Two-year-old Silas Werner has a rare condition that results in atrophied muscles and weakened lungs, and requires constant daily nursing care.
So when health insurer Highmark Inc. eliminated the costly "private duty" nursing benefit that had been included in its individual health plans, effective Oct. 1, the change threw a handful of families, such as the Werners, for a loop.
"I couldn't believe they were doing that to [a] little boy," said Silas' mother, Lisa Werner of Friendship. Both Ms Werner and her husband, John, are recessive carriers of a gene that can result in spinal muscular atrophy with respiratory distress, or SMARD.
Highmark typically notifies customers of policy changes by mail, but Ms. Werner said she doesn't recall reading about any changes to her DirectBlue plan, and learned of the elimination of the benefit only after she got a phone call from the in-home nursing agency that has been caring for her son. The agency informed her that her bill was unpaid.
Highmark's underwritten individual products -- DirectBlue, PPOBlue high-deductible plan, Advance Blue and Simply Blue -- are used by about 50,000 Western Pennsylvanians. Because the health plans are "medically underwritten" (which means an applicant's health history is investigated before the policy is offered), "this audience is relatively healthy," Highmark spokesman Aaron Billger said. As a result, "we found that virtually no one was using private-duty nursing. By removing the benefit, this reduced premiums by about 0.4 percent."
Silas had the coverage, despite the underwriting requirement, because he had been added to his mother's plan, rather than having applied for the plan himself.
The private-duty nursing coverage had been in place since the policy took effect in summer 2012, but then, "Highmark refused to pay the nursing bill," Ms. Werner said. "They're suggesting Medicaid."
That was the exact course the Werner family took, having already applied for a Medicaid policy through Pittsburgh's Gateway Health Plan, an insurance carrier that primarily offers Medicaid plans. It was supposed to be, in Ms. Werner's words, the family's "plan B," but the Werners had not expected to put that plan into action so soon.
Though families with chronically ill children are urged to apply for Medicaid as a backup, some families aren't eligible for the plan, which is primarily aimed at low-income families, but also covers some children and under-65 adults that have chronic needs.
"These are pretty fragile children. I can't just stop services abruptly," even if it means forgoing the monthly fee, which is about $30,000, said Susan Coleman, director of nursing at Pediatric Services of America, which provides Silas' care.
She suspects the major cost of the benefit played a role it its rescission, in addition to its minimal utilization.
Highmark's denials caught Pediatric Services off guard because most of its clients have employer-provided insurance or use Medicaid. Few of them have individual, "direct-pay" plans, largely because Highmark was one of the only insurance companies to offer private duty nursing coverage on such plans to begin with.
Many insurance companies "refer to the [nursing] care as custodial, and the benefit does not cover custodial services," she said. "Unfortunately, Medicaid ends up absorbing the cost of all of this."
Ms. Werner said she is in the middle of filing a grievance with Highmark but, because the changes to the DirectBlue plan have already been approved by the state Department of Insurance, isn't expecting to see the benefit reinstated.
Bill Toland: firstname.lastname@example.org or 412-263-2625.