Continued from Liquid Hope – A Real Food Formula
After being so encouraged by finding out the existence of Liquid Hope (the all-natural real foods enteral formula) things have totally stalled. When I left off I was in primary care limbo, but I managed to resolve that – the covering physician ended up being really helpful and wrote the prescription for Liquid Hope, so I requested that she take over my case as my primary care, and she accepted – and got all the necessary paperwork to Functional Formularies (the manufacturer).
Functional Formularies states on their website that they have a “free service” to assist patients with getting insurance coverage and to find a DME to supply Liquid Hope. It’s definitely great that they do, but I have to point out that every company that sells any product has similar services – their end goal is to sell as much product as they can. CVS, Express Scripts, car salesmen – they all do the same thing. The reason I mention that is that Functional Formularies kept mentioning their “free service” and how great they were for trying to help me whenever something went wrong, and it got really old.
These are the steps I took:
- I filled out the Insurance Agreement Form and Coverage Assistance Form and emailed them to firstname.lastname@example.org
- My doctor sent Functional Formularies a Letter of Medical Necessity (basically a letter saying I needed the product) and a prescription
- I communicated with Functional Formularies and made sure they had everything they needed
They sent me a sample and I also bought a box of formula on my own because I knew it would take a long time to transition and I figured by the time I was ready to be on it as my sole source of nutrition the paperwork would have gone through (how wrong I was)
Then, I waited….and waited…
…for about a month, and then I contacted FF again. They acted like they’d never heard of me and said they didn’t have any paperwork. I contacted my doctor to see if she’d sent it (she said she had) and ask her to resend it, and I sent my paperwork in again. It turns out that because my doctor had left my EMAIL ADDRESS off the form she sent to FF, Functional Formularies “misplaced” all my paperwork. Even though it had all the other information correct and they had been corresponding with me… they didn’t try to contact me or my doctor. A month and a half of time, wasted. We got the paperwork straightened out. Great, I thought, just a matter of time.
But my problems were just beginning.
I was using a Kangaroo Joey pump and bags. I started transitioning slowly, replacing 100 mL of my Isosource with 100 mL of Liquid Hope. I didn’t have much trouble (occasional clogging in the bag tubing, but I was able to fix it) until I got a new shipment of Joey bags that were different – thinner plastic, skinnier tubing, different adapter. Now the tubing was too skinny for the thicker formula. Nothing I did made any difference – warming it up, thinning it out with coconut water, etc. So I called my home infusion company to find out what the deal was with the new bags. Turns out there was an industry standard change – all enteral adapters were going to be changed to something called the EnFit system.
So, my Joey system wasn’t going to work with the new formula. I did some digging, talked to my home infusion company, and talked to FF. FF told me that they knew they had trouble with the Joey pump because of the way the tubing wrapped around the pump and they recommended the Zevex Enteralite Infinity Pump.
Now I had to call my home infusion company, who said I needed a prescription and for a registered nurse to come to my house and teach me how to use it, and they didn’t supply that service, so I would have to go through my hospital. Kafka would be proud.
SO I emailed my primary care and explained what I wanted and told her I certainly didn’t need anyone to come to my house to explain anything. She sent in the prescription and I was able to convince my home infusion company I could learn how to use a pump myself, seeing as I have completed third grade.
This part actually worked out and I received the new pump and DVD pretty quickly. It was easy to use and it actually worked with the Liquid Hope! I had no problems with it. I think it’s a way better design than that the Joey pump. The Zevex Infinity bags have a hard plastic cartridge that snaps into the pump.
The Joey pump bags tubing goes right through the pump mechanism, which easily causes kinks and clogs, and the tubing is really thin (thinner after the EnFit “improvements”). Anyway, I haven’t had any problems with the Zevex system. The problems came with trying to get insurance approval. As it became clear that it wasn’t going to get approved before I used up the box I bought, I stopped transitioning and went back to Isosource while I waited.