I’m a 30, soon to be 31 year old female who was diagnosed with PKU at 1 month old and currently reside in New Jersey. Growing up, formula was always covered by my mother’s insurance since that’s how it is until a certain age. However, the food aspect of the diet was always a partial cover of payment through the insurance. Eventually, around age of 6, both my identical twin sister and I came off of the diet (just the food and continued with formula) due to us not enjoying texture/taste of food products. Being my mother’s insurance only covered partial payment, a max of $250, and having to put out for the rest, she was eventually putting out money on products we weren’t eating. We decided to tell her we no longer wanted the foods from the low protein company we were purchasing from. My sister and I continued to drink the special formula as it helped tremendously with keeping our blood levels in range. By the time I reached child bearing age, I still had NO food coverage, only formula. When it comes down to it, a woman who becomes pregnant and has PKU, she must adhere to a STRICT low protein diet, whether that is from low protein foods from a medical based food company or strictly fruits and vegetables from a supermarket along with taking in the special formula. At the time I fell pregnant, I was only taking in my formula, as I had no food coverage. My doctor and nutritionist both tried getting me food coverage through my current insurance company at the time of my first pregnancy, but went without any medical foods as the insurance company did not approve any coverage. The battle with insurance companies went on as I had my second and third pregnancy. All of my pregnancies, especially my second one, were a struggle because I had no access to my medically necessary low protein foods. All three of my babies were born with muscle tone conditions and microcephaly and all have developmental disabilities, one of my children worse off then the other two. I did eventually become eligible for low protein medical food coverage back in May of 2017, exactly 6 months after I had my last child, due to my nutritionist being able to contact someone who knew the correct terminology when it came to speaking to insurance companies. However, I was EXTREMELY thankful that I finally had medical necessary low protein food coverage, but it should have been approved before any of my pregnancies as doctors I am sure make it extremely clear to the necessary individuals working for insurance companies that this is VITAL – it’s as if this is the air we PKU individuals breathe and without it, we cannot survive. Sharing my story, I am not hoping to get coverage as I have coverage, but sharing because the more these stories get out, the more others continue to be aware of how important it is that PKU individuals receive the coverage for medical nutrition (food and formula). We have a right to live normal , healthy and happy lives just like any other individual and with that being possible, WE NEED ACCESS TO FULL COVERAGE FOR MEDICAL NUTRITION.
I am currently receiving Amerigroup through Medicaid. I have been receiving formula (Phenylade40) since birth. I have had coverage through my mom’s insurance and finally once I was eligible for state insurance, it was later switched to my insurance. No issues with that since then. The food coverage however, was only partial payment through my mom’s insurance. Once I was switched over to Medicaid insurance, my food was no longer covered and since then had to be purchased out of pocket any time I needed a new shipment for the month. It wasn’t until May 2017 that my doctor and nutritionist found someone who can help me become approved for medical necessary low protein foods. Since then, I have had coverage for low protein foods.