A 15 MINUTE DRIVE. A FAMILY FROM SAINT JOSEPH, MISSOURI, IS SEARCHING FOR ANSWERS AFTER THEIR INSURANCE COMPANY DECLINED TO COVER MEDICINE FOR THEIR NEWBORN TWINS WITH A RARE CONDITION. KMBC NINE NEWS DENNIS EVANS IS AT SAINT LUKE’S HOSPITAL AFTER SPEAKING WITH THOSE PARENTS. IT WAS JUST DAYS AFTER THE TWINS WERE BORN HERE AT SAINT LUKE’S HOSPITAL THAT THROUGH TESTING, THE FAMILY FOUND OUT THAT THE BOYS SUFFERED FROM A RARE MUSCULAR CONDITION. ONE THAT WITHOUT THE PROPER TREATMENT AND MEDICATION, WOULD LEAD TO A LIFE EXPECTANCY OF LESS THAN TWO YEARS. THE CONDITION IS CALLED SPINAL MUSCULAR ATROPHY. IT’S A GENETIC CONDITION THAT AFFECTS NERVES AND MUSCLES, CAUSING PROGRESSIVE WEAKNESS AND WASTING AWAY. THE TWINS, ELI AND EASTON, WERE DIAGNOSED WITH THE CONDITION JUST DAYS AFTER THEY WERE BORN. THE PARENTS SAY THEIR COMPANIES INSURANCE HAD JUST CHANGED COVERAGE AND THE MEDICATION NEEDED TO TREAT THE BOYS WOULD NOT BE COVERED. EVEN THEIR APPEAL WAS DENIED AS LEAVING THE FAMILY DESPERATE IN THEIR SEARCH TO FIND HELP. AND TIME IS OF THE ESSENCE. WITH THIS, IT’S VERY CRUCIAL SINCE THEY DON’T HAVE SYMPTOMS AS OF RIGHT NOW, IT’S BEST FOR THEM TO RECEIVE THIS TREATMENT NOW BECAUSE ONCE SYMPTOMS START, IT’S UN REVERSIBLE. UM, SO TIME IS OF THE ESSENCE, BUT WE ARE STILL TRYING TO EXPLORE ALL OF OUR OPTIONS. THERE IS SOME GOOD NEWS FOR THE REED FAMILY. AFTER A MONTH IN THE NICU, THEY ARE FINALLY ABLE TO TAKE THE BOYS HOME TODAY WHILE THEY SAY THEY WILL CONTINUE TO PRESS TO GET THAT MUCH NEEDED LIFE SAVING MEDICATION, THEY ARE JUST HAPPY THAT THEY WILL FINALLY BE ABLE TO GET THEIR BOYS HOME AND OUT OF THE HOSPITAL AT SAINT LUKE’S. DENNIS EVANS KMBC NINE NEWS. THANK YOU DENNIS. THE FAMILY IS APPLYING FOR A MEDICARE BENEFITS AND WILL CONTINUE TO RECEIVE TREATMENTS AT CHILDREN’S MERCY HOSPITAL. YOU CAN FIND T
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Family desperate for help after newborn twins with rare condition are denied life-altering treatment
KMBC 9 News Reporter
A family in St. Joseph says they desperately need help after discovering that their newborn twins were diagnosed with a rare condition that their insurance company has denied medical coverage for.The condition is one that, without proper treatment and medication, means their life expectancy is less than two years.The condition is called Spinal Muscular Atrophy. It’s a genetic condition that affects nerves and muscles, causing progressive weakness and wasting. The twins, Eli and Easton Reed, were diagnosed with the condition just days after they were born at St. Luke’s Hospital.Their parents say their company insurance changed terms just one day after the boys were born, removing coverage for the Zolgensma medication needed to treat the rare condition.The gene therapy is a one-time infusion that costs anywhere between $1 and $2.5 million dollars without insurance coverage. Even their appeal was denied, leaving the family in search of help.“Time is of the essence with this. It is very crucial that since they don’t have symptoms as of right now,” the twins’ mother, Amanda Reed, told KMBC on Monday. “It's best for them to receive this treatment now. because once symptoms start, it's irreversible. So, time is of the essence, but we are still trying to explore all of our options.“There is good news from St. Luke's: after a month in the NICU, The family is heading home. They say they will continue their quest for the life-saving medicine, but in the meantime, they are just happy to get their boys out of the hospital.The family has started a GoFundMe to help support their efforts to pay for the expensive medication and NICU expenses .
SAINT JOSEPH, Mo. —
A family in St. Joseph says they desperately need help after discovering that their newborn twins were diagnosed with a rare condition that their insurance company has denied medical coverage for.
The condition is one that, without proper treatment and medication, means their life expectancy is less than two years.
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The condition is called Spinal Muscular Atrophy. It’s a genetic condition that affects nerves and muscles, causing progressive weakness and wasting. The twins, Eli and Easton Reed, were diagnosed with the condition just days after they were born at St. Luke’s Hospital.
Hearst Owned
Their parents say their company insurance changed terms just one day after the boys were born, removing coverage for the Zolgensma medication needed to treat the rare condition.
The gene therapy is a one-time infusion that costs anywhere between $1 and $2.5 million dollars without insurance coverage.
Even their appeal was denied, leaving the family in search of help.
“Time is of the essence with this. It is very crucial that since they don’t have symptoms as of right now,” the twins’ mother, Amanda Reed, told KMBC on Monday. “It's best for them to receive this treatment now. because once symptoms start, it's irreversible. So, time is of the essence, but we are still trying to explore all of our options.“
Hearst Owned
There is good news from St. Luke's: after a month in the NICU, The family is heading home. They say they will continue their quest for the life-saving medicine, but in the meantime, they are just happy to get their boys out of the hospital.
The family has started a GoFundMe to help support their efforts to pay for the expensive medication and NICU expenses .
