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Towson family featured in health care campaign find 'relief' in Supreme Court ruling

Three-year-old daughter's leukemia diagnosis brought home issue of pre-existing conditions

By Jon Meoli, jmeoli@tribune.com

11:24 PM EDT, June 28, 2012

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The Supreme Court's ruling on President Barack Obama's health care initiative was a cause for great anticipation for Alicia Steinberg.

In the parking lot of Brown Memorial Woodbrook Church on Thursday, the West Towson resident was waiting until the last possible moment to take her daughter Avey, 3, into her music class as she listened to the news.

She heard the initial — and inaccurate — report across the radio that the individual mandate, a piece of the Obama package requiring people to purchase health care, had been struck down by the nation's highest court.

"I was just so disappointed," said Steinberg, 37. "It's enough for your child to have cancer, and then to worry about anything else. … We have so much more to deal with in this other part of our lives."

Moments later, she said, she began receiving text messages inside the class. After she had turned the radio off, the story changed.

In fact, the legislation was upheld in every aspect, including a provision that's most important to Steinberg's family — that children can't be denied coverage for pre-existing conditions. For Steinberg, it means her daughter, who was diagnosed with leukemia in October of last year, is protected from being denied treatment or coverage.

A few hours later, as her daughter bounded around their living room, Steinberg said, "It's just such a huge relief. ... Avey has this pre-existing condition for the rest of her life."

"We won't be at the mercy of some insurance company, and it matters when she's an adult and out looking for a job on her own, and trying to get insurance on her own, that she won't have her opportunities limited because of this diagnosis she had when she was two years old," Steinberg said.

On a Friday in October, Steinberg brought her daughter to the pediatrician with what she thought was "a minor kid illness."

"Kids get fevers," she said, but the doctor ordered blood work and called Steinberg the following Monday to tell her Avey needed to get to the emergency room at once.

"We went to the Hopkins ER, and stayed at Johns Hopkins for 24 days," she said.

Avey started intensive chemotherapy for her leukemia, and her stay in the hospital was extended because of an array of infections.

"She basically had no immune system," Steinberg said.

Avey lost her ability to walk, and when she returned home from the hospital, couldn't even sit up by herself. Doctors assured her parents, Steinberg and her husband, Damian O'Doherty, that she would bounce back, and once the chemo cycles slowed down, she did.

Now, the newly-minted 3-year-old, who had a "Dora the Explorer" cake at her birthday party, is back in music class..

Avey still undergoes maintenance chemotherapy, a two-year phase that requires treatment as infrequently as once a month, but her blond hair is beginning to grow her hair back. She's enrolled in pre-school for the fall.

Avey's treatment has been covered under Steinberg's insurance through her previous employer, the Hilltop Institute at UMBC, a health research organization that conducts analysis and evaluation on health care issues for foundations, nonprofits and the government.

Through that work, Steinberg met officials for the U.S. Department of Health and Human Services, and when the department began conducting town hall meetings with Health Secretary Kathleen Sebelius on the Obama plan, they asked Steinberg if she would be willing to tell Avey's story.

She agreed, saying it was important to put a human face on the health care debate.

In recent weeks, Steinberg has also been featured on a HHS website and a YouTube video produced by the department as part of its MyCare communications initiative.

All that promotional work came once Avey was doing better. In the interim, Steinberg had used up her vacation and leave time at Hilltop. She attempted to resume working from home, but the juggling proved too much and Steinberg resigned.

The family is now covered by COBRA health benefits, which continue after loss of employment, but those benefits runs out in 18 months. After that, they'll switch to coverage provided by O'Doherty's public affairs firm, KO Public Affairs. KO is involved in state and local government affairs and communications work, but Steinberg said the company has not been involved in the MyCare campaign or her advocacy for it.

She said that when the family switches coverage, "We don't have to worry that there will be any issues with them saying, 'No, not that cancer treatment.' It's a huge relief."