Wednesday, August 26, 2009

Saying My Piece

I'm hesitant to write this piece.  I will undoubtedly offend some of my beloved readers.  I know that some of you will disagree  with some or all of what I have to say.  And I know that my daughter's story shouldn't be exploited for political gain or manipulation.  At the same time, though, I know that because of the road we have trod these past 18 months, I have learned a little bit about our medical and insurance systems.  And so, in light of these experiences and my deep theological conviction that all of God's children are loved equally, I want to share with you the conclusions that I have drawn regarding healthcare reform.  Feel free to ignore what I have to say, but please be nice with any comments you may have. 

Deep breath.  Here goes...

In 14.5 months of life, Becca has accumulated healthcare bills totalling about $831,000.  That's a lot of moolah. 

Flashback to 18 months ago, when we were preparing to move and change jobs.  Remember how I was all stressed out trying to make sense of insurance coverage, networks, alternative plans, etc?  Obviously, it's a good thing I worked all of that out, because our out of pocket expenses for Becca's care total $2000.  Out of $831,000.  (We had to pay more for my care, but that's kind of a long story - but only a few thousand dollars out of pocket for me, too.)  Even with our astronomical insurance premiums ($1760 a month for the 3 of us - thankfully not all of this is our responsibility), we made - as Howie would say - "a very good deal."  But we were very lucky.  Very, very lucky. 

When we first discussed the fact that we would be moving mid-pregnancy with our O.B., she assured us that "insurance can't deny you because you are pregnant."  So when I saw how much the premiums for the clergy group health insurance policy would run, I sought out other options.  (As an elder serving full-time, John has to participate in the group plan.  As an elder serving part-time (at the time), I had the option to shop around.)  I quickly learned that I did not qualify for any other plan.  Nobody (Blue Cross Blue Shield, Humana, Aetna, etc.) would even look at an application from me because I was pregnant.  And this was before I even had a chance to tell them about all the risks associated with my pregnancy. 

Thankfully, though, since I qualified for the clergy group policy through John's appointment, I was able to maintain coverage.  (This is what Dr. Walsh meant with her comment - that a group for which you already qualify cannot exclude you on the basis of your pregnancy.  That was good news, at least.)  Now, because of the way the pregnancy unfolded, I'm pretty sure that none of those companies would have anything to do with me -  even though I'm notpregnant...which means, of course, that without employer-provided health insurance, I am uninsurable.  

Becca, on the other hand, was born uninsurable.  Those of you who have had children in, oh, the last 40 years probably remember all of those mailers that you get about the Gerber Grow-Up plan - the life insurance policy that turns into a savings bond when the child turns 21 or something like that.  It reads like every child qualifies.  But not Becca.  I didn't even waste the time on a phone call.  Private insurance companies wouldn't go near her with a ten-foot pole, no matter how cute she is.  Simply by telling an adjuster her birth weight, I can get a good laugh. 

Again, though, as John's dependent, she qualifies for the group plan, so she's covered.  She actually gets double coverage right now, though, because since she is technically disabled (based on birth weight, health conditions, and developmental delays according to her actual birthday), she qualifies for TennCare, Tennessee's version of Medicaid.  (This is why we have paid less for her care than mine.  As secondary insurance, TennCare picks up the co-pays, deductibles, etc. that our private insurance does not.  But they don't cover helmets either, FYI.)  We LOVE TennCare.  It kept us from having to pay a second deductible on her when we switched insurance when she was 9 days old (a technicality of appointment changes in the UMC), and when the new calendar year rolled around.  It has covered the $15 co-pay we have for every doctor's appointment - and when you see a pediatrician and 7 specialists, those $15's add up.  (Remember how often we were going to the doctor at first?)  It has kept her prescription costs low (read: $0).  However, as I have mentioned before, there is a chance that she may lose her TennCare, due to the unknown ramifications of a recently-settled court case. 

Losing TennCare would be unfortunate, but she'd still have our primary coverage.  Except that....our primary insurance has a lifetime cap of $2,000,000.  If we anticipate Becca's being on our plan until she's 25 (assuming she's in school, so on and so forth) and remember that she's already $831,000 along, it's not hard to imagine a scenario in which she hits that cap.  What if her issues that we are just monitoring now become bigger deals?  What if she needs more surgery?  What if she gets in an accident?  What if she gets cancer?  What if....I need to stop thinking about these scenarios...but you get the idea.  It wouldn't be hard to do.  And that's a LIFETIME cap.  So what if, heaven forbid, she decides to become a United Methodist minister in Tennessee?  Oops.  No insurance for you!  (Okay, that's a long way down the road, but still, she's a year old, and already the deck is stacked against her.  Not fair.)

