After almost a year of trying, I finally got Liquid Hope approved by my insurance, a new home infusion company, and the new pump I needed to use the thicker formula. I’ve written extensively about the frustrating process and I recommend checking out those posts, but if you just want a short list of instructions on how to get on Liquid Hope yourself, you’re in luck! Read on below to find out how.
- 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
- I 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 (wrong)
- I got a Zevex Infinity pump to replace my Kangaroo Joey, because the Joey kept clogging – it couldn’t handle the thicker Liquid Hope, and my Zevex is awesome – no problems!
- Then, I waited….and waited…for close to a year. After a couple months I started doing research and making calls on my own, when I had the energy, which was not often. I called my insurance at least once a month, trying to get them to figure it out.
- After bothering my insurance for months, they assigned me a caseworker, something I didn’t know existed, and she got approval and found a Home Infusion Company in weeks. Turns out FF was trying to go through a DME, which apparently is the wrong kind of company – they needed to use a Home Infusion Company.
- I had to fight tooth and nail for this, but I managed it so that I had a month’s supply of Isosource (my old formula) and Liquid Hope simultaneously so that I could slowly, safely transition so that I wouldn’t go into sugar withdrawal and so that my GI tract could adjust. Do NOT let anyone tell you this isn’t necessary. It is a big change. I took about six weeks to transition.
Overall takeaway from this experience – don’t bother going through Functional Formularies; ask your insurance for a caseworker to help you with the process. Hopefully as they grow they will have a better way to set patients up with insurance coverage and suppliers. Keep in mind for most insurance companies you need a Home Infusion Company, NOT a DME. Why nobody knew this, I have no idea.
Not many companies carry Liquid Hope, which I hope will change if we patients decide that we don’t want to live on synthetic formula.
So, now I’ve been solely on Liquid Hope for about a month. It was such a difficult process and took so long to obtain that I almost gave up many times, but I’m glad I didn’t. I have noticed some changes – I’m going to the bathroom more regularly, and a lot more, and it really took me time to get used to the dramatic decrease in sugar. I’m not sure if I feel better or not, yet. I think it’s going to take a long time to make that kind of assessment. I do feel better about it, though – real food is always better, if you can tolerate it. I say “if you can tolerate it” because some people really can’t for various reasons, and that’s why we have synthetic formulas. If I run into problems and can’t tolerate it, I will go back to Isosource or another synthetic. But synthetic formulas should be the LAST resort, not the first thing you’re put on! We’re lucky to have the option of Liquid Hope.