At least once a year at this time, I try to blog about prematurity in some way. Last year, I wrote about legislation that I found important. The year before, I wrote specifically about the March of Dimes and WalkAmerica. I've also written about the importance of folic acid, possible causes of SIDs and a variety of other issues that touch, in some way, upon prematurity and/or infants.
Caring for three preemies on a daily basis has given me more than enough incentive to take up the prematurity cause. As important as religious tolerance work is to me, prematurity is probably a lot more personal because I've been through it. It's impossible to sit in a NICU with a little hand clutched around your finger and not feel the devastation and outright terror that is the NICU environment. It's a very scary place, even for those that are simply passing through. When it's your tiny family member lying in an incubator with machines breathing for him or her, feeding him or her, and keeping him or her warm enough to survive, it's an entirely different ballgame.
So, having rambled long enough... I'll get to the point.
Several weeks ago, my husband and I went to see the new X-Files movie at one of the local theaters. Before the movie started, one of the ushers came in and stood in front of the screen. Everyone quieted down to let him speak.
He looked out at the crowded theater and told us that Rave Motion Pictures had teamed up with the Will Rogers Institute to help provide vital medical equipment (particularly of the ventilator variety) to hospitals and that he hoped we would all consider making a donation to help further that cause. In addition to taking donations, they were auctioning off movie posters and he hoped we would consider checking it out.
He then thanked us for choosing Rave and wished us a happy movie going experience. Everyone clapped for him and he exited the room. Without any prompting, my husband leaned over and told me that he'd look up the Will Rogers Institute website as soon as we got home. I nodded and settled back into my seat to watch movie goers exit the theater in near droves.
I couldn't help but smile to see so many people getting up and filing out to make those donations. It did my heart good, particularly just having had our newest preemie sprung from the NICU, to know that people still make those donations. Most know that the costs of medical equipment are insane, but they don't really understand exactly how insane it really is.
We tend not to think of the financial ramifications of prematurity, but believe me, once all is said and done, you can't help but tally those costs and gape in stupefied amazement. After Alo's first several days in NICU, he was transferred to the Children's Hospital for surgery to close his back. The hospital he was at simply was not prepared for a surgery of that scope. About 2 weeks after he was transferred, we got the bill from that first hospital. Not including the costs of med flighting my sister and her care for the 12 hours before she had him or the 2 days afterwards, that bill was nearly 100,000 dollars.
We never saw the bill for the 3 months he spent at ACH in NICU, but I can only imagine how incredibly expensive that stay and every subsequent stay was. Let's just say that it gives a whole new meaning to million dollar baby. Now that he's home, we have a pretty good idea of what the costs of his care run each month, particularly since we're responsible for some of those costs. In addition to his nursing care and his medications, he has medical equipment all over the place. Two ventilators (one for home use and one that goes with us), his feeding pump, the IPV machine, the Pulse Oximeter, the two suction machines, a 100 pound tank of oxygen and the various supplies that keep him and those machines running aren't by any means cheap.
The reality is that no one is prepared for the costs of a preemie, particularly when that preemie, like Alo, requires continuous care for years at a time. Before he was ever admitted to ACH, the hospital filed disability claims on him so that Medicaid would help cover the costs of his care. They knew then what we didn't... it's just not possible for most families to cover those costs, regardless of what type of job they have or how much they make. We've since done the math and his major equipment alone costs nearly as much each year as those first few days in the NICU did.
Which leads me to the actual point of this post. We aren't by any means well off, but neither do we really like the thought of taxpayers paying for all of Alo's care when my husband and I are willing to help my sister to the extent that we are able. We've considered, as a family, simply saving up and buying Alo's ventilators and thus, saving insurance a bundle each year, but insurance says no.
Instead, they require that the equipment be rented each month so that the company of origin is responsible for maintenance costs of that equipment. Ordinarily, I would say that makes sense, but here, it really doesn't.
Insurance is charged about 3,500 a month for the two ventilators alone. In the course of a year, that's 42,000 dollars. According to an outdated 1990 report by Frost & Sullivan, Inc buying a portable ventilator costs about 8,000. I couldn't find anything more current than that to link here, but having talked to the equipment company that supplies Alo's ventilators, they spend about 10,000 when buying a portable ventilator.
It doesn't make much sense that Medicaid is willing to spend 42,000 a year renting equipment that they then return once the patient no longer needs it, but is adamantly opposed to allowing one to buy the equipment and then simply helping cover the costs of maintenance of that equipment when, in reality, the company that does provide maintenance offsets those costs by charging more for renting the equipment.