Again, we are good for now, especially since now that John is fully ordained, he is guaranteed an appointment (and thus, insurance).  But what would happen if (I can't even type this without tearing up) something happened to sweet John Hill?  Or, in a more mundane story, what if he decided that he wanted to change careers?  Or go back to school?  Or strike out on his own, as an entreprenuer of some sort?  Becca and I would be S.O.L.  So we really are John's dependents in the strictest sense of the world.  I hate that we are a burden to him in that sense - not that he thinks of us as a burden or minds it - but I wish that we were able to free him up to follow as God may lead.  (We're still planning on following as God leads; we're just trusting that God will lead us in directions that involve health insurance at this point.  Perhaps when we were younger (those were the days...) we could have gone without...now it would just be squandering the gift that God has given us in Becca.)

It is terrifying to me to think about Becca and me going without insurance.  It would compromise our access to care beyond emergency services.  It would definitely mean no more babies for me, and one emergency room visit with a hospital admission could financially ruin us.  If Becca starts wheezing this winter, I don't want to have to think twice about going to the doctor to check for R.S.V., when I know that quick treatment is crucial to her survival.    I don't want to have toweigh the importance of prescriptions against the need for food.  I don't want to have to live every day wondering if Becca's amazing strength will hold up.  (Okay, I do that last one already, but I don't want the threat of imminent bankruptcy to be the soundtrack to those worries.)

And think about this - Becca and I are privileged people.  I was born to parents who planned for our college funds before we were born (I think they planned, at least...somehow it worked out and I was expected to go to college).  I had access to education, extracurriculars, healthcare, good role models...I'm not saying my childhood was perfect; I'm just saying that I had everything I needed to get ahead in life.  And I think I made good on it.  I'm not a shiftless lazy slouch who is whining that nobody is giving her free healthcare for doing nothing.  At least, I don't think I am.  And sweet Becca, as we know, has had to fight from the very beginning.  And she's just a kid!  How could she have done something wrong already? 

Becca and I have not fallen through the cracks, and for that, I am deeply, deeply grateful - to God, to John, to all of you fabulous taxpayers, to our families.  But it does feel like we spend a little time every day, standing on the edge and peering down into that crack.  Because I know, all too well, that at any moment, life can change, and we could be sent plunging. 

A system that allows people like me and Becca to live so precariously is not a just system.  I'm not saying that Becca and I are special. (Okay, I am saying that she is special.  But I'm not.)  But John and I have been responsible people who have made responsible choices.  I would just like to see those choices made available to everyone.  It might mean that those of us with great access to excellent healthcare would see some changes.  Perhaps we would have to wait longer to see non-emergent specialists.  Perhaps our beloved doctors would have to bill a little bit less.  But isn't it just like the stewardship of all other resources?  As in, don't those who have a lot need to share with those who have little in order for everyone's (both the giver and recipient's) needs to be met?  Isn't it possible to think beyond ourselves, even in matters as personal as healthcare?

I am a "Reverend," and I do have both a B.A. and Master's in Religion, but I'm not in the business of guessing what Jesus would say or do about much of anything.  Just a quick glance at the Gospel of John reveals a Savior as enigmatic as loving.  But I do think that Jesus spoke pretty specifically on this matter in Luke 10.  To the "expert in the law," Jesus tells the parable of the Good Samaritan.  You know that story, but let me refresh you.  Jesus tells the expert that in order to fulfill the law, you must love your neighbor as yourself.  In defining who one's neighbor is, Jesus tells a story about a man robbed, beaten, and left for dead.  Several people pass the man by, but the Samaritan acts as a true neighbor and provides care - healthcare - for the man.  In verse 37, Jesus tells the expert - and us - to "go and do likewise." 

