Discuss as:

Thrilled and relieved, sick patients cheer court ruling

Tom Reel / San Antonio Express-News

Jerry Fielder, 64, of Universal City, Texas, is a cancer patient whose family was turned down by 16 different insurance companies because of pre-existing conditions before accessing coverage under the Affordable Care Act.

Jerry Fielder and Beth Ann Levendoski breathed separate sighs of relief Thursday -- one in Texas, the other in California -- on the news that the U.S. Supreme Court had largely upheld President Obama's signature health care law, preserving the guarantees that the seriously ill women will have health insurance. 

Fielder, a 64-year-old cancer patient from Universal City, Texas, and Levendoski, a 57-year-old San Diego woman with a history of complicated spinal surgeries, were among those with the most to lose from the long-awaited ruling on the Obama Administration’s Affordable Care Act: people with pre-existing health conditions.

"I am thrilled. I can't tell you what this means," said Levendoski, who is still recovering from two 10-hour surgeries in 2011 to correct spinal fractures and a compressed spinal cord, which left her virtually paralyzed. "I hardly slept all night."

On a 5 to 4 vote, the nation’s top court on Thursday upheld the provisions of the Affordable Care Act, including the controversial proposal that requires all Americans to have health insurance, or face financial penalties. The court interpreted the so-called "individual mandate" as a tax, however. 

"I was on pins and needles. I was dreading the results," said Fielder. "Then I was like, Oh my God, they upheld it? I can't believe it."

For Fielder, the ruling means she won’t have to count the months until Medicare kicks in next spring to continue treatment for lymphoma and a fist-sized malignant tumor in her abdomen. 

Fielder spent most of the past decade struggling to acquire and maintain health insurance after giving up employer-sponsored care when the family decided to start a small business. They assumed they'd be able to buy private insurance, but when Fielder and her husband, Charles, now 65, went looking for coverage, they were stunned to be turned down by 16 different providers because of his history of heart problems.

They paid $73,000 out of pocket for Charles' heart surgery in 2003, but then, in 2009, came Jerry’s diagnosis.

“You can pay for a broken leg, you can pay for a broken arm, but you cannot pay for cancer,” she said. 

Without insurance, Fielder received no treatment for months, growing sicker and weaker as the cancer spread. Only after she gained access to a stop-gap program through the ACA did Fielder get care that has slowed her disease and allowed her to return to work. Charles became old enough to qualify for Medicare last year. 

Fielder said she has met many families, including single mothers with young children, struggling to find coverage for existing illnesses.

Courtesy Beth Ann Levendoski

Beth Ann Levendoski, 57, of San Diego, is enrolled in a PCIP, a health insurance plan provided under the Affordable Care Act for people with pre-existing conditions.

"Everybody is just a blink away from needing insurance," Fielder said.

Between 36 million and 122 million adults under age 65 in the United States have a pre-existing health condition and as many as 17 million do not have health insurance, according to the Government Accountability Office. The estimates vary widely because of the type and number of ailments used to define pre-existing conditions in each of five estimates. In the lowest estimate, adults reported whether they had ever been told they had one or more of eight specific conditions. The highest estimate included any individual reporting a chronic condition in 2009.

Fielder and Levendoski are among more than 67,000 people nationwide who enrolled in Pre-existing Condition Insurance Plans, or PCIPs, which were created to provide insurance for people too sick to get coverage on the private market. Both women were among the first to join in October 2010.

The PCIPs are temporary programs aimed at bridging the insurance gap until 2014, when the health reform law requires insurers to accept all comers, including those with previously identified health issues.

Their support for Thursday's ruling was largely echoed by a poll conducted by Truth On Call for msnbc.com, which found that nearly 64 percent of family care doctors queried thought that the high court's ruling was correct, while 36 percent disagreed. 

For Levendoski, being able to maintain her insurance coverage is the key to her future.

Poll: Do you agree with the health care ruling?

A former director of a nonprofit agency, she lost her insurance in 2004 after being laid off. She exhausted benefits through the state COBRA health benefits program and then learned that she couldn't get private insurance because of a history of kidney problems and the degenerative effects of childhood scoliosis, which required repeated surgeries. Her condition grew so dire, she suffered spinal fractures and a compressed spinal cord that left her unable to walk. 

She exhausted about $55,000 in savings paying for care out of pocket before the ACA was enacted. She eventually lost her home and had to declare bankruptcy because of the medical bills. Levendoski was able to buy insurance and resume her treatment in 2010 after enrolling in the PCIP.

The two surgeries last year helped relieve the paralysis in her legs, but left her with lasting, debilitating weakness in her arms. Unable to work now, she lives for free with her 80-year-old mother, which allows her to use state disability payments to cover the monthly premium of $467 for the PCIP program. 

Regaining strength in her arms and re-learning to walk mean Levendoski has a long road ahead, including another major surgery planned in just a few weeks. 

She was in an agony of anticipation most of this week. When the high court didn't rule on the law as expected Monday, Levedoski was in tears. On Thursday, as early reports appeared mixed, she was worried, then elated. 

"I am going to be so relieved," she said. 

More health reform coverage:

NBC's Tom Costello explains the benefits of the healthcare law and the costs to small business to insure their employees.