Thursday, September 4, 2008

The Cost of Ongoing Medical Care-Who Pays?

Recently I found a new blog and spent some time reading the back posts. When I came across this post, over at White Coat Rants I felt the need to comment. Specifically it was the following statement made by the blog author that caused me to pause...

"Hospitals seem more and more willing to sue for medical debts. Should hospitals be able to force people into bankruptcy for the medical services that they provide?

A hospital is a business. Without money, the business goes bankrupt.
If you walk into a lawyer’s office, many times you’ll need a retainer or the lawyer won’t take your case. If the retainer runs out and you don’t pay, then the lawyer stops providing services.
If you walk into a supermarket, fill up your basket, and leave without paying, you’ll be arrested for theft.
Stop paying the guy to cut your lawn and you’ll have to do it yourself.
Why do people expect that medical care should be free if they don’t have any money?"

After reading all of the comments, I left one of my own.

"The comments are great and allow everyone to look at the situation from many angles.

I have another one though..

What about the parents of a child born extremely premature? Not only will you have the hospital bill but you may also have on-going medical care for the rest of their lives? What if both parents can’t work because there is no one to take care of the special needs child? Can one person really work enough hours to cover all of the bills?

What if said bills are higher than they would be if they were billed from another department? For example… nursing care is billed at a lower rate in the ICU than it is in the NICU? Is that fair? Should one department be allowed to charge higher even though the same skilled staff is used? Should one department be able to charge higher rates so the revenue will cover less lucrative departments?

What is a person to do? Deny care to their child? Let their child suffer?

Choose not to resuscitate because the parents will not be able to afford the care?"

To which the blog author wrote:

"States have SCHIP programs to help pay for care of children with costly medical problems."
That's when it hit me. People actually believe that the above mentioned program is the answer. Please don't head over to White Coat Rants in anger. The blog author seems to honestly feel that the program is working and helping people.

I, on the other hand, know differently. The program varies by state so my experience may not be the same as others have had. But, that system is broken and does not help all who need it. And, this blog author is not alone in their thinking. I can't even begin to count how many times people have assumed that we had Medicaid because of Paige's ongoing care.

When Paige was diagnosed with Epilepsy (4 years old) we were shocked to find out that our health insurance (which we paid for ourselves at over $1,000 per month) had an annual cap of $500 for prescriptions. Between her new meds and the rescue meds we had to have on hand, we blew through our allotted $500 in under 2 months. I had heard of the Katie Beckett waiver so I did some digging. I called our Medicaid office (in our previous state-Illinois) and was told that Illinois did not participate in that program. We were told that there was a similar program but we didn't qualify because my husband made too much money. But, they refused to take into account the ongoing medical bills that we were paying out, or the fact that we were paying for our own health insurance, which left us without enough money to eat at times. (Many of you have already heard me talk about how we lived on Spaghettios during that time)

When I asked (begged actually) the woman to help us she told us to get a divorse and have hubby say that he lives out of our house. This way his salary would not hinder us from getting help. When I told her that I didn't consider that to be a viable option she told me that many people do it. Her second suggestion was to have hubby quit his job and work at Walmart so we would qualify.

Again, I realize that all states are different. But at that time (almost 6 years ago) the total household income dictated whether or not you could qualify for help.

Hubby ended up leaving his job and taking one with a company that offered health insurance. But, that only solved our perscription problem. We still had the cost of the copays for each doc. At the time she had 9 of them! Add that to the cost of our portion of the ongoing tests and we are right back where we started.

When we moved to our current state of residence, I tried to get help again. Same problem... hubby makes too much money and the state refuses to look at how much you are paying out in continuing care.

And now we live in one of those states that adds interest to outstanding medical bills and sues if you don't pay.

Do I feel that I am entitled to medical care for my child without having to pay for said services? Of course not! It's a horrible feeling to know that you can't afford your child's medical bills.

But, where is the solution?

Again, I want to stress that I don't feel that the blog author deserves all of us running over there and leaving comments that are not helpful.

I would love to hear from everyone here.

