The family of a 6-year-old boy in the United Kingdom is fighting to continue feeding their son cornstarch regularly and for free instead of filling a reportedly risky prescription to aid his rare condition.
The Daily Mirror reported that George Morrison, of Darlington, in northeast England, has glycogen storage disease (GSD). According to the National Institutes of Health (NIH), GSD occurs when the liver can’t control the use of glycogen, an effect that causes a buildup of the sugar in the organ. GSD occurs in an estimated one in 100,000 individuals.
George’s family told the Daily Mirror that giving him four to five 1.06-ounce dosses of cornstarch daily helps prevent dangerous symptoms of GSD, and that without the baking supply, George may suffer liver damage, or fall into a coma and die. According to the University of Florida Glycogen Storage Disease Program, GSD was thought to be fatal until 1971, when scientists discovered cornstarch as an effective therapy because it acts as a slow-releasing form of glucose.
To keep George’s blood sugar regulated, they supplement George’s healthy diet with cornstarch mixed with water. He also receives food through a tube at night.
“If George gets low blood sugar, he will [have a] fit and requires urgent medical help,” Sam Morrison, 43, George’s mother, told the Daily Mirror.
The news website reported that the Morrisons can no longer obtain cornstarch for free through the National Health Service (NHS), Britain’s universal health care program, due to the availability of an alternative drug that has the same effect on GSD. But the Morrisons say that drug hasn’t been tested in children under age 8, so they do not have access to it.
"We have a prescription from the doctor, but no chemist in Darlington will dispense it to me, as it's apparently not on their lists anymore and they won't get money back for it,” Sam Morrison told The Daily Mirror. "It's critical for George, and they're playing with his life— every child in this country is entitled to free prescriptions,” she said.
The Morrisons told The Daily Mirror they must now pay for George’s cornstarch out of pocket— a fact they take issue with due on the basis of principle, not cost. The cornstarch costs them about 3 euros, or about $3.40, per week.
"This is just another hurdle we have to overcome. Why can't they just make it easier for us and put [the cornstarch] on prescription?" Sam Morrison told the news website. “We are all for the new drug, but don't want him to have it while it's not been tested for children. We are completely happy with [cornstarch] and know that it's safe."