So I signed up for Obamacare—and got a big surprise

Lupus patient Jennifer Clare Burke knew she couldn't afford to lose her good insurance coverage. As it turned out, the Affordable Care Act just made it less expensive.

By Jennifer Clare Burke
Add Comment Add Comment | Comments: 18 | Posted Nov. 26, 2013

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I have to have health insurance—not because of the law, but because of the lupus. My immune system doesn’t work properly, so I’ve spent the last 15 years learning to deal with unpredictable inflammatory attacks that send me to the hospital, each time incapacitating a different body part: the time scleritis temporarily blinded me in one eye, for instance, or the time the leg pain was so intense I couldn’t move without a walker. So I’d only halfheartedly followed the endless debates over Obamacare, because there wasn’t much point in getting anxious about it ahead of time. Healthcare isn’t about politics for me—it’s about the struggle to maintain my current level of physical functioning and pain management. In other words: Whatever the new healthcare laws made possible, that’s what I’d be doing.

As a self-employed independent contractor well accustomed to paying for my own insurance, I’d been happy with the care I’d been getting for years under my Independence Blue Cross Personal Choice plan. I wanted to continue with what was already working—and yet, I had some concerns.

Here’s the thing: I’m 39, with a birthday coming up fast. For several years now, the big four-oh hasn’t filled me with any abstract dread but with the very practical dread of knowing that my monthly health insurance premium is sure to skyrocket when I cross from the 30-39 age bracket to the 40-49 bracket.

Right now at 39, I pay $484.47 per month. Currently, those in the 40-49 age bracket of my same plan pay $613.48 a month. Oh em gee.

So, two weeks ago, knowing that the website portal to the new federal healthcare setup had been plagued by a glitchy launch, I took the simpler option instead: I picked up the phone and called Independence Blue Cross to figure out what Obamacare was going to do to my life.

“You see the level of care I have right now,” I asked the customer service rep, “and the way I can choose the doctors I want to care for me?”


“Give me that. I want this settled today and don’t want to stress over what’s going to happen to my access to care this year. I want to know what I’m getting and how much it’s going to cost.”

If that sounds demanding, well, I’ve learned I don’t have much wiggle room when it comes to medical questions.

Last June, I found myself in the emergency room. Ironically, I was already in the hospital: My mom had been diagnosed with ovarian cancer, and, at her request, I’d moved into her hospital room with her.

It flashed me back to the time when I was 12 and hospitalized for a solid week that left me with a shiny scar that runs from hip to hip; my mom slept on a makeshift bed next to my hospital bed, and now the karma wheel had come full circle. But my body didn’t let me forget that it was chronically ill. While I tried to pace myself and adjust responsibly to being on call for my mom 24/7, eventually I pushed myself beyond the limits of my medication and landed in the ER with a lupus flare-up. My joints were already throbbing; the weakness and a killer headache hit with pain and fatigue that started a cycle of vomiting and dehydration. I needed a strong wallop of IV corticosteroids, among other medications, to reduce the inflammation.

My husband took my place in the cot by my mom’s side, so she wouldn’t feel alone—which meant it was a succession of friends who came to watch over me in the ER. I got to introduce Gus, my work friend, who held my hand while the nurse inserted an IV, to Bob, my gym friend, who subsequently drove me home since I was too medicated to drive myself. For some people, getting acquainted over a sick body in the hospital might seem strange; for the people in my life, it’s just understood that this is part of the way of things.

Still: “What if I barf in your truck on the way home?” I asked Bob. I had never barfed in his presence thus far, so as friends, we were exploring new intimacies. I wanted Bob to know I was ready with the plastic barf bin in case I needed it. “I’m a really good shot,” I told him. He assured me he’d already put a towel on the front seat. That’s the kind of quality I’ve gotten good at spotting in potential friends. Fortunately, as I grew groggy from the drugs hitting my body, my symptoms quieted, and Bob drove me home without incident.

I was alone that night in a dark apartment while, back in the hospital, my husband and mother dozed without sleeping much as Mom’s constant symptoms brought nurses and techs to her side. The following night, I was by her side again—as I was every night and most every day until her death two weeks later.

