the year, my co-pay at the desk was only $35. Odd! We were fully expecting to use the debit card for our medical savings for the annual deductibles. No bill in the mail, and it’s in the system as paid.

Then I went to clinic. I’d already given them the number because they, likewise, called to inquire as to why my paperwork wasn’t coming up correctly. I gave her the card at the desk (same woman as for 3 years) and she asked if I had a pre-authorization for the visit. I asked, “have I ever needed one? I’ve never requested one, so if it’s happened it’s been behind the scenes. Look, the card says ‘no referral necessary’ right on the front.”

Apparently that wasn’t the case, but we managed to have it sorted out by the time I was through triage and into the PFT box because they drew blood and I blew CO2.

The calls begin

Then we tried to order Pulmozyme. We were interested to know the co-pay amount because when we ordered on 12/28, it had dropped from $50 down to a $35 co-pay. We were delighted. So, Beautiful goes to make the call in her usual way and was told that it was going to be $919.

“Excuse me?” I heard her say at her desk next to me. “Nine hundred and nineteen dollars? Um, why?”

“It’s an injectable” came the reply. That was the reply and the argument for the next 2 weeks. I was holding the foil package in my hand reading to a manager with the individual health plans “Dornase Alfa – Inhalation Solution – 1mg/mL, 2.5mL ampules” The logo for Pulmozyme has “inhalation solution” in it. See?

The next day, I got a reasonably intelligent person on the phone to whom I conveyed this info again and read from the pulmozyme.com website:

Before taking or administering Pulmozyme, it is important to receive training from your CF healthcare team. You will need the following items for Pulmozyme administration:

• One ampule of Pulmozyme
• One nebulizer approved for use with Pulmozyme

She got on the phone with Aetna Specialty Pharmacy and said it was authorized and it was going to be $6.31. Yes, six bucks.

“Specialty drug”

Today, Beautiful gets on the phone to order it for real and is once again told it is $919. She called Aetna again (customer “service”) and was again told it was an injectable. She was also able to convince them (this time by comparing the exact dosage) that it was not an injectable. I know she was also able to get them to send me a benefits package for my new plan because I had yet to receive one reflecting my new ID card.

I’m not sure how that call ended because once that happened, I thought it was under control and I turned back to my work. I don’t think it ended well. Somewhere along the way she was told that it wasn’t covered because it’s a “specialty drug.” A new story, eh?

Either she called back again or ended up with this last rep I’m about to describe.

The last person she got was very nice – a manager way up – who again explained that Pulmozyme is now a “specialty drug” and we are responsible for a 20% co-pay. “Yes, we know we’re being told that, but this indicates that our plan did indeed change because this is now not covered,” because they have insisted since December that nothing has changed. Obviously something changed.

Now get this: she conferences herself, Beautiful, and the pharmacy and identifies herself as quite up according to the ID number she provided (an “A” instead of a lowly “N”) and said that we’d like to look at “the changes our plan made to a med we’ve been trying to order.” I snapped my head around to Beautiful and mouthed “CHANGES????!!!” Anyway, we got the same $919 and then tried Colistin and that came back as $500.

Before hanging up, I asked to speak to her on the note that it appeared from the last 2 people that we had lost our “grandfathered” status with this change. We got notice of rates increasing with a warning that if we chose to go to a less expensive plan with higher deductibles, we’d “be subject to all of the effects of the healthcare reform act.” By warning in such a clearly chosen way, they indicated that what we have now is special and comes at a premium, um, premium.

Now we were told that we lost our “grandfathered” status with this change.

Without any choice of plan alternatives.

Without a 30 day notice (which I remember reading in the plan benefits, so I’m going to dig that out).

What happened last time

The last time I stopped colistin was to do a drug trial (in that linked post’s image, it’s the last 2 yellow points on the right). I got a placebo AND my FEV1 dropped to 28%. If it stayed there after 2 weeks on IVs, they were going to list me for a double-lung transplant. Because I stopped ONE medication. That was the LAST time I was on IVs for a lung infection.

The last time I stopped Pulmozyme it was because we argued with Aetna Specialty Pharmacy and Aetna themselves for 2 weeks to get a 3-month mail-order supply. They wouldn’t budge. By the time I got a new supply, my cough had increased and I’d dropped from 135lbs to 125lbs. Weight is directly correlated to lung function.

We are appealing the tier level, but she said that insurance doesn’t regulate tier levels of these, but perhaps I should now treat her like I would treat a credit card collector – they’re lying if their lips are moving, so get it in writing.

She offered that we get it directly from Genetech – they can’t sell directly to the consumer, only to a doctor or pharmacy.

The plan

I’m going to call her tomorrow at 10am and calmly explain that I have been IV-free for the last 23 months and 10 days. This is the longest I have ever been off of IVs and it is because I have been on FIVE nebulizers every day and you are forcing my hand through sheer finances to remove two-fifths of this working formula. It will not be long before old patterns appear, such as 2006 when I was on IVs 4 or 5 times.

Let her do the math in her head a little while… then mention lung transplantation… and the $250k bill that brings along with the much more expensive meds that I see are covered on the Pharmacy Benefit Plan.

“Unless, of course, you’re trying to kill me because my Aetna Life Insurance policy is only for $140,000 – one-time payout…

Is that it, the Company did the math on my being dead or alive?”

I smell a conflict of interest.