Are you happy with the help you receive from state programs? (I have heard that PA is a good state to live in)

Do you have any suggestions for programs that you were able to qualify for and have been helpful?

How do you pay for the ongoing medical bills??

How about your NICU bill? Did insurance cover it for you? (Ours did not cover any meds used off label, which left us with a $75,000 pharmacy bill)


Emily said...

I think this is a very important topic and one that is no doubt getting a lot of media attention right now with the upcoming presidential election. We had excellent health care coverage when my 2.5yr old 25wkr was born, except it had a lifetime cap of 1M. Never had I thought about the lifetime cap on insurance policies until our doctor informed me that we had reached our limit just 4mos into our NICU stay. Luckily due to birthweight she did have SSI medicaid until discharge but once discharged, she would lose it due to my husband's income and she didn't qualify for CHIP.

This put us in a big predicament because she was coming home on a ventilator, feeding pump, oxygen, and required 24/7 home nursing care. Needless to say there way no possible way for us to walk out the door of the NICU without having insurance. That left us with two options. Look into TX medicaid waiver program (Medically Dependent Children's Program which has an 8-10yr waiting list) or have my husband quit his job and get a new one with a new insurance policy.

I made so many calls to politicians and news media with no luck that I was investigating how much it would cost to pay out of pocket. We ended up finding someone who quietly told us of a backdoor where we could get into the waiver program immediately and skip the waiting list. For us this was an amazing blessing and allowed my little one to come home and be adequately cared for without us going bankrupt.

Since then my husband has gotten a different job since we needed her to have a private policy and not just rely on medicaid. I was quick to ask what the lifetime max was on the new policy (5M YEAH!).

I can totally understand and agree with the need for a solution to the health care situation. Middle class people are definitely the ones hurt most by the problem in my opinion. If you are lower class, you qualify for state funded programs. If you make a decent amount of money but aren't rich, you're cut out. It sucks! However I strongly disagree with the idea of universal health care being proposed. I feel like legislation requiring certain things be covered is a far better solution than allowing the government to take control of my health. Knowing how many tests my daughter has already had which would not have been covered under Canada's health care system is quite concerning. Mostly I just hope the issue is addressed adequately in the coming years.

RhondaLue said...

well, I hesitate to even get STARTED on this subject because it's affected my family greatly with a preemie that has had continual high medical/presription/treatment needs.

I agree with the first commenter that uiversal care is NOT the answer-it'd be a train wreck and my friends from Canada and England have told us of horrible waiting periods with serious painful conditions and it is just inhumane and I think less govt is better. Just my opinion but I don't think people should be denied care when they truly need it. Somehow, someway we should be able to come up with something better than what we've got.

Also, I agree that the middle-class is the group suffering the most. My NICU baby shared a room with several babies whose parents weren't even from the U.S. and their bills were excused, Totally and completely. My family, on the other hand, had no grocery $ one month and we called the hospital to please accept our payment 2 weeks late, it'd be paid in full but if we could wait the two weeks we could still eat and buy meds. they told me that If I didn't have my check to them on the duedate we'd be IMMEDIATELY sent to collections. If my credit went bad I wouldn't be able to take out the second mortgage on the house and I needed THAT to pay for my son's out of state hospital treatment. It's vicious and ugly all around.

I think aside from the life and death and chronic illness aspect it was the most stressful thing I've been through in my life. Trying to raise a family on what was a comfortable income B.P. (before preemie) was a daunting task once the bills started rolling in.

Also the 1 million dollar cap comes into the play real fast with a NICU baby. My husband has changed jobs 3 times since our preemie so luckily we've not been capped out.

It's just not right that in the midst of all our problems we have to worry about money too.

Sarah Blake said...

