Whether people agree with President Obama’s Affordable Care Act or not, millions of people have health coverage thanks to the bill, and to a girl named Nataline. Nataline Sarkisyan was 17-years-old and was suffering from leukemia. She needed a liver transplant, but her parents’ insurance company, CIGNA, denied it. Protests arose but by the time CIGNA approved the surgery, it was too late. Nataline had died. Five years later, many say Nataline’s story pushed the healthcare dialogue. When I visited with her family recently, they showed me her room, where she dreamed one day of becoming a fashion designer. “Nothing has changed,” her father Krikor Sarkisyan told me as he choked back tears. “We miss her everyday. We still cry for Nataline.” That quote was taken out my article that was eventually published, but to me, it spells the heart of story. Here’s a small part of what I wrote for the, Daily News 11, 2012:
PORTER RANCH – They weep still for their blue-eyed Nataline.
Their tears flow for what they remember: Their daughter in her room, the pink walls decorated with posters of the Jonas Brothers. They see her there sketching in a notebook the dresses and blouses and jackets she would one day like to design.
Nataline Sarkisyan died in a UCLA hospital bed on Dec. 20, 2007. She was 17. Her story drew nationwide attention because the liver transplant she needed was denied by her family’s health insurer, CIGNA.
For Hilda and Krikor Sarkisyan, who live in Porter Ranch, anguish remains for the daughter who never came back to her pink room. But so too does their determination to keep Nataline’s story alive, to save others.
The family established the Nataline Sarkisyan Foundation, and since then has organized an annual fashion show to raise scholarship funds for students interested in the arts and medicine. The fifth annual show is scheduled for this weekend in Calabasas.
They also continue to implore lawmakers to change a federal law that prevented them – and will stop other families – from suing CIGNA and other health insurance carriers for refusing to pay for treatment.
“I am not a politician. I am not a nurse. I am not a doctor,” Hilda Sarkisyan said as she sat in the living room of her home, where a large portrait of Nataline hangs over the fireplace.
“I am a mother,” she said. “As a family we made a commitment. We want the whole world to know her story because Nataline’s story will make change.”
Hilda Sarkisyan said her life’s goal is to repeal a provision of the Employee Retirement Income Security Act of 1974 that protects insurance companies from being sued for lack of coverage.
Flanked by power attorney Mark Geragos, the Sarkisyans tried to sue CIGNA shortly after Nataline’s death. But with ERISA in place, they were unable to touch the insurance provider.
The provision is so tightly ingrained into the way health insurance works that even President Barack Obama’s extensive health care reform bill couldn’t touch it, said Wendell Potter, the former vice president of corporate communications at CIGNA, who resigned from the company in 2008 and later testified against it as a whistle-blower.
Potter even came to the Sarkisyans’ home, and on national television, apologized to the family.
“The Sarkisyans’ case highlighted a broken system that exists and continues to exist,” Potter said.
It was Nataline’s story that brought the health care crisis to the forefront – and she already has helped millions, Potter said.