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.

Benjy has not yet exhausted his annual or life time coverage limits, Margulies says.

But Aetna told the Margulies family it would stop paying for skilled nursing because it believes skilled nursing is not medically necessary.

Aetna also has told the Margulies family that a 60-day contract limit on therapy applies to the forms of therapy that Benjy is receiving, Margulies says.

Margulies contends that Aetna has not examined Benjy and has not produced any justification for cutting off coverage for skilled nursing care, and he argues that the therapy Benjy is receiving is more like chemotherapy, which Aetna would cover for more than 60 days, than like ordinary physical therapy.

An Aetna case manager said the 60-day limit on therapy benefits would not apply to Benjy, and Margulies notes that Aetna itself waited for 5 months before moving to cut off therapy coverage.

Because of the assurances that Aetna would cover Benjy’s therapy, “we chose to n6t apply for government benefits for Benjy,” Margulies says. “Had we not been misled in that way, we could have gotten Medicaid (which takes 60 days, in North Carolina, to approve) to provide a seamless transfer and be sure that Benjy was covered at all points.”

Now the Margulies family is applying for New York state benefits for Benjy. The family is asking Aetna for coverage for skilled nursing care while the application for state skilled nursing care benefits is pending, to avoid a gap in care, Margulies says.

About 22 hours after the Margulies’ news release appeared on U.S. Newswire, Aetna agreed to pay for 10 hours a week of nursing care for another 3 months, Margulies says.

Margulies is a lawyer. In 2003, he and his brother-in-law launched a successful, Web-based campaign to “draft” Wesley Clark for the race for the 2004 Democratic presidential nomination.

Although Cynthia Michener, the Aetna spokeswoman, says she cannot discuss the details of Benjy’s case, she did comment generally on conflicts over policy coverage limits.

“No matter how strongly we may wish to act on our personal desire to provide unlimited benefits for any one member, we cannot do so in fairness to all of our members who access benefits in accordance with their medical plan guidelines,” Michener says in a statement. “These limits are put in place to create affordable health benefit plans that employers can purchase to provide the maximum amount of coverage for as many employees as possible.”

Aetna offers 2 levels of internal review and at least 1 level of external review for members who disagree with the decisions made about their cases, Michener says.