Specialty Medication Struggles
2/28/2020
Holden takes a lot of medications, but he has one in particular, Sabril, that has a monthly cost of $26,000 out of pocket. Our primary insurance does not cover it but we have a secondary insurance that does. If you don’t know how secondary insurance works it covers what your primary doesn’t but ONLY if you go about trying to get it the way primary wants. For example, if insurance says they will cover 80% of your surgery at hospital A but not hospital B, then secondary will pick up the rest of the cost at hospital A. However if you chose to have surgery at hospital B, secondary will not pick up any of the cost because you chose to go somewhere primary wouldn’t cover.
With that being said, our secondary insurance has covered this medication for the past three years. I have always dreaded the monthly call to refill it because it always takes at least 20 minutes if not more. Every single month they tell me “Oh it looks like it’s being rejected by your insurance.” Then I have to explain the process (even though I’m sure they’re all trained on it) that the primary insurance has to deny it so that the secondary picks it up. After that hurdle then they tell me it can only be delivered every 30 days, not a day sooner and I have to explain that that is the primary insurances policy not the secondary who is covering it. This delivery time constraint is particularly stupid because I have to sign for it. Life happens and a strict 30 day time limit is unrealistic, there needs to be some wiggle room that it can come a day or two early if we have doctors appointments and other prior engagements.
Every..........single........month!
So last month we received a letter from our insurance that stated their “speciality” prescription coverage has changed and that it looks like we recently tried to fill a specialty medication at a non approved pharmacy. The letter did not say which medication it was or what pharmacy. Which then required me to have to call and find out what they were talking about. It turned out to be our Sabril. This was a bit confusing to me since we haven’t had a real issue the last three years and because we specifically asked our insurance if there were any changes this year and they said no.
Now that you have a little back story, here is one example of what families have to deal with when having a child on speciality medications. (Names have been changed) It is pretty lengthy so I will summarize the occurrence of calls without details first. Then, if you’d like, you can scroll to see the extend of content in the conversations and the repetitive nature of the calls.
2/17/20 @ 09:24 outgoing to pharmacy.
2/18/20 @ 1349 outgoing to pharmacy.
2/19/20 @ 1513 outgoing to pharmacy.
@ 1518 outgoing to physician’s office.
@ 1621 incoming from physician’s office.
@ 1637 incoming from physician’s office.
2/20/20 @ 1443 outgoing to pharmacy.
@1455 outgoing to pharmacy supervisor.
@ 1455 outgoing to pharmacy supervisor.
@1456 outgoing to pharmacy supervisor.
@1458 outgoing to pharmacy supervisor.
@ 1458 outgoing to physician’s office.
@ 1501 outgoing to physician’s office.
@ 1504 incoming from physician’s office.
@ 1508 incoming from pharmacy supervisor.
@ 1533 incoming from physician’s office.
@ 1632 incoming from physician’s office.
@ 1659 incoming from pharmacy.
@ 1705 outgoing to pharmacy.
(MON) 2/17/20 @ 0924- I call new pharmacy (we’ll call them “Prime Medications”) to discuss letter that was received in the mail. I speak to Ariel who states that we have to “enroll” into their specialty program to receive the Sabril. I explain to her that we never received proper notification of this change and that he will run out of medication on Saturday 2/22/20 so we will need this resolved quickly. Ariel states that it will be no problem and that it is only a 72 hour turn around time so the medication should ship on Wednesday and that she will also mark it as STAT. I ask Ariel if there is a contact person I can keep in touch with to make sure this moves along appropriately. She says that no contact person is needed because she will forward the medication information to the pharmacist who will then contact the physician for a new prescription. Ariel states that there is nothing additional I need to do on my end but gave me the main pharmacy number.
(TUES) 2/18/20 @ 13:49- I call Prime Medications to check progress, transferred and speak with Belle who states it is in process and pharmacist has reached out to physician. I remind her the importance of receiving medication by Saturday.
(WEDS) 2/19/20 @ 15:13- I call Prime Medications to check status, transferred and speak with Cinderella who states it looks like the pharmacist needs additional information and that they need a script faxed to them. (*Rage erupts in brain*) I explain to Cinderalla that on Monday I specifically asked if there was anything I needed to do and I was told everything would be taken care of by their staff and that the medication would be shipped on Wednesday. She states that it is always helpful if the patient calls the doctors office to push it along as well. I reiterate that it must be delivered by Saturday, she states it is already marked as STAT.
15:18- I call doctors office and speak with staff who states they will contact doctor and have them fax the script and call pharmacist.
1621- Return call from physician RN, Dory, who clarifies what is needed and states she will call Prime Medications and speak with pharmacist.
1637- Dory calls to notify me that she spoke with the pharmacist, Eric, and that everything is all taken care of.
