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  1. Opinion

Column: Support bill to help kids with rare, complex conditions

When a journey is long and difficult, early travelers feel a responsibility to help those who must navigate the same terrain.

That's why I went to Washington this month to testify in support of the Advancing Care for Exceptional Kids Act — the ACE Kids Act. I wanted legislators to grasp the life-changing impact of medical facilities for children with complex conditions. I wanted to describe our family's journey and use our gratitude for the Chronic-Complex Clinic at St. Joseph's Children's Hospital of Tampa as a rallying cry for similar medical homes elsewhere.

There is an easier path for exceptional children and their families, but today it's only accessible in a handful of communities. That must change.

On Jan. 7, 1997, Caroline was born with a rare neurological condition known as Alternating Hemiplegia of Childhood. Only 800 people worldwide have the condition, and getting the diagnosis took years of travel to children's hospitals throughout the country.

During the early years without a diagnosis, Caroline would cry for hours. She was unable to eat and even the slightest change in her environment caused seizures and severe pain.

We funded our quest for answers with personal finances because insurance wouldn't cover hospitals outside the Tampa Bay area, nor pay for many of the recommended medications and therapies.

Every American has experienced the frustration of a fragmented health care system, but it is rare for one patient to need the services of 29 different specialty care providers. At one point, we were admitted to a hospital just to facilitate a discussion between physicians. It wasn't until Caroline was 10 that her diagnosis was confirmed.

In addition to seizures, Caroline needs a wheelchair, is developmentally delayed and has cerebral palsy. She has been hospitalized for a full spinal fusion, chronic pneumonia and seizures that are uncontrolled up to 12 hours. Even after the diagnosis, we saw a variety of doctors who each dealt with one aspect of Caroline's care. I carried huge notebooks of her charts everywhere so I could readily produce explanations of her medical history.

But that was before we heard about the Chronic-Complex Clinic at St. Joseph's Children's Hospital.

Today we visit one location where nearly all the specialists she needs are on the same floor. Her pediatricians are also hospitalists, so if she does need hospitalization, she will see the exact same doctor she sees regularly. This familiarity is comforting, but it's also efficient, resulting in faster treatment, less time in the hospital and better outcomes.

The goal of the clinic is to keep Caroline healthy and at home with us. On one of our first clinic visits, her physician suggested a respiratory vest to keep her airways clear. Today we use it at the first sign of congestion. Hospitalization is rare and Caroline is a happy child with an infectious smile and cheerful disposition.

The results are similar for other clinic patients. The number of hospital admissions, emergency visits and the length of hospital stays are nearly half what they were before seeking care at the clinic. There are other important benefits of a medically complex medical home. We have a support network now, a true family of friends who make us feel comfortable, safe and cared for.

Like any legislation, the ACE Kids Act has many components, but there are two that are particularly important to families like ours. The first is to replicate the medical home model at St. Joseph's Children's Hospital. Legislation should give hospitals incentives to coordinate clinical and psycho-social resources and not dilute specialist expertise by pushing care to community pediatricians who are not equipped to handle these rare, complex conditions.

The second is to allow Medicaid to cross state lines. When we were finally approved for the Medicaid Medical Waiver Program, we felt as though someone had thrown us a life ring. We are hard workers who never imagined needing a government program to subsidize private insurance. We are deeply thankful. What a relief that portable financial assistance would have been as we traveled the country in desperate pursuit of a diagnosis for our child.

I would like to thank U.S. Rep. Kathy Castor, D-Tampa, for her leadership on this bill and for being a champion for families throughout Florida. The entire Tampa Bay congressional delegation has steadfastly supported the ACE Kids Act. Support from our local leaders has meant a lot to me and my family throughout this journey.

Tish West is the parent of a Medically Complex Child.