Make All Insurance Companies Cover Specialized Formula for Infants/Children

The Issue

Our beautiful daughter Eleanor Jane Trinh was born on October 25, 2015 with a severe cow's milk protein allergy. Five days after she was born, Eleanor started bleeding internally which in turn caused her to have bloody stool. She lost 23% of her birthweight, became extremly dehydrated and would not feed. After three trips to the ER, she was admitted to the NICU at the Misericordia Hospital. She spent 9 days in the hospital, hooked up to IV's, had a feeding tube inserted and had more xrays, tests run and ultrasounds than most people in a lifetime. Eleanor was put on a formula called Nutramigen and I went dairy and soy-free so that she could continue to breastfeed. Eleanor seemed to improve, her bloodwork started to come back normal, the bleeding had stopped and we got to go home on November 18th, 2015. Unfortunately, Eleanor started to bleed again the day after we got out of the hospital. She was readmitted to the NICU at the Misericordia Hospital on November 23rd, 2015 after gaining little to no weight and cutting down on her feeds again. This time she was switched to a different formula called PurAmino. I sadly had to stop nursing her as even though I was being meticulous with what I was eating, something was still causing a reaction for Eleanor. It was a heart-breaking decision but one I felt was best for Eleanor's health. After several days on PurAmino, the blood cleared up and Eleanor started to gain weight again. She was discharged from the hospital 5 days later weighing above her birthweight for the first time since she was born! The new formula seems to be working!The downside to the new formula, PurAmino, is that it is not covered by our insurance company, ASEBP (Alberta School Employee Benefit Plan). And it has a hefty price tag of approximately $60 a can. Eleanor at the moment is going through 2 cans a week. So, $120 a week, times 4 is $480 a month! The costs will only increase as Eleanor grows. In a year, we are looking at a cost of approxiately $7000. There have been other cases of other babies with similar allergies/conditions that fought their insurance company's and won. Their insurance companies changed their policy to include the specialized formula prescribed by their doctor so that these families did not have to worry about the expense and be able to provide their child with the necessity of a food that will allow them to thrive. We are appealing the policy set by ASEBP that states it does not cover infants formula or any over-the-counter product under their coverage. Being that PurAmino is by prescription and has to be ordered through the pharmacy, we feel that it should meet the criteria and be included in their coverage. We thank anyone who signs this petition and/or shares our story. We feel that the more awareness our story brings, the more chance there is of getting not only our insurance company to change their policy and include special formula's in their coverage, but ALL insurance companies to include such formula's in their coverage. The stress and worry of having a sick child is enough for any family to go through. The last thing anyone needs to be worrying about is how they are going to afford to feed their child what they need due to the cost of the required formula. Feeding Eleanor PurAmino is not by choice. We tried many other formula's and breastfeeding on a no dairy and soy diet. This is the only formula that will help Eleanor to thrive and live a happy, healthy first year of her life. It is a necessity. One we did not choose. But one we are thankful to have found.Richy, Natalie, Ryker, Sophia and Eleanor Trinh
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The Issue

Our beautiful daughter Eleanor Jane Trinh was born on October 25, 2015 with a severe cow's milk protein allergy. Five days after she was born, Eleanor started bleeding internally which in turn caused her to have bloody stool. She lost 23% of her birthweight, became extremly dehydrated and would not feed. After three trips to the ER, she was admitted to the NICU at the Misericordia Hospital. She spent 9 days in the hospital, hooked up to IV's, had a feeding tube inserted and had more xrays, tests run and ultrasounds than most people in a lifetime. Eleanor was put on a formula called Nutramigen and I went dairy and soy-free so that she could continue to breastfeed. Eleanor seemed to improve, her bloodwork started to come back normal, the bleeding had stopped and we got to go home on November 18th, 2015. Unfortunately, Eleanor started to bleed again the day after we got out of the hospital. She was readmitted to the NICU at the Misericordia Hospital on November 23rd, 2015 after gaining little to no weight and cutting down on her feeds again. This time she was switched to a different formula called PurAmino. I sadly had to stop nursing her as even though I was being meticulous with what I was eating, something was still causing a reaction for Eleanor. It was a heart-breaking decision but one I felt was best for Eleanor's health. After several days on PurAmino, the blood cleared up and Eleanor started to gain weight again. She was discharged from the hospital 5 days later weighing above her birthweight for the first time since she was born! The new formula seems to be working!The downside to the new formula, PurAmino, is that it is not covered by our insurance company, ASEBP (Alberta School Employee Benefit Plan). And it has a hefty price tag of approximately $60 a can. Eleanor at the moment is going through 2 cans a week. So, $120 a week, times 4 is $480 a month! The costs will only increase as Eleanor grows. In a year, we are looking at a cost of approxiately $7000. There have been other cases of other babies with similar allergies/conditions that fought their insurance company's and won. Their insurance companies changed their policy to include the specialized formula prescribed by their doctor so that these families did not have to worry about the expense and be able to provide their child with the necessity of a food that will allow them to thrive. We are appealing the policy set by ASEBP that states it does not cover infants formula or any over-the-counter product under their coverage. Being that PurAmino is by prescription and has to be ordered through the pharmacy, we feel that it should meet the criteria and be included in their coverage. We thank anyone who signs this petition and/or shares our story. We feel that the more awareness our story brings, the more chance there is of getting not only our insurance company to change their policy and include special formula's in their coverage, but ALL insurance companies to include such formula's in their coverage. The stress and worry of having a sick child is enough for any family to go through. The last thing anyone needs to be worrying about is how they are going to afford to feed their child what they need due to the cost of the required formula. Feeding Eleanor PurAmino is not by choice. We tried many other formula's and breastfeeding on a no dairy and soy diet. This is the only formula that will help Eleanor to thrive and live a happy, healthy first year of her life. It is a necessity. One we did not choose. But one we are thankful to have found.Richy, Natalie, Ryker, Sophia and Eleanor Trinh

The Decision Makers

Hon. Sarah Hoffman, Minister of Health
Hon. Sarah Hoffman, Minister of Health
Jennifer Carson, CEO of Alberta School Employee Benefit Plan
Jennifer Carson, CEO of Alberta School Employee Benefit Plan

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Petition created on December 1, 2015