Dear Aetna, you’re still horrible

I just got off the phone with Aetna Specialty Pharmacy and I’ve determined that sometimes incompetence (or ignorance) is like an onion.

It’s also relevant to point out that when you mention Aetna on Twitter you get an auto response from their “social media team” to contact them at this email and blah blah blah. I finally said fuck it and responded the last time. They didn’t resolve anything but it was an interesting exercise? Or something. Anyways. After this fiasco with Aetna to get my tecfidera filled, I decided to email that same social media email again. I’m not holding my breath. They should fucking give me refunds. (By the way, the email in attachments they send back to you can only be opened in Microsoft IE or Edge but they don’t tell you that.)

I’m going to share the email, because it’s the Internet and nothing ever goes away.

It’s taken me two weeks to get my tecfidera scheduled for delivery and that is only because I’ve been proactive. A less educated patient or customer would have possibly run out of their medicine.

My doctor’s office did prior authorization first. I think I received the notice around 4/22. Then the prior authorization approval that I got in the mail told me I could get the tecfidera filled at *any* pharmacy. It said any. So I called Aetna RX Home delivery and they set it up. Cigna did tecfidera under the speciality pharmacy but I figured Aetna must be different since they are different with so many other things.

Then I heard nothing. I contacted my doctor’s office about the prescription at least twice between then and now (5/8). Today my doctor’s office called Aetna again and thankfully she gave me the number she called. She said the prescription should be ready but she had no idea if I was supposed to call.

After calling Aetna Specialty pharmacy I learned this:

1. Aetna RX home delivery processed the order 4/27.
2. Then it was transferred to Aetna Speciality 4/28.
3. Aetna Speciality started processing it 5/3 but the prior authorization wasn’t found until 5/5.
4. Apparently there was something else wrong? because the prescription wasn’t ready until my doctor’s office called on 5/8.
5. The Aetna Specialty rep told me I should have been called sometime today (5/8).

Why was I notified that I could fill my prescription for Tecfidera at any pharmacy?

Why did the Aetna RX Home delivery rep not know that the pharmacy she works for could not process the prescription?

WHY was I not contacted at any point in this mess? I should have been contacted by BOTH Aetna RX Home delivery AND Aetna Specialty Pharmacy.

This is ridiculous and bad for my health.

I’m sure nothing will come of this email either.

So to review, Aetna sent me prior authorization approval at around 4/22 (I don’t want to go dig up the letter) and I didn’t have my prescription actually ready and scheduled for delivery until today on 5/8.

I’m a professional patient. I know how to navigate much of the (United States) healthcare system. I understand a lot about doctor offices, pharmacies, and insurance EOBs (explanation of benefits). I know that Aetna’s pharmacy website is worse than any of the websites my doctors have set up. I know that Aetna doesn’t believe in communicating with their customers. They also apparently don’t believe in communicating with anyone outside their department or division either.

Also, it’s fucking hilarious that Aetna requires their call center reps to end with Thank you for choosing Aetna because it’s a constant reminder that I didn’t have a choice.

In short, if you have to deal with getting prescriptions from Aetna via any kind of mail delivery, make sure your doctor gets you a prescription for XANAX too.

Chronic illness forces you into the job you didn’t want (updated)

Some background first… Because I have health insurance through my husband’s employer I have no control over my insurance provider. As of the first of the year, our insurance changed, completely. We went from Cigna to Aetna. The Cigna plan didn’t have copays and the Aetna plan does. So on one hand, in the past after I satisfied my deductible and out of pocket (which has happened as early as March) I don’t have to pay anything. On the other hand, the Aetna premium is MUCH LESS but I have to pay every time I go to the doctor. With Cigna I could have my prescriptions (every 30 days) at my local pharmacy and after I satisfied the aforementioned requirements I didn’t even have to pay for prescriptions. Aetna also requires you to have all your prescriptions through their mail order pharmacy if you want to pay copays instead of 20% of the retail cost of the medicine – assuming I understand the insurance jargon correctly. Correction – see more below **: Aetna discounts the medicine by 20% and I have to pay 80% on the spot to be able to have the medicine that basically keeps me alive. My pain patches just cost me $372.24 for one month. Insurance saved me $69.05. I can file some kind of claim somewhere, somehow and get reimbursed some amount of money. I think?

Side note: I have a number of super expensive brand name medicines. All of them are super important for my quality of life or just straight being alive. The retail cost for my medicine that helps keep my migraines under control is a little over $1000.

Retail/local pharmacies process your prescriptions in like one to three days. It could take me over a week to get a new prescription processed with the Aetna pharmacy. Sure, it’s great that I can have 90 days prescriptions. However, I’d trade that for being able to easily ask a pharmacist questions almost any time I want without having to fight a confusing automated system that wants me to talk to it even though none of the options seem to apply.