It's not any easier for many people on Medicaid. I am very afraid to get out of the state of Indiana. In most states, Medicaid is on an HMO-type plan, and people are limited to three to five prescriptions a month. (It's three in some states and five in others.) This would be an absolute disaster for me--I'm on 15 meds. I could get off one of my asthma meds and hope the remaining two do the trick. I could get off my eye meds and risk the resulting vision loss that comes from the resulting rise in intraocular pressure. Those would be the only tolerable solutions--and really they're not very tolerable. The answer is generally to put the person on "spend-down," which means the person pays for medications up to a certain amount. Well, in that case the person is not paying for a place to live, food, etc. The sad aspect of this is that it really can't always be argued based on just pulling the plug on preemies. I was a healthy preemie. My health decline began in my mid-20s.

This affects the entire population. I listened to an NPR documentary on it a few years ago. It featured a grandma in a wheelchair who took care of her four-year-old grandson. She was on six medications and lived in a state that only gave her five. She started to cry talking about what happens when she gets prescribed an antibiotic. She said, "Do I stop taking the pill the makes me breathe or the pill that keeps me dry? I have to breathe, but I don't want to be wet..."

So should we just kill off the old people because they're too costly? Sorry for the sarcasm. Sometimes when we have discussions about viability issues and ongoing cost of care, I wonder, what about the rest of the population who doesn't have a choice, who isn't faced with life and death but needs the care in order to live well enough to contribute to society's welfare in some way? A person like myself can't look for work without being well, can't finish the education that will result in work without being well. That grandma can't provide the child care that is helpful to that child's parents without being well. She's not employed, but she is certainly benefitting society by benefitting that family, not to mention whatever relationships she has in her community.

ThePreemie Experiment said...

I forgot to add, in my original post...

When Tyler was born (2 years ago) we were waiting to be discharged when the nurse came in to our room and told hubby that he had to go downstairs to set up a payment plan on the outstanding bill!

I sat in my room with Paige and Tyler waiting for hubby, who was stuck waiting in line. The nurse came in to check on me and I asked her if we could start the discharge paperwork. Nope. She had to have clearance from billing. I was less than pleased and she agreed with me. She hated the process too.

Then came another blow. The nurse came back in to check on me 30 minutes later and told me that she hoped hubby was not detained much longer because our time was almost up before they would start to charge us for another day!

Kristie McNealy said...

I left a comment over at the other blog. The biggest thing that burns me up right now, is that though that we shouldn't "take" healthcare resources we can't afford. Think about that, and then think about what happens to parents that refuse the standard of care for their child in a hospital setting. Ethics boards, legal battles, medical neglect charges, etc... Now, I'm not saying that anyone here would or should ever say "no, that's too expensive, just let my kid suffer, die, etc". But seriously, even if you wanted to say no, in most cases the system wouldn't let you.

some mommy type lady said...

my 28 week twins were born in Canada nearly 7 years ago. The first time I even thought about the expense of hospital care was when they were about to be flown home to a regional hospital from the provincial nicu. It was mentioned by a neo that was from the us that the twins care in the us would have been over 2 million. Once flown to teh regional hospital, the hospital decided that they didn't have adequate nursing staff that day, so we had to fly back to the childrens hospital again. We did have to pay for medivac flights and ambulance charges though. Once discharged we had to deal with horrendous waiting lists, minimal services for early intervention and therapies. To have testing services provided by pediatric specialists have to be emergencies, and otherwise are done by typical adult measures. Both children have had test results mismanaged for months before an it is recognized as an emergency and diagnosed at the childrens hospital ( 300 miles away). I really am fortunate that we didn't have to pay for the majority of the medical services my babies received, but the first few years at home with the children was filled with anxiety, worried about services unavailable to us with our system.

Anonymous said...

Helen Harrison asks:

Anone know what percentage of GNP/GDP (or however it's measured) is spent on health care in the US vs. Canada or the UK?

I'm not sure what it is, but I think the gap is huge with the US spending *much* more, and a large amount of the cost comes from insurance companies and other needless paper pushers.

On the other hand, whether it is preemie outcomes or longevity, the US has far worse outcomes than Canada or the UK.


Anonymous said...