(THURS) 2/20/20 @ 1443: I call Prime Medications to check status, transferred and speak with Flounder. (Flounder is not cool, Flounder is a jerk) Flounder is the first person to tell me that it is still in process and that it will take at least another 72 hours and he cannot guarantee that the medication will be here by Saturday (*extreme rage erupts in brain since every day I have explained that it must be here by Saturday*) I tell him it must be here by then, Flounder states he can not promise that because they just received the script today. I tell him that is untrue and I ask to speak with someone else who can guarantee it will be here, Flounder states I’m already talking to that person. I again ask to speak with a different department who can handle this, Flounder states he is the department. I ask to speak to a team leader, Flounder tells me there is no one else. (rage intensifies in brain) Husband makes eye contact and knows I’m about to lose my shit. I tell Flounder that I know how this works and that there is someone else to speak to because there always is, Flounder denies this and tells me there is no one that can guarantee medication will be here by Saturday. I get angrier and louder and ask Flounder to give me a name and number of a supervisor. Flounder tells me that there is no phone number for a supervisor but that he can email them and that will be a 48 hour turn around time. I demand a number, Flounder reluctantly gives me the number for Mother Gothel and hangs up on me.
1455 – I call Mother Gothel, phone is picked up and hung up.
1455- I call Mother Gothel, no answer or machine.
1456- I call Mother Gothel, no answer or machine.
1458- I call Mother Gothel once more and still no answer or machine.
*Husband starts making phone calls as well.
1458- I call doctors office and speak with Imelda and explain this ridiculous situation. Imelda is a wave of sweet relief with her kindness. She states she is going to find Dory right now and get me some help. The last words I hear from Imelda are “Ooo biscuits!!” as she accidentally hangs up on me. I get right back on the phone with her and I’m glad I have this brief moment of laughter because it was much needed. She states Dory will call me.
1504- Dory calls and asks what is going on. I explain everything to her and she states that she will call them and straighten everything out and to not worry.
1508- Mother Gothel returns call (even though I never left a message with my name and number but whatevs) Mother Gothel attempts to help me and do some digging in the chart. She puts me on hold and states that the insurance numbers are not matching up, she reads the correct numbers back to me and tries again. She states that something is wrong with our insurance because the numbers are not showing up as an account. Long story short, she says she will work on it and call me back. I explain to her how unhappy I was with Flounder’s attitude and his refusal to give me someone else’s number for help. She states she understands why he said and did the things he did as they have certain “windows” they have to work through. Mother Gothel is now dead to me as she will clearly be of no help.
1533- Dory calls and states that she spoke with the pharmacy and she is waiting for a phone call from their “seniors” so they can do a verbal approval. She states they told her both insurances were denying it so she called our secondary insurance to verify this and they stated they had no requests for medication coverage. Dory found out that Prime Medications inputted out primary insurance information twice, as primary and secondary, so they were never billing correctly to begin with.
1632- Dory calls and states that everything has been submitted correctly and that it should move through tonight if not early morning. She recommends I call tonight to check status as they operate until 8 pm, (not 5pm like Flounder said). Dory says she will call me first thing in the morning and if things haven’t gone through we will come up with a back up plan. Dory is the best and assures me not to worry.
*During this time my husband has been making phone calls as well. He’s called the pharmacy and is told multiple reasons during the length of the phone calls as to why it hasn’t gone through. They didn’t have a script, they need authorization from the doctor, the insurance information we gave them is incorrect, our insurance doesn’t cover this medication. He ended up calling our insurance company as well, explained what was going on and they initiated a three way call with the pharmacy as well to try and straighten things out. The pharmacy was even asking for numbers that aren’t on our insurance card at all and our insurance verified they don’t use that kind of a number; but still they just couldn’t work things out. This all originated from a letter they sent us telling us we had to order this medication through them, so why would they do that if they weren’t going to cover the medication anyway? They kept telling us they could still fill it but that it would be out of pocket, obviously we can’t afford that; no one can at the price of $26,000.
1659- Prime Medications calls, I did not catch this persons name (I was just a little overwhelmed) but this person had the audacity to state “I have good news for you, if your husband would have given me the correct information to begin with we wouldn’t have had any issues.” This is incredibly infuriating because first of all, you’re bad mouthing my husband, and secondly I am the one who has been handling this and no false information has been given AND I’ve been very clear from the beginning about everything. I’ve called every day and not one person has said anything was incorrect. This person transfers me to another person to set up delivery and accidentally hangs up on me.
1705- I give Prime Medications a few minutes to call me back but they do not so I call them. I’m transferred to someone else and it takes another twenty-three minutes to complete set up for delivery the next day.
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The biggest take away I want you to get from reading this is; what would have happened if I never called to track the progress of this medication? What would have happened if I trusted what they said on the very first day? When would they have called me to straighten things out, or would they just send a letter in the mail? It is an unfortunate truth that parents like us have to constantly go above and beyond to receive what is needed for our child. It adds so much unnecessary stress that we have to be on top of everything that is a part of our sons care. I genuinely trust people and I’ve never wanted to be that crazy helicopter parent who is calling all the time; but we have to. It’s the only way to make sure it gets done correctly.