A-Croc-Alypse Now, Health Care, Rheumatoid Arthritis


I've been watching the news of health care reform town halls and listening to the way a minority whips up hysteria to avoid having an actual conversation about where we are as a culture and whether we have responsibility for one another and who deserves priority care and even what would be effective and efficient.

I keep hearing that most people are happy with their health insurance and therefore see no reason for anything to change. It seems to me they're neglecting to consider the possibility of losing their insurance and being unable to get more.

In the UCC we have insurance that is portable, which is to say we can take it from one job to another without having to be examined for various conditions, and that keeps us in the system whatever we may think about its cost to the churches we serve and to us in out-of-pocket charges.

I want my health insurance, more even than some people because I have a
dreaded "pre-existing condition." It's become crucial to my life and my family's security that I continue to serve in the UCC and to bring home the health insurance for all of us.

Meanwhile, churches are facing the same kind of economic downturn and financial concerns that we see in the rest of the world. They want to downsize. They wish they didn't have to pay for health insurance for pastors. Even in less independent-minded denominations, local churches are seeking ways to get out of covering a pastor.

That's bad for anyone but for a person with a pre-existing condition it's potentially disastrous.

I'll write more about churches later in the week, but for now let me say I worry that there will not be enough gainful employment for pastors in the not-so-distant future. I look out into a future of no church
jobs and see not only unemployment but poverty and uselessness.

Even if
I figured out some other work to do, I would be uninsurable.

It's hard,
in fact nearly impossible, for me to picture a future that isn't
catastrophic without my health insurance, and therefore hard for me to
separate my sense of call from my fear of being on the street. For me,
it won't matter if my husband can get another job with health
insurance, because no one will take me.

And if you are reading this and saying, wow, I'm glad that's not me, well, it could be. 18 months ago I was in vigorous health. I had lost a lot of weight and was exercising regularly and eating right. I felt great.

After shoveling a large amount of snow, I began to notice some shoulder pain, and then some knee pain. I thought I had injured myself, and I saw a doctor and then another.

Then one morning I woke up and could not bend my fingers. I had trouble getting out of bed. I could not open my bedroom door to get out into the hall and had to call my daughter to free me. Another night an 8 pound cat on the bed was enough to make it impossible for me to move the covers.

I'm lucky. My family practice doc got me right in to see a sports medicine doctor, and she listened to the physical therapist who urged her to send me to a rheumatologist. I responded well to baseline treatments that are relatively inexpensive compared to some of the newer medications. I work a regular, in fact a demanding, schedule. If I need the more expensive medications, it seems they will be covered, too.

Sometimes I feel crappy, but mostly the pain and stiffness are mild and I consider them to be background noise.

You wouldn't look at me and know I had a chronic illness. Well, I don't think you would. I'm not a Bible-era leper. No one is ringing bells as I walk along. I'm not contagious.

But an insurance company would look at me and see someone they did not want to know. On paper, it can't be hidden, this invisible illness.

So when I read stories about people who lost their insurance, I feel close to them. I know things must change. I want the people with the power to make the changes to stop being distracted by yelling and, frankly, to stop catering to people who will never do things differently or see the need for progress.

(Yes, that has a parallel to church life, too.)

With insurance and appropriate continuing care, I am a contributing member of society. But should I face a period of unemployment, I would lose the capacity to pay for those medications. I would become a burden to my family, both physically and financially. And when the money runs out–when the house is sold to pay for prescriptions–when there is nothing left–then I become a burden to the rest of you.

There has to be a better way.

40 thoughts on “Uninsurable”

  1. I have been told by a physician, that under the current policy in Great Britain that at age 57, I would be denied a stint if my heart failed because I would be deemed to old by the “state”. My daughter was denied health care because of a pre-existing condition, she took ritalin in elementary school. We appealed and she has a private policy, Whew, for now. I have “pre-existing conditions” myself and could not retire this year because I would lose my coverage if i did. The health care the would be universal I am afraid would not be the same as what the president and those in the senate and house are getting for life. i would love to have their health care. Seems there is levels of what is rationed, the best for certain tiers of society, in that way we decide who lives, and ides. My son has the current govt. policy as he is disabled….if that is what they are offering all Americans it is sub standard. Thankfully until he is 25 as long as he is in college he has my policy to cover him too. I am as you can see mixed about this, i wish it was offered to all but not what my son whould have if I didn’t have something superior from a private source.