Laura said

Our Katie was born 10 1/2 years ago. Due to her birthweight she got SS. My hubby went to the public aid department and they told him not to apply. We owned two cars (one small economy car and one 12 year old car). We made maybe $25,000/yr. They didn't tell him we COULD have gotten medicaid because of the SS. SS only paid $30/month while she was hospitalized. I was able to purchase some clothing for her.

Our insurance was billed just over a $1 million. They paid about $330,000. Hospital was out of network but they worked out an agreement. They didn't pay about $5000 in lab bills. Our hospital had a charity program and we applied. Their program is based on income and expenses. We were awarded a 90% reduction in bills. We sent the hospital's letter to all the providers with outstanding bills. They all accepted the letter. We ended up paying nothing towards those bills. The providers were very kind.

IL provides medicaid for almost all kids. Our kids now have commercial insurance and medicaid. In IL you can make over $70,000/year and still get medicaid. I actually pay more for medicaid than I do for commercial insurance. I would NOT want to have medicaid only. The combo of commercial insurance and medicaid is nice though.

Melissa in Vancouver BC said...

I want to provide another perspective on the Canadian system of national healthcare. My 27-weeker was born late last year and spent 10 weeks in the NICU. Since then, he's had a couple of doctor's visits and prescriptions for various ailments but hasn't been re-admitted to hospital (knock on wood). We've been lucky so far, but he's still very young and I know things may get tougher medically and developmentally: a 27-weeker is not usually fighting the same fight as a 25- or 24-weeker, but after what he went through in the NICU I just can't believe he'll be completely unscathed in the long term.

During my son's hospitalization, money was discussed a few times. We learned from the nurses what a day of NICU care on the ventilator cost, and we learned what some of the consumables used cost (for example, respiratory therapists would try very hard to prolong the effective life of a Canulaid because those little stickers were $10 a pop). We learned to not be wasteful of hospital resources and to be respectful of staff time - after all, it's our tax dollars paying for them.

But the care we received was excellent, and our joy when our baby was discharged wasn't sullied by financial concerns: there was no talk of payment plans or collections agencies, changing jobs or taking out a second mortgage. His frequent visits to his pediatrician, audiologist, early development program are also paid for through our taxes, with no need for me to pull out my chequebook or credit card at the practitioner's office.

Before you all jump on me about how your cousin/friend in Canada says the medical system is so horrible - I know experiences are different in different parts of the country, and it's far from perfect. Things are harder for those who live outside of metropolitan areas, and care is funded and implemented differently across provincial boundaries. And, yes, we do have long wait lists for some tests and procedures in many areas. And screwups happen, and it's not always fair - the system is not perfect.

But my middle class family's financial future is intact. In Canada, when we are hit with a medical emergency, we deal with the emergency itself without worrying about how we're going to pay for it. We do pay - our taxes are much higher than yours - but then when it hits the fan and we really need it, the system is there for us, regardless of class or credit rating.

There are many wonderful things about America, but for medical care I would definitely choose our universal health care over the system of HMOs and private insurance - warts and all.

That said, I only know what I'm familiar with. So I'm curious: for those of you who are opposed to universal health care despite having been through the financial crisis of prematurity, why is it that you prefer the private for-profit system you have in the US? I'm not intending to criticize; I'm interested in your perspective.

Anonymous said...

When my son was born, the hospital sent us to social security to apply for disability. Did anyone here qualify for that?

Not only do these programs not work--but there is also the stigma of being on assistance. Years ago my family was struggling financially and we were on Medicaid. You would be amazed at how difficult it was to find a doctor who would take medicaid. Not only that, but when we finally found one, his office treated us with a great amount of disrespect. We were talked down to, verbally abused, and we were never allowed to see the doctor himself unless it was a real emergency. All my children's routine visits were handled by a nurse practitioner who insisted on wearing ear plugs to keep my child's cries from damaging her hearing and sent us out of the room while administering shots so I would not interfere in the process. I felt as though I had no choice but to continue seeing this doctor because it was one of only a few offices in town that would take medicaid and I could not allow my child to go without routine medical care.

I also had a friend whose son was diabetic and she had MS. Chips did not work for her because she could not find a provider who would accept it and she had trouble keeping all the deadlines straight....

