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Tuesday, September 15, 2009

Government Insurance---A Personal View

We think a lot about health insurance in our family and, given the ongoing debate about government-funded and -run health insurance, we think it's useful and illustrative to share our experience with those of you who read this blog. We don't want to get into vitriolic debates about the issue--just tell you our story.

Basically, from what we can glean, we were very lucky to live in Pennsylvania when Hallie and Olivia made their extremely premature appearance at 23 weeks and 4 days, gestational age. All premature infants whose birth weight is under 2 lbs. 10 ounces (1500 grams) are defined as disabled by the Social Security Administration , regardless of the state in which they reside. This entitles them to payments of 30 dollars a month from Social Security while they are hospitalized. This doesn't cover much (in our case, parking a at the hospital was eight dollars a day at the reduced parent rate, so it didn't even cover a week's worth of stowing our car in the garage). But the issue wasn't the money; qualifying for Social Security allowed us to receive Medicaid for Hallie (although not for Olivia, since she never made it to a month of life). We didn't really understand this at the time, but the value of this government program for those of us with kids who faced multi-million dollar NICU bills and lots and lots of ongoing care by medical specialists is far from negligible.

Hallie's total NICU bill amounted to around 1.7 million dollars and Olivia's, for her short eighteen days of life, was around $300,000. At the time, we were very lucky to have been able to afford the best, and by far the most expensive plan offered by Sharon's former employer. The premiums were quite high, but it had the best provisions for fertility treatment, so we opted for it. That was a good decision since it kept our NICU costs at a minimum and, even more importantly, did not have a lifetime maximum on hospitalization coverage or an 80/20 payment provision that would have left us with a staggering bill that we could not have even covered had we sold our home and maxed out our credit cards.

Even though we had a comparatively small bill from the NICU, the costs of having a micropreemie are prohibitive. Once Hallie came home, we were faced with multiple visits to pediatricians and specialists per week during those first few months. She saw a pulmonologist, gastroenterologist, ophthalmologist, and ear nose and throat specialist for her crappy lungs, poorly functioning GI system, eyes that had sustained Retinopathy of Prematurity, and her paralyzed vocal cord several times apiece between October 2006 and February 2007. She had an upper GI, endoscopy, hearing test, several swallow studies, and a bunch of other specialized tests done during that period. She also saw a lot of her pediatrician -- culminating in twice weekly visits between April 2007 and October 2007 when we trying to figure out why she was always "sick" and constantly vomiting. On average, she saw two doctors per week, and those copays of 25 dollars apiece, plus copays for outpatient testing and various medicines would have crippled us (at one point she was on six different meds at once; we are now down to only four maintenance drugs and one rescue drug). Hallie was also hospitalized twice that first year at home. Her hospital stays do not begin to rival some of those of her peers, but between the stays, ER visits (and there were several that did not result in hospitalization), and testing she had done, the costs were considerable. Conservatively, we would have been paying on average 300 dollars a month for all this, plus parking fees at the hospital, were it not for the fact that Hallie was able to keep her medicaid once she came home from the NICU.

It doesn't seem fair to us that Pennsylvania residents are able to do this whereas residents of many other states cannot avail themselves of such a program, but in Pennsylvania, children with disabilities benefit from what is called the PA-95 Medical Assistance Loophole for disabled children. This program allows kids with disabilities, regardless of their or their parents' assets and income, to receive medical assistance, or medicaid, paid for by the state (in other words, the taxpayers of this state).

Medicaid covered the NICU copay and the copays for all the specialists and Hallie's primary care physician and it covered all of her prescription drug costs and hospital bills. It would have even reimbursed us for transportation costs though we never asked them to do this.

This was important when we had good coverage for Hallie under Sharon's plan at work but it became imperative once Sharon switched jobs and was not covered by insurance under her new job until three months had elapsed. (The one stipulation that Medicaid in Pennsylvania places upon those who use it is that, if you have private insurance, this must be billed before Medicaid jumps in to close the gap).

This happened on the eve of the onset of RSV season. I was able to get Hallie insured under my group plan from work but my insurance (which is my employer's best plan) is considerably worse than Sharon's was and it refused to cover synagis--which help boost immunity against RSV--for Hallie. Medicaid stepped in and paid the $2000 per month that these injections cost. My insurance would not allow us to take Hallie to her pediatrician at CHOP (even though his practice is in network) because its reviewers claimed that a pediatrician is a specialist and not a Primary Care Physician. The insurance folks insisted that we take Hallie to a general practioner instead but we felt that this would jeopardize her health if only because most general practitioners have no experience in treating micropreemies. So Medicaid picked up all of Hallie's doctor bills.

Once Sharon's new insurance from her new job kicked in, Medicaid remained a godsend to us. Sharon's new insurance allows for very few therapy visits (Occupational therapy, Physical therapy, and Speech therapy) and only approved 10 visits to the OT and eight to the feeding therapist, lifetime. In contrast, Medicaid allows Hallie unlimited visits to these therapists and this has enabled her to make a lot of progress on some of her Sensory Processing issues.

The only thing that we need for all of this assistance is a referral from our pediatrician. We have experienced no rationing of medical and psychological care and we never actually see most bills--Medicaid just takes care of them.

I never really had any experience with a government-run medical system before (we earn too much money and it's only recently that my mom, who is elderly, has had to deal with Medicare). But we are favorably impressed.


Cora said...

Yes, you guys are VERY lucky to live where you live. Our Medicaid was based soley on income after NICU discharge here in WI. Maybe we should move to PA?

Heidi said...

Thank you for sharing that! Here medicaid is based on income (factoring in family size) and assets post-NICU.

Anne said...

New York is, unfortunately, one state where income is considered in determining whether or not Medicaid coverage will continue post-NICU. The waiting list for a waiver is over 2 years long and the waivers are not handed out lightly.

I have seen many a post (not here)where someone insists that Medicaid always covers babies uner 1500 grams or even 2000 grams, until they are three years old, so parents need not worry. This may be true in some states, but sadly it is not universal.

Unless a person has been faced with astronomical post-NICU bills, they are clueless as to the financial toll co-pays alone can take. At one point Eliza was on 8 medications a month. Our plan has fairly high co-pays for medications ($10/$25/$50) and for office visits ($30/$50). For the first year or so Eliza's pharmacy co-pays were about $400 a month (she has yet to be prescribed a drug that has anything less than the $25 co-pay and usually the medications carry a $50 co-pay).

Your comment about Sharon's employer likely factoring in the huge medical bills your girls incurred is not completely off the mark. I had one lovely Oxfod UnitedHealth person tell me (as they were explaining yet another denial of a claim) "well you know we have already paid $2.3 million for your daughter." I told her that her compnay had taken a bet and had lost and they should move on from this ludicrous argument This was not the first nor last time I heard it from a company representative. Lucky for me we have unlimited lifetime coverage and frankly for the sheer joy of torturing Oxford UnitedHealth I will not be switching carriers any tim sooon.

As a small company we have no room to negotiate for better rates and can only chnage our coverage (usually for the worse) to keep premiums stable. I am astonished when I hear people in this country say that they don't want employers making decisions about their healthcare. Well we already are making those decisions: when we increase co-pays, limit therapy coverage, change networks, etc.

This system is horribly broken and offering a government or public option cannot be any worse than the current options most of us have.

Mary said...

hello! I couldn't find a "contact us" button-so I'm leaving this here. I am mom to a 3 mo 24 weeker still at Pennsy. The NICU nurses were kind enough to point me to your blog. Thanks so much for the links. Since I'm in Philly, your experience as documented on this blog is invaluable to me. I'd love to chat at your convenience. best,