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Hundreds of thousands of people across the country with pre-existing chronic conditions such as cancer, heart failure or kidney disease who are covered through high risk-insurance pools will see their coverage dissolve by year's end.
They are supposed to gain regular coverage under the Affordable Care Act, which requires insurers to cover those with severe medical problems. But many of them have had trouble signing up for health insurance through the exchanges and could find themselves without coverage in January if they don't meet a Dec. 15 deadline to enroll.
Administration officials say the federal exchange, which covers more than half the states, won't be working probably until the end of November, leaving people just two weeks to sign up if they want coverage by Jan. 1.
"These individuals can't be without coverage for even a month," said Tanya Case, the chairwoman of the National Association of State Comprehensive Health Insurance Plans, which represents the nation's high-risk pools. "It's a matter of life or death."
High-risk pools were created by state legislatures to provide a safety net for people who have been denied or priced out of coverage. The Affordable Care Act will forbid insurers from turning away people in poor health. And while coverage can be purchased outside the exchanges, those who qualify for subsidies can only get them through a state or federal marketplace.
More than a dozen of the 35 states that run insurance pools for people with serious medical issues will permanently close their pools within a month and half. Other states will keep their pools running for a few more months.
The federal pool covers about 100,000 people and was created in 2010 by the Affordable Care Act as a temporary bridge until the law fully kicks in. It will cease to exist at the end of December.
"I'm scared. I'm in the middle of my cancer treatment, and if my insurance ends, I'm going to have to cancel the rest of my treatment," said Kelly Bachi, an Oklahoma boat repair business owner who has breast cancer and is covered through a pool.
Cancer treatment without insurance would cost her about $500,000, she said.
Bachi has not been able to enroll via the healthcare.gov federal website, although not for lack of trying. She attempted to sign up half a dozen times, was eventually able to create an account, but was later blocked from accessing the account.
Others -- including Jill Morin of Raleigh, N.C., who has a severe heart condition and is covered by her state's pool -- have not attempted to enroll.
"It's the unknown, the uncertainty that gets to me," Morin, 42, said. "I don't know what my cost will be at the end of the day. I don't know if my two cardiologists and my procedures are going to be covered under the plan. There just isn't enough information on that website."
But, she said, she has no choice. She must pick a plan soon because she can't afford to go without. She plans to go to an insurance broker for advice, then contact the federal call center to bypass the online marketplace altogether.
State officials throughout the nation have been scrambling to figure out how to help people like Bachi and Morin.
Last week, the board of the Oregon Medical Insurance Pool -- which covers about 11,000 people -- ordered the state to create a contingency plan for its members because the state's online exchange still has not enrolled a single person.
For now, the only way to enroll for coverage in Oregon is to fill out a 19-page paper application. The state has so far received just 7,300 such applications from all Oregonians, not just those in the pool, but it has not yet processed any of them. The process takes up to several weeks, so no one has completed it and successfully enrolled, Cover Oregon spokesman Michael Cox said.
Oregon pool administrator Don Myron said he hopes to speed up enrollment for its members by mailing them a paper application and following up to make sure they filled it out.
In Indiana, the Department of Insurance extended the high-risk pool coverage until at least Jan. 31 because of difficulties with the federal health insurance exchange. Its pool covers about 6,800 people.
The move was crucial, officials said, because people in the pool were not able to schedule treatments without proof of health coverage for the coming year. Indiana will spend $6.3 million to extend the coverage.
In Wisconsin, the Health Insurance Risk-Sharing Plan that covers 24,500 people is rolling out an outreach effort to make sure their members are signed up by the deadline, chief executive Amie Goldman said.
The state created a worksheet and directories of carriers to help people prepare for enrollment, has sent postcard reminders and is answering questions through its Facebook page and weekly newsletters.
Many of those in high-risk pools across the nation will be shopping for insurance for the first time in years.
"Even if the technology was really perfect, it would still be hard to sign up because many people who are really sick don't respond well to change," said Linda Nilsen Solares, executive director of Portland-based Project Access NOW, which connects uninsured people with care. "Many of them are just trying to get through the day."
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