The cost of a better life

The cost of a better life


>>Scott: 4-MONTH-OLD ANTHONY SCHMITZ RECEIVED A GENE THERAPY INFUSION THAT MIGHT SAVE AND CHANGE HIS LIFE.>>Andrea: TONIGHT, THE INCREDIBLE COST OF THE MEDICINE AND HOW LITTLE ANTHONY’S FAMILY FOUGHT FOR HIM TO GET IT.>>GOING INTO THE IV LINE IS ZOLGENSMA. A GENE THERAPY INFUSION THAT COSTS $2.1 MILLION FOR THE ONE-TIME DOSE. THE DRUG IS PROVEN EFFECTIVE TREATING CHILDREN UNDER 2 WITH SPINAL MUSCULAR ATROPHY. INDIANA MEDICAL REJECTED THE TREATMENT BECAUSE HE’S ON A VENTILATOR, BUT GAVE APPROVAL ON APPEAL.>>EARLY DIAGNOSIS IS KEY. DON’T GIVE UP. IT’S NOT A DEATH SENTENCE. KEEP FIGHTING. IT’S A BABY, KEEP FIGHTING.>>THIS IS A GROUP DECISION SAID YEAH, MEDICALLY THAT MAKES SENSE FOR THE CHILD. THE COST FELL BY THE WAYSIDE.>>REPLACES THE FUNCTION OF THE MISSING OR NONWORKING GENE WITH NEW WORKING COPY OF THE HUMAN SMN GENE: WITHOUT TREATMENT, ANTHONY’S LIFE EXPECTANCY WAS ABOUT TWO YEARS.>>NO ONE WANTS TO BURY THEIR CHILD. I WANT TO HIM TO GROW UP WITH HIS BROTHERS.>>ANTHONY RECEIVED TREATMENT THIS MORNING. THE INFUSION TOOK ABOUT AN HOUR. IT WILL BE WEEKS, IF NOT MONTHS, BEFORE DOCTORS KNOW IF THE MEDICINE IS WORKING FOR HIM.>>IF WE CAN MAKE A SMALL DIFFERENCE WHERE WE HELP HIS RESPIRATORY FUNCTION, VENTILATOR, THINGS LIKE THAT, THAT WOULD BE A TREMENDOUS WIN I THINK FOR HIM AND HIS FAMILY.>>FUTURE IS UNKNOWN. I’LL STILL NERVOUS, BUT MORE EXCITED.>>HER SON IS PUMPED FULL OF POTENTIAL NEW LIFE. RICH NYE, CHANNEL 13 EYEWITNESS NEWS.

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