  2. My church only provides health insurance for me, so we are praying that my husband will stay relatively healthy for another few years until he turns 65 and will get Medicare, since he doesn’t get insurance with his job. And if I lose my job or if the church can no longer afford to pay for my insurance I’m in the same boat as you, Songbird. I’m a cancer survivor and it’s hard even to get life insurance! We don’t have a house or substantial savings so any illness could spell disaster and homelessness for us.

  3. These are the stories–yours and many others I’ve been reading on blogs and elsewhere–that need to be shouted from the rooftops. All is NOT WELL in our healthcare system. I fear now that even if reforms are passed they won’t go far enough.
    And what I don’t understand is what people fear so much about reforming health care delivery. None of us–NONE of us–are safe from catastrophic illness or injury, and none of us can be sure that our health insurance will be adequate–indeed will still be there–when extreme need arises.
    Thanks for adding your story to the voices speaking out.
    And yeah, there is lot to be said about churches, too. I look forward to reading what you have to say. I have the same fear about seminary trained pastors–they are needed (I think so, and I hope that’s not just self-serving) and yet fewer churches can afford them.

  4. What a good subject for Labor Day, since health insurance is usually tied to employment.
    Being self-employed, I pay through the nose for insurance yet am under insured. I have a $2,500 deductible with an 80/20 plan; no vision, no dental; and maybe $300 in my HSA at any given time. I’ve never made a claim, and am terrified of ever having to do so, since my self-employed sister’s policy with a MAJOR health insurance company was terminated the first/only time she reached her deductible, which was when she was diagnosed with cancer.
    It took them six months to red flag her case and find an excuse to terminate her coverage. It was mid-way through chemo (and about two surgeries into what would eventually be five or six) when they dropped the bomb. She was far more stressed about the insurance situation than she was about the cancer.
    Ten years later, thank God she’s healthy, but she’s still paying off the $200K-plus medical debt. It ruined her credit score, making her ineligible to refinance her house which, ironically, would have freed up more money each month to pay down the debt. It also left her virtually uninsurable, except for a state-sponsored plan ($800/month for just her, super-high deductible, with no cancer-related coverage, no vision, no dental) run by the same company that terminated her original policy! She got married this year and was eligible to go on her husband’s plan. She still can’t believe she can actually go to doctors and not have to worry about how she’s going to pay for it.
    Anyone who says the system isn’t broken has never been un- or under-insured.

  5. I think Pam might want to check out this website, and I’ve quoted the relevant answer to what her physician told her. Although many physicians are strongly in favor of health care reform, there are those who for ideological reasons or just plain greed are spreading misinformation about the health care in other countries.
    “Question 2: In England, anyone over 59 years of age can’t receive heart repairs, stents or bypass because it is not covered as being too expensive and not needed—an anonymously authored, but widely circulated, email, largely sent to older voters.
    The Department of Health [in Great Britain] can confirm that this statement is not true. Access to treatment should be offered on the basis of clinical need. You may be interested to know that a national audit report on cardiac surgery, which has just been published shows that, in the United Kingdom, 20% of all cardiac surgery patients are over 75 years old.”
    I’ve heard differing stories on whether the health care that Congress gets is the same that I, as the spouse of a retired Civil Servant, get. I would point out that I still consider myself to be “underinsured” since high deductibles and the fact that there is no radiologist in Maine who is on our Preferred Provider list lead me to put off even examinations for fear of incurring huge radiology bills.

  6. Pam–I think your doctor is misinformed. As someone who has elderly parents in the U.K., I haven’t seen anything suggesting such a thing is true. My mother, who has a chronic health condition, says the care she has gotten under the National Health Service is far better than anything she got in the U.S. (She married a Brit and has lived there for 6 years now…)
    Songbird—this is why I keep trying to tell people, “You think it can’t happen to you, but it can—and most likely WILL.”

  7. Auntie Knickers (love that name!) mentioned radiology bills. Yikes! As someone with a deductible that’s so high I’ve never reached it, I always go line by line through the bills. It’s amazing what you can find – and dispute.
    I thought I was being double billed. The bill from the women’s health center had a radiology charge for a mammogram and biopsy, but I also got a bill from a radiology consultant I’ve never met, let alone heard of. The amounts were nearly identical. I called the health center. “Oh, we have to send out all x-rays to a radiology specialist to confirm our initial reads.” Yet they gave me the “all clear” in the office?? Basically, I was being charged for their standard “cover your butt” policy.
    I locked horns with the radiology consultant’s billing department, too. I couldn’t pay the entire sum at once, and a few years back (another biopsy) they’d allowed me to break it into 4 payments. So I sent a check for 1/4 of what I was told I owed. They sent me a nasty (supposedly computer-generated) letter demanding payment in full. Their customer service number was in another area code. Unwilling to pay long distance charges reach these people, I Googled for a local number. There’s no local office, yet these consultants include my city’s name in the company name! I sent a scathing letter to their out-of-town address, bringing their accounts receivable director to her knees.
    If they have the audacity to have my town in their name, they should have a local phone number, or at least a toll-free number if they expect people to call them to arrange payments. By the time I was done with her, she had wiped the remainder of my charges. (I received another bill the next month, but by then I had her contact info and she resolved it immediately.)
    The lesson: watch for hidden fees and needless charges.

