How can I make my insurance pay for homocystinuria protein powder?

July 28, 2009 9:29 AM

I have homocystinuria, which means that I should get as little methionine in my protein as possible. The doctors recommend I take a special methionine-free protein powder, but the insurance won't pay for it. What is the step-by-step for making them come around?

A little background: homocystinuria means that if I get too much of the amino acid methionine, it'll end up turning into homocysteine, which builds up to a toxic level and (in theory) gives me a stroke. Now, I lived the first 18 years of my life without knowing this, and eating whatever I want; I also didn't end up with any of the really scary symptoms on that Wikipedia page, like retardation---although I am a bit abnormally skinny/tall/thin/long-limbed. Nevertheless, now that I know about it (genetic tests), I'd like to avoid the whole stroke thing.

So, the doctors say that I should stay on a low-as-possible protein diet, and in particular avoid certain bad foods. Then I should supplement my food intake with special methionine-free protein powder, like HCY 2 or HCU Express. So far I have not been able to do this, because my insurance refuses to cover it; instead I have been just avoiding bad foods "most of the time," and not getting any supplemental protein. This is sad, especially since it feels a bit counterproductive when I'm trying to make my weightlifting work for me and my low-protein vegan diet.

The insurance story: I have student health insurance through Aetna/Chickering. The doctors wrote me a prescription for one of those powders, but when I went to order the powder, I couldn't apply my insurance to the purchase. (I don't know exactly how that worked; my parent handled the details at the time, a couple of years ago.) I tried filing an appeal, twice, including letters from the doctor explaining why this was actually necessary for me. But the insurance company sends me a form letter saying "no you can't do that, it's a dietary supplement, not a medicine; no insurance for you." Thus, I can't get my protein powder.

I'm ready to try fighting this one out once again, but this time with the wise guidance of the AskMeFi hive mind. What's the procedure for fighting with the insurance about something like this? How can I be most effective? What's the step-by-step escalation process? Do I ever involve outside agencies, like state government or something? (I'm in California.) Should I try to contact the media and get them to make a sob story about evil insurance companies? (Mostly kidding about that last one...) Keep in mind that I've already tried the appeals process, and it didn't work; I guess I need to push harder. Feed me your wisdom on how to do so :).

posted by Jacen Solo to health & fitness (2 comments total)

Insurance companies will sometimes respond to a cost benefit analysis that may penetrate the reflex rejection of certain categories.

Someone I worked with would have a hard time getting insurance companies to pay for certain psychological tests. The standard response was, "Well, I guess we'll have this troubled child admitted for the night or a few days, and then we will do the tests while he's in there. Do you think that will be cheaper?" Bang, tests approved.

I'd find out the cost of the protein powder on a monthly basis and run it up for the next few years and then the percentage chance you'll have a stroke or heart attack, and then ask them, "Which is cheaper?" It's a little research, but a stroke will cost them quite a bit.

Dollars are the only thing they understand.
posted by adipocere at 9:58 AM on July 28

People who need special baby formula often have this problem as well. Even though it is a prescription does not mean it is covered under your prescription drug plan. I found that out when my preemie daughter was prescribed human milk fortifier. Wasn't covered under my insurance plan.

If you have exhausted your appeal process there is probably not much more you can do. I have played this game a few times and if it's not on your policy, it won't be covered. Have you asked for a copy of your policy, in its entirety? Have you read it? Do you see where they cover "dietary supplements" explicitly? If not--you are probably out of luck. (If so--and they are still balking--time to get your state insurance commissioner involved.)

Have you had a consultation with a registered dietitian? What was his/her recommendation? Did you include their clinical opinions in the appeals?

What you *can* do to obtain this product is either buy it outright. Have you checked with the manufacturer to see if they offer a reduced price if you buy without insurance, or an assistance program to do so?

The other thing you can do is find another insurance policy that will cover it. (I realize that is about as easy as lauching yourself into outer space right now.)

Sometimes, students and employees of a college or university share an insurance plan. If your university is self-insured, they are sharing in some of the decisions about what is and what is not covered. You can check with your university's operations or HR department about if the university is self-insured, and if so, how to file an appeal to the administrator.

Insurance is a limited product. It's no fun when you find out about the limits like this--when you are being told you need something. Good luck.
posted by FergieBelle at 10:20 AM on July 28 [1 favorite has favorites]