The system is broken. Sometimes you have no choice but to allow medical bills to go unpaid...

Anonymous said...

I have been lucky, which just goes to show how unfair the styem is--or how broken the system is, if you will. I should have the same obstacles as anyone else, but I have fewer.

I adopted Vic. He already had a Title XIX/Medicaid card. I made keeping the card a condition of adoption. That was/is not entirely fool-proof, and I knew it then as I know it now. Because Medicaid can morph into a different system at any time, with co-pays, exclusions, etc. In fact, we got a letter early this year, saying that there WOULD be some co-pays in the future.

SCHIP--the state Children's Health Insurance Policy, available in every state in one form or another:
Six months ago, SCHIP ran through its funding, and needed to be "renewed". If you remember, George Dub-ya at first refused the funding that was being asked for; and then compromised by renewing SCHIP for one year without any increases. SCHIP will again come up in a few months. If you care about making this a viable option, you should keep your ear to the ground, and get involved with the negotiations and write the politicos--or even just copy to them the letters from this blog. (Is that okay, Stacy?)

SCHIP COULD work for us, in my opinion. Any state or locality that says we do not qualify due to income should be harassed till the administrators of the plan are forced to look at both income guidelines AND scope of costs related to income.

The physicians who take on Medicaid patients are able to do so without going under themselves because they use their Medicaid/Medicare patients as tax write-offs. Any physician who refuses care should be asked about how and if s/he buys into this strategy. They all have "business offices" or insurance specialists. Ask to talk to these people, in order to understand how to play the game. And it IS a game . . .

. . . and it will continue to be a game until we get a fair plan. I think "universal healthcare" is the name of a fair plan, and universal healthcare can take any form we suggest. Heck, as far as I'm concerned, we can experiment till we find strategies that work.
MA has done some work on this. So has NY. So has CA. ME has come up short on its plan . . . but some parts of it are good, I think--I looked into ME's plan as it was being fashioned several years ago during my Master's program . . .

The infrastructure from Medicaid is there for each state. The infrastructure from SCHIP is there from every state--to be built upon, if we have the political will. However, I know many, many people (yes, medical people) who don't believe in universal healthcare. They believe that everyone should pay their own way, should be responsible enough to have and keep private insurance. They obviously haven't heard our stories.

Universal healthcare doesn't HAVE to be federally owned and operated. Each state or even each locality can come up with their own plan--as have ME, CA, MA. My state, WI, has Badger Care with coverage that extends Medicaid coverage.

A big problem is that private insurance is tied to employment, and it should not be. It should be portable (as in the forgotten part of HIPPA--one of the "P"s stands for portability), that is, you can take your insurance from job to job without interruption of services . . . That is how it is done in some of the Scandinavian countries.

Health insurance tied to employment is falling apart, with only 40% of all companies providing health insurance these days . . .

We are close upon an election, and we all should know which candidate and which party would put health care into the first 90 days of its administration--since that is an indication of how important the issue is to the candidate. In addition the Kaiser Foundation web site has a comparison chart of each candidates postion on health insurance. You can--and must!--look at this for yourself.
Here is the link. (You will note that only one of the candidates wants all children to have health insurance and wants the expansion of SCHIP):

Chris and Vic

OHHS Class of 1980 said...

But, HIPAA doesn't apply to fee for service Medicaid. So, it's not truely portable. When I got a job, for a while, that had health insurance, Medicaid dropped the kids. We had fee for service (or straight) Medicaid. I couldn't enroll the kids in my employer's plan because it wasn't open enrollment time. I couldn't get special enrollment because we didn't qualify under HIPAA due to the "straight" Medicaid.

Thankfully, we were only without insurance for one month. So, we couldn't get tagged for DS4's renal failure as a pre-existing condition. And at least Medicaid in all shapes and forms does qualify as continuous coverage.

DS4 did get RSV that month (it was January). I didn't dare take him to the doctor because I was afraid she'd want to admit him. So, we took shifts and his dad and I nursed him through it.