All of this is the background for most of my yesterday. Yesterday I was making or receiving calls continually between 10:30am and about 1:30-2 pm. I had short breaks to eat. I had to call the Aetna pharmacy twice. I had to call the Aetna FSA twice. With each instance/department one phone rep was very helpful and one was the complete opposite. (One of the Aetna pharmacy phone reps had never heard of some asking to provide the pharmacy with their drug allergies and the supervisor I talked to was clearly wondering (“Why in the hell am I talking to this woman about this elementary shit?” She was not saying it very loudly.)

Anyways, I also started calling my doctor’s offices to provide new insurance and request refills on the meds I need soonest. For example, I used my last pain patch Tuesday night and they last 1 week. This means I have to make sure the prescription is sent to the Aetna mail order pharmacy but I also need to have a prescription for 30 days sent to my regular retail (now secondary) pharmacy. I probably have to do this four different medicines. All of them are at least a few hundred dollars each, at least the one over $1000 as mentioned above. I think I might also have to file claims for all of those medicines too and you can’t do that online.

Side side note: Mail order pharmacies, as well as FSAs that reimburse instead of allowing you to use the money directly assumes a certain amount of status and privilege. If we didn’t have credit cards I’m not sure how we’d pay for my meds this month. Also, this is why lifetime limits on health insurance benefits are very very very bad. I will have to get another medicine from the Aetna Speciality pharmacy. Depending on if you (if anyone even reads this) are an able bodied person who takes few medicines, or someone with a disease like me which requires extra special medicine, you may have never even known speciality pharmacies are a thing. I need to obtain my MS medicine this way. The last time I checked, in about a year and a half, maybe closer to two years, 90 days of my MS meds (Tecfidera) went from around $15,000 to almost $20,000. Assuming $20,000 that’s $80,000 for just one year of one medicine. You would think that pharmaceutical companies would want restrictions on lifetime benefits to continue to be illegal so that they can continue to make money off of their medicine.

So, all of these changes to my insurance and pharmacy options turned into working. I basically worked half a day and I ended up in pain from sitting still at a table for that long (not even in a hard chair). I also ended up with a tension headache. I didn’t ask for this job. No one pays me for this job. Sure, you could argue that I’m ultimately paid by my health being better – except that all of this costs me pain as well as physical and psychological energy that means I have less energy for other things. So it’s like I’m paying twice.

It’s still a job, regardless of what anyone says. It’s a thankless job that most people do not truly understand. It’s a horrible stressful job because it’s all full of red tape, corporations ultimately only worried about the bottom line, as well as doctor offices where often all the employers are overworked – and likely underpaid just like me? It’s even often an anxiety inducing job.

And all of this work doesn’t even account for the four to six other doctors I have to call and request refills from and or provide my new insurance too. I have a great deal more work to do in the following weeks

I didn’t ask for this job and I can’t quit it. I never have a day off. This is every day of my life. It doesn’t really have set hours either. (One of my doctor’s techs returned my phone call at 7:30 this morning. That’s outside of business hours.) This job doesn’t allow me to form any sense of community or connection and make friends. Basically, I’m a professional patient. Being a professional patient doesn’t have a clear job description. I can’t say that’s not part of my job. This job provides no sense of fulfillment because I have helped someone or created something – or any other reasons a job might provide you personal fulfillment – thereby improving your mood and quality of life.

It’s a horrible, stressful, and thoroughly unpleasant job and I wouldn’t wish it on an enemy and now I’ve spent almost an hour writing a blog post about an unpleasant day instead of doing something fun like playing Civ VI. This is why sometimes I just want to crawl in a dark corner, hide under a blanket and try to escape from the world.

Maybe in another blog post I’ll talk about all the paperwork and records organization I need to do on my own time that’s another part of my job as a professional patient.

Correction and updated added after I picked up some of my meds at the pharmacy. I still need to get one more filled and possibly pay over $800 for it. Also, Aetna lies. The 20% discount isn’t true for all medicines. I’ll save you the math. On the above mentioned pain patches, I was discounted 18.5% from the total retail cost. 20% would have saved made the final cost around $368.

Then I called Aetna RX again to try to get more information to understand this crap, despite my coverage information/paperwork saying that the cost is discounted, what I actually pay in a retail pharmacy is 100% of the “negotiated” cost. Negotiated means it can change whenever they want it too. It’s like my MS meds I mentioned earlier. Also, it takes 3 business days before they can “see” prescriptions requested by doctors but the phone rep couldn’t tell me why. We probably get to pay $800-900 for 30 days of my medication for migraines because of this “3 business days” BS.