Good health insurance is one of the things in life that gives me anxiety. I have never been without, but since my rheumatoid arthritis (RA) diagnosis in 2004, it is always in the back of my mind. I have seen too many people with RA who are not being adequately treated and selfishly, I don’t want to be in that situation ever.
Since I have been a stay at home mom or worked part-time for the last 22 years, I’ve always depended on my husband to carry the insurance. This wasn’t a big deal before RA. After RA, he had to get specific details about insurance before accepting a new job which put a burden on him. Since we didn’t have a backup, we needed to know I was covered.
With pre-existing conditions being a topic of political conversation since 2016, my anxiety has risen. What will actually happen with it, I have no idea, but I know it adds to my feelings of insecurity. So, one of the many reasons I chose to become a full-time employee in September was I wanted to have my own insurance, knowing I always had my husband’s as a back up.
Since starting my own insurance, I have had multiple issues getting my biologic on time. And since it has had life changing effects on my body, I don’t really like missing doses. After working out some kinks with insurance through multiple hours on the phone, I thought we were good to go and things would be smooth sailing from here. Wrong!
I had a delivery scheduled for Tuesday. On Monday, I get a call that insurance has stopped the delivery and would get back with the pharmacy in 24 hours. They didn’t. On Thursday, I made a call to insurance to find out what was going on. It took almost an hour of my time at work (students were waiting on me), to be transferred eight different times, each time spelling my first and last name and giving my birthday. One of the conversations included “We don’t find you in the system.” Another conversation, “We don’t see you have a prescription with us.” WTF? (Yeah, since 2016, I use the F word a lot. It’s new for me. I kind of like it).
I don’t know about you, but these conversations make me emotional. I want to get mean with the person I am talking to, but I know it isn’t their fault. Instead, tears start bubbling up. Personally, I don’t like people walking past my office seeing me on the phone in tears. Finally though, I had insurance and the pharmacy on the phone together, thought we had it worked out, and assumed I would get my prescription in the mail immediately. Nope. It takes 24 hours after insurance has released the medication to schedule delivery. WTF? (See, I use it a lot now.)
With no other option, I chose to wait for the call in 24 hours. (They called earlier and I didn’t have my cell phone with me because hey, I work a job.) So, I called back the next day. Guess what? “I need to read through your notes first. Can I put you on hold please?” NO!!! The customer service representative came back and said, “It looks like insurance has put a hold on your prescription.” I asked her to please continue reading. Finally, she came back and got my biologic scheduled for Saturday delivery. A day late on injecting is fine. I can handle that.
Why was my medication put on hold? The price went up. Since biologics are very expensive, it was over the amount approved. Okay. I get that. But here is the thing insurance companies, stress affects those of us with an autoimmune disease and this was stressful. Not following our medication schedule affects how we feel which leads to how we can continue our jobs or care for our families.
I am trying to be proactive in my health. I now have my own insurance and my husband’s as a backup if needed. I follow my doctor’s instructions and don’t skip medications. I reorder prescriptions on time so I don’t have to skip a treatment.
Please insurance companies, help me out. Get back with pharmacies right away if there is an issue. Email me with updates. Train your employees so I don’t have to miss an hour of work every month calling you to get things worked out. And, educate them so I am not transferred eight times before the connection between insurance and the pharmacy is worked out. I understand complications arise, but the run-around is just too much sometimes.
The Life and Adventures of Cateepoo 
Cathy: I hate specialty pharmacies and dealing with insurance companies. I have two suggestions, one more extreme than the other, but with the same basis. Medications that the patient administers (injections, pills, lotions, etc.) come under the drug portion of insurance companies and are listed on their formularies and often have to be dispensed through specialty pharmacies. Medications given at a medical facility (hospital, infusion center, etc.) are covered by your medical portion and are subject to your deductible and copay (usually 80/20 or 90/10) but the medical facility makes all arrangements for payment directly with the insurance company. Solution 1: have your injection done at your doctor’s office or local hospital (usually in the infusion center). I’ve wondered why I’ve seen RA patients come in for injections at my infusion center or by the infusion staff at my doctor’s office and the answer I’ve gotten is because of the difference in insurance coverage. This approach has some financial risk that the other doesn’t. The insurance company can claim the drug is still covered under the pharma part of the plan. Even so, the administering facility (not the patient) is still responsible for dealing with the insurance company and getting the medication in on time. The second option is to switch to an infused medication administered at your doctor’s recommended location (their office, an infusion center, or a local hospital infusion center). Not sure what your deductible is, so it might be costly at first, but at some point, the copays will max out your out-of-pocket and you’ll be covered at 100% for the rest of the year. I hate to suggest switching a medication that is working to an unknown infused one, but for many RA patients whose insurance formulary changes every year, this is a reality of life. The good news is, it takes you out of the never-ending pharmacy/insurance loop. I’m so sorry this happened, but your story truly underscores the barriers chronically ill patients have in obtaining their medications. While being late on RA medications is a serious situation, consider the consequences faced by someone with AIDS or other life-threatening illness. What you experienced affects all of us. Sending hugs.
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I always used to tell people at my insurance company that I already had a job, and guess what, it is not administering my health insurance.
That sort of lost its punch when I no longer worked.
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Unbelievably frustrating experience. I’d be very hesitant to change a biologic that works brilliantly, though. I have a third suggestion — every biologic has a support program. If you run into this again, maybe they can help?
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Hi (again) Cathy: This week when I was in getting my infusion, there were two RA patients there, both getting injections. I asked the infusion nurses again why they were there when the injections could be administered at home. They confirmed they answer I had received at my previous infusion facility — their drug/pharmacy insurance didn’t cover the medication (or didn’t cover it enough) and by having the injections done there (or at their doctor’s office), it was covered by the medical portion of their insurance/Medicare. Then I said, “That must also make it easier for them since you guys (the infusion facility) have to order the medications and file all the insurance paperwork.” They replied affirmatively. Yes, all the patient had to do was show up and get the injection. While this means making a trip to the doctor’s office/infusion facility, I would at least discuss with your rheumy to know what your options are. Good luck!
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