Anonymous said...

OK. OHHS Class of 1980 is me TwinsX2. I was working on another blog today and forgot to chnage it!

Anonymous said...

Helen Harrison to rhondalue who wrote:

"uiversal care is NOT the answer-it'd be a train wreck and my friends from Canada and England have told us of horrible waiting periods with serious painful conditions and it is just inhumane and I think less govt is better. Just my opinion but I don't think people should be denied care when they truly need it."

Let me tell you about my own son's experience last year in our for-profit,"less-government," medical system.

Ed, a 32-year-old former preemie with multiple handicaps, developed shunt malfunction in June, 2007.

He was admitted to UCSF (University of California at San Francsico -- one of the nation's most esteemed hospitals) for emergency surgery.

We, and he, waited... one day, two days, three days while Ed was in agony, but the operating rooms were unavilable. Ed was being kept NPO during this time (no food or water) in hopes an OR would soon be free.

As a result of this wait, his bowel shut down (ileus), causing his abdomen to swell to the point that his incision (after he finally got surgery) would not stay closed and became infected.

His lungs shut down from the pressure on his abdomen (secondary to the ileus, secondary to being NPO and on pain killers for three days) and he had to be rushed to the ICU, with oxygen, CPAP, and and an NG tube. He nearly died, and his suffering was horrible to witness.

What should have been a day or two in the hospital for a simple shunt revision became a 2-week nearly-lethal ordeal.

The reason for the lengthy delay in our son's surgery was a sudden influx of heart-lung transplant patients -- much more technically interesting, profitable, and more "life-or death," in the estimation of the hospital.

These things happen in non- univeral, and universal, health care systems. It is called "triage" in which those considered the most gravely ill are treated first.

You or I may not agree with the hospital's priorities, and some of their decisions will certainly prove to be wrong, but triage (cost-benefit analysis) is a reality everywhere.

In our case, it led to a horrible, nearly fatal, costly-in-every-sense-of-the-word outcome with adverse health consequences for our son with which we are still coping over a year later, causing Ed to be readmitted to UCSF earlier this summer with pneumonia and a heart attack.


TwinsX2 said...

Right now, DH has been waiting for surgery. He has Rheumatoid Arthritis and needs his ankle fused. He had his knee replaced two summers ago. First, we had to wait to see his PCP. Then we had to get a referral to the orthopedic doctor. Then, we found out that the orthopedic doctor that we were referred to, doesn’t “do” ankles. So, we needed a second referral. Once he finally got in, we had to wait 3 months for an MRI. Then another month for a follow up. After all that, neither of the hospitals that this doctor uses could find a 2-hour slot for the operation for over 3 months. So, the surgery is scheduled for November 7. The upshot is that the doctor cannot now guarantee that DH won’t lose his foot because “we’ve waited too long”. So, we wait in the US. Boy, do we wait. We’ve been working on getting his ankle fixed for over a year! And pain? The methadone doesn’t even help.

Next, he needs his shoulder rebuilt. Wonder how long that will take?

And don't even get me going on the waits for the doctors who treat the preemies!

Anonymous said...

Here is the thing with the waits (for adults, anyway): I waited for my MRI, too, when I first had my knee injury. I used up 2 weeks of my sick leave/disability leave even before I had a diagnosis, and even before I had a perscription for pain control. Waiting for surgery took up another week of sick time . . . and pretty soon you don't have any more sick time left for your actual recovery from surgery. That is how it went for me.
Chris and Vic

Kristie McNealy said...

Waiting... Our preemie stuck something in here ear, and no one could get it out. She needed to be taken to the OR. This was mid July. When the surgery scheduler called, she said the next available time slot in the OR (for a 5 minute procedure they were "squeezing in") was October 21st!!

Thankfully, we got her in with another surgeon in the same group.

The previous time I tried to get an appointment with that ENT group, the wait for new patients was 6 mos! It took us 4 months to see a pediatric food allergy specialist, and almost 4 months to get a CT and a bronch last year as well.

Kathy said...

