Medicaid cuts would be devastating

When our son, Collin, was diagnosed with cystic fibrosis shortly after his birth in July 2016, my wife and I were shocked. Our first son, Peter, had been born two years earlier completely healthy. We knew little about the disease, let alone how to take care of our newborn son.

Cystic fibrosis is a genetic disease that causes a thick buildup of mucus in the lungs, pancreas and organs. In the lungs, the mucus can clog the airways and trap bacteria leading to lung infections, extensive lung damage and even respiratory failure. In the pancreas, the mucus prevents the release of digestive enzymes that allow the body to break down food and absorb vital nutrients.

{mosads}Our biggest struggle is getting Collin the nutrients he needs to gain weight. With every meal, Collin takes enzymes and vitamins and because he is only 7-months old, this requires pouring the contents of the enzyme capsules onto a spoonful of applesauce covered in salt, and feeding this to him before he can eat anything. Twice a day, Collin also takes fat-soluble vitamins and an acid reflux medicine to improve fat absorption.

Each day, we follow a strict routine to help prevent the progressive lung damage caused by the disease. In the morning, we spend 30 minutes giving him his chest compression therapy in order to loosen up and remove the build-up of mucus in his lungs. At bed time, Collin gets his nebulizer treatment (a 20 minute ordeal) and another round of chest percussion before story time and his bath.

To prevent Collin from being exposed to germs that could harm his health, we’ve had to restructure our lives and skip many activities that we used to do as a family. This includes attending church or family gatherings because there might be a chance of someone being sick or it might be too difficult to give Collin his treatments.

As a full-time PhD student, I rely on Medicaid to help pay for Collin’s treatments while I finish my education. To cover our finances, I also work part-time as a fitness instructor and my wife works from home while she cares for our kids.

Medicaid has been an invaluable resource to keep Collin healthy. The program, so far, covers everything related to Collin’s care. This is especially helpful, as Collin already needs medicines that cost hundreds and even thousands of dollars per year. Pulmazyme, an inhaled medication that thins and loosens mucus in the airways, alone costs about $6,000 per month.

I don’t know what we will do if Congress makes cuts to Medicaid. The program makes it possible for Collin to access the specialized care he needs. Without Medicaid, I’d likely have to drop out of school due to the emotional and financial strain of caring for an infant with such demanding and expensive treatments. This is a scary reality, as I’m earning my degree to build a better future for our family.

As Members of Congress consider changing the way that Medicaid is administered and financed, I ask that they think about Collin and the tens of millions of vulnerable Americans who could lose access to vital care as a result of these cuts. Their decisions around Medicaid will directly affect children, seniors and people with disabilities. Please don’t take away our ability to access life-saving treatments.

JJ Whicker is PhD student and has been working closely with the Cystic Fibrosis Foundation to share his story about how Medicaid has benefited his family. 

The views expressed by this author are their own and are not the views of The Hill.