Aug. 14, 2000
Social Security has canceled a Utah woman's benefits, and Medicaid is likely to also drop the woman's medical insurance.
The action could put the woman's life at considerable risk from a very rare disease.
Science Specialist Ed Yeates has her story.
This is a life threatening paradox for Ashley Hardy. Social Security says she's not disabled. But the reason she's not disabled is because she gets a very expensive treatment every three weeks. Without that treatment, she will become disabled and could surely die.
Ashley Hardy and her Great Aunt Darlene Phillips both suffer from the same disease. Their blood is missing all five elements which allows the immune system to fight off infections and illnesses.
DARLENE PHILLIPS, ASHLEY'S GREAT AUNT: "YOUR IMMUNE SYSTEM IS SET UP SORT OF LIKE SOLDIERS IN LITTLE BATTALIONS. I'M MISSING ALL OF THEM."
Ed Yeates, Science Specialist: "ASHLEY AND DARLENE'S CONDITION IS EXTREMELY RARE. IN FACT, THERE ARE PROBABLY ONLY 45 CASES WORLDWIDE."
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Ashley stays healthy because she gets a $4,000 infusion every 21 days, which replaces the missing soldiers.
Because she's doing so well, Social Security has declared her no longer disabled. That means no more supplemental income. That also means Medicaid will drop her anytime now.
No money for Ashley means no more infusions, unless Ashley's mom pays out of pocket.
LAURA TURNER, ASHLEY'S MOTHER: "EVEN IF I MAXED OUT MY CREDIT CARDS, I COULD BUY MAYBE ONE INFUSION, AND THAT ONLY BUYS THREE WEEKS."
To complicate matters, Ashley has the mental capacity of a fourth grader. Even if she could get a job, as Social Security says she now can, it would provide very little income. And it's doubtful a private insurance company would pick up her expensive infusion costs.
Darlene Phillips gets her infusions free as part of a research project through the National Institutes of Health. But Ashley is not eligible.
Darlene Phillips: "ASHLEY AND I BUY OUR LIVES THREE WEEKS AT A TIME. WE GET AN INFUSION. WE'RE RELATIVELY ASSURED WE CAN LIVE FOR ANOTHER THREE WEEKS. THEN WE GET ANOTHER INFUSION - WE HAVE ANOTHER THREE WEEKS TO LIVE."
Ashley's mom says she doesn't worry about Ashley losing Social Security income, but she is panicking over losing the medical insurance.
