Health Care Story of the Week - 1/6/10

Keith and Dianne Warren always thought they would be parents of two or three children. But when their daughter Alissa was born in 2005 with a rare genetic condition called sacral agenesis (aka caudal regression syndrome), they decided not to have any more children. Instead, Keith and Dianne have poured all of their love into making sure Alissa has the best life possible despite her physical disabilities.

Because of her genetic condition, four-year-old Alissa lacks several bones in her lower back and bottom, her legs are permanently crossed, and she has clubbed feet. She has kidney reflux and chronic bowel issues. She only weighs 20 pounds and cannot walk. Despite her physical limitations, Alissa gets around in her own special way just as well other children her age. She attends school, and she is a very smart child who loves life. She’s a happy and active little girl who loves to sing and dance. You can see a video of Alissa singing and dancing.

The Warren’s both maintain a full time job, and Alissa is on her dad’s insurance plan. But it doesn’t cover everything that’s needed. TennCare has been Alissa’s secondary payor, kicking in when the private plan would not cover specialty care needed to treat her rare condition. The Warren’s monthly income has always been sufficient, but now, they worry about crushing medical bills, since Alissa is being dropped from TennCare. Along with thousands of other children with disabilities, Alissa will be cut from the program in the next few weeks. After talking with the state human services office, the Warren’s believe that the only way Alissa can qualify for TennCare again is if the family incurs more than $3,500 in medical bills. Forcing families to run up thousands in medical debt in order to keep their health care means that more families will face financial ruin. Medical debt already is the leading cause of bankruptcy in the nation. For other families, it may mean that children simply go without needed care.

The Warren’s have called state legislators, shared Alissa’s story with friends, and worked with a client advocate at the Tennessee Justice Center. They are determined to make sure their only child gets the health care she needs. The Warren’s story is typical – private insurance plans don’t cover everything that’s needed. While more than 45 million Americans are uninsured, tens of millions more, including Alissa Warren, are underinsured.