  8. Auntie Knickers, thanks for that link. A lot of the information we receive is spurious in some way.

  9. Doxy, thanks for your comment. Your post about your friend gave me a push to write about this.

  10. If I got to make the decision, I would hope that America’s universal health care were something like the state sponsored care I have in Land o 10,000 Lakes – I rarely pay a copay and my dental is covered in it’s entirety (OK, I can’t get braces or a metal crown, but now all my teeth are intact!). I pay $29 bucks a month and not much else. Of course, I am poor, and it would be more if I weren’t.
    I have yet to see what will happen if I get really sick, but I know that if I need an ambulance I won’t be paying for it the rest of my life. Being a walker/public transit user in a winter state, that is such a relief – I have yet to break a limb slipping on the ice, but I figure it’s only a matter of time.
    I really liked this clip a friend posted on FB of our Senator (gosh, it feels good to say that!) If all our policy makers think and talk about things openly and thoroughly, maybe we’ll be able to come up with something great

  11. I don’t know where your physician got his information from, but he is totally and utterly mistaken. It is, in fact, mostly older people who need – and receive – heart operations like stents. My father is 85, nearly 86, and has recently had two minor operations for carpal tunnel that he arguably didn’t need, but which have improved his quality of life enormously (to say nothing of the shape of his hands). Is this a system which denies medical care to its elderly?
    Quite frankly, we here in the UK are shocked that people in the USA are denied health care as a basic human right.

  12. So glad I live in Canada and pray that the govenment gets its act together and resists privatization. My Dad had a heart attack a year ago. Called 911. Ambulance took him to hospital. 4 days there. Moved him to heart unit in St. John (one and a half hours aware). Many tests. There a week. Had 5 stints put in. Returned home. After six months registered in a heart rehabilitation program. Is in excellent shape, doing treadmill for 30 min. followed by bike for 20 min. (He’s 84). Cost – $0.00 (we do pay high taxes, but that ensures that everyone gets a reasonable level of healthcare). Wait times for some things are long now, but I wonder how much of that is pressure towards privatization for government controls the number of services available. Dad’s medication was expensive, one was not covered by medicare but a letter from the doctor ensured it was covered by his extra Blue Cross insurace. Extra insurance costs about about $100.00 a month.
    He also now gets VIP coverage as a vet and a home care worker comes in weekly to see that he takes his bath safely and do some cleaning.

  13. There are many ways a person can end up uninsured and uninsurable. In my case, I have great government provided, very inexpensive insurance because Taciturn is a military retiree. I also have pre-existing conditions–asthma, cardiac arrhythmia, myasthenia gravis, etc. I’m well cared for under our insurance as it stands now.
    But what happens if Taciturn gets tired of being married to a liberal Democrat and throws me over? (I do not expect that, BTW.) I’m doomed. At a women’s circle I sometimes attend, we talked about how marry marriages remain intact only due to insurance concerns. This is a huge problem.
    I’d like for everyone to have the government insurance I have, TRICARE Prime. I think it is hypocritical for those who have either Medicare or TRICARE to be against government provided insurance for everyone else. Grr.

  14. (This is reverendmother)
    My understanding is that at least one, and perhaps many, of the current plans being debated in Congress would prohibit the companies from denying you coverage because of a pre-existing condition.
    Have you heard this? I hope it’s true, and I hope it endures to the final version.

  15. Brilliant post, Songbird. As many others have said, stories like yours, told in this measured (though obviously and appropriately impassioned) tone, need to be told to put skin on the people that Health Care Reform would and could help and serve.
    I tweeted your post, and have been trying to post the link on Facebook, but FB doesn’t like me today.