Friends, this is our chance to do likewise.  This is ourchance to to show mercy to our neighbors, whatever their scenario may be.  It's not our place to judge if someone is worthy of care, whether or not they are down on their luck or have squandered their opportunities.  Because life is not a level playing field.  Look at Becca, for Pete's sake.  Please talk with your senators and representatives and encourage them to pass significant healthcare reform that guarantees access to healthcare for everyone - regardless of their pre-existing conditions, their previous health costs, or their employer's prerogative to offer (or not to offer) insurance coverage.   And please, in the process, show the same mercy and respect to those with whom you agree and those whose opinion couldn't be farther from yours.  Please, let's learn to be good neighbors.

p.s.  Just to head off anyone who might be ill-mannered enough to say this - in my reading of the prominent bills (not word for word, but pretty thorough for one who is no longer in the legislative business), I have found absolutely nothing that would have impacted the kind of care that Becca received.  There are not weight limits, definitions of viability, limits on care except as deteremined by a patient and his or her doctor(s).  I did find a greater emphasis on quality pre-natal care, which is proven to reduce the risk of premature birth.  There are no "death panels," no support for abortion, and no, as I read on a sign outside of the town hall meeting I tried to get into tonight, "Obama-care [does not equal] Granny's going down!"  And please, whatever side of the issue you are on, think about the words you choose before you put something on posterboard and wave it around for the cameras.  Seriously.

31 comments:

  1. This made me tear up. We pay about 40% (State and Fed) in taxes each year, which knocks out a lot of $$ for a family of 4 but every year God provides us with more than we have ever dreamed and a whole lot more than we deserve so I don't mind it. And we'd be fine if we had to pay a little more so that someone else, perhaps a child, mother, or father can have access to healthcare.

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  2. Well said, Nancy. Definitely a great post.

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  3. I am so glad you posted this. I don't think the majority of people understand mounting medical bills and what it is like to be denied insurance and to have a life time cap. You need more people to hear your story!!! Thumbs up Nancy. Write your US Congressman and Senator, call too! I have on issues in the past, it makes you feel like your voice is being heard. SMILE !!!

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  4. I couldn't agree more. Becca deserves every chance she can get, no matter who her parents are, and if she hadn't been fortunate enough to have you as parents, who knows what would have happened? This is a justice issue, and it is incumbent upon those of us who are blessed (and sometimes cursed) with abundance to look out for others who are not so fortunate.

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  5. All I can say is that I know exactly where you are coming from. Our circumstances are different yet similar. Emberlynn and Cohen have not racked up as much medical costs as Becca has; however, their disease is progressive and incurable and will require a lifetime of doctor visits, hospitalizations, medications, supplements, therapies, etc., etc. When Emberlynn was in the hospital for 5 days for I.V. antibiotics, her total hospital bill, minus physician charges, was a whopping $18,000. For 5 DAYS. And her Vest that does her therapy was over $16,000. Her monthly medications alone cost about $10,000. That's $120,000 a year, and she's only 3. Cohen's cost less b/c he is not on as many as her, at least not yet. I'm right there with you when you say thank goodness for TennCare. We do pay for private insurance through Matt's work for our family, so we are not trying to just get hand-outs, but when you have a family that makes as little as we do with 2 kids who have a disease that is not only devastating in itself but also financially devastating, it's comforting knowing we have somewhere to turn. Emberlynn is "disabled" according to the government and receives TennCare based on that; however, Cohen is not seen as disabled b/c his CF is not "as bad" as hers is at this point, and we don't qualify based on income b/c you apparently have to be dirt poor, never mind the fact that lately it's come down to choosing between paying our mortgage or buying groceries. But back to the case in point. We have to pay Cohen's copays for doctor visits and prescriptions, and those add up. Thank goodness TennCare picks up what our private insurance does not for Emberlynn's doc visits and scripts, because otherwise I'm sure we'd be homeless.

    I think this quote from americanhealthcarereform.org sums it up best: "Other than insurance companies, I don't know why any American would be against this plan. While it is not my ideal which his single payer national health insurance, a public option is much better than nothing - a great start to rein in dishonest health insurers who continuously deny insurance, deny care, and raise rates. The concept of Obama's health insurance reform is to get everyone covered with affordable health insurance- either through private insurance OR a public insurance plan - coverage that does not discriminate if you have a pre-existing condition; coverage you cannot lose if you lose your job; coverage that does not have caps just in case you are hit with a very expensive catastrophic illness. Who, but the insurance bullies could not love this plan?!"

    You also mentioned something about the Gerber grow-up plan. I tried to enroll Emberlynn when she was a baby with the intent of her being able to use that money for college later, and they may as well as laughed in my face b/c they said she was not eligible b/c of her CF. It was just so upsetting b/c they may as well have said, "Sorry, lady, we can't give your kid life insurance b/c she could die young from her disease." Needless to say, I didn't try it at all for Cohen, and admit I would spitefully throw away any offers I received after he was born. It's just not fair to our kids; they did nothing wrong, and they aren't seen as equal w/ other kids who are "healthy."