My mom’s hospice stay was a time in my life when my self-care routine was writ large: Every moment, every little action I took during those weeks, revolved around managing my disease’s demands to an excruciating degree so that I could accomplish the one thing I most wanted: to be fully present for my mom’s journey out of this world.

My usual daily life, though, involves the same basic struggle of pacing all aspects of a life around illness. I obey all the rules of medication, rest and exercise—aware all the time that my healthcare needs represent a precarious balance: If I don’t receive the proper medical care, then I can’t work, can’t make money and can’t pay for insurance or anything else, either.

I’m on a tight leash not only with my physical routines, but also with my work routines—and especially with the way those two intersect. In January 2012, I made a New Year’s resolution not just to earn more income, but to develop my career so as to reach a more stable perch in life—which I figured out I could achieve, but only if I took advantage of every hour in the day. So I started asking friends who lived near different work sites if I could crash at their place for a few days at a time to minimize the commutes that drained away so much energy and so many billable hours.

It has worked—but it has not been ideal for me or for anyone, to say the least, to haul my belongings around and sleep on an assortment of guest beds and couches. This year, I continue to work more than one job, structuring my life to make sure I have enough of an income buffer to cover health needs while paying other bills—but because of that New Year’s resolution nearly two years ago, I was finally able to start working for myself as a lawyer focused on disability issues.

Living in the non-Obamacare universe, I spent much of the past year steeling myself for a big financial hit that would accompany my turning 40. It’s not merely the wide gap between the $484.47 I’m paying as a 39-year-old and the $613.48 currently on the books for a 40-year-old with the same plan; there’s also the fact that I’ve seen my monthly premium climb by about $40 every single year for the last several years. Those annual hikes had nothing to do with my age bracket—they’re just the reality of the insurance business, so it seemed only prudent to expect that I might be facing a $650 monthly premium come 2014. That would be about $2,000 more a year than I’m paying now.

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Comments 1 - 18 of 18
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1. Anonymous said... on Nov 27, 2013 at 08:31AM

“Hmmm. Thanks to O we switched and saw our premium go up 200 bucks/mo for less coverage.”

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2. Anonymous said... on Nov 27, 2013 at 11:57AM

“Yeah, sure you did. You switched to LESS coverage, then your premiums went UP? Nice try, though. Even Kentuckians are doing cartwheels over the ACA.”

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3. Anonymous said... on Nov 27, 2013 at 12:19PM

“My premiums will be higher under Obamacare. Funny that PW will print a story that represents the minority experience regarding the issue of affordable healthcare. The truth is this is just another example of left wing bias. I will never forget the year when the RNC hosted their convention in Philadelphia and PW ran a cover of a big elephant with the words "Get Out". That year the RNC brought millions of dollars to the small business that advertise in this little rag of a weekly paper. It became clear to me then that PW places ideology over their advertisers, and some of their readers.”

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4. Anonymous said... on Nov 27, 2013 at 12:30PM

“^^Yawn. Prove that this story represents the "minority experience regarding the issue of affordable health care." For those of us who read this paper regularly, it reads like an update to a story of an ailing Philadelphian who first talked about her health issues in a cover story sometime last year. If it reads like "left wing bias," that's 'cause the truth always seems to, doesn't it?”

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5. Peter C. said... on Nov 27, 2013 at 01:26PM

“Lets get the facts straight. IBC has a large block of substandard or guaranteed issue products in force. These products are community rated which means that young and old pay the same rates. Based on the original author stating Lupus I am under the impression she may be have been in this block. If wrong I apologize. The guaranteed plans are OK mid level at best. Great if it is all you can get. So in reality if you are 35 to 45 in a product like this you were overpaying to start. The new ACA IBC Platinum PPO is a great plan and now being age banded would be less expensive for new coverage in that age bracket. Not even counting a subsidy. 45 and older which were "blended" into the old rate structure will not see the same savings. For those in the fully underwritten universe who may not be in the "guaranteed issue" block will see no savings unless they qualify for a subsidy based on the pre-set income parameters. FACT!”

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6. Anthony P. said... on Nov 27, 2013 at 02:30PM

“Great for her, but it's people like her that drove the cost of my family plan from $694 to $947. Unless you have pre-existing condition, are a female thinking about getting pregnant or need mental illness coverage...Obamacare is a big loser.”

