Leah, Age 12

We have an excellent private BCBS insurance policy, that we pay monthly for. As great as it is, it will not cover our daughters medical formula. This is a need, that comes accompanied by multiple letters of medical necessity from multiple genetic doctors. Even with the letters, insurance still will not cover it. Diagnosed at birth, our story was as simple as it could be for a child who was born with a rare disease. Until our daughter started having panic attacks at 9 years old due to high homocysteine levels. After multiple discussions with her dieticians and doctors we decided to try HCU Express 15 medical formula. And it worked! Her level came down and her anxiety ceased. Now the hard part of getting insurance to cover it came. I spoke with BCBS multiple times for multiple hours a day. I was told as long as we had a diagnosis code, they would cover it. There is no code that exists for patients that do not have a feeding tube. Believe me, we looked. We had one DME offer to take us on, and after 3 months of no payment from the insurance company, they dropped us. We can not afford $349.75 for 30 packets of formula. This will last us 30 days if we stretch it out. (She should be taking 2 packs daily, but she only does one). Our daughter is 12 now. Having lived with Homocystinuria her entire life. Diagnosed at birth with this very rare disorder and the only one in the state… as well as the last child born in Alabama with the disorder. The insurance company has let us down over and over again. There are so many mandates in place for delicate patients who have medicaid and medicare, but there are none for patients with private insurance? Insurance that we pay good money for? The state (and federal government) mandates newborn screening, but then they don’t help those patients once they’ve been diagnosed. Why is this? There is so much parents and patients have to do just for basic coverage of life saving prescriptions, formula and food. The referrals and the phone calls are all so exhausting, but as much as I hate this for me… I hate this even more for my daughter. Who will be her advocate when I am gone? Will she just give up and no longer adhere to her doctors orders because this is too hard? We have to jump through hoops just for medications and formula, and then it isn’t covered. Why is there no mandate on big insurance companies, or at the very least mandates for basic necessities for states? Having insurance coverage for my daughter’s medical formula would mean less stress. Less time worrying about if she will have to fight for her medical coverage and for her formula, everyday for the rest of her life. It would mean not worrying so much about her health or her levels. It would also mean more vacations. 🙂 She didn’t ask to be born this way. She didn’t ask to have to make life altering decisions for medical care. I pray one day soon, we (the rare disease community) don’t have to. Insurance info: We have an excellent BCBS plan, but it will not cover medical formula or food. We receive help from the manufacturer of her product, Vitaflo. Without it, we could not afford her medical formula and she would struggle to have normal levels. BCBS has let us down over and over again.

The Medical Nutrition Equity Act will provide key support for those Americans who rely on medical foods to survive and thrive.