    I'm with you, Nancy. And I don't think President Obama is a stupid man. I feel like he knows what he's doing. I don't think he gets enough credit. Like Matt said when we were discussing this: "I don't think Obama went in and said to himself, 'I'm gonna get in here and really screw things up.'"

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  6. Becca's Aunt PeggyAugust 26, 2009 at 4:45 PM

    Nancy....you, my dear, need to be a free lance writer! I can just see this post in Reader's Digest, New York Times, etc. Very well written! Bottom line....we have to do what we have to do. Smart, educated decisions for everyone's individual situation is the only way to go. Don't be too quick to judge until you've walked in their shoes. Remembering all along the way, to be kind to one another in word, thought and deed. Gee......I'm getting old!

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  7. Thanks for sharing your experience and thoughts. I don't know how to fix the system, but I do know it needs to be fixed. I hope everyone who embraces the status quo can hear stories like yours.

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  8. Excellent Nancy. As of August 12th, I am a "LPR" in the USA. (that means I now have a GREEN card - which is white). The only scare I have in basing myself, my wife (also a Rev) and our kids in the USA is healthcare. Without socialised medicine, frankly, I would be dead, and my wife permanently disabled. We have lost a child in the USA, and the bills were unbelievable. Without the help of the church and friends, we would be bankrupt on top of our grief. Roll on healthcare reform. If not for me (or us), for our kids!

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  9. I used to work as a medical secretary (and did the billing - this was pre-computerized billing). I have to tell you... it was a pain. Things would be denied for the stupidest reasons. Tests would be demanded to "prove" a diagnosis and then the insurance company would not pay for the tests when they did... sticking the bill with the consumer. And let's not even TALK about malpractice insurance. UGH.

    I am tired of the jockeying and outright lies by insurance company lobbyists. In healthcare reform, they are the ones who stand to lose the most... and the consumer will gain.

    What would Jesus do, indeed...

    Deb

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  10. Thank you so much for this, Nancy. I think it really helps for people to see this doesn't just affect those they deem "lazy" but as you said, privileged people as well. Bless you, John, and Becca!

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  11. Be very glad you have Tenncare. We don't qualify for Medicaid. We pay tens of thousands out of pocket for Drew's treatments and therapies. The insurance system sickens me and lifetime caps are ridiculous. Jeff spends HOURS, yes HOURS, each WEEK fighting with these stupid companies. They basically count on people with no time or knowledge of the insurance practices. Good thing Jeff was previously in health care consulting. It's so draining. I love it when people think we get free handouts b/c we have a child with a disability. We get nothing (well, like I told you we don't have to wait in line at amusement parks). Anyway, would you trade your healthy child for one minute to get "extra" (miniscule) amounts of money? Gimme a break. I think every CEO should have to spend time with a sick/special needs child every week as part of their job. Take them to their therapy. Work with them tirelessly at home. Watch families become bankrupt (which is all too common amongst the autism community) to pay for their child's therapies. Watch families fall apart from the stress of it all. I guess what I'd like to see is some of the "business" aspect taken out of the insurance companies. The almighty dollar is their God. I sure hope to hell we can someday provide to those who need it without regard to finances and making a buck. There--I'm off my soapbox now and gonna go about my day. I have a headache from trying to think before 8am without my coffee!!!!

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  12. Nancy, I can kind of relate. Thane was in the NICU for only 10 days (nothing compared to what you had to go through) and his medical expenses were around $54,000. We looked into an individual policy for him because adding him to the Conference health plan just wasn't going to work for us financially. Because of Thane's NICU stay, he is also not coverable through insurance on an individual policy. He will have to be covered under my insurance or my husbands insurace in order to have any at all. Thankfully, my husbands insurance cost less than my insurance to add the children, so that's where he is now.

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  13. Well put. I want to print it out and hand it to anyone who starts talking to me about this. Behind politics and agressive conflict- there are human stories that need to be heard. I wrap my whole heart around your story.

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  14. Courtney Preston KellnerAugust 27, 2009 at 3:16 AM

    Nancy Speas Hill!! You are such an amazing woman. =) I am so happy to call you a friend. This is so touching and incredibly moving. Your experience is something that can totally be a catalyst for change. Thanks for sharing!

    Also... write senator McConnell. =) That's all.

    Love
    Court

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  15. Thank you so much for this sane and well-written posting. We are "insurance poor" at hour house trying to make sure everyone stays covered. It is the biggest expense we have other than our mortgage payment. Co-pays are still high even so.

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  16. Nancy,


    This is beautifully written and I feel very blessed to have met your family.