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7. Frank Rizzo said... on Nov 27, 2013 at 02:35PM

“Nice puff piece. I wonder how much they were paid to make it up. Firms are being paid with taxpayer dollars to plant just these types of pieces.”

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8. sylvia said... on Nov 27, 2013 at 04:54PM

“I also have lupus, among other conditions.

I could never afford to buy my prescriptions at Rite Aid, up the street.

I buy them through Costco's mail order pharmacy, which saves me 50-75 percent. The mail delivery is free. Customer service is excellent.

By federal law, Costco is required to fill prescriptions for anyone, not just those who are members of Costco.”

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9. Martha Stone said... on Nov 27, 2013 at 05:56PM

“Thanks for posting about the intricacies of transitioning into Obamacare with a chronic illness. It will be helpful to other lupus patients. I hope the best for you and your family.
I am a health educator, and I've started a blog and Facebook page called Wellness With Lupus, where you can find a lot of information on living as healthfully as possible with an unpredictable disease. Please contribute, as I'm sure we can use your expertise.”

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10. Terry Gibson said... on Nov 27, 2013 at 06:54PM

“i think this is wonderful news to hear at Thanksgiving! It makes me so happy for you, Jennifer. Take good care of yourself.”

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11. Baron said... on Nov 27, 2013 at 08:41PM

“Funny, my relative has lupus. That person reports her coverage thru work has risen 13% this year, and it rose the previous year about the same percentage. So, let's get this right now: my relative with lupus must pay for this person with lupus? Makes no sense!”

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12. Anonymous said... on Nov 28, 2013 at 01:15AM

“This is the beginning of a Obama media campaign of anecdotal "puff" stories that may or may not be true. The truth is that for every positive experience with Obamacare there are thousands of bad experiences. The average person will be paying approximately double for their Obamacare insurance. Insurance companies can issue policies under Obamacare at any price they choose because the insurance companies are guaranteed a profit by taxpayer subsidies. Be prepared for rationing, its in the law.”

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13. Anonymous said... on Nov 28, 2013 at 06:07AM

“At the writer, that's the idea of Obamacare, make all of us pay for you.”

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14. Anonymous said... on Nov 28, 2013 at 08:46AM

“No surprise this paper's paper issues are now barely a 1/3 as thick as they used to be. This dying rag now has to print propaganda pieces to stay afloat. RIP...”

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15. Anonymous said... on Nov 29, 2013 at 09:27AM

“Signed up. Got the amount the Gov would give ME. Got to the end of the application where I review everything and AM STUCK> NOONE helps on the help line HAVE BEEN STUCK AT SAME SPOT SINCE October 21!!!!!! I call everyday.. no one can help me!”

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16. PrettyFootWoman said... on Dec 3, 2013 at 10:44AM

“To some of the commenters that seem to balk at the fact that we may pay for others to get health care...I would rather pay for someone like Jennifer to get life saving health care...then to give tax subsidies to the Oil Companies...

I pray that we can continue to help our fellow citizens...who knows there might be a day when I might need life saving care..

Good Luck to you Jennifer...”

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17. Bill Lenner said... on Dec 3, 2013 at 02:44PM

“Despite the big right wing social media pogrom to try to destroy Obamacare, the truth is getting out. Yes, pogrom is spelled correctly. Obama haters should be able to recognize it from it's original usage.”

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18. Doug Edwards said... on Feb 5, 2014 at 04:36PM

“My wife and I were paying $2,400/month and held captive by BCBS of NJ because my wife has MS. With healthcare reform, our premium is now around $750/month with no deductibles, no preexisting conditions, no cap on the coverage, so I'll never lose my home ... and guess what, it's still with Florida Blue, which is essentially BCBS. Thank you Mr. President! We are now saving over $1,600/month! It's true! Same doctors, better coverage. Except for the slow start, I have absolutely no complaints, in fact I'll never vote Republican again. Anyone against this change is either in a great job where healthcare is included, or is a complete idiot ... and don't believe the television commercials ... a woman with Lupus who is now paying $6,000/year, but supposedly had coverage for $50/month prior to this? Give me a break! Stretch the truth a little more! Who gets healthcare for $50/month to treat Lupus? ... and if true, why doesn't everyone get it?


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