‘This is not acceptable’: Mother fights for access to life-saving medication for daughter

CANCER. PEPPER STACEY. FOR MOST OF NATALIE’S LIFE, HER PARENTS HAVE BEEN TRYING TO FIND A WAY TO BEAT THIS DISEASE. BUT WHEN HER MOM FOUND OUT THE MEDICINE SHE NEEDED COULDN’T BE FOUND AT ANY NEARBY HOSPITAL, IT WAS THE LAST STRAW. FOR BEN SASSE. IN SO MANY WAYS, SHE’S LIKE ANY OTHER TODDLER, BUT IN HER TWO AND A HALF YEARS SHE HAS FOUGHT HARDER THAN MOST HER AGE. WE GOT AN MRI FOR HER AND WHICH WAS THE DAY BEFORE THANKSGIVING AND THAT WAS THE WORST DAY OF OUR LIVES. NATALIE IS DIAGNOSED WITH A RARE FORM OF BRAIN CANCER. YOU LITERALLY JUST GO AND LIKE A FIGHT OR FLIGHT MODE. AND REMOVING HER TUMORS DIDN’T STOP THE SPREAD. SO HER PARENTS ARE TRYING A DIFFERENT TREATMENT. SHE’LL BE STARTING CHEMO THERAPY NEXT WEEK WHERE THEY PUT A PORT IN HER. BUT THEY’RE STRUGGLING TO GET A HOLD OF AN ESSENTIAL DRUG. THAT’S PART OF THE TREATMENT PLAN. HER DOCTORS SAY THERE’S A SHORTAGE OF CARBOPLATIN THE DRUG NATALIE NEEDS. WE DIDN’T KNOW THIS UNTIL YESTERDAY WHEN WE GOT AN EMAIL FROM HER ONCOLOGIST SAYING BLANK CHILDREN’S HOSPITAL DOESN’T HAVE ANY CARBOPLATIN. AND SO YOU’LL HAVE TO COME TO IOWA CITY FOR TREATMENTS UNTIL FURTHER NOTICE. BETTENDORF IS PLANNING TO TAKE NATALIE TO IOWA CITY FOR HER TREATMENT NEXT WEEK, BUT SHE’S CONCERNED THEY MIGHT MIGHT RUN OUT OF SUPPLIES AT SOME POINT DURING THE 15 MONTHS NATALIE WILL RECEIVE WEEKLY CHEMO SESSIONS THIS IS THE ONLY OPTION. UNLESS IT’S. THE OTHER OPTION IS DON’T DO ANYTHING AND THAT’S DEADLY. THAT’S NOT AN OPTION. NOW, SHE’S PUSHING FOR ACTION FROM STATE LEADERS. I DROVE DOWNTOWN LITERALLY WITHIN FIVE MINUTES OF READING THE EMAIL AND WALKED INTO SENATOR ERNST AND GRASSLEY’S OFFICES AND JUST BAWLED MY EYES OUT SAYING, THIS IS NOT ACCEPTABLE. CARL TO MAKE SURE HER LITTLE GIRL GETS THE BEST CARE POSSIBLE. DUFF IS ORGANIZING PETITIONS SHE PLANS ON PRESENTING TO THE STATE LEADERS, HOPING THEY CAN PUSH FOR A SOLUTI

An Ankeny mother is pushing lawmakers to resolve a shortage of her daughter's life-saving cancer medication after struggling to access the essential drug to her daughter's treatment plan.Natalie Duff is a typical toddler, emotional, giggly, interested in exploring everything she can wrap her tiny fingers around and obsessed with watching her favorite television character, Elmo. Unlike most 2-and-a-half-year-olds, she isn't hitting the milestones her pediatrician sets, she hasn't started walking and her speech is limited, because Natalie has a rare form of brain cancer.Doctors have tried removing her tumors through surgery, but cancer cells keep coming back, leading her parents to change treatment plans. On Monday, Natalie will start chemotherapy. But for the treatment to work as effectively as possible, she also needs to take medications. Tuesday, Natalie's mother Lara Duff found out one of those medications isn't available at any nearby hospitals. Hospitals are struggling to find the cancer drug because of a nationwide shortage. Lara Duff is planning to travel four hours every week for the next 15 months to get the treatment. "This is the only option," Lara Duff said. "The other option is don't do anything and that's deadly, that's not an option."Though she can access it now, she's worried the hospital may run out before her daughter's treatment is complete. So, she is pushing leaders to find solutions."I walked into Sen. Ernst and Grassley's office and just bawled my eyes out saying this is not acceptable," Lara Duff said. "They (solved the shortage) with baby formula. I would think that a life-saving cancer drug is just as high a priority."Lara Duff is writing letters and organizing petitions she plans on presenting to state leaders, hoping they can push for a solution to the shortage.

ANKENY, Iowa —

An Ankeny mother is pushing lawmakers to resolve a shortage of her daughter's life-saving cancer medication after struggling to access the essential drug to her daughter's treatment plan.

Natalie Duff is a typical toddler, emotional, giggly, interested in exploring everything she can wrap her tiny fingers around and obsessed with watching her favorite television character, Elmo. Unlike most 2-and-a-half-year-olds, she isn't hitting the milestones her pediatrician sets, she hasn't started walking and her speech is limited, because Natalie has a rare form of brain cancer.

Doctors have tried removing her tumors through surgery, but cancer cells keep coming back, leading her parents to change treatment plans. On Monday, Natalie will start chemotherapy.

But for the treatment to work as effectively as possible, she also needs to take medications. Tuesday, Natalie's mother Lara Duff found out one of those medications isn't available at any nearby hospitals.

Hospitals are struggling to find the cancer drug because of a nationwide shortage.

Lara Duff is planning to travel four hours every week for the next 15 months to get the treatment.

"This is the only option," Lara Duff said. "The other option is don't do anything and that's deadly, that's not an option."

Though she can access it now, she's worried the hospital may run out before her daughter's treatment is complete. So, she is pushing leaders to find solutions.

"I walked into Sen. Ernst and Grassley's office and just bawled my eyes out saying this is not acceptable," Lara Duff said. "They (solved the shortage) with baby formula. I would think that a life-saving cancer drug is just as high a priority."

Lara Duff is writing letters and organizing petitions she plans on presenting to state leaders, hoping they can push for a solution to the shortage.

‘This is not acceptable’: Mother fights for access to life-saving medication for daughter

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