I'm just guessing here, but I would think that even after including the cost of yearly maintenance to the buying bill, it's going to cost only about half of what renting costs each year. So, it doesn't really make any sense at all to me that one can't simply buy the equipment and have insurance help pay maintenance and thus, save taxpayers money. It's just senseless.
A premature infant is expensive enough to hospitals, taxpayers and families without these backwards rules that serve only to make it even more so.
So... having been through all of this recently, my annual preemie awareness post this year is, as you can see, something a little different. This year, it's both about the costs of caring for a preemie and how desperately insurance reform is needed. Instead of encouraging you to support the March of Dimes, the Will Rogers Institute, or legislation aimed at screening infants for preventable illness... I'm going to encourage you to consider insurance reform not with a universal healthcare vs. private pay mentality but on another financial scope and discuss those reforms.
We need to look at the costs as they are and figure out new ways of doing things so those costs can be reduced without having an impact on quality of care. Buying equipment instead of renting, requiring that employers cover prenatal and preconception care, and establishing new rules for what is covered and what is not can go a long way in reducing the economic impact not only of prematurity, but of healthcare costs as a whole and I can't, for the life of me, figure out why that conversation only gets brief mentions.
The reality is that, quite outside of the universal healthcare debate, you do pay and in ways that are quite unnecessary. Whether it be through providing that insurance, simply covering the costs of their own healthcare when healthcare prices skyrocket because others are unable to pay their bills or rising insurance costs, you feel it. We've had the universal healthcare discussion often, but no one really talks about insurance reform outside that particular scope. And that discussion is desperately needed.
We're able to save infants at earlier gestational ages than ever before and the number of premature births is rising. Those factors alone have caused issues in the medical field and we're so caught up in who should pay for medical expenses that we tend to lose sight of the reality that one way or another, we all pay. In 2005, at least 26.2 billion dollars of healthcare costs were attributed to those of premature birth and whether you realize it or not... you felt it.
So... why aren't we discussing it?
This is why the system just needs to be completely overhauled. I don't particularly care how it's done, but in addition to all this, we need to focus more on primary care and prevention, rather than treatment. Why should, say, a surgeon that makes a living by making people prettier get paid 3, 4, even 5 times as much as someone who cares for the basic health of everyone who comes into his or her office? Why should insurance companies ENCOURAGE the use of more expensive procedures, when the cheaper one works just as fine? That's not even considering the fact that the FDA hasn't approved Cervarix for the HPV vaccine, but has approved Gardasil, when the EU thinks Cervarix is perfectly fine (and let's not forget that the EU also outlaws many of the things the FDA allows) and is cheaper? Gardasil has a monopoly here in the US, because the FDA won't approve Cevarix.
I need to write a blog about some insurance company ideas...
~C
Check out the latest entry in the Between The Lines column!
Want the highest rated list to change? RATE those blogs, then!
I couldn't have said it better, but I completely agree. I've had to listen to my aunt and my step mom complain numerous times about the setup in the health care system. Neither one of them are advocates of holistic healing, but they do support prevention versus treatment.
I was also confused as to why the insurance company doesn't try to be more cost effective. Thank you for stating that one too. If anyone has an answer, I'd love to hear it.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
You can't ignore me, for I'll not lie down quietly.
http://insanitek.net
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
I don't particularly care how it's done, but in addition to all this, we need to focus more on primary care and prevention, rather than treatment.
A-freaking-men. It makes no sense to me that insurance companies are willing to pay for a surgery once a problem has reached critical level, but are opposed to covering medication and other preventative costs. What I really can't figure out is the reasoning behind those decisions. Why exactly was this ever a good idea and why is it still in practice when it's quite obvious that, in most cases, prevention costs significantly less than does treatment after the fact?
Prenatal care costs an average of 1,862 dollars and a normal birth about 7,000. Khourt's bill from her hospitalization prior to and after the birth of Aybra was about 6 times higher and that's not even including the NICU stay. While she had excellent prenatal care, the costs are about the same, if not a little higher, for those who don't have that care and have a preemie in that same gestational range. There are so many issues that adequate prenatal care can eliminate and thus reduce the chances of one giving birth prematurely, but even where prenatal care is concerned, insurance companies and policies don't follow any logical patterns of thought.
And I just can't figure out what made these senseless policies such good ideas to insurance companies in the first place.
I'm waiting eagerly to read your blog :)
-----
Like writing? So do we!
~Fallon~
"If I fall asleep with a pen in my hand, don't remove it - I might be writing in my dreams."- Pace
-----
I need to write a blog about some insurance company ideas...
