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Welcome to Aetna Health Insurance Hell

ArguingOn 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?”

Pulmozyme - Dornase Alpha“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 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.

Aetna - Healthy? I don't think so!



  1. Insurance companies suck. I necessary evil.

  2. Insurance companies make my eyes bleed. They made our lives a living hell and now they’re doing the same to you. That’s about as much as I can say about them without having an aneurysm. 🙁

    • I remember Mom sitting at the table with the cordless phone with her legal pad and pen and repeatedly asking people to repeat their name so she could record it.

      Want the name and ID # of the last person? We’ve got it.

  3. My sister has CF and is having the same problem.  Now they don’t want to cover her Pulmozyme at all.  It’ll cost her the same as her yearly salary to pay for it herself.  At this rate, she may as well quit her job, lose her insurance and have the government pay for it.  How does that make any sense?
    She’s working with a social worker at her doctor’s office to get it straightened out, but it’s just ridiculous.

    • It doesn’t. I’m a highly productive member of society – hitting us with this with already mortgage-level expenses and now doubling that to be double our mortgage payment is unconscionable and we will fight them with every weapon we have at our disposal.

      They used a cattle prod on the wrong pit bull. I may be a little guy, but no one would want to mess with my wife, my health, or my freedoms. Likewise, when people mess with my health, Beautiful turns into a tiger with cubs.

  4. This is like having a friendly debate on a lunch out with a lawyer. practically useless.

  5. Sucks to hear I’m not the only one that has had problems with Pulmozyme coverage recently.  Last year my three month supply co-pay went from $60 to $400.  

  6. Brittney Riley says

    I’ve been waiting for Aetna to try and deny my IVIG infusions because of cost (5,000+ a month), espcially now that I met my out of pocket max. So far they have been pretty good, but as you have shown us things can change right under our noses and they aren’t honest about them.

    • Indeed, they can. According to the FL Office of Insurance Regulation, they broke the law by not giving me a 90-day notice and other plans to choose from by just telling me I was moving to a new plan with no changes to the benefits. They will have 20 days to respond.

  7. I don’t know why any of you are surprised… you forget that Aetna, like most insurance plans, is a business. They exist to make a profit. They do not exist to make you happy, or even — heaven forbid — healthy. If they can make a buck by denying you coverage, or making you pay more for coverage, then they will. It’s called profitability, and they excel at it.

    That being said, Aetna is one of the worst offenders. I needed an X-Ray for a routine procedure, and it was denied because, according to Aetna, it was not a “medical necessity.” I’m thankful that my employer’s annual enrollment was coming up so that I could dump Aetna for Blue Cross, but my point remains that Aetna exists to make money. And they do that by charging you more money than they spend. When you consider that they have to pay not only covered medical expenses, but also the salaries of all those nice people who answer the phones to tell you that your procedure is either not covered or is going to cost a bizillion dollars, you will begin to understand the flaw in the system.

    As I said, all for-profit insurance companies operate on the same principle of charging you more money than you consume in services, but Aetna is, in my experience, the worst.

    Aetna is the case study for why health insurance reform was needed. They (not the government) are the bureaucrats who are getting in the way of you and your health care, and they really should be held accountable.

    If Obamacare is repealed, you can expect more of the same treatment from Aetna. After all, who would be there to stop them?

    • Obamacare won’t stop any of these things. It does not dictate what tier companies place drugs in or what they can charge individual policies or how much copays will be… shall I go on?

      What it will do is tax people for not having insurance, overburden what family practice doctors remain (ask your doctor how they feel about this), and provide thousands of new IRS jobs to hunt down everyone without proof of insurance.