What’s harder: breaking into the pentagon or getting ACTH?

Arguably, they’re probably pretty on par.

ACTH is the acronym for adrenocorticotropic hormone. Its the first line treatment for infantile spams. Interestingly, it can work for IS but the experts don’t even have a full understanding as to why it works. If that doesn’t highlight the mystery that is infantile spasms I don’t know what else will.

When we were told we were going to start this treatment my husband and I already knew a little bit about it just from our own prior research. The residents came in and told us they were going to start the paperwork to get this medication. Silly me, I asked “How much does it cost? Can I just buy it?” I was desperate to get my son the treatment he needed ASAP. She simply said no and indicated that it was too expensive without trying to make assumptions on our financial status. However, I didn’t realize the medication would be $87,000 a vial, so by all means make assumptions because we could not afford that out of pocket. I don’t know many people that could.

So we started the process and by the time we were discharged from the hospital I got an automated message that his prior authorization was approved. I thought great this is going so much smoother than they said it would. Only that was the beginning of what would be a week long headache.

Acthar the pharmaceutical company that makes the medication hooks you up with a case manager that helps with all the coordination between the doctors office and the specialty pharmacy. Our case worker was great and he took care of a lot of the leg work. I will say my husband and I still needed to do a lot of work to get this done. There was a point in time where I literally blanked on a conversation I had with the insurance company because I was so burnt out from literal days and hours of back and forth between the doctor, the insurance company, the pharmacy, and Acthar.

Things definitely got delayed with insurance, the doctors office, and how the benefits were run. This will look different for everyone depending on their plan, but it really shouldn’t be this difficult! At times I felt like the insurance company was pissed at me for needing such an expensive medication, but they were pointing the finger at the wrong person because I wasn’t the one who jacked up the price.

It was taking days and hours upon hours on the phone with several different people across various departments. I remember sitting in the mall parking lot with my mom when I had the prior authorization department telling me it was going to take another week for review and I remember losing my patience during this phone call. I didn’t care that I turned into the Karen that asked for a manger. My son was having 100s of seizures a day I was not waiting on them for another whole week. In that moment I realized no one is going to advocate for my son harder than me. If it wasn’t for all the hours spent on the phone making sure everyone was sending and receiving the information they needed who knows how long it would have taken us to get this vital medication.

Eventually, we got every governing body on the same page and the medication was being same day shipped to us. They told us we would need to sign for it and it would be delivered between 7-9pm. Given our experience so far I made sure we were home an hour before that window because I just had a feeling. Low and behold when we pulled into the drive way the box containing $174,000 worth of medication and supplies was just hanging out on my porch and no one signed for it! On one had I was like what the hell…on the other hand I was grateful they still left it.

ACTH is also tricky because my husband and I aren’t medical professionals but we had to learn how to give Jordan an IM twice a day. Once we had the medication we called the hospital so we could be admitted and learn how to administer the ACTH. On my husbands turn the needle was screwed on incorrectly and it fell off and the medication went everywhere. I’m pretty sure $10k went all over the crib and we died a little inside. Every time something went wrong with this medication it was a punch in the gut because we knew how hard and expensive it was to obtain.

Once discharged you are set up with VNA (visiting nurses) who will come out and assist you with checking vitals. ACTH can impact blood pressure and blood sugar so they need to be checked daily. Thank God my mother in law is a nurse because she was so helpful with helping administer the meds and check his vitals for us as well.

It is important to be very good at drawing out the exact amount of medication because they do not give you much room for error (we learned this the hard way). We eventually needed a refill because we ran out before what was calculated and we needed to go through this process all over again. The insurance company was not happy. Luckily, this time it wasn’t as difficult to get but it was still a pain and we needed to have it same day couriered. This time we actually signed for it.

The standard protocol for ACTH is 2 weeks at a high dose and 2 weeks of weaning. Jordan didn’t fully respond until 12 days in the high dose so his wean was extended to last 3 months. However, he still relapsed in the wean and he was taken off ACTH early. We have read that many children do respond to ACTH and I’m so happy that it works for them. Unfortunately, it wasn’t the answer for us and we’re still searching for it.