Only somewhat related to health insurance:

Life insurance.

Like most people, we didn't bother getting life insurance (over the small amount our employers paid) until we became parents. We should have bought policies BEFORE conception.

Thanks to my pregnancy, I now weigh more, and I now know about my two blood clot disorders. (One is quite serious, but rare, so they never would have caught it on their routine blood tests.) I also have to add postpartum anxiety and PTSD to my medical history, and the insurance company talked to my psychiatrist. I'm not suicidal, never have been, so I don't see how post-NICU depression is relevant to my chances of dying young. But, the insurance company feels that a fat, depressed woman with an autoimmune blood clot disorder isn't a good insurance risk. Strange, huh?

I was still able to get coverage, thank goodness, but over the long run I'll be paying thousands and thousands more than if I'd gotten it taken care of sooner.

We also bought life insurance for Claire. That might seem weird or morbid, buying life insurance for a baby, but there's a good reason for it.

Claire will never be younger or healthier than she is right now. We're in the honeymoon phase of post-prematurity, toddlerhood, when we don't have any official diagnoses to disclose other than reflux. Our insurance company didn't require a physical for a one-year-old, and her premium for permanent insurance is really, really low.

It's an investment, something that we can use for tax-deferred college savings or whatever, but the most important thing is that no matter what happens to Claire, medically, she'll always be insurable if she keeps up this policy. She can add to it when she's older, without ever having to fill out a medical questionnaire or get a physical.

Considering that prematurity seems to open a mystifying lifelong can of worms, academically and medically, making sure that she would always be able to secure life insurance seemed like a wise thing to do.

If only we could do the same thing for her, health insurance-wise.

I forget what percentage of people who declare bankruptcy do so because of medical bills, but I remember that it's shockingly high.

Joan said...

An article related to this subject:

UNC study: 'chilling' hardship rates among families raising disabled children
Monday, August 18, 2008 or


Kate K. said...

We were fortunate insofar as my insurance covered all of our son's NICU expenses. I did have to fight them on several things, so that they made good on the conditions laid forth in their documentation.

The brain trust at Schaller Anderson did get squirrelly over some things. For example, they paid for the oxygen, but refused to pay for the overnight studies that led to my son getting off oxygen. Incredibly short sighted on their part. Luckily, the good folks at Dependable Health Services, the oxygen company who was making money off my son being on oxygen, lent us the pulse-ox for free. Ironic that Schaller Anderson refused to pay for the study that would reduce them having to pay for the oxygen (the dummies) if my son did OK. The first pulse-ox study showed that my son wasn't ready. Several weeks later, the good folks at the oxygen company lent us the equipment again (for free) when the insurance company again refused to pay for it. The second study showed that my son was ready to come off oxygen.

All in all, we have been fortunate in that the only expenses that we have incurred are co-pays (which are many, but not that bad compared to what some people have to pay).

Although my son (and husband) are covered under my insurance, I do support some form of universal health care for children. Politically, I consider myself a moderate. I am conservative on some things economically. However, it seems to me that children don't choose the family and related conditions unto which they are born. Like education, I think that the government should cover health expenses for those under 18 years of age. That said, any kind of "universal" coverage would have to incorporate some kind of market competition for services, so that the cost of the services stayed as low as possible.

I am not holding my breath, however, for either of our political parties to reach such a conclusion. The Democrats appear fearful of anything that involves competition for services. The Republicans are too antagonistic toward anything "universal" in the health domain. In short, Democrats are too liberal on the topic, Republicans too conservative.

There are some drawbacks to a universal approach, even with market competition of providers embedded in the process. There are questions about whether or not everyone should have to pay, for example, for children born to parents who knew going into the pregnancy that there was incredibly high likelihood that the child would be born prematurely. On one of the other threads, it was mentioned that a large percentage of NICU babies are born to people who have several embryos implanted at once, which is inherently risky for those embryos that survive. Knowing those risks, is it fair to make everyone else shoulder the financial burden of the consequences? Ultimately, I don't think it is exactly fair when such births could be prevented (if people would pay for the more expensive single embryo route), but I also don't think that children should be penalized for the choices that their parents have made. So I'm inclined to support universal health care of children in general.

