Elizabeth and Joshua Margulies are taking an appeal of an adverse health claim determination to the court of public opinion.
The Margulies have issued a press release through U.S. Newswire and are trying to organize a letter writing campaign on behalf of their 2-year-old son, Benjamin. The Margulies, New York residents, want the letter writers to ask Aetna Inc., Hartford, to continue coverage for skilled nursing and therapy for their 2-year-old son, Benjy.
Aetna says privacy requirements put it at a disadvantage in this kind of dispute.
“To comply with all privacy regulations, we cannot discuss a specific individual’s health information,” company spokeswoman Cynthia Michener.
At press time, the Margulies had not given Aetna a release form giving the company permission to discuss their son’s case with the NU Online News Service.
The Margulies’ son, Benjy, suffers from infantile Tay-Sachs disease, a condition that prevents the body from producing exosaminidase A, an enzyme that clears substances called gangliosides from the nerve cells in the brain. Children who suffer from the disease lose the ability to see, hear, swallow and move. Most die before the age of 3, and, in the past, all died by the age of 5 or shortly thereafter.
Aetna agreed to pay for Joanne Kurtzberg, a researcher at Duke Medical Center, to give Benjy an umbilical cord blood stem cell transplant, to try to help his body produce exosaminidase A.
Since Benjy had the transplant in 2005, his body has started to produce exosaminidase A, an MRI has shown that the progression of the disease in his brain has stopped, and Benjy has gained the ability to lock his knees and “stand” with help from someone who will support his torso, according to Joshua Margulies, who was interviewed through electronic mail.
A few weeks ago, Benjy said his first word, “ma,” Margulies says.
“He watched my lips as I made the sound, and he struggled visibly to copy me,” Margulies says.
But Benjy suffers from restriction of the airway and difficulty eating. He frequently needs help with clearing his airway, and he is fed through a gastric tube, Margulies says.
Benjy also needs various forms of therapy, such as chest physical therapy, that appear to be helping to keep him healthy, Margulies says.