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Highmark Blue Shield (Pennsylvania): Provide insurance coverage for my son's prescription formula

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Ryan is three years old and has a rare and chronic disease called Eosinophilic Esophagitis (also known as EoE).  Because of this disorder, his white blood cells treat food proteins like an infection and attack his esophagus. This leads to chronic inflammation, pain, difficulty swallowing, GI issues, refusal of food, malnutrition, poor growth, sleeping difficulties, and a whole host of other symptoms. A piece of cake, a bowl of rice, even a single carrot stick can make kids like Ryan violently ill. If untreated, they can suffer life-threatening consequences.  Ryan sees a team of specialists who have been working hard to treat him for the past year.  Every other month, Ryan must endure an invasive endoscopy/biopsy under anesthesia at the hospital to see if the limited food he is allowed to have is safe. There are only 8 foods he can eat safely right now. His primary caloric intake comes from a special hypo-allergenic prescription formula (or “medical food”) to make up for food he can't have. This formula is highly expensive, and some insurance companies (including Ryan's) refuse to pay for it.   Ryan has undergone numerous tests and these doctors have followed best practice protocols, including medication management and elimination diets, which were unsuccessful.  The elemental formula (“medical food”) has been the only treatment that has helped reduce the inflammation in his esophagus, improved his symptoms, and allowed him to gain weight.  

Ryan's parents submitted the claim to Highmark Blue Shield in December for this prescription formula and they denied coverage as they deemed the formula/medical food as "not medically necessary."  However, the team of specialists working with Ryan strongly disagrees with Highmark’s statement that this is not necessary.  In addition, published medical articles indicating best practice to treat this disorder which has otherwise been resistant to other courses of treatment also indicates that an elemental diet of this prescription formula is medically necessary for treatment.  

Ryan's doctors and parents have appealed to their insurance company several times, but Highmark continues to deny coverage utilizing numerous “excuses” for why they will not cover this formula – Ryan’s medical food and sole source of nutrition.  Because Ryan cannot wait for Highmark to fund this, Ryan's parents have had to pay out of pocket for this formula because it is medically necessary for Ryan's health and recovery.  Formula is about $35 per can, and Ryan’s diet requires one can about every 1.5 to 2 days.   Doctors estimate that he will need to be on this formula for at least one to three years. Ryan's parents simply cannot afford how much this costs when not covered by insurance but are willing to do whatever it takes to get him the care he needs.   It has been challenging and heart-breaking watching Ryan’s struggles physically, socially, and emotionally in not being able to eat like a typical three year-old, and now, lack of insurance coverage has placed an unnecessary additional stressor and financial burden on their family. Unfortunately, their story is not the only one of its kind.

Many states mandate coverage of elemental formulas so that insurance companies cannot do this to children; unfortunately, Pennsylvania is not one of these states.  In our great country, no child should be denied the care he/she needs to survive.  

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