I bring up the issue of fairness as my husband and I consider whether or not to have another baby. We really want to have another child, but we plan on consulting with a high risk OB first so that we know the risks. If it is clear that my chances of having another premature child are incredibly high, we don't think it would be responsible to pursue that course of action, and will adopt instead (something we had planned to do eventually anyway).

Kate K. said...

BTW, does anyone have any figures on how well the number graduating doctors has kept up with the pace of the population increase?

How often do new medical schools get built, and if they aren't getting built, have medical schools been increasing enrollments?

What effects does supply and demand have on overall medical costs?

Anonymous said...

Helen Harrison writes:

There are many more neonatologists per live birth in the US than in other health care systems (which have better neonatal outcomes, BTW).

Supply, in such lucrative medical subspecialties, may, in the US, be helping to drive demand, often with poorer results.


Kate K. said...


Could you elaborate more on your first statement ("There are many more neonatologists per live birth in the US than in other health care systems (which have better neonatal outcomes, BTW)"? Specifically, I am curious about other nations having better outcomes. I have heard that mentioned a couple times on different threads.

Is that better developmental outcomes, better survival outcomes, or both? Are there different thresholds across nations in terms of what is considered a viable outcome?

And, what are the major medical approach differences between nations when it comes to treating premature infants? For example, in terms of nutrition, I have heard that European countries have used formulas made with DHA much longer than the U.S. Are there difference in breast feeding rates too? Kangaroo care? Approaches to using oxygen? Approaches to conducting lab tests? Approaches to therapy post-NICU? Lengths of NICU stays? Use of massage therapy? Etc.

As a side question, in political scientist, there are scholars who specialize in comparative politics. Are there medical researchers who document comparative trends across nations against outcomes, or is that left up to the WHO?


Anonymous said...

Helen Harrison to Kate K:

In the 1990's (and I don't believe the question has been explored since)
the ratio of neonatologists per 10,000 live births in various countries were the following:

UK 1.0
Australia 1.8
Japan 2.6
Netherlands 2.7
Switzerland 2.8
Canada 3.1
US 6.1

(Silverman, Pediatrics 1993;92:612-613)
So we had then, and probably still have, 6 times as many neonatologists per live birth as the UK whose neonatal developmental outcomes are better than in the US (compare the NICHD stats on outcomes for ELBW infants, with the EPICure stats for example).

Also in the 1990s, Escobar et al. revealed the "striking finding of a 50% greater rate of disability among [VLBW]babies born in the United States compared with other countries." (Escobar et al. Prognosis of surviving very low birthweight infants: a meta-analysis. Arch Dis Child 1991;66:204-211.)

I was later part of a large multi-national VLBW outcomes research team that explored school-age outcomes among a number of countries in a number of studies.

In one study, population based groups <26 weeks gestational age in New Jersey and the Netherlands were compared. It was found that, among micropreemies, the US had double the survival rate but 4 times as many ventilator days and 10 times the incidence of disabling cerebral palsy.

(Lorenz et al. Comparison of Management Strategies for Extreme Prematurity in New Jersey and the Netherlands: Outcomes and resource Expenditure. Pediatrics 2001;108:1269-1274.)

I believe overall lengths of stay in other countries are also lower, but I'll have to check that.

I have no evidence that any of the other factors you mention have affected outcomes either in the US or in other countries.

At gestations higher than 26 weeks our outcomes are still worse, and survival is no different.

As for comparisons between treatment philosophies in various countries, Kristina Orfali has done some excellent work. I'll try to get back to the group with her studies and other references.


Sis Sarah said...

We currently choose to stay poor so that we can keep medicaid and my son qualifies for SSI. It's abusrd but that's what we do. My son is on oxygen, if I don't have the money to pay them, they take the equipment away.

Live in Missouri and so far the system doesn't seem to bad, heck my son got his SSI within 3 weeks of