  16. If I were to consider looking for other employment, I would be seriously concerned about my own pre-existing condition of major depression. I’ve been insured by the state of Texas for 23 years now and in treatment for that for nearly as long. Texas cannot escape me…but if I leave, all bets are off.
    If my spouse, in a similar odd-couple pairing to Episcogranny’s, decided he were to throw me over for being a liberal Democrat (also not anticipated here), HE’D be the one in a pickle. The insurance is mine. He is not concerned, because he enjoys incredibly good health for a man his age.
    So far. So far.

  17. Thanks so much for this post, Songbird. I’m still amazed how many people have no idea that they’re just one immune system malfunction or cancer diagnosis away from being uninsurable (and how many people think neither of those things could ever happen to them because they eat right and exercise). Keep telling the truth.

  18. I’m lookin’ down the tunnel at the approaching train of this. I suspect our badly behaved boys and girls in Washington are going to let this again fall through the cracks. And this time it won’t limp along another 15 years. It’s gonna take a crisis where enough of them or their relatives get sick with no coverage before anything intelligent gets done.
    You know, sometimes I believe we’d be better off requiring candidates for public office to come from backgrounds where they made less than $40,000 a year.

  19. This is a copy of a letter I wrote to the New Orlean’s newspaper. It was printed (without the last paragraph) on Sunday, August 30, 2009.
    As some of you know I am and have been a pediatrician for over 20 years. Every.single.patient I have is one serious illness away from bankruptcy and I treat the full spectrum of incomes.
    The letter:
    In this world we ration all our resources. We ration food, gasoline, land, law enforcement resources, educational resources, the time we give to each of our children, the attention we give our spouses and much more. All of this occurs based on the availability of resources and our individual and collective means to pay for these resources. If you do not think that Healthcare Resources are being rationed right now, than you are just not paying attention. What this country needs is to become more mindful and intentional in how this rationing occurs.
    When we do not ration our resources effectively catastrophes occur. In Louisiana, Civil Engineering resources were not effectively “rationed” and on August 29, 2005 we all saw the results. I, for one, do not want to have that level of catastrophe in our system of health care.
    We need Universal Health Insurance, whether it is through a well regulated private insurance market that prevents taking of huge profits by insurance companies at the expense of people’s lives, through a public option plan that competes with private insurance to make them more accountable or through government provided universal healthcare coverage..I Do Not Care. But, it must be done, it must be done soon. What is happening now is amoral.
    The only thing that is not rationed is Divine Love, that is limitless. But Doctors are not Gods, Senators are not Gods, Representatives are not Gods and our President is not a God. They and We are all trying to find our way through this complicated problem and do it in an honorable manner. Let us remember that as we continue on this path of reform.

  20. How do I get this to show on my Facebook page? I want all my relatives and friends to read the blog and the comments and then tell me who is fibbing about health care reform.

  21. I’m there with some of you. I have type 2 diabetes, diagnosed last April. My husband and I pay full premiums each month for our health insurance through his cabinetmaking business. But the recession has meant that most of his customers are not spending money, and so his business is earning pretty much nothing. He has had to take a part-time job for a grocery-delivery service that pays him not much more than minimum wage; at 48, he is “too old” and “too experienced” for any cabinetmaking firms to want to hire him. I am working 7 days a week, as a self-employed editor, to keep our family from going under financially. Even with that, though, we can no longer afford to pay our mortgage and so are in the “workout” process with our mortgage company, hoping that on the basis of our financial status, the mortgage holder (which just recently posted a huge profit for the most recent business quarter) will modify our mortgage for a while until we can again afford to make payments on it. We hold our breaths each month when it comes time to pay our $800-plus monthly health insurancy policy premiums. Without health insurance, we could not afford treatment for any of us and full prices for my meds for diabetes, depression, hypertension, and hypercholesterolemia; our teenage son’s meds for depression; and my husband’s, our teenage son’s, or our third-grade son’s medications for attention deficit hyperactivity disorder. Without my meds, I would die; without coverage for hospital stays, it’s possible that I could end up in a diabetic coma and die. Without their meds, my husband and sons would have a great deal more difficulty negotiating jobs and school. But most people in this country just don’t give a damn about anyone but themselves and so don’t want universal health care.

  22. We’re supply our own health insurance, and like Katharine, we pay about $800 a month, plus $2,500 deductibles each. I try not to think about what will happen if one of us develops a serious condition. We could be so easily dropped and never be insured again.

  23. I hope so, rm.
    I appreciate all your comments. I suspect that most groups of people we could gather together would include similar ones. How can we convince our elected leaders to work together instead of posturing?

