As a nurse April, is no stranger to Chronic Disease and how Chronic Disease affects a patient or families. April and her family are experiencing Chronic Disease that affects not only her and her husband, but also their three children.  Looking at their picture you would never guess that this family has fought a battle that affects each one of them. 

April’s children are covered by private health insurance and the Tax Equity and Fiscal Responsibility ACT (TEFRA). TEFRA is a Medicaid Program that can help families with children under the age of nineteen who have a disability and receive care in their home rather than in an institution1. The premiums for the program are based on a sliding fee scale. In some instances, families pay nothing. April’s family is on the sliding fee scale. 

April began this medical journey with her oldest son who was diagnosed with Juvenile Arthritis. We seldom think of a youth having arthritis, but Juvenile Arthritis (JA) affects children under the age of sixteen. Most JA cases are autoimmune or autoinflammatory diseases. It affects the immune system which makes it difficult to fight off viruses and releases inflammatory chemicals that attack healthy cells and tissue. In most cases this causes joint inflammation, swelling, and tenderness. JA can also affect the skin and internal organs. 

April’s sixteen year-old son was diagnosed with JA in 2019. At one time, he could not walk. This disease led him to become depressed. He wanted to do all the things that other kids his age was doing including playing sports and other activities. Over time, his condition has improved to the point where he can now play sports and take part in other extracurricular activities.  This dramatic change is due to a $7,299 a month injection known as Humira that he receives twice a month. 

April’s ten year-old daughter has chronic Sinus Infections. Her nasal tissue has been shaved down to decrease the infections and allow her to breathe easier. She has had multiple surgeries. 

Her two-year-old is a preemie. She was born two months early. She has been diagnosed with Dysphagia which causes difficulty with swallowing. One can only imagine what this baby must deal with each time she tries to eat or drink. This disease would be difficult for an adult, but even more for such a young child. She is unable to have regular drinks that many children take for granted. She is unable to enjoy what so many kids love such as apple juice or other juices. Mom says that her liquids must be thick.  

Having only private insurance would leave this family with a huge balance of medical debt. April applied for TEFRA and was approved over a year ago. Without TEFRA, life would be financially difficult for this family of five. Added to the medical expense of her children are those expenses for medications for herself and her husband. The monthly amount that she must pay for TEFRA is a small hole in the bucket compared to what she would have to pay without TEFRA. Although it would be great if her children did not have medical conditions, having medical assistance for the enormous medical bills makes life much easier for this family and they are thankful. Her kids are normal, active kids with medical conditions. They may have been thrown a curve ball, but Mom and Dad continue to make sure that they go beyond first base and make a homerun. This is a Strong Family!