Insurance, Programs & Pharmacies
Coverage Options for Low Protein Foods
Getting coverage for low protein medical foods for PKU and other metabolic disorders can feel confusing. This page explains how insurance billing works, which programs may help, and how to access medical foods through pharmacies and DME providers.
Many low protein medical foods for PKU, MSUD, Tyrosinemia, Homocystinuria, and other inherited metabolic disorders may qualify for insurance coverage depending on:
Your insurance plan, Your state’s medical food laws, Coverage varies by state and plan
Most insurance providers require: A prescription, A Letter of Medical Necessity, Diagnosis documentation, Prior authorization
We recommend working with a local DME (Durable Medical Equipment) supplier or pharmacy
State Programs & Medicaid
Many states offer metabolic coverage programs or Medicaid benefits that may cover:
Low protein modified foods
Metabolic formulas
Specialized medical foods
State program rules differ widely. Contact your state’s Medicaid office or metabolic clinic to confirm eligibility.
If you are unsure where to start, your metabolic clinic dietitian is often the best first contact.
Working With Pharmacies & DME (Durable Medical Equipment) Providers
Pharmacies and DME providers:
Verify benefits
Handle authorizations
Manage billing paperwork
Place your order with us and we ship it directly to you
If you need assistance locating a pharmacy that supplies low protein foods, contact your metabolic clinic or local children’s hospital pharmacy department. (See Below)
National Resources & Assistance Programs
NPKUA (National PKU Alliance)
The NPKUA Affiliate Council provides support for PKU adults and families navigating insurance coverage challenges for medical formula and low-protein medical foods.
Learn more: https://www.npkua.org/Resources/Insurance-Coverage-101
NORD PKU Patient Assistance Programs
The National Organization for Rare Disorders (NORD) sponsors two PKU Patient Assistance Programs:
Premium & Copay Assistance Program
Medical Assistance Program
These programs may help eligible individuals with insurance-related costs or access to medical nutrition therapy.
EBT / SNAP (Food Stamps)
PKU Perspectives does not currently accept EBT/SNAP benefits directly.
However, some customers may be able to work with a local grocery store or authorized retailer that accepts EBT/SNAP. In certain cases, the store may be willing to special order eligible low protein products for you, and you would pay the retailer directly using your EBT card.
We recommend contacting your local store or state SNAP office to ask about special ordering options and eligibility requirements.
Frequently Asked Questions
Can I get low protein medical foods covered by insurance?
In many cases, yes — especially with proper documentation and state coverage laws.
Do I need a prescription?
Most plans require a prescription and medical necessity documentation.
Does PKU Perspectives bill insurance directly?
In most cases, pharmacies and DME providers manage insurance billing.
Contact a DME (Durable Medical Equipment supply store or pharmacy in your area. (See below.) They will verify your coverage, place orders on your behalf, and handle all insurance billing paperwork.
Can I bill my own insurance directly?
Yes. See steps below
How to Self File an Insurance Claim Form:
1.Contact your insurance plan to determine if low protein foods are covered.
2.Use the medical code S9435(PKU & Homocystinuria). The ICD-10 diagnosis code for phenylketonuria (PKU) is E70.0 if they are covered and to what extent they are covered.
3.Ask if you need to obtain an in-network authorization as most companies are out of network. This can also be called a Gap Exception.
4.You should know of any co-payments, coinsurance payments or deductibles that have not been met on your plan.
5.If you insurance company covers low protein foods, you will need to obtain a prescription and letter of medical necessity from your provider. Submit that to your insurance company with your request for an authorization.Â
8.If you have a self-insured plan they are not mandated to reimburse for low protein foods or medical (metabolic) formulas.
9.You will need our NPI# 1770718025 and Tax ID# 812438654 to put on the health insurance claim form.  Â
• Your insurance company should have a health insurance claim form on their website.
• An itemized bill and receipts. This is important. It will be filed along with the health insurance claim.
• Make a copy of every single document you receive and put it into a file specifically marked for your claim
Find State Programs, Pharmacies & Medical Food Providers
Including Medicaid programs, DME suppliers (Durable Medical Equipment providers), specialty pharmacies, metabolic clinics, and community pantries.
Alabama
Alaska
Arizona
Arkansas
California
CCPKUAD Virtual Pantry/ccpkuad@gmail.com
Myers Medical Pharmacy-Â 260 Hospital Dr Suite 111, Ukiah, California 95482Â (707) 468-1866
Permanente Medical Group 275 West MacArthur Blvd, Oakland, California 94611
Cal Med Pharmacy- (213)413-2343 ext. 271
Colorado-Â https://strivecolorado.org/
Connecticut
Delaware
Florida-Â CMS/Sunshine Health (813)326-0596
Georgia-Â Catoosa Health Department- kimela.evans@dph.ga.gov
Hawaii
Idaho
Illinois- UIC Division of Specialized Care for Children (312) 433-4114
Indiana
Iowa-Â University of Iowa Div of Medical Genetics/ foodformulaprogram@uiowa.edu
Kansas
Kentucky- The Prescription Pad 465 Keene Centre Drive, Nicholasville, Kentucky 40356
For Metabolic Foods and Formulas program call: (502) 564-2154
https://www.chfs.ky.gov/agencies/dph/dmch/cfhib/Pages/kymffp.aspx
Metabolic Clinics In Kentucky
University of Louisville Metabolic Clinic – (502) 588-0850
University of Kentucky Metabolic Clinic – (859) 323-2513
Louisiana
Maine-Â
Maryland
Massachusetts-Â Massachusetts Dept of Public Health-Â pkuprogram@state.ma.us
Michigan
Minnesota- MN-ITS Program. Minnesota Department of Human Services
Mississippi
Missouri –Â Daily Living Home Medical Equipment/ jwtdollc@hotmail.com
Montana
Nebraska- State of NE Metabolic Foods dhhs.newbornscreening@nebraska.gov/(402)-471-9731
Nevada
New Hampshire
New Jersey
New Mexico
New York
North Carolina
North Dakota
Ohio
Oklahoma
Oregon-Â OHSU (Oregon Health & Science University)
Pennsylvania- Glenwood Foods 1614 Division HWY, Ephrata, Pennsylvania 17522
Rhode Island
South Carolina
South Dakota
Tennessee-TN Dept of Health Procurement/ Contact us for local health department contact
Texas-Â Texas DSHS New Born Screeing/NBSBenefits@dshs.texas.gov
Utah
Vermont
Virginia-Â Sentara Health Plans -kjmcgill@sentara.com
Washington
West Virginia
Wisconsin-Â WINNEBAGO COUNTY HUMAN SERVICES/gschiavone@winnebagocountywi.gov
Wyoming- Quality IV Care jenna@qualityivcare.com
Disclaimer
The insurance programs, pharmacies, DMEs, and organizations listed on this page are provided for general informational purposes only. PKU Perspectives does not endorse, guarantee, or assume responsibility for any third-party services or organizations.
While we strive to provide accurate information, we make no representations or warranties regarding the accuracy, completeness, availability, or reliability of the information listed.
Any decision to contact, rely on, or use services from the listed organizations is made at your own discretion and risk. PKU Perspectives is not liable for any outcomes, losses, or damages resulting from the use of third-party services.