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Young Adult With Pre-existing Condition Opts to Forgo Health Insurance

Health application
Photo credit: Politico

As if the struggled rollout of the healthcare.gov website was bad enough, cancelled individual insurance policies have taken on a life of their own. The new federal law stipulates that existing plans which don’t comply with the Affordable Care Act will no longer be accepted. For people like Pam, who asked we not use her last name, the cancellation letter for her son’s policy was not unexpected. But for this southwest Missouri mother of a now 21-year-old born with hydrocephalus – an abnormal accumulation of fluid in the brain, it meant a difficult choice: Enroll Aaron in one of the new exchange options – which don’t offer the same services as his current policy – or he take his chances without insurance.

“We’re kind of in a wait and see, because I know a lot of people are resisting this and don’t want it just on principal. And for us, the economics of it don’t make sense,” Pam said.

At 18 months, Aaron underwent shunt surgery, where a tube is placed in the brain to drain out excess fluid. First on a family insurance policy, Pam converted her son to an individual plan about a year later.

I was unable to speak with Aaron directly, but his mother says there’s been no need for him to undergo a shunt revision, nor has he experienced any infections since his surgery. Aaron has lived a very healthy life to date, Pam says. That’s the good news. The bad news is insurance costs throughout his childhood continued to mount, and by age 11, premiums had reached $2,000. Adding to the bill was a hefty deductible to cover procedures like CT scans.

“How could we do this? $2,000 a month, $10,000 deductible; we were spending $20,000 a year on premiums and then healthcare costs because you’re reaching your deductible.”

Finding Aaron a new plan would have been difficult considering his pre-existing condition, so about 11 years ago they enrolled him in the Missouri Health Insurance Pool, an alternative for those unable to obtain coverage. For this major medical plan, the premium fell below $200, and the deductible was $5,000.

But it’s this affordable plan Pam says Aaron will lose as a result of the ACA, or Obamacare. State-based “high risk pools,” as they’re known, are schedule to end soon (despite a month delay); meaning if Aaron doesn’t want to experience a gap in service, he needs to act fast.  

The Affordable Care Act does state that people with pre-existing conditions cannot be denied service. While that may sound good, Pam says her son only has the option of choosing one plan. Aaron falls into the 21-30 age group, she says, in which the healthcare law allows those with pre-existing conditions to enroll in a catastrophic plan. At $153, the premiums are actually cheaper than his current plan through the Missouri Health Insurance Pool. But…

PAM: If he needs surgery, which is really our main concern, he can’t use his doctor in Kansas City.

SCOTT: Kansas City, Kansas?

PAM: Mm-hmm. So you can only have doctors that are in your state.

Dr. Mark Rushefsky is a political science professor at Missouri State University who studies health policy. He believes some plans can be taken across state lines, depending on what’s available. But to put Aaron’s dilemma into context, Dr. Rushefsky says that first you need to understand which insurance companies are participating in a particular state’s exchange. Then, he notes, you may tend to find that those companies have narrowed their list of providers within the exchange to control costs.

“And so, if you’re buying something through the exchange then it is possible that if you’ve had a doctor or a hospital that you’ve used that it might not be covered by the plan that you pick, because insurance companies now don’t include everybody in their plans, in terms of providers,” Rushefsky said. 

Meaning in order to enroll in coverage through Missouri’s federally-run health insurance exchange, Aaron must find a new doctor, a concern he shares with his mother.   

“One of the things with hydrocephalus is that this is a lifelong condition and you want people that do it a lot, you don’t want somebody that just once in a while operates on someone’s brain…so that’s why staying up in Kansas City [KS] and knowing the doctors that we have, we’re confident.”

We should note that due to privacy concerns, Pam is exploring ACA policy options through her current insurance provider, Anthem Blue Cross & Blue Shield, rather than through healthcare.gov. Dr. Rushefsky confirms that more and more insurance companies are helping enroll people in the exchange through their own sites.

The location of Aaron’s doctor is also important to Pam’s family in terms of distance, whereas it takes them two hours to drive to KC from their home north of Joplin. Should Aaron have to receive medical assistance in St. Louis, the drive for his parents would be six hours.

What about the option through the ACA that allows children to remain on their parent’s plan until they turn 26? Through the individual market, Pam and her husband pay just over $500 a month for their major medical plan, which is grandfathered having been established prior to passage of the new federal law.

But with any changes to their plan, such as adding their son to it, they’ll lose that grandfathered status and the policy along with it, leaving them to enroll only in the exchange. But Pam says the equivalent plan under the ACA, since they make too much to qualify for government subsidies, is more than double that of their current plan.

So with Aaron’s policy under the Missouri Health Insurance Pool soon closing, what is he to do? After discussing with his family and exploring their options, he’s going to play the waiting game. And his parents will foot the bill for the penalty imposed on those who don’t sign up. As for his parent’s policy, that’s still valid for another year, a promise President Obama recently made after the backlash he received having stated, “If you like your health insurance, you can keep it.”

So come 2014, Aaron, a healthy 21-year-old who has hydrocephalous, will hope to remain healthy while living with no insurance. And his parents will likely watch the March 31 deadline to enroll to avoid a penalty come and go, waiting until the next open enrollment period to see what the health insurance industry will then hold.