The Insurance Struggle — Perfectly PKU

All the formula and samples of formula I have from the past month.

This particular insurance struggle technically started at the beginning of last summer at the end of June. It all started because I switched jobs in June, but with my new job I wasn’t making full time hours so I wasn’t able to get insurance through them yet. I went from working in a school setting to working as an RBT, which I was actually pretty excited to go back to (I have worked as one previously). Initially, the first month without insurance didn’t affect my formula. As the summer went on, more and more struggles started to appear in my life.

One of those struggles was the lack of medical insurance and not being able to get my formula and Kuvan. As the summer started coming to an end, I knew not having any formula to drink was not a good thing, but I wasn’t really mentally or physically affected at this point, at least to my knowledge. Maybe others around me noticed a change in my behavior, but I didn’t really feel or notice any changes until late fall.

To back track a little, I expected my new RBT job to turn into a full-time job that would allow me to get on their insurance plan. And had I stayed at that job, it would have. The only problem with that job was that I was struggling to pay my bills. And I live alone so all of that responsibility falls on me. September was my last full month working there, but if I had stayed longer I would have gotten more hours and been able to get onto their insurance plan. The reason I left was because even with the additional hours and promise to get on their insurance plan, I knew that I still wouldn’t have earn enough money to easily pay my bills. So at this point it’s September and I still don’t have insurance.

Some of you at this point may be thinking, “Why didn’t I apply for insurance through the government?” Honestly, it’s just because all of that shit confuses me and I knew that I was going to have a job soon that I would get insurance with.

After I worked as an RBT, I immediately started new position working at another school. This was in the beginning of October. Because of when I started, I wasn’t eligible to start on their insurance plan until November. BUT, another issue with their insurance was that the company my school is owned my was switching which insurance they use starting in December, which actually worked out better for me because my now current insurance covers more than the old one would have. This was ultimately a good job switch for me though, because I have more consistent pay and a slightly higher pay so I’m not stressing as much about paying the bills.

So to sum this all up, I went from July through October without insurance. I got coverage with one company in November, but it switched to a separate company in December. The reason I even mention this is because I decided to wait to call about my formula since I knew the prior authorization for my formula would take a while to approve and I didn’t know if a month was long enough. I also didn’t want to have to go through that process two months in a row if my insurance was switching. So I just waited until December to start the process.

But let’s get into it. I went to my PKU doctors right before Thanksgiving. I went in for just a regular check-up as well as to talk to them about changing up my formula a little bit. I was originally taking 2 bottles of the Camino Pro GMP Restore Lemon Lime flavor with 2 satchets of the PKU Sphere berry flavor. After 28 years with PKU, I think I’ve finally learned that the mixed powder formulas are just not my thing. So I wanted to back to drinking on the Camino Pro GMP Restore again (I used to only drink those for awhile, before trying to mix it up). After speaking with my doctors we agreed to change my formula prescription to only the Camino Pro GMP.

Now is when ordering through Edgepark and working directly with my insurance comes in. I started working on getting this order sent out in the first week of December. After a lot of tears, a lot of frustration, a little bit of yelling over the phone, and *maybe* asking to speak to a supervisor, I finally got my first shipment from Edgepark. It is now February 8th, and I just got my shipment from Edgepark yesterday. That means I went from July to February 7th without getting a shipment, but waited specifically from Edgepark for two months. I did get samples sent to me from my doctors in the last few months to help me out though.

The first issue getting this shipment was it originally just got cancelled by Edgepark for no reason. Then I had issues trying to get the Prior Authorization approved from my insurance. My insurance said they never even got an authorization request until December 30th, even though I’d been trying to get it all month. This miscommunication and misinformation from Edgepark and my insurance continued throughout the whole month of January. I finally found out this week my order was approved and shipped out.

I received my formula shipment yesterday, but struggle is still not over yet! They sent me the amount from my previous prescription. Because I am increasing the amount of Camino Pro GMP Restore I am taking, they need a new written order from my doctor. Along with all this prior authorization through my insurance, I think there was confusion about my new prescription.

Camino Pro GMP Restore Lemon Lime Flavor

So my current struggle with my formula is trying to make sure that Edgepark has the right amount to send out for my February shipment and that my insurance approves of it.

And if you thought I was finished, I’m not. Under my insurance, they have a 80%, 20% policy. So they will cover the first 80% (after meeting my deductible) and I have to cover the last 20%. I’m still trying to meet my deductible at the moment, which is a real struggle for me to pay for. But I’m also going to have to continue making monthly co-payments towards my formula that I know are going to upwards of $100. If you guys know of any financial support for formula, can you please comment below or message me through my contact form or through Instagram? I would greatly appreciate it!!