I have psoriatic arthritis, and it sucks. This disease rules my life. I am doomed to take myriad medications for the rest of my days just to be able to continue to be a functional adult in this world. When I don’t get these medications, my disease gets worse and threatens to cripple me. This is not an exaggeration.
But I’m not the type to let it do that. I’m an active, energetic person who likes to get out and move.
People tell me, “Oh, you should take Aleve.” Or “Glucosamine and chondroitin really helps!” Honey, that stuff is just a drop in the bucket for me. Glucosamine and chondroitin supplements have been proven to work very little in humans, and they cause stomach problems for me – not worth it for something that doesn’t work. I require the strongest dosage of every drug I take. Also, not an exaggeration.
When I first tried a biologic medication, it was Enbrel (Etanercept). I had to learn how to give myself injections twice a week. It was scary at first, but I kept reminding myself that diabetics have to do this four times a day. My nurse told me it would take weeks to help, but the next day I felt AMAZING! I suddenly felt like I could take on the world! I was only about 30 at the time but had felt like I was in my 50s. I stayed on Enbrel for a while, but then my doctor told me that some patients found that Humira worked better for psoriasis. So, I switched to that. Great! I only had to take that shot every other week. Life was good for many years.
In 2011, I got laid off from my job and couldn’t afford to pay for COBRA. So I went without my meds for about 6 months. Methotrexate was cheap but required lab work. I eventually just paid for lab work out of pocket so I could keep it up. I then got hired back by the newspaper company from which I had been laid off, but I had to start over as a new employee (nice, huh?). I had to wait 90 days for insurance (WHY?). During that time, I had the worst arthritis flare-up of my life. I could barely get out of bed. I was living alone at the time, and daily life was nearly impossible. I had been working two jobs, but had to quit my part-time teaching job because I just couldn’t stand up and teach.
I called my dad, whom I knew could relate. He has suffered with ankylosing spondylitis (systemic arthritis of the spine) for many years. He offered me some leftover pain meds. He loaded me up with Percocet and various others. I had to take Percocet (oxycodone/paracetamol) three times a day just to be able to go to work. After about two weeks of that, I got nervous about adding addiction to my list of troubles, so I switched to Darvon (Dextropropoxyphene).
Darvon had been taken off the market in 2007 because of some fatal overdoses and heart arrhythmias. Four years later, my dad still had a stash of them, so I benefited. Darvon was AWESOME! It relieved most of my pain and didn’t make me as spacey as Percocet had. Way to go, FDA.
Note: Also, during this time I lost about 20 pounds. Opiates are an excellent weight-loss tool. Too bad addiction’s not worth the weight loss. (Don’t try this at home, kids. Seriously – addiction is nothing to play around with.)
Since then, I’ve had insurance with only a small gap in coverage and no major flare-ups. But last fall, my knees really started getting bad. I assumed it was the Humira not working as well as it had before, so I switched to Stelara. Stelara was nice because I only had to get an injection every three months. My dermatologist wanted to administer it, which is fine, but I had to go in and get the shot every three months and pay a $50 co-pay for an office visit every time. Grrr. Stelara cleared up my psoriasis, but it just didn’t work so great for arthritis. One day I woke up and all the joints on my right side were swollen and in pain. The next morning, it happened on my left side. I’d had enough.
I went to my rheumatologist and said, “We’ve got to try something else.” I really don’t mind a little psoriasis if it means I get to walk.
He offered up a new drug called Otezla (apremilast). Otezla is a pill you take twice a day, and you don’t have to take methotrexate with it, which is a plus. Methotrexate can damage the liver. But Otezla is expensive and many insurance companies don’t cover it.
Here’s where it turns into a real shit-show.
I left my job for a new one. I now work for a health insurance company (which I love), but because I’m a contract employee, I am not eligible for benefits. Thanks to the Affordable Care Act, I can now purchase insurance on my own (thanks, Obama!), and the company I bought insurance from is far cheaper than what I had paid out of my check at my last job. Bonus, right?
When I signed up, I tried to pay my bill, but the company had a glitch in its computer system, so I had to write a check and send it through snail-mail (WHA?). I mailed it to an office in my own state, but it took a full TWO WEEKS just to get the payment credited to my account. Turns out, you get what you pay for.
Once that was cleared, I was told Otezla required a pre-authorization. OK, fair enough. I called my doctor’s office to tell the nurse but was dispatched to a person who takes phone calls and leaves messages for the nurse. I told her my new insurance information so that she could tell the nurse where to send it.
A few days later, the nurse called and said she sent it to two different places (neither of which was my insurance company) and they both said I had no coverage. Apparently, she never got my message.
The following week, I called the insurance company and was told it was rejected. Why? BECAUSE THEY DON’T COVER THAT DRUG AT ALL. Why didn’t they tell me this in the first place? So, I get back in touch with the nurse and tell her to ask the doc to just put me back on Humira and be done with it. If only it were that simple.
She called me back a couple days later and said the doctor wants me on Humira, but he will work with the Otezla manufacturer to get the drug for me for free. But that takes a while because there are more hoops through which we must jump, so lets get on Humira in the mean time. OK, great.
