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Insurance HelpWe received notification that our low protein foods will be covered by our Blue Cross/ Blue Shield and I would like to help others through this process with their own insurance. I would like to thank Cambrooke Foods for their guidance and Christina from Illinois for her guidance. I asked for reimbursement for low protein foods and was denied. I did appeal as soon as I got the denial in writing and won the appeal. I don't know how the process will work with individual insurances but it is worth the time it takes. I have listed the documents that I included with my appeal and a way to obtain the information for each one. I wish everyone success with their companies! The Appeal LetterDear Sir or Madam, 2/22/05 I am writing to appeal the recent decision by Blue Cross/Blue Shield to deny the coverage of low protein foods for my daughter Bethany. Bethany has Classic Phenylketonuria (PKU) and will require this diet for her lifetime in order to reach optimal health. I am enclosing the National Institute for Health Consensus Report from Oct of 2000 which outlines the need for treatment for lifetime. The treatment for this condition consists of a “medical food” which is her protein/phenylalanine modified formula, and her low protein foods. Her medical food (formula) is provided by the State of Michigan Newborn Screening Program from monies allocated for the follow up treatment of diagnosed individuals. Medical food (formula) will be provided for her through her child bearing years from this program. In addition, they also cover the cost of the home monitoring. Home monitoring includes weekly or bimonthly testing of Bethany’s blood levels. The specimen is collected by us and sent to the state lab for results, currently every other week, and more often if she is ill. There is not a charge to Blue Cross/Blue Shield for this service, as this too is provided by the Newborn Screening monies. I have enclosed a comparison of regular foods vs. low protein foods and the amount of phenylalanine in each, as well as a cost comparison of each. As you can see by these examples, it will be necessary to purchase the low protein foods in order to keep her blood levels in the optimal range. Bethany currently tolerates 375mg/day of phenylalanine by foods and this adds up very quickly when regular, store bought foods are given. Hence the need for the low protein food products. Even fruits and vegetables have phenylalanine that must be counted in her daily intake. There are only a few companies who do handle the low protein food products and none of them are located in Michigan. These products have to be ordered and usually require a shipping charge. I have also included an outline of all of the current coverage for medical foods and low protein foods for each state, as provided by the Cambrooke Foods website. The diagnosis code for PKU is 270.1 and the billing code used by Cambrooke Foods is S9435. I have watched my daughter grow into a healthy, smart, normal functioning 4 yr old with the use of the combination of medical food (formula), low protein foods and frequent home monitoring. I would ask that you reconsider coverage for the cost of these foods for her. Thank you.
Sandy & John LaPrad (street address) Midland, Mi 48640 (insurance #)
Enclosed: NIH Consensus Report Cambrooke Foods state by state coverage March of Dimes Fact Sheet Cost comparison Phe comparison Letter of Medical Necessity Invoices: TC, CBF, Dietary Specialties Foundation for Blood Research-PKU National PKU News- Fall 2003 Provider Fact Sheet PKU Parent Fact Sheet
Enclosures- Where you can find them: NIH Consensus Report-http://consensus.nih.gov. I did not send the whole report but just the summary. Cambrooke Foods- www.cambrookefoods.com . Click on the insurance section. I sent the whole page outlining states coverage limits. March of Dimes Fact Sheet- www.modimes.org and search for pku fact sheet or go to http://www.marchofdimes.com/professionals/681_1219.asp - this is 6 pages long Cost Comparison- Prices of Low “Phe” Food vs. Regular Food
Spartan macaroni & cheese 3 for $1 Low protein $4.70 per pk Pretzels .99 EnerG pretzels $1.79 for 2.65 oz Elbow pasta .89 Low protein average- $3.29 per 1# Keebler wafer cookies .33 for 8 cookies Low protein $2.59 for 12 Hershey’s chocolate syrup $2.49 “Almost” chocolate sauce $7.59 Hershey mini bars $1.99 per bag Chocolate Cha-chas $13.00 per doz Cinnamon raisin bread $2.39 per loaf Low protein $12.00 per loaf Bisquick $2.69 for 40 oz. Welplan $6.55 per 16 oz Sliced cheese $1.99 Whitehall cheese $2.59 per pack Minute rice $1.89 for 396 grams Imitation rice $9.99 per 500 grams Peanut butter $1.99 for 1# Low protein $7.89 per 1# Jello .89 per box Prono $1.50 per pack Shredded mozzarella cheese $2.19 for 2# Low protein $7.99 for 2# Cinnamon raisin bagels $1.29 for 6 Low protein $5.49 for 6 Milk $2.19 per gallon Formula- app. $12-14,000 per year
Phe in foods- Phenylalanine in foods- in mgs
Regular foods Low Protein foods
Elbow macaroni 2.31mg/gm Low pro macaroni 0.1mg/gm McDonald’s fries 1.3mg/gm Ore Idas .88mg/gm Nabisco graham crackers 19mg/square Low pro 1mg/square Strawberry ice cream 1.69mg/gm Rice Dream .23mg/gm Keebler wafer cookies 18mg each Low pro 1mg/cookie Medium egg 180mg each Egg replacer free Jif peanut butter 15.25mg/gm Low pro p.butter .23mg/gm American cheese slice 142mg each Whitehall 37mg/slice Flour 5.23mg/gm WelPlan 0.05mg/gm Waffle cone 45mg each Low pro cone free White rice 1.10mg/gm Low pro rice 0.4mg/gm Cinnamon raisin bread 109mg/slice Low pro bread 14mg/slice Butter 6mg/tbsp Parkay free Catsup 7mg/tbsp Catalina dressing free Pretzels 23mg/3 pretzels EnerG pretzels 42mg/1oz Spaghetti O’s 154mg/1/2 cup Low Pro OHZ 29mg/1Cup Cool whip 1mg/gm RichWhip free Kraft Mac & Cheese 8.14mg/gm Low pro mac & cheese 0.6mg/gm Diet Coke 100mg/can Reg coke free
Some others:
Beef 10.64mg/gm Oreo cookie 26mg each M & M’s plain 22mg/10pieces Pringles 16mg/3 chips Bananas 0.38mg/gm Apples 0.05mg/gm Mushrooms 0.83mg/gm Corn 1.22mg/gm Peas 2.0 mg/gm Potatoes 0.88mg/gm Carrots 0.22mg/gm Beets 0.48mg/gm Popcorn 6.0mg/gm Splenda free Sunny Delite free
Letter of Medical Necessity- This will come from the Metabolic Clinic at Children's Hospital
Foundation for Blood Research- www.frb.org - go to the search and put in PKU. Click on the #2 called Scene 1. This is 2 pages long. National PKU News Fall 2003- www.pkunews.org. I sent the front page article "Collaborative Study Shows Why Adults Need to Remain on the Diet". Provider Fact Sheet- Contact The Metabolic Clinic at Children's Hospital for a copy Parent Fact Sheet
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Sandy LaPrad
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