By Alex Distefano
By Scott Snowden
By Anna Merlan
By Steve Almond
By Jena Ardell
By Jon Campbell
By Alan Scherstuhl
By Tessa Stuart
Antonia Cedrone chose her 17th-floor apartment for its view. The one-bedroom in a doorman building in the East 30s was on the pricey side for Cedrone, who works as a psychologist for a nonprofit organization. But when she and her husband, Alan Leach, looked at the apartment two years ago, the vista won them over. Leach had a rare disease that made him physically unable to look down. Through the apartment's three big picture windows, he could look up and see the sky.
Indeed, in his final years, Leach could do little else. Walking, talking, remembering, and even swallowing, were eventually beyond him. His nerve disorder had begun subtly. At first Leach, an actor who appeared in soaps, commercials, and theater, started flubbing occasional lines. After he slipped up in his small, recurring role as a newscaster on Late Night With David Letterman, he went for a checkupand was diagnosed with Parkinson's disease.
The news was devastating. But Leach and Cedrone took comfort in the slow-progressing nature of the illness. Though Parkinson's is incurable, Leachwho would have been 61 in Octobercould have lived with it for as long as 30 years. Instead, his nervous system worsened so dramatically over the next two years that Leach's doctors gave him an even grimmer diagnosis: progressive supranuclear palsy. Distinguished from Parkinson's mostly by its severity, PSP would likely kill him within seven years.
As if on schedule, Leach's basic abilities began to fade. He lost his balance. His speech faltered. His face slackened. And his eyes began to involuntarily focus upward. Leach's condition demanded vigilance. The disease affected his judgment, so he would sometimes attempt tasks that were now dangerously beyond his reach, like standing on a chair to change a lightbulb. Several times he fell backward, as PSP patients do, hitting the ground with the back of his head. On two occasions when he choked on his saliva, Leach nearly died.
Cedrone describes her years of caring for her dying husband as "transforming." Though Leach eventually couldn't speak to his wife, "He used to look at me with tremendous love," Cedrone remembers. "We developed a serenity."
That fragile peace, however, was disturbed by a mounting frustration over Leach's health coverage. The couple was insured through Cedrone's employer, the International Center for the Disabled. In January of 1998, four and a half years into his illness, ICD switched its employees from Cigna's indemnity insurance plan to the same company's HMO. At the time, the change seemed insignificant.
But within weeks, Cedrone started having troubles getting medical bills paid. She got notices of late payment from several of Leach's doctorsand even one from a collection agency. Cigna, which declined to comment for this story, informed Cedrone that an internist who had cared for Leach for yearsand had helped plan the surgery to insert a feeding tube after one of his choking episodes in Januarywould be reimbursed at the "out-of-network" rate. Leach's longtime neurologist also wasn't included in Cigna's network of physicians, and the couple paid extra to see him.
Straightening out payment of Leach's various bills turned into something of a part-time job for Cedrone. On top of working and caring for her husband, she wrote letters and called Cignaalways being careful to make the calls from a neighbor's apartment, so Leach wouldn't be upset by her conversations. It was during one of these many calls that a Cigna employee (Cedrone won't say who because she doesn't "want her to get fired") mentioned that Leach might benefit from a new state law.
Indeed, as Cedrone soon learned, New York's Managed Care Bill of Rights had actually carved out protections for situations like Leach's. According to the law, which went into effect in 1997, when people who are undergoing treatment for life-threatening diseases first join new health plans, they have the right to keep seeing their old doctors for 60 daysand have them paid at network rateseven if the doctors aren't in the new plans' networks. This special loophole also applies to women who switch insurers when they're more than three months pregnant.
The little-known provision seemed to be written specifically with Leach in mind, and Cedrone sent Cigna a form requesting a transition period, during which the company would pay for Leach's continued care in full. But, in February, the company told her that she hadn't submitted the form early enough. Cedrone then pointed out that the company itself had never informed her there was a transitional period, much less that there was a deadline for applications. Nevertheless, in April, Cigna denied her request, this time saying that there were doctors in its network who could treat Leach as well as his old neurologist. When Cedrone last appealed that decision in July, the company requested more information about Leach's condition.
Leach died in August, before his doctor sent Cigna the additional information it requested. Now this tug-of-technicalities can no longer have any bearing on him. But for Cedrone, finishing up the battle she began on her husband's behalf is part of the mourning process. She has continued to ply the company with letters requesting a transition period, which would allow her husband's physicians to be paid at network rates. She has also convinced her employer to post information about the Managed Care Bill of Rights at her workplace, so that others in similar situations will know what they're entitled to. And, in February, Cedrone is planning to move to a cheaper apartment, leaving behind her view.