    I hope you do not mind, but I posted a link to your site and I have some readers that would like to know if you have a fund set up where people can contribute donations for Becca?

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  17. Thank you, Nancy, for sharing your story. I agree that any follower of Christ should take their responsibility to love their neighbor very seriously, including making sure our neighbors receive the medical care they need. I just wish the government would let me take care of my neighbor rather than taking a mandated percentage of my money and then wasting most of it on bureaucracy. If taxes were lower, we would all have more money to give to individuals in need, either directly or through our churches and hospital foundations. And doctors should also be allowed to discount treatment for those in need--right now, it is a CRIME for a physician to charge someone less than they charge Medicare. It is a shame that the Church has fallen down on our job to take care of the needy, because I have little faith in the government to do an adequate and efficient job.

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  18. Great post, Nanc! Thanks for sharing it and sharing beautiful Becca with all of us! =0)

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  19. Nancy,
    Brooke Kelly posted a link to your blog and I am so glad I read it. Thank you for sharing your story! Our daughter, although healthy, is on CoverKids (part of TennCare/CoverTN), not because we are lazy and don't work or didn't plan for medical insurance costs; instead, it's because I was laid-off when I was 5 months pregnant with her. Cobra coverage was not available, and although my employer "graciously" offered to continue my coverage if I paid TO HER the monthly premiums of $540, we just could not afford monthly premiums of $540 with only one income. I applied and received Maternity Only insurance through CoverTN, at no cost to me. What a life saver that was in such a difficult time! I don't know what we would have done without it, but we certainly would be bankrupt by now. I saved the EOBs from my delivery and they total over $10,0000!!! I had no complications and a very easy delivery and I can't even imagine the cost for a c-sectios or other complications.
    I am grateful that such government programs were available to us and should be available to ALL PEOPLE.
    Keep telling Becca's story!

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  20. As a Canadian reading your blog regularly I can not imagine having to worry about the bills of medical care. Having to make a choice between health for your children or going bankrupt is completely inhumane. Sure, our healthcare system is not perfect here (longer wait times, not as many doctors) but I have never paid a penny for any care from my doctor or in a hospital. Healthcare is a RIGHT, a right for all incomes, all people, not a privilage for the insurable and "upper-class". I wish God's richest blessing on you and your precious family.

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  21. Thank you, thank you, thank you. You have written a beautiful, rational point of view on a sensitive topic that will hopefully persuade others to stop and think. Here's to being truly pro-life.

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  22. Amen, dear friend. Thank you for your honesty and vulnerability. I learned a lot in this.

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  23. Beautifully written. You are right. It has always confused me that people don't understand that if we share the burden we can all benefit - by caring about each other.

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  25. This is amazingly well written! I am so proud to be your friend! Thank you for taking the time to spell this out so clearly and with such a personal touch. You never cease to impress!

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  26. Nancy, I just read this and am so glad to have had done so.

    The sad thing is that even if there are generous people in this nation, we cannot "help our neighbor" enough to take care of $1 million worth of medical bills, and the ridiculously corrupt insurance providers in this country have set things up so that there HAS to be a government intervention. It's really disheartening to read Facebook updates and hear snide comments from people who say that they should not have to give their tax dollars to people who can't afford--or even OBTAIN--insurance. They don't know just how complicated things get, or just how fortunate they are.

    Sometimes I hear people who would call themselves really good Christians utter things that to me are so heartless and insensitve that it's hard not to want to lash out at them. From now on, I think I might just direct them to this post.

    I actually just went back to look for a Facebook status that a "friend" posted a few months ago that left me seething--I may have to go ahead and link her to this thoughtful, poignant and well-written account to let her see just how hateful her generalizations about TennCare recipients sound.

    [Her post was this: (name ommitted) just paid $126 for a Rx that if I was on TennCare cost $10! So this month I paid $100's in health ins premium, $35 co-pay for dr visit, another $37 for lab wk b/c ins only covers 80%, plus $126 for the 'script: for a total well over $500. BUT if I had been a broke gov't-welfare-dependent POS I could have gotten all of the above for the low price of $10 (the cost of the Rx b/c the rest under TennCare would be free!)--this crap about the gov't giving people a "hand-up" instead of a "hand-out" is, I repeat, total crap.]

    No, it's not total crap. It's a messed up system and there is no easy fix, but there are so many beautiful, deserving people who live in fear that they and their loved ones will get sick, it is shameful. I hope that enough reforms are made that you and Becca are assured that you will never lack the care that either one of you needs or deserves.

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