Letter: Kaycee Childress, Ashburn

Editor: I am a fierce advocate for those who cannot always represent themselves.  U.S. Senators and Representatives need to know that medically-necessary prescription nutrition saves lives, and its availability and insurance coverage are paramount.

I have faced this issue personally and, as executive director of the Children’s Medical Nutrition Alliance (CMNuA), I get calls and emails 24/7 from parents who have cabinets and refrigerators full of food that their children cannot eat. Instead, these special children rely on medically-prescribed formula for their entire or partial diet. Some out grow their conditions while others do not.

Those of us who are part of the Patients and Providers Coalition for Medical Nutrition Equity fought for S. 1194 and H.R. 2587, the Medical Nutrition Equity Act, in the recently-adjourned Congress. We secured bipartisan support from 35 Representatives and four Senators who put their names on legislation that would help all Americans afford life-sustaining medical nutrition, regardless of the manner in which it is consumed.

The 116thCongress needs to address this important issue sooner than later. There are solid reasons for the enactment of the Medical Nutrition Equity Act. To date, more than 35 states have adopted laws providing some level of coverage. However, that coverage is highly variable and why a federal floor of coverage is desperately needed.  States like the Commonwealth of Virginia where I live have no coverage, unless a family qualifies for Medicaid, SNAP or CHIP.

Further, Congress added full coverage for Tricare military families in the 2016 National Defense Authorization Act and has sustained it into 2019.

The stories of children and families impacted by the need for life-saving medical nutrition speak volumes. I want to share the stories of a few of the families who contacted me through CMNuA as a resource of last resort:

Christianis 14 months old and struggles with MSPI reflux colic aspirations. It is so bad that Christian even stopped breathing in his sleep and has suffered with a constantly blistered behind. After trying all types of formula – from milk, to soy, to hypoallergenic, Christian’s doctor finally prescribed elemental formula – But Christian’s family, despite having insurance, couldn’t afford this life sustaining formula. His challenges are ongoing and he is still unable to have any traces of milk but on medial nutrition Christian is now happy and thriving.

Emmahas a severe cow milk allergy and acute eczema. She is on prescribed elemental infant formula, and when her dad contacted us he was desperate. Emma’s mother is a stay-at-home mom trying to manage Emma’s medical issues. Dad has a solid job, and he pays for expensive health insurance. However, despite the severity of Emma’s reactions and repeated appeals to insurance representatives with lengthy doctor explanations of need and intervention, Emma’s parents’ insurance refuses to cover the formula that she needs to be healthy and pain free. Her parents are struggling to pay the mortgage and keep her fed. CMNuA was so happy to be able to ship formula.

Zach is a 23-month-old boy who has FPIES and multiple food allergies.  Zach only has one safe food – roast from a local farm, and the rest of his nutrition comes from infant formula. When Zach’s dad lost his job, his family reached out to CMNuA. His mom writes “Before reaching out to your organization, we spent many nights crying about how we would be able to continue to purchase Zach’s formula and keep him healthy. Not only are you providing formula, but you are providing nutrition, you are providing a chance for life.”

These children and so many like them need medical nutrition to grow and develop normally and without severe pain and suffering. Some like my daughter, who had no safe foods until age 2, need the formula just to survive!

For these compelling reasons, you can count on my ongoing advocacy for these and other Americans who rely on medical nutrition daily.

Kaycee Childress, Ashburn

A Loudoun County mother of five whose children needed prescribed medical nutrition to survive early in life, Kaycee Childress is executive director of Children’s MAGIC U.S. and Children’s Medical Nutrition Alliance. She can be reached at kchildress@cmnua.org

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