Before Obamacare, a cancer survivor struggled for insurance. Will it happen again?

Feb. 16--The stack of papers spread across the kitchen table of Nancy Blitz's home in Plantation chronicles her decades-long struggle to buy health insurance before the Affordable Care Act made it illegal for insurers to deny coverage to people with pre-existing conditions.

There are repeated denial notices from insurance companies, lists of insurance brokers and agents and a pile of membership cards from past health plans that offered Blitz -- a breast cancer survivor -- skimpy coverage that was better than no coverage at all.

Thanks to the ACA, Blitz said, she believed that struggle was finally behind her.

Now, as President Donald Trump and Republicans in Congress work to dismantle and possibly replace the health law known as Obamacare, the 59-year-old registered nurse is deeply worried that she'll have to go back to the uncertainty of life before the ACA rewrote the rules for insurance companies in 2014 -- opening the door to coverage for Blitz and millions more like her in Florida and the rest of the nation who have a pre-existing medical condition.

Part 1 of an ongoing series on the Affordable Care Act.

A recent MRI showed spots on her lower back. Had cancer returned? She worried for a week before tests -- currently covered by insurance -- showed it hadn't.

"I don't know what I'll do if we have to go back," Blitz said. "I haven't figured it out. They haven't figured it out. I'd hate to get myself in this anxiety and turmoil that I lived in so long, filling out so many applications, and so many agents and so many companies."

Blitz knows all about pre-existing conditions and their implications for health insurance. Her former husband had a childhood blood cancer that made him almost uninsurable as an adult. And in 2004, Blitz was diagnosed with breast cancer before discovering that she carries a rare genetic mutation called ATM that greatly increases her chances of developing the deadly disease again.

She's not worried about just herself, Blitz said. She's also concerned about her siblings -- two of whom died from cancer, and two more who also are breast cancer survivors -- and about her high school-aged children, who have yet to learn of her genetic predisposition to cancer.

Up to 133 million Americans younger than 65 -- just more than half of the non-elderly population -- may have a pre-existing condition that could have disqualified them from coverage on the individual insurance market prior to the Affordable Care Act, according to the U.S. Department of Health and Human Services.

"We're all like deer in the headlights," Blitz says of her sisters. "Some days are dark. ... I'm not just talking about me. Are my children going to be able to get healthcare?"

Before the ACA, the list of pre-existing conditions for which insurance companies routinely denied people coverage when they applied for individual insurance policies included Alzheimer's disease, congestive heart failure, diabetes, kidney disease, mental disorders, obesity, Parkinson's disease, pregnancy and stroke, according to the nonprofit Kaiser Family Foundation, a health policy think tank.

Individual polices are only about 6 percent of the total health insurance market but they're at the heart of Obamacare, which aimed to cover millions of Americans who were uninsured.

Many insurers also kept a list of medications that would trigger a refusal to insure, including drugs to treat cancer, arthritis and HIV infection, according to the Kaiser study.

People with pre-existing conditions did not have a lot of options, Blitz said. She tried most of them: finding a job with health benefits; creating a business with her husband so they could qualify for a group plan; paying top dollar for catastrophic coverage that didn't include all the care she needed; applying for a state-run program known as a high-risk pool.

I don't know what I'll do if we have to go back.

Nancy Blitz, 59, of Plantation about Affordable Care Act repeal

Eventually, each of those dried up, and Blitz would start the rigamarole again -- keeping insurance agents on speed dial, filling out lengthy questionnaires, paying top dollar for minimal coverage from insurers she had never heard of, wondering if she should lie about her condition and risk having her plan canceled.

"It was an impossible catch up," she said.

Denials, high premiums and skimpy coverage were hallmarks of the individual market prior to the ACA, according to a survey by the nonprofit Commonwealth Fund, an advocate of coverage expansion.

The survey, taken during the three years prior to the ACA's becoming law in 2010, found that one-third of people who applied for coverage on the individual market, about nine million consumers, were turned down, charged a higher price or had a medical condition excluded from their plan.

By January 2016, near the end of the ACA's third open-enrollment period, things had changed, said Sara Collins, a vice president for the Commonwealth Fund.

Even though the size of the individual market has nearly doubled since 2010, she said, the number of people who reported having trouble affording their health insurance declined to 34 percent of those surveyed.

"We still see affordability problems in the individual market. It's not perfect yet," Collins said.

"But the change between the pre-Affordable Care Act individual market and the individual market today is night and day," she added. "For someone who has a pre-existing health condition, even if it's a very minor one, they're guaranteed to get a health plan, and that was just not the case prior to the ACA."

Before the Affordable Care Act, some individual market insurers developed lists of ineligible occupations. These were jobs considered high risk, and people employed in them were automatically denied, including taxi cab drivers, miners and security guards.

ACA opponents counter that insurance doesn't necessarily mean good care, particularly when the plan comes with a high deductible and a narrow network of hospitals and doctors.

David Barnes, director of policy engagement for Generation Opportunity, a youth-oriented project of the conservative Americans for Prosperity, has resurrected an old idea to cover people with pre-existing conditions: high-risk pools.

High-risk pools were programs that states operated for more than 35 years to cover people with expensive medical conditions who couldn't get coverage on the individual market before Obamacare. Funded by insurer fees and consumer premiums, they often had waiting lists, high premiums and limited coverage.

Florida's Legislature closed the pool to new members in 1991 over concerns about rising costs and skyrocketing premiums. By 2011, the state program covered a mere 238 people, according to the National Association of State Comprehensive Insurance Plans.

"It's fair to say a high-risk pool is not a silver bullet. There are no silver bullets in healthcare," said Barnes, whose group works closely with Freedom Partners, a free-market advocacy group that recommends funding high-risk pools with consumer premiums and insurer fees.

But he said states could learn from past experiences, and he thinks the old way will be better than Obamacare: "A government mandate that insurers have to cover pre-existing conditions did not solve all the problems, either."

208 Number of people covered by Florida's high-risk pool in 2011

About 133 million Americans under 65 are estimated to have had pre-existing conditions that could have prevented them from getting insurance before the ACA, according to the U.S. Department of Health and Human Services. Most of them get their health insurance through work, where pre-existing conditions typically have not been excluded.

For years, that's how Blitz got her coverage. But after losing her job as a registered nurse for Columbia/HCA Healthcare in late 1998, when she was eight months pregnant, Blitz said, she had to scramble to find health insurance. She extended her workplace coverage for 18 months through COBRA, though that cost about $2,000 a month.

When that ran out, Blitz and her husband, Gerald, who is self-employed in construction, incorporated a business in order to qualify for small group coverage. That strategy worked for several years, though it meant Blitz had to serve as her own human resources department, doing the research to find plans she could afford that included her preferred provider, University of Miami Health System.

Premiums, she said, were about what she pays now for Obamacare coverage for her family, $2,200 a month, but the benefits were far less. When Obamacare enrollment began in fall 2013, the Blitzes signed up. This year, nearly 9 million people in 39 states -- including about 1.7 million Floridians -- signed up for 2017 coverage through healthcare.gov.

After undergoing a double mastectomy and unrelated back surgery in 2004, Blitz said she wants to keep the insurance she has, which allows her to go to any doctor, including out of state.

"I'm paying the high price to have that," Blitz said. "That's something I don't want to change."

A previous version of this article stated that David Barnes was director of policy engagement for Freedom Partners. He works for Generation Opportunity.

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