  24. Oh Songbird, you KNOW this strikes a hot button for me as a health care provider. I have been absolutely shocked at the response of some to reform that we will HAVE to embrace before the entire system collapses. One physician I spoke with said, “People don’t understand that this is like the Titanic… and the bow is already under water.” To see the fear perpetuated and encouraged, and people shouting that they want “their America as it is!” makes me so weary and sad. I know change is hard, but it’s criminal in my mind that we, as the largest industrialized nation, have not yet figured out that in the end we ALL pay for those who can’t, and that it’s a travesty when a single catastrophic event can ruin someone for a lifetime. Change WILL come, and it may be that the entire system will have to collapse in order to see that happen.
    I commend Bonnie’s excellent post about her experience of health care in Canada:
    It is time for reform. Period.

  25. I am fortunate, in many ways, to be insured through my husband, a retired veteran. The military health plan has its flaws, but I am grateful for what we do have. I’ve been through periods of unemployment when I was able to remain insured through COBRA, but the cost was astronomical and put me in considerable debt as an unemployed person. There is so much work to be done when it comes to health care.
    Thank you, Songbird, for this eloquent post. And thanks to the responders for additional information and clarification.

  26. I hear you. Our older daughter takes a maintenance medication that, without insurance, would cost us hundreds a month. Her regular check ups would cost hundreds more. It’s not a stretch to say that when she tops out of our health insurance in 7 short years, that I don’t know how she will be insured…
    And yet people say that they don’t see the need for reforms…
    That in itself is scary, indeed.

  27. I hope that’s true, reverendmother. I also hope it includes a clause preventing insurance companies from drastically raising rates on people with pre-existing conditions.
    For many people the only upside of being un- or under-insured is that since you can’t afford to see doctors, you have no officially diagnosed pre-existing conditions. Of course, that also puts you at much higher risks of serious complications (or death) from those undiagnosed conditions.

  28. I’m totally with you on this. We are blessed to be in Medicare and to be able to afford a completely inclusive supplement to that. Sometimes I have a hard time with the medications, though. There was a period of nearly five years when George was unemployed and I was self employed and we had no coverage. We prayed a lot, and I was finally able to get a plan initiated for hospitals only. When I discovered an ovarian tumor, I had to wait for 4 months to have it removed, so that the new plan would cover it. It was grapefruit sized by then, and it took me two years to pay off the physicians involved, $5.00 each per month. This country is too wealthy for people to be denied health care. Medicare really does work for us – somethinglike this could work for all.

  29. Southern Belle, go to your Facebook profile page. Underneath the “What’s on your mind” legend is a series of cryptic symbols including one that looks like a tack on a bulletin board. Click it, and you’ll get a space to copy the URL into. I’m just about to do it now. This whole conversation deserves wider attention!

  30. Thank you for adding your voice to the choir, Songbird. We need more normal, regular people to tell their stories. I told mine on my blog here, and included links to Doxy’s heartbreaking elegy as well as to stories from others I know.
    Many prayers for you, as you live through RA. I know it’s a tough one.
    Love and blessings,
    Sister Hedwyg

  31. Songbird – as someone who lives in the UK, I have to say I’ve been pretty outraged by the misinformation spread about our NHS over in the States. So bizarre that my suspicious little mind almost wants to believe in conspiracy theories!!! Yes it has glitches, it’s a human construct, but by heck it’s a wonderful thing [the NHS, not my little mind!].
    I echo Mrs Redboots in her comments.

  32. Thank you for posting this. I thought private health care was fine until Feb when I developed severe pre-eclampsia while pregnant with my first son and was hospitalized for a week before my son had to be delivered 7 weeks early. 46 days in the NICU later we are all fine, but even with insurance we had huge bills.
    I couldn’t predict this, nor plan for it, and it could strike any mother-to-be. It has reminded me that compassion and not bottom line is the way to look at the world. I was lucky, I was insured and still am but I can only imagine the $250,000 bill an uninsured person in my situation would have been left with.

  33. Question???
    I have been called to full time ministry. In Fact, I was full time up until 2000. Then my wife and I helped plant a new church. In 2001 our third child was born, she had a Heart Transplant at 4 months old. Thank the Lord, I worked for a national company that had great insurance. My daughter, 8yrs later has autism and is under regular post transplant therapy. My ppo plan covers. 2 1/2 years ago, my wife had a brain tumor removed and now goes for quarterly MRI’s. She is doing well.
    Now that you have digested my story.
    After 9 years my wife and I feel lead to full time ministry. Is there any advice or answers for our Insurance dilemma?

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