Archive for the 'The Best Health Insurance In the WORLD!!!!' category

Annals of Elder Care: The Joy of Power

For five years I served as my mother's financial power of attorney. She had some complicated finances, and some very complicated health issues. Anyone who has done elder care for five minutes knows that "complicated health issues" = mounds of paperwork and hours of time per week dealing with it.

When mired in the thick of elder care paperwork muck, few people have time or energy to seek out others dealing with similar issues. It's not like everyone gets together at the elder care park, letting their loved ones frolic on the swingsets and seesaws so that serious information sharing and necessary venting can take place. There's really no place where people charged with caring for ill or elderly loved ones can regularly gather, except the internet.

That's why I thought it would be worth sharing some of my experiences.

Today's topic is the The Joy of Power.

If you are FPOA for a loved one, you may find yourself in what I call a unicorn family - everyone gets along, each person does what they can, and everyone's highest concern, ever and always, is the good of the loved one.

Or you may find yourself in a, shall we say, more realistic situation. In non-unicorn cases, the FPOA is understood by some or all family members to be controlling, conniving, and deceitful, and robbing the loved one blind. In short, their absolute power has corrupted them absolutely. Sadly, in far too many cases, something like this does happen. I have seen a son rob his mother of nearly everything, leaving her destitute and malnourished (while calling in bomb threats to the local school in his spare time).  I have seen cases where siblings are denied medical information about a parent by sibling(s) in control, who then feed the parent stories about how and why the denied siblings are evil. I have seen a child trash a parent's house, be evicted, and return to do it again. Money makes people crazy. The very wealthy are not exempt - Donald Trump, for example, once cut off health care for a sick child - his grandnephew - because the child's family contested Donald's daddy's will.

But in most cases, the FPOA is just a blindfolded donkey turning the millstone, taking the wheat of conflicting paperwork and grinding out the flour of financial stability, often as not with one or more family members pulling the cord tied to the mouth, the better to keep the FPOA turning in his or her tracks.* Jesus said of little children "But whoso shall offend one of these little ones which believe in me, it were better for him that a millstone were hanged about his neck, and that he were drowned in the depth of the sea." Taking to the waters with a millstone necklace often seems preferable to continuing in the traces. But escape leaves the loved one behind.

Here's a fun memory from my time in the traces that illustrates just how delightful it is to wield all that "power" of the FPOA.

In October of 2011, a collections agency sent a threatening letter demanding immediate payment for an overdue bill for my mom's visit to a doctor at a local clinic in June of 2011. Although the visit was for mom, the collections agency threatened me (and thus my credit rating).  I spent half an hour combing through old explanation of benefit forms, and two hours on the phone with Medicare and Blue Cross to determine that the bill had actually been paid and when it had been paid. The next day I spent half an hour on the phone with the collection agency who demanded physical proof in the form of faxed copies of documents from Medicare and Blue Cross stating that they had actually paid the bill. They demanded this proof by the next day.

A special sweet irony of the whole mess is that the person at the collections agency initially refused to talk to me because even though I was mom's POA, and even though the collections letter was addressed to me and even though it was my credit rating that was at stake, and even though they were trying to get the money out of me, the medical appointment was for mom and so they didn't want to discuss the issue with me because of "privacy issues".

I spent fifteen minutes trying to figure out how to get to speak to a person, not voice mail, at the clinic’s billing department to find out why they turned a paid bill over to collections and how to get this undone.  I finally got a helpful person who promised to undo the mistake and who caught another one that was about to be sent off to collections.  Someone submits a bill with incorrect coding, it comes back from insurance unpaid because of the error, and then someone in billing sees the bill is unpaid and sends it off to collections rather than fixing the error.  So it is probably more rather than less likely that you will be dealing with this scenario in the future, if you are so lucky as the be the donkey FPOA.  The person at the clinic offered to call collections and send them documentation and I planned to check in again later to see that things had been resolved, after I received copies of everything from the helpful clinic billing person. This all took another half hour to 45 minutes. At that point, I just assumed, till I knew for sure, that I was not yet done with the issue.

If you are keeping track, that is nearly four hours of time (not counting time out for cursing and despair) on ONE issue, that may or may not have been resolved. (Luckily for me, that was the end of the story.) When I worked in pharma, at one company we tracked our time in 15 minute billable units. Alas, there was no billing code for my four hours of labor, and so my end of the week timesheet in that system would have shown ten percent unbillable hours, which is the same as not working in the business world, and I would have been on the edge of reprimand.

