2016 Low-Protein Medical Foods Survey

Who in your family has PKU?*

I do
Other Family Member(s)
Other family member(s) and I

What State do you live in?*

At this time we're limiting responses to those in the United States, because this is the target for possible funding.

What type(s) of PKU do your household members have?*

Classic
Moderate
Hyperphe
I don't know
I/my family members have another metabolic condition (please note which condition in comments at the end of survey)

What is the daily tolerance of you or your family member with PKU?*

Please enter the tolerance of the oldest member of your household with PKU

The above tolerance is in:*

mg of phe
grams of protein
exchanges

Do you use Low-Protein Medical Foods**

*Low-Protein Medical foods are defined for this survey as low protein pastas, breads, starches, mixes, pre-made foods from companies such as Cambrooke, etc.

Yes
No

If you don't use low-protein medical foods, why don't you?*

Cost
Taste
Selection
Hard to obtain

What kind(s) of insurance do you have?*

Private/Employer-offered
Public (Medicare or other government program)
Purchased from health exchange
Tricare
Other

Does your health insurance cover low-protein medical foods?*

Yes
No
I don't know

How much low-protein medical food per year (in dollars) does your insurance cover?

Is this coverage sufficient?*

Yes
No
Yes, for the time being, but that may change
I don't know

Please estimate your average MONTHLY cost for Low-Protein Medical Foods*

If you do not currently purchase medical foods because you don't have coverage, please estimate what you would spend if it were covered.

Does not having coverage for low-protein medical foods affect your health?*

Yes
No
I don't know
I have complete & satisfactory coverage

Please share any comments about Low-Protein Medical Food coverage

If you'd like to receive updates on the results of this survey and the effort to obtain funds for Low-Protein Medical Foods, please provide your email below.