Ban on lifetime limits helps Mukilteo family

MUKILTEO — Declan McNulty is just two years old.

The total tab for medical expenses in his young life has just hit $1.2 million.

Just days after Declan’s birth, he was diagnosed with hemophilia. His parents later learned he had one of its rarest forms, an inhibitor, making it difficult for his body to accept a potentially life-saving, and costly, blood clotting medication.

Declan requires one dose each day of the clotting medicine, which costs $1,000 each, his mother Kristen McNulty said. The size of the dose, and its price, will increase as he grows. “The vial is so small and it’s $1,000,” she said. “It’s a lifeline for my son.”

By age 5, his total medical expenses could hit $2 million, reaching the lifetime limit, or cap, on his health insurance policy.

“There are very few diseases where the lifetime cap issue is so great,” said Dr. Dana Matthews, a director of clinical hematology at Seattle Children’s Hospital. Because the dosage a child needs increases as they grow, it’s not uncommon for a 4-year-old to need $2,000 of the blood clotting medicine each day, she said.

Ending lifetime limits on health insurance expenses is one of the provisions in the federal Affordable Care Act, which was upheld by the Supreme Court’s decision this morning.

Kirsten McNulty said she cried tears of joy when hearing the Supreme Court’s ruling, which upheld the ban on lifetime health insurance expenses.

“Definitely it’s emotional,” she said. “It’s been a hard week. It’s like the rest of your child’s life is in the hands of someone else.

“We’re excited,” she said. “We’re very excited.”

An estimated 105 million people already have benefitted from the national ban on lifetime caps, which went into effect in 2010, according to the federal Department of Health and Human Services.

Before the federal ban on limitations for lifetime health expenses went into effect, individuals or families had to hope to find another health insurance plan to reset the lifetime limit. With some hemophilia patients, it has meant one parent had to quit a job so the family could qualify for Medicaid, McNulty said.

For Declan, having the rare form of hemophilia means that if he has a relatively minor injury to his arm or head, it can cause internal bleeding. Typically that means an extra dose of clotting medicine, since its effectiveness is halved after eight to 12 hours. And it can trigger a trip to Children’s emergency room.

“How do you tell a 2-year-old don’t run or jump or kick a ball?” his father, Tony McNulty asked.

The McNultys are small business owners, operating Papa Murphy Take and Bake restaurants in Mukilteo and Monroe.

Over the past three years, their health insurance premiums have increased $7,000, Kristen McNulty said. Their annual out-of-pocket health care-related costs are about $35,000 a year, she said.

Treating Declan’s condition would have hit the limit on most health insurance plans every three to five years.

The federal ban on lifetime limits for health care costs provided relief to Washington families, said Stephanie Simpson, executive director of the Bleeding Disorder Foundation of Washington.

“It’s lifted the fear of having to find insurance constantly, of having a parent change jobs for insurance,” Simpson said.

Sharon Salyer: 425-339-3486 or

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