I do not know how people with full time jobs outside of being a FPOA manage to get all this sort of thing done. When feminists and economists talk about the unpaid labor of women, it is precisely this sort of thing they have in mind. Mind you, the 45 minutes the clinic billing person spent on the phone with me resolving this issue, plus whatever time she spent after we got off the phone, was paid but unproductive labor. No one’s unpaid bills got paid, no one’s health care status was advanced, nothing was achieved but once more subverting the malicious effects of an avaricious, antagonistic, and ill-designed health care system.

If you are FPOA donkey, turning in your traces, grinding the most illogical paperwork nightmares ever conceived into dust, day after day, I salute you.

*I thank Country Life (The Journal for All Interested in Country Life and Country Pursuits), Vol 24, Oct. 17, 1908 p. 515, for the anecdote that inspired my FPOA-donkey metaphor.

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Shredding Event

Some few weeks ago my township held a semi-annual "shredding event", an occasion for citizens to bring forth their accumulated piles of dossiers and documents to be fed into a giant communal shredder, lest our identities be filched and/or days of our lives given over to feeding two sheets of paper at a time into our home shredders.

This was my pile:

To be shredded...

To be shredded...

It might have been much bigger but that was all I could part with at the time.

The pile contained all the Medicare statements and Blue Cross EOB forms I had received for my mother during the time I was her power of attorney. I held on to these until her estate was closed and we were sure all outstanding issues and bills were resolved. It has been many months since the estate closed and I have no further legal need of these documents. But I found it surprisingly hard to let them go.

I browsed through them and their listings of date of service, provider, and service provided. I remembered many of these "services provided", some quite vividly. There were routine doctor visits on which I had accompanied her. There were the "pain shots", the epidural steroids to relieve the pain of her spinal stenosis. Organizing those was like planning the invasion of Normandy, given the astonishing difficulty in communicating with the doctor's office; the need to coordinate scheduling with availability of someone to take her there; and the trickiness of managing all this for someone taking coumadin.  There were the ER visits for falls and other minor emergencies. There was the mountainous paper trail generated near the end, when she bounced from assisted living to hospital to rehab hospital to nursing home and back around till the final bounce home to die. Sometimes I looked at dates and events in disbelief: did that really happen then? so close to the time she died? did all those things really happen so close to one another? Or, oh my god I totally forgot about THAT! How strange, I thought, that these impersonal medical records hold memories of my mother I'm struggling to piece together.

When my father died (young, in his fifties), my mother was devastated. She could not bear the idea that he would go underground. When my brother died, eight months before my mother, we helped her to her feet beside his coffin in the funeral home for the "last goodbye". Though she could barely stand she kind of launched herself at him, weeping over his dead form and declaring "oh Paul, it won't be long, I'll be coming after you." She did not want him to go underground, either.

When she lay dying at home, mostly robbed of speech, she communicated to me one day with great difficulty: "I'm afraid to go in the ground." I don't remember what I said to comfort her beyond "I know" and "I'm sorry" and maybe the pitiful "it will be okay".  I don't know why I didn't ask her why this fear was so strong. Lifelong devout Catholic, each Sunday at Mass she recited "I believe in...the resurrection of the body and life everlasting" and yet in the face of death it appeared this was cold comfort. When her youngest brother, the one she raised from age seven, died before her and was cremated, she did not like that any better. She fretted over how his body would be resurrected at the end of the world. I tried to assure her that if God could do anything, He could surely put her brother's ashes back together in the form of his body. She remained unconvinced.

When she died it was some time before I could leave her side. This parting, unlike every one before it, would not be followed by seeing her smile yet one more time.

I believed I was relatively blasé about the subject of corpses and what should be done with them; I often told Mr. Z he should have mine turned into compost for my garden. At the funeral home, it did not seem to me as if it were her lying there. In the bustle at the house the morning after her death, we could not find her glasses. Lying there without them, that face could have been a wax doll.

And then at the cemetery, the graveside service ended, I wept the tears of a motherless child. I did not want to leave. I knew they would put her in the ground when we left. And she did not want that. It did not matter that she was beyond wanting. Finally, my younger sister said through her sobs and tears, "We have to let her go. Come on. We have to let her go." It was like breaking a spell; her words gave me permission to leave. I let her go, I let her go underground.

