My ticking time bomb

I've been paying for group health insurance for years through my various employers. When I signed on to my new job, I signed up for their insurance. I have always had decent if not spectacular levels of coverage through my employer provided plans.

I have suffered from migraines for a long time, but in the past few years they have been getting much, much worse. I've gone from having them once or twice every 3-6 months to having them as often as 2-3 times a week, and very often they are extremely disabling.

This past May (09) I was having some very severe ones that would just not go away and I decided enough was enough and looked up a migraine specialist and made an appointment with him. He sent me to get an MRI to make sure that there was nothing else going on, like tumors, masses or other icky things. There weren't any of those things, but what he did find was little white spots called "Undifferentiated White Matter" and said it was possible that I had a heart defect called a PFO, which has been found in up to 50% of individuals with migraine. He said that the spots were indicative that there may be uncleaned blood passing through the defect and going up to my brain. I went to get another test, this one called the "bubble test" or trans-cranial doppler (TCD). This one is the definitive "Yes, you have this condition" test, because no bubbles = no hole. Of course, it was positive, and so I went for my final test, the TEE which would tell the cardiac surgeon just how big the hole was, the location of it, and give them information which would be helpful during pre-surgery planning. My cardiac surgeon told me that it was possible that my more severe migraines were actually a form of TIA or transient ischemic attack and that I could be at a higher risk for a form of stroke called cryptogenic stroke. He wanted to put me on anti-platelet medication and schedule an operation as soon as possible to close what he called a "pretty large" opening in my heart.

Soon after all of my tests were completed, I started getting unpaid bills back. When I investigated, I discovered that I do not have health insurance coverage of any stripe. Instead, I have something called limited medical coverage that basically caps any payment on a per-person, per-calendar year basis. I get $1000 toward doctor visits, $750 toward tests and a few other "benefits" such as $3000 toward hospital stays (but not toward doctor visits, surgeries, tests or care while in a hospital. Just the stay.)

I thought I was getting actual insurance, because of the fact that I'm paying just as much for this coverage as I did at my previous employer ($450 per month) and that the "plan" was administered through United Health Care, which we've been on before. I was also misled by the plan documents which told me I had a "comprehensive" plan. FORTUNATELY I guess for me, I discovered that I didn't have any coverage before I went into surgery and got even further into debt.

Now, I'm almost $10K in debt just for 2 months worth of doctor visits and 3 tests, plus one ER visit for a reaction to a new migraine medicine I was taking. I saw my migraine doctor three times, and my cardiologist once.

I won't be able to get my PFO closed through surgery, which could alleviate my migraines permanently, and I don't have enough prescription coverage to buy the anti-platelet medication. I take a little aspirin every day to try to thin out my blood so it won't clot. My cardiac doc told me that the PFO surgery was "10 minutes and $30,000". I've investigated medical tourism but decided it was still too expensive at roughly ($10-15,000) on top of the other debt that I incurred from May-July. My heart is now a ticking time bomb. Having an unclosed PFO puts me at a much higher risk for a stroke, which could cost me thousands of dollars and potentially leave me partially disabled.

The big kicker though, is that I wouldn't have even been able to get private coverage even if I had discovered this before I switched employers, due to the pre-existing conditions that I had even prior to switching jobs. I've actually tried to do that since discovering my lack of coverage, and now it's even worse since I have been diagnosed with a heart defect, NOBODY will cover me. So essentially, my family and I are all un-insured for anything more serious than the common cold, and we will be lucky if we don't lose our house over our medical bills. I have no choices left. State-provided high-risk insurance coverage for my family would cost me nearly $1100 per month for my husband and myself, (IF we could get it, we can't) and we make just over the limit for getting state coverage for our kids. In addition, we would have to purchase a separate children's insurance policy for our children averaging an extra $130 a month, bringing our total health care cost to around $1300. Per month! This is almost as much as our mortgage, and would represent a huge chunk of our family budget.

I think reform is not just a necessity, it's a mandate. We HAVE to change how things are done. If insurers were not allowed to deny people based on preexisting conditions, my family wouldn't be un-insured. If we could choose a public-group pool insurance, I wouldn't have to stress out at wondering if my kids will be healthy, or always feel like the other shoe is about to drop. OH and I could afford to get my heart fixed!

Health insurance reform is easy to ignore when you don't need it. It's a sad state of affairs that most families in America are just one serious illness away from bankruptcy.

by Tara Sudweeks Willgues, Instigator-in-Chief
Utah Health Care Reform

(edit - added 2 more links to more information. Also someone asked me about my current coverage through my employer, and no, they do not even offer another type of coverage. I basically have the "best" insurance that they offer already)

(2nd edit - my husband insists that I include the part where we are still paying for our crappy excuse for "coverage" so we don't lose our COBRA rights, as the final indignity to this story)

(3rd edit - I do not qualify for Utah HIP insurance because I am employed and have existing "group coverage")