It took a full THREE WEEKS to get my pre-authorization. I called the insurance company EVERY DAY and was told it hadn’t been faxed in. Then I called my doctor’s office EVERY DAY and was told that the person answering the phone would leave a message. By the last week, I was losing my shit. My insurance company called my doctor’s office twice and never got a call back. I never got a call back.
My doctor works at a medical school, so the clinic is part of a large group of other specialty clinics within the university system. So, each time I call, I have to push 5 for rheumatology. One day, the rheumatology line kept hanging up on me. So I pushed a different number and got a different person. I went off (calmly) on this new person.
I told her my story, then:
Me: Look, I realize this is not your fault. But I need you to convey the intensity of my anger to someone who can do something about this. I want my doctor to return my call today.
Her: Well, he’s not in the office today, but I’ll tell the nurse.
No call. Nothing changed.
The next day, I called the office at 4:45 p.m., and I was sent to the answering service. I lied and told the service I was having a horrible flare-up and needed to talk to the doctor.
Another rheumatologist called me back. I apologized for the end-around, but I can’t get anyone to call me back. He said he knows my doctor is not the type to ignore a patient (I agree) so it’s likely he wasn’t getting the message. He told me he’d see my doctor in the morning and make sure the doc knew what was going on.
Then a miracle happened: My doctor called me back the next morning. I told him about not being able to get through, and he said, “Yeah, unfortunately, this is a common complaint.” He said the office was moving on Jan. 1, and it would be separate from the rest of the group and these issues would get better. He personally went online and submitted my PA to the insurance company, and it went through. This past Tuesday, I called the insurance company and it had been approved! Holy cow! I can get relief!
But the story is not over yet. Oh, no. It couldn’t possibly be that easy.
During one of my many phone calls in recent weeks, I asked my insurance company if I needed to get my Humira from a specialty pharmacy, and I was told nope. I could get it at my local retail pharmacy! How awesome is that? (Remember this for later.)
But since I hadn’t heard from my local retail pharmacy, I tried to call yesterday. Every time I pushed the button for patient, the phone hung up on me. So the third time, I pushed the button for provider, and I got a very testy pharmacist. When I explained that the phone was hanging up on me, he said, “Yeah, well, we’re really busy. All the lines are busy.” When I explained that I wanted to check on the status of a prescription, I was told I had to wait “until we take care of these other customers.” Fine. I wasn’t trying to cut in line. I was just trying to get in the queue. Then the call rang back to the pharmacist, but because I had the smartphone on my shoulder, my face had hit mute. By the time I clicked to unmute, he had hung up.
I got up early this morning, and I called the pharmacy early. I was told that my insurance said I had to get it at a specialty pharmacy. Fan-fucking-tastic. The person gave me a number to call the specialty pharmacy, so I did. The lady said, “We just got this yesterday, so we’re in the process of verifying your benefits and then a person will call you and discuss co-pays, then schedule delivery.”
Her: When do you need your medication?
My last visit with my rheumatologist – when we decided to change meds – was Aug. 26. Today is Oct. 22. That’s how long I’ve been without a biologic medication.
Why does this have to be so difficult? Managing medical care for yourself or someone else is a full-time job.
Whose fault is this? Everyone’s.
- The pharmaceutical companies are trying to make their money. (See PharmaBro)
- The insurance companies are trying to keep costs down, so they can make their money.
- The doctor’s office is just trying to take care of patients while dealing with all the rules being forced on them by insurance companies – and trying to make money.
Until we adopt a government-run, single-payer healthcare system, similar to Germany or England, the patient will continue to suffer. The nation’s overall health will not get better. I realize that my employer would be in jeopardy, but not really. In Europe, there are still insurance companies. They help supplement the state health care, much like Medicaid and Medicare do here. People say they wouldn’t trust the government to get it right. Maybe. But we trust the government with building bridges and licensing drivers. Why can’t someone just do the job?
I’m lucky enough to have a job at which I can make personal phone calls during my downtime. Not everybody does. Several times during this process I was on hold for 10-20 minutes. I know this because my cell phone times the calls. A person who had to make calls on his or her lunch break would not get much of a lunch. I have spent several hours on the phone, pushing buttons to get through to the right person or waiting on hold for the next available representative.
If you’re not a persistent person who knows to stay on top of it then you get ignored. Your doctor isn’t going to hold your hand. This needs to be fixed. Unfortunately, I don’t think it ever will. Why? AMERICA!
Why can’t I just get a goddamn prescription?
Here is an excellent article in the New York Times by a doctor who has to battle the system as a patient. His frustrations are very similar to mine.
I called my specialty pharmacy today to get an update on my prescription. She told me my co-pay was $300 for ONE MONTH. Luckily, I have that Humira co-pay assistance plan, but still. Then she told me the earliest I would get my meds is Tuesday. I said, “I thought you could overnight it.” She said, “Yeah, but we no longer do weekend delivery.” That’s when the tears came.
After a few minutes of hearing me answer stupid questions through tears, she finally asked, “Are you in pain?” I said, “Yes. A lot.” She said she would try to get an override on the no-weekend-delivery rule, which I appreciate. I’m glad there is one nice person out there.
I’m hurting badly again today. I almost started crying while trying to put on my shoes this morning. My left hand can’t grip anything, and my right index finger won’t bend — at least not without extreme pain.