A week or so after the funeral my younger sister and I both had the same experience. It was a physical sensation of lightening, as if someone had just removed a very heavy backback from our shoulders. It was not just a mental uplift; we were both still very sad, and actually perplexed by the physical sensation. It was very distinct, and strong. I can only describe it thus: it felt as if I had been literally carrying something on my shoulders, and someone had lifted it off of me. Not that I had set it down, but that the weight had been lifted off me. I had a constant feeling of that sudden lightening for about two weeks. My sister, the same.

I also quit having migraines for three months. My doctors thought that it was the reduction in stress that allowed me to stop having migraines, but I didn't think so. (For one thing, I still had all my worries about my in-laws, and while I no longer had power-of-attorney duties, I now had executor duties for the estate.) I felt that my body chemistry had been altered by grief. I felt that my body was so physically preoccupied with the sensations of grief and loss, that it had no resources, so to speak, to devote to experiencing migraines. In this way, it was similar to the period just after I had my stroke, when I was almost completely blind. I had no migraines then, either. They did not come back until my sight recovered to the point where the place in my visual field where auras formed was functioning again. After my mother's death, my migraines did not come back until I was no longer completely blinded by grief to the world around me.

Time heals all wounds, as they say, whether you want it to or not. Eventually grief lessens, the sharpness of pain dulls, the loved one recedes into memory, which is unreliable, and must be pieced together through written records and conversations with others. Sending the medical records to the shredder was sending a pile of recorded memory to oblivion. If memory is all that is left, how can we bear to part with even one tiny morsel, no matter how bitter its taste? And yet doctor's appointments and ER visits are memories perhaps not worth savoring. There are so many, they dull the taste of anything sweeter.

I gave my folders to the township for shredding. I let them go. Death is cold, the ground dark and silent, but I remember warm evenings at dinner with mom, in the summer at Apple Annie's in Point Marion, the two of us talking, and her smile.

mom apple annies [640x480]

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Just Another Week in the Health Care Trenches

Some things I did this week:

1. Wrote a check for $5 for a copay; probably cost the doctor's practice more in time, paper & postage to send me the bill.

2. Wrote a check for $thousands to a nursing facility. Thought about how many people can't afford this care (including me when I am older).

3. Called about a bill  for ~$25 that showed Medicare billed, but "Secondary Insurance: None" to let them know Z-mom has secondary insurance and they should re-submit bill. Told to fill out back of bill with secondary insurance information and send it back. Tried not to think about cost of time to resolve this.

4. Called the pharmacy required by nursing facility to ask them if they had made progress in getting approval from Z-mom's insurance. Found out the person working this issue had left the company.

5. Filled in new person at pharmacy on backstory, got them working the problem.

6. Called Mr. Person at company that owned the mine my dad worked for, to talk about Z-mom's prescription coverage and ask about the pharmacy in #4. Granted a six-month "trial" exemption to use the pharmacy, but have to send written request.

8. Got approval to submit for reimbursement already paid bills for $hundreds of meds. Wondered what people do who can't pay out of pocket in advance. Or at all.

9. Sent email and wrote follow-up signed written request.

10. Tried not to think about six months from now.

Oh, United States of America! You do indeed have The Best Health Insurance in the World!

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All Good Things...Eldercare Version

You’ve been traveling on the Enterprise E(ldercare), when one day you burst into your therapist’s office confused, upset, wanting to know what’s going on, what the hell you are supposed to be doing, and why she was on the holodeck with Worf. You feel at a loss, half-recalled pieces of the past and visions of your future mixing with your present. In short, you have become unstuck in time.

You were perfectly fine with your role in Engineering; serving drinks in Ten Forward; trying to corral tweens Jean-Luc, Ro Laren, and Guinan; or just being a red shirt. But now the Enterprise E(ldercare) has been ordered to investigate an anomaly in the Nursing Home System of the Senior Living Zone. Off you go. And there it is, a large anomaly threatening to consume you, your ship, and your elder. You go in for a closer look and…

Suddenly, you are back in your youth. The anomaly is bigger, but you are stronger, more confident, maybe even a bit arrogant. You take the Enterprise D(evilmaycare) out against explicit orders to see what's going on. You drive it around late at night, with too many of your friends in it, hepped up on synthahol. You ignore the jeering fools on the sidelines as best you can. You set off for Far Point University with barely a "make it so". On the way you run right over the trappings of your childhood once carefully hoarded by your elder.

Wait! That was a dream! Wasn't it? But it felt real. Who was that callous ass who paid so little regard to the feelings and concerns of others? And why was that anomaly so damn big?

Whoa! You’ve been put out to pasture; your joints are creaky, your hair is white, and you've got early onset Irumodic Syndrome. But you remember, you remember, you remember...there was an...an anomaly...your family is visiting, you desperately need to communicate to them the importance of going back there, because you were just there, it is real, it is not a dream, it is happening now. And they speak soothingly, and promise to take you there, and...

No, you are back in the present! That's just a vision of the future, some projected bad acid trip. You do remember the past. If only people would listen to you when you tell them it's bigger in the past...

And you're back there, and you are taking Enterprise D(evilmaycare) further and further out ...

Into the future, where your kids and ex-wife remind you that you that Irumodic Syndrome is causing your brain to deteriorate, and this is all in your head.  But they promise to take you for a ride anyway, and that goddamn son of your is driving the Enterprise E(ldercare) and after a spin around the block he insists it’s time to go home and you say "no, no, we have to go to the Devron System!" and you become increasingly agitated and they say we were already there and we're on our way back and here's some haldol and wait those aren't your kids and those aren’t Starfleet uniforms and a voice whispers to you that the only way to understand the anomaly is with a letter-call-visit (LCV) beam...

You are talking to the staff of the nursing home where your elder is now staying. You suggest a more aggressive LCV beam to deal with the health care bureaucracy and to fight depression in your elder, making physical therapy more effective. Your family needs professional support in this, and some sort of data organizer. And you think...

That you should use a LCV beam all the way out here at Far Point University And Beyond. Yes! Make it so!

And waking from the haldol you insist you do remember the Devron System, you must go there, the LCV beam is absolutely critical, and they wheel you to the holodeck and set up the Wii bowling...

And now in the present you realize that the LCV beams from all three time periods are together creating the anomaly, which is indeed a temporal anomaly. But the LCV beams must not be disengaged, they must be made stronger in each time period. (Your therapist tells you to ignore that little voice which says you are going to be responsible for the destruction of humanity, that’s just internalized homophobia.)  Together the LCV beams create a static warpshell and blammo!

You find yourself in the present, wishing that when you’d gone to Far Point University And Beyond you could have somehow brought the Enterprise D(evilmaycare) back to the spacestation a bit more often. The little voice in the future, the one that whispered about the LCV beam, was also going to tell you how to arrange things so that people can do useful work and keep their elders close by, and not have to worry about their own elder care years, but it stopped short. All you can do is share your time-travel story, finally join the poker game – and keep that LCV beam going.

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A Week Went By And Now It's July...er...August

Ain't this boogie a mess!

It sure has been, for two months.  I had that triumphant return to the blog at the end of May - had finally broken that evil six month headache, was feeling great, life was good! About a week later things came crashing down around me.  I don't feel like I can go into a lot of details right now, but there was a death in my family, Z-mom went into the hospital right after the funeral, and a member of Mr. Z's family went into the hospital on the same day.  Mr. Z's family member is doing well now.  Z-mom has had a horrible medical odyssey, from hospital to a rehab place that, in my opinion, almost killed her through a combination of neglect, misunderstanding, and direct incompetence. Thus back to the hospital to be saved, then to a second rehab place where she did not thrive through a combination of grief and not liking the facility.  We finally moved her to a third facility where she is much happier, the quality of care is extremely high, and the results in just one week are amazing.  We are daring to be hopeful and happy now.

It was fortunate for me that I had just come off the week of hospitalization for migraine, and thus was as well positioned as I could hope to be to go through these last two months of intense emotional and physical stress.  So yay for that.  But the entire experience with Z-mom has only more strongly reinforced some things I already knew.

When an elderly person is in the hospital, you cannot just assume that they are being taken care of and all their needs are being met.  The nursing staff is often excellent and gives excellent care; they see more than the doctors and can tell you a lot about how your family member is doing - how they fared during the night, if there's been a change in some functioning.  But you still need to be there a lot to see what is going on - how well they are able to feed themselves, how well they are able to work with PT and what the key issues are, just in general what their mood is like, what needs they have that you could meet.  Most importantly, you need to be there early in the morning when the doctors are doing rounds, so you can speak with the doctor yourself, even if it is just for a few minutes.  This is when you can ask questions and get information about what therapies are being prescribed, or should be prescribed.  You can ask, why is my family member doing x or y, looking like this or that, acting this way?  If you aren't satisfied with the answer, push for more.  Ask them to slow down so you can write things down, and to explain words or concepts you don't understand.  If your loved one is about to be transferred to another facility, you will usually have some interaction with a social worker. They are good sources of information and are there to help you so don't feel bad about asking questions.

If your loved one is transferred to a rehab hospital, again you can't afford to take your eye off things.  You can't, of course, be there every minute they are doing therapy, nor should you, but you can sit in on some therapy sessions and interact with them and the therapist to aid in the therapy and learn what you might need to do with your loved one after the time at rehab is over.  You can get a sense of how your loved one is being treated.  After therapy is over you can see how gently (or not) staff help your loved one with activities of daily living, and how quick they are to respond to calls for assistance.  You may or may not be required to do laundry for your loved one, if the facility does not provide that service.  Sometimes this is better if you do it yourself, because things are less likely to get lost that way.  Your being there can help with your loved one's mood.  But most importantly, you can be there to monitor and catch errors or neglect.

In Z-mom's case, she had been progressing quite well and then suddenly started to decline, day by day.  No one could give me an explanation as to why.  They wrote it off to her grieving and being "too weak for the level of rehab here - she can't recover and keep up for the next day."  I would point out that she had been doing quite well and then started to decline and they would shrug their shoulders and go back to the grief excuse and say she wasn't trying.  But she was, she was trying as hard as she could.  In the end it turned out that she had a UTI and was severely dehydrated (which didn't happen overnight), to the point where she nearly died.  Neither rehab staff, nurses, nor the doctor monitoring her case noticed any of this.  I am not sure why.  And I wish I had pushed harder on all of them in the last week she was there.  A friend of ours who worked in hospice came to see mom and in fifteen minutes diagnosed what was wrong. She helped us get her moved back to the hospital, and saved her life.  Moral of the story:  pay attention, keep pushing, and call on every resource you know to help you figure out what is going on. Many people who are good at what they do are not so good at understanding how even slight imbalances can have tremendous effects on the elderly.  I did not know, but do now, that many times the only way that UTIs are diagnosed in the elderly is by display of confusion and a delirium-like state.

What this country's health care system needs (among a kazillion other things) is a good many more doctors and nurses trained in gerontology (especially to help with the death panels, amirite?).  I can't say all the things I've been watching and learning as I go along with Z-mom makes me feel good about my own approaching old age.  And don't even get me started on the insurance paperwork fallout from all of this.  I just wanna go hide.

But Z-mom, and Mr. Z, and me, and the rest of our families have made it through this far.  We are hoping for a less turbulent August and as things cool into fall, a chance to reflect, recover, and hold on dearly to those we love.

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Where's Zuska?

Perhaps my three remaining readers have been wondering just that.

(BTW, thanks Cara, for yelling at the spambots for me in my absence.  I cleared out a bunch of spam and then moved your comments since the spam was no longer there for you to be yelling at.  If you want me to put them back I will, just leave a comment here.)

The short sad story is that since the end of January, I've been beset with migraines on a daily basis.  I think I've had maybe a week's worth of days scattered here and there when I didn't have headache for at least some portion of the day.  Sometimes when Mr. Z asks me if my head is hurting I have to think about it for a minute because I can hardly remember what it feels like for it not to hurt.

Today I was good until about fifteen minutes ago, and now the headache is starting.  Yesterday I was sick all day and missed Easter with Mr. Z's parents.

Anyhoo, I tell you this not to garner murmurs of sympathy, but to let you know why this blog has been so silent.  I just have not had the energy or enough time without headache to put together a blog post (or even clear out spam).  Expect posting to be highly erratic, if at all, in the near future.

I am hopeful, though, that I may soon get the migraines under some control again.  This all started with a strained rotator cuff.  The docs figured the chronic migraines + poor posture + sleeping on left side added up to strain on the left rotator cuff.  I began physical therapy for it, and suddenly the migraines worsened despite a fresh botox treatment.  So then the docs figured that the work on the muscles, which was good for the rotator cuff, was affecting nerves in some feedback loop and causing migraines.  Get it?  Migraines lead to strained rotator cuff, and fixing strained rotator cuff leads to migraines!  Yippee!  Another factor was the absolutely bizarre winter we had, unnaturally warm and very changeable from day to day.  Rapid weather changes almost never play nice with the head.  It was all a big mess.  By now, though, I've mostly got the rotator cuff under control and am getting PT for the migraines - who knew there was such a thing?  But it does seem to be helping - sometimes a day and a half or even two days relief after a session.  And coming up soon, my next botox treatment.  Maybe by the beginning of May I'll be back to my old regular migraine schedule and can pick up blogging again!  Keep your fingers crossed!

Even though the  PT is working, and even though my insurance says I get to have 60 PT visits in a calendar year, it turns out that after you go 25 times they put you under "review".  This means they stop paying for your PT while they think about whether or not you really deserve to have health care.  One to three months later, when they finally decide whether or not you are worthy, the decision comes forth: either they pay for the PT you've been getting, or you are stuck with the bill.  Of course, you can wait three months for them to decide, but if you can go three months without PT, did you really need it in the first place?  This is known as "having generous PT coverage" in your health insurance and one should be grateful for it.  Pray to be fixed by visit 60, and not to have anything else go wrong the rest of the year. Also pray that the insurance gods consider your rotator cuff and migraine issues separate enough that they will allow PT for the migraine even if the rotator cuff seems to be mostly (though not completely) cleared up. While you are doing all this, brace yourself for the next round of begging said insurance company to cover your botox treatments, because Treatment No. 4 of the alloted four treatments is this month, and you have to convince them again that nothing else works and you really do need botox and you weren't magically cured in the past year.  Good luck!  And try not to be terrified when you see an ad from your insurance provider promising to help companies "manage" the "5% of your employees responsible for 20% of your healthcare costs".

Well, thanks for listening to the whining.  I hope to see you back here soon, with more cheerful sorts of rants and commentary.

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Still Here...Sort Of.

Rumors of this blog's demise have been greatly exaggerated.

I made what I thought was an April Fool's joke funee, and found out some of my readers took it seriously, which wouldn't have been so bad, except I promptly entered one of those phases where blogging became next to impossible, so it really did look like I'd packed up and gone away.  That'll learn me, as my dad used to say, not to joke about serious stuff like blog network hopping.

Anyway, I am still, in theory, blogging at Scientopia.  It's just been the usual life madness.  A picture being worth a thousand words, here's what I've been doing lately.

This morning, the phone rang a little after 9 a.m.  It was the person from my neurologist's office who they've hired to work full time on dealing with insurance companies solely on the issue of getting approval for botox treatment for migraine.  She was calling to tell me that she has left numerous messages for my insurance company's rep and has not gotten a reply, and now it's my turn to try and roust them.  The insurance company has denied my request for coverage, claiming there is insufficient evidence to show that I've failed three alternative treatment options.  The neurologist's office says they've sent them the information.  The insurance company rep says they would be happy to talk with the doctor's office, and the doctor's office rep says they would be happy to talk with the insurance company.  This game has been going on since I got the rejection letter sent out on April 16.  I have until June 16 to get my appeal completed.  I am not optimistic.  I feel like I am swimming in molasses.  I will never reach the shore, and will drown in this sticky morass of everyone saying they are happy to help me if only the other person would do x, and the other person saying they have done x, and would be happy to help me but the other person needs to do y, which is what the first person said they can't do until the second person does x, which their office shows no record of it ever having been done, but if I could call them and ask them to fax x over, and the second person says we faxed mini-x and it's their own fault if it isn't sufficient because they wouldn't let us send more than mini-x and the first person says the second person should know that we need x and the second person says I can't get the first person on the phone and the first person says just ask the second person to call us and...and my head hurts.  It hurts a lot.

Five minutes after I got off the phone with the neurologist's office, my phone rang again.  It was someone from the endocrinologist's office.  They filed a claim with my insurance company for my visit a month ago.  The insurance company has refused to pay until they receive an explanation of benefits form from my Medicare insurance.  I don't have Medicare insurance.  The kind woman on the phone tells me "they are doing this to a lot of people.  You'll have to call and tell them you don't have Medicare, and ask them if they can reprocess the claim or if we have to refile, and then call me back and let me know."

I haven't even had a cup of coffee yet, and I have at least three health insurance phone calls to make.  Plus a form I need to fill out for my in-laws.  Plus the usual paperwork for Z-mom.  I look at the cat curled up on the bed and want to crawl back under the covers and sleep till noon.

A few weeks ago I called the toll-free number Mr. Z's company provides for its employees, for a health advocate service.  The person I first spoke to was very enthusiastic and sure they could sort out the mess and help me get coverage for my botox treatments.  She then transferred me to a nurse who listened for a few minutes and then told me that I should not be calling the health advocates, I needed to file an appeal on my own, and ask my doctor to write a letter for me, and if my appeal failed, then I should come back to the health advocates and maybe they could help me then.  A week later the nice person I first spoke with followed up by email to ask why I had not filled out the paperwork she sent me and I told her about my conversation with the nurse.  Oh no, she said, we can surely help you out!  Who am I supposed to believe, the phone screener, or the nurse who essentially told me to get lost?  What does this health advocate service actually do?

What good does it do for my neurologist to employ someone full time to work with the insurance companies on trying to get approval for botox coverage, if that person doesn't even know anything about the patients on whose behalf she is working?  When I first talked to this person, she didn't know that I'd had a migrainous stroke, and she seemed unaware that my previous insurance company had paid for my botox treatments.  When I tried to explain what I did to get approval from my previous insurance company and offered to help in any way with putting together my file for this insurance company, she was uninterested.  I feel like, I am just a patient, what could I possibly know.

What good does it do for the FDA to approve botox treatment for chronic migraine, if all the insurance companies then just drag their feet and stonewall as much as they possibly can to prevent anyone from actually getting coverage?  It's not like they didn't know this was coming.  I'm sure they all knew well before the FDA decision that it was likely to be approved, and the approval was issued in October last year.  And as of the first of this year, the insurance companies were all still claiming that they hadn't figured out how they were going to cover botox, what kind of coverage they were going to offer.  Seriously?  That's how you run your business?  You wait till the last minute and make it up on the fly?  Pardon me if I don't believe that.  That $1200 I had to pay out of pocket in February is a crime.

And I just can't afford it anymore.  So until the paperwork nightmare gets sorted out, no botox for me.  I just have to deal with the increasing pain and fatigue.  And I just have to hope that I can manage to get it sorted out by June 16.

Or maybe my non-existent Medicare will pay for it.

I guess I'd better stop ranting and get going on those phone calls.  The best health insurance in the WORLD! doesn't work itself out on its own.

17 responses so far

The Panhandlers We Like

A few weeks ago Mr. Z and I spent a pleasant afternoon and evening listening to a half-dozen regional bands perform.  A silent auction was set up inside the concert venue, and raffle tickets were available for purchase. The bands donated their time and talent for this benefit concert, and all proceeds went to help pay the medical bills of a young woman with cancer.

And the other day, a friend’s Facebook post lead me to this article about a husband and wife both diagnosed with advanced cancer. They have a small child, and their friends are trying to raise money for their treatment and other expenses. At the link, you can see a beautiful photo of them with their kid, watch their wedding video, and find the blog that tells you more about them and how to make a donation.

I’m guessing benefit concerts and blogs advertised in articles in the NY Daily News get you more cash than a big plastic jug or a car wash.  So good for these folks.

But then I wondered:  What is it that makes these medical bill fundraisers any different from panhandlers on the street?

Everyone will tell you don't give money to the panhandlers - give to homeless shelters, or work to change the system, or to build affordable housing so people won't be homeless. Giving to individual homeless people just perpetuates the system, and they'll probably just buy booze and cigs anyway. So why should we give to individuals who need money for medical expenses? Isn't that just perpetuating the system of craptastic health care we have now? Shouldn't we work to change things and make health care affordable for everyone? Won't those sick people just use that money to buy substandard care that isn't really going to help them much anyway?

What’s the difference between panhandling for food and shelter, and panhandling for medical care?  Why do we have more sympathy for medical panhandlers?  Why do they seem more worthy to us, even admirable in their struggle?  Why do we blame the one, but not the other, for their plight?

Let's take a look at who's homeless.  Continue Reading »

14 responses so far

The Question of Who "Chooses" To Participate In Clinical Trials

Is the current economy making more people want to participate in human research studies, asks Isis?

In this new study here at MRU, we began advertising online last Wednesday. By Friday, my study coordinator had received 300 responses...I can't help but wonder if the current poor economy is driving more people to consider human research.