Not if I write it first!! :-P
Just kidding. I, too, look forward to reading this blog. :-)
"What a crazy random happenstance!"
Dr. Horrible's Sing-Along Blog
Read my Blog!
Your blog wouldn't be like mine anyway. I have exact values and information, thanks to a conference with my boss I got to sit in on yesterday.
~C
Check out the latest entry in the Between The Lines column!
Want the highest rated list to change? RATE those blogs, then!
If my husband and i had not had tricare, it would have cost us 10,000.00 a day just for one of the the pieces of equitment our daughter was on, and she was int the NICU from march 2 to april 16th. Think of that. Not to many people seem to care about prematurity untill it happens to them. I am going to look up the will rogers website and see if i can work with them at our movie theatres, that is awesome what he did.
Check Out MY NEW and UPDATED Online Portfolio!!!!!
myspace.com/osnaphotography
~I want to know God's thoughts, the rest is just details.-Albert Einstein~
...because (can you guess?) yes, I was a preemie. I was a little over four pounds at birth, which may not seem all that bad today, but more than forty years ago I wasn't given a very good change at survival. I was fortunate, however, and one of our local hospitals was participating in NICU research, and I got to be the first lucky baby to try out the new incubator they were working on.
Just a random fact about me.
TTFN,
Blackout
-------------------------
Yes, I've changed my username from "percivale" to "Blackout." Go here if you want to know why.
:) I always love hearing from those who were former preemies. It does the body (or heart more like) good. Sounds like the new incubator they were working on worked, at least with you!
-----
Like writing? So do we!
~Fallon~
"If I fall asleep with a pen in my hand, don't remove it - I might be writing in my dreams."- Pace
-----
I just have to say, your post makes a lot of sense. There is a lot that no one is talking about, though so many complain about it. It doesn't make sense to rent when you can buy, though it costs an arm or so, rather than rent which would, quite frankly, require perhaps your entire torso. If there are any other points where one can donate, I would happily help.
I am who I am and who I am is someone unique.
Twice a year at Famous Footwear (where I work--- yes, the mystery is revealed!), we participate in the March of Dimes. Once in April, once in November, which is Prematurity Awareness Month.
I'll be the first to admit I had no idea what MOD or WalkAmerica was until we started doing it at work-- but after reading the announcements we make over the intercoms, after seeing the preemie diapers and little bodies, and after reading how a little donation can help, I can't help but go above and beyond in involvement.
I wish more people could know your story and the information you give so that they wouldn't be so quick to say "no" when we ask if they want to donate their measly change to premature babies.
----
Procrastination isn't the problem, it's the solution. So procrastinate now, don't put it off. [Ellen Degeneres]
I think a lot of women go into premature labour due to the demands of society. They generally do not have much support from their employers to take off if they need to. Also, many doctors are prescribing medications to "stop" preterm labour which are not even FDA approved for that purpose. Doctors need to accept the fact there is not a quick fix and put more women on bed rest. Also, society needs to be more supportive of pregnant women.
I was in preterm labour and I had to change OBGYNs because the prescription they put me on was Terbutaline which is approved for the treatment of asthma. All it did was cause my contractions to become closer together and my cervix to efface and dialate even more. In addition to that, my heart rate would jump up to 180-210 beats per minute while standing. The doctor did not prescribe anything to increase the rate in which my sons lungs developed and I was only 25 weeks pregnant. Also, no one at my work helped me and my ex made fun of me because he thought it was funny that I was 1.5" dialated at 25 weeks.
That is what is wrong with society. So, these children are born with permanent birth defects because the job market will not allow pregnant women to take off the time they need to. Also, doctors just keep prescribing the incorrect medications when they should be putting these women on bedrest. Bedrest is the only way to slow contractions. Asthma medicine does absolutely nothing.
Fallon, feel free to correct me on this, because you know about it far better than I do....
But I'm pretty sure there's nothing they can prescribe to increase the rate at which the baby grows. The only thing that would have helped your son's lungs develop would be more time in the womb for them to develop....
~C
Check out the latest entry in the Between The Lines column!
Want the highest rated list to change? RATE those blogs, then!
They can give a round of steroids but that doesn't make the lungs or baby grow... it simply helps prevent chronic lung disease which is one of the biggest risks for preemies.
They did it will all three of the kiddos, but weren't able to hold labor off long enough with Alo for it to be effective.. which is his problem now. His prematurity, coupled with the damage that the oscillator that kept him alive caused, did a number on his lungs. He actually still gets an inhalant steroid every 12 hours on top of the IPV treatments every 6 to help treat it.