Probably - I wouldn't be at all surprised. It seems possible to me, though, that is just an exacerbation of the situation that obtained previously - which is that poorer people have always been attracted to participation in clinical research trials either as a means of making money, or as a means of obtaining at least some sort of health care, even though clinical studies are most definitely not about providing health care to the participants. That may be the other motivator for Isis's applicants. Many people don't really understand that clinical trials are not really places to receive health care.
When I worked in the pharmaceutical industry, a few of my coworkers seemed to have fuzzy ethics around this point, too. At least one of my coworkers was explicit in his belief that it was an ancillary "benefit" for clinical trial participants to obtain the attentions of medical professionals during a clinical trial. He insisted on referring to participants as "patients" rather than "subjects" (which I think is the preferred and correct term).
If you are wealthy, or even reasonable well-off, you have access to the best already-tested and approved health care and treatments on offer. Or you can figure out how to work the system and get yourself into Phase III clinical trials if your medical situation is such that there are no good tested options available out there. What you most likely aren't doing is saying to yourself, "Hey! I could make fifty bucks if I sign up for this Phase I clinical trial, AND I'll be helping out science, AND maybe I'll finally get my blood pressure checked by a real doctor, too!"
I appreciate Dr. Isis's sense of unease over the recent recruitment phenomenon. But I think it is just foregrounding an issue that has been there all along.
Thought experiment: Sometimes I have imagined a society where everyone is eligible for, and required to, participate in clinical research, akin to jury duty, or maybe like military service in Israel. Only when you were called up, you'd be assigned to a research study that was a good "match" - if you are healthy, you go into a Phase I or II; if you have a medical problem, you go into some relevant Phase III. Spread the risks and responsibilities out across the society regardless of social glass, gender, race. Of course its unworkable, but what would be the pros and cons of such a system? What things would need to change radically to make it work? Would drug development research need to move largely out of the hands of private industry or could it stay pretty much as it is?
Note I am not advocating for such a system, just floating it as a thought experiment to examine how we do things now and how we might do them differently. I have participated in clinical trials - as a student, just to get the money; as a researcher, with the goal of bringing a new therapy for a disease to market; and as a patient, in the hopes of helping doctors come to a better understanding of my particular illness. I've helped someone else gain entry to a clinical research study because no other available therapies were helping this person and we hoped the study therapy (it was open label) would work (it did provide partial relief that has persisted over time). So I've seen them from a variety of perspectives. The best-planned study in the world can be left with misleading results if participants are overly motivated by money, or by the hope of obtaining medical treatment for illness.

12 responses so far

Health Care Signs of the Times (Or, Get Your Big Plastic Jug NOW!)

Oct 15 2009 Published by under The Best Health Insurance In the WORLD!!!!

In August I did some writing about health insurance, and in particular about the Pittsburgh shooting victim whose friends and family held a car wash to help raise funds to pay for her medical expenses. Change.org picked up on that post, and Robin Stelly commented on the Change.org post as follows:

Every person at birth should be issued a big plastic jug. When people become ill, they should tape their most endearing photos and a brief description of their illnesses to their plastic jugs. Then all they have to do is display the official containers at a local pizza shop - or something similar - and problem solved. More seriously ill people can apply to receive more big plastic jugs. I'm pretty sure that Sen. Coburn (R-OK) is planning to introduce this plan in response to "Obamacare" when the Senate returns from the district work period. I for one look forward to codifying our status as a nation of desperate beggers.

That comment really stuck with me. I'm sure we've all seen these types of containers at one place or another, and tossed some money into them here and there. After reading Robin's comment, I thought maybe I'd start photographing them whenever I run across them. Of course I'd need to have my camera with me - though now that I have a new iPhone (purchased as an MMD - Mom Management Device), it's much easier.
So herewith, my first offering of Big Plastic Jug Photos. If you are so inclined, take a photo of one in your neighborhood, and send it to me by email. Be sure to include a bit of info - general geographic location, what type of establishment it was found in.
My first field sighting was in my hometown, at the post office community bulletin board:
bobtown po crop edit.jpg
The next one came on another trip home. Just off the Bedford exit of the Pennsylvania turnpike is a combination gas station/conveniencestore/MdDonald's. It was on the counter of the MdDonald's that I found this big plastic jar.
rest stop photo edit.jpg
The last one in the current batch of offerings was found in a small convenience store about halfway between my hometown and Point Marion, PA, that used to be known as the "9 to 9 store" because of its hours. I did not capture (entirely) in this photo the picture of the sweet little toddler with her lacy suncap and strawberry pink dress because I didn't have the heart to plaster her photo all over my blog. Nor did I have the heart to ask the person behind the counter exactly why we were being asked to purchase ribbons on poor Callie's behalf. I guessed cancer, or some similar devastating childhood misfortune, along with the usual story of parents working at low-wage jobs that did not provide insurance.
9 2 9 store photo edit.jpg
So there you have it. My first installment. I plan to keep taking pictures if I can, and I encourage you to as well. Even better, contact your senator and/or congressperson, and ask him or her if they think this is how those struggling on the margins of our society ought to be expected to get by when medical disaster strikes. Do we really want to be a Blanche DuBois nation, depending upon the kindness of strangers to pick up the tab for society's least fortunate?
I guess we do. The Big Plastic Jugs don't lie.

25 responses so far

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