They also give a pulmonary surfactant which again, doesn't make them grow but can be helpful, particularly for respiratory distress syndrome. The lungs of preemies are still immature and the surfactant helps the lungs expand so they can transition from womb to breathing room air. Those born extremely early still tend to need the ventilator, but when surfactant is used, they tend to need it for a shorter period of time.
Both can make a big difference, but no... neither makes the lungs grow.
-----
Slán agus beannacht leat,
~Fallon~
O, happy the soul that saw its own faults -Rumi
People of the world don't look at themselves, and so they blame one another -Rumi
-----
First, your ex sounds like an absolute ass and I'm assuming that's one of the reasons he is an ex. I think most people simply don't know enough about the dangers of preterm birth to think that one requires help. That's something I've noticed here as well. You mention preterm birth and everyone is like "oh, that sucks" but never really seems to know what that means or what it can entail. Even those who have had children can't quite imagine the reality of having a child born months before he or she was supposed to be. That's one of the reasons I talk so much about our experiences and the importance of getting involved. Education is an incredibly powerful tool.
I would point out that it's actually not certain that bedrest does help stop preterm labor either. Most research that has been done into whether bedrest effectively reduces the risk of preterm birth says that there's absolutely no evidence to suggest it does. I've heard of several doctors who've told patients that they simply prescribe it because while it might not help, it doesn't hurt either. Reducing stress is certainly not a bad thing, but we don't really know that it's a successful intervention either so it's not quite accurate when you say it's the only effective preventative. So far as research goes, it's not a preventative at all.
As for medications used to slow down contractions, one tocolytic medication has been approved by the FDA in the past for the purpose of slowing labor . Terbutaline has never been approved for that purpose, but many opt to use it because it's so similar to ritodrine, which was the medication previously approved for that purpose. Tocolytic medications are thought to cause a relaxation of muscles, causing contractions to slow or stop temporarily.
Magnesium sulfate is another that is used for that same purpose. It's also sometimes used in women with dysmenorrhea because it can reduce the severity of cramping (which are uterine contractions). All of the tocyltic medications that are used can cause complications and there is no evidence that any of them effectively stop labor. But, when you're 26 weeks pregnant and in labor, holding off labor long enough to get a dose of steroids in and working almost seems worth the risks that using the medication temporarily can bring on. Either way, the medications aren't meant to stop labor and are only a temporary measure.
They used magnesium sulfate with sis each time she went into preterm labor. She did well with it the first two times, but with Aybra, she had complications. Come the Sunday after her water broke (it broke on Thursday), she was so ill they had to stop the medication. Her respiration rate and BP were both too low and her heart rate too high. She couldn't even move that day she was so sick.
Cervical Cerclage is actually considered the most effective of methods in preventing preterm birth. But even then, that's generally only true for women with incompetent cervix. There's not much to suggest that its as successful for preterm birth associated with other issues (or no known causes) and the risk of infection becomes greater with a cerclage.
The reality is, there is no one tried and true method for stopping preterm birth. It's a cross you fingers and hope sort of situation. Intervention may work, it may not. Something they tried with sis worked for Kaia and Aybra, nothing at all worked with Alo. Which is why research and advances are so vital. We can save them at 25 weeks, but it's a lot less strain on the child to sit in the womb until at least 37 weeks than it is to sit in a incubator at 25.
I'd also point out that premature birth and birth defects are totally different things. Structural, neural tube and metabolic defects (such as spina bifida) are caused by missing or incorrectly formed body parts or enzymes. Congenital infections are typically caused by an infection such as rubella. And then there are those that come from alcohol abuse, Rh disease, chromosomal abnormalities and other genetic issues, etc. Birth defects may lead to premature birth, but premature birth tends not to lead to birth defects as most defects arise in the first three months of pregnancy... in some cases far before the woman even knows she's pregnant.
Alo has Arnold Chiari Malformation Type II which is a malformation of the brain (part of the cerebellum protrudes into the spinal canal) and spina bifida myelomeningocele. They also think he has a genetic defect, but they don't still don't know what that may be or if they ever will know. (His geneticist pretty much tells us to keep our fingers cross that genetic testing eventually advances far enough where they can put a name to it.) In each case, the defect was formed long before sis ever went into preterm labor.
At any rate, I could go on, but I think this is too long already.
-----
Slán agus beannacht leat,
~Fallon~
O, happy the soul that saw its own faults -Rumi
People of the world don't look at themselves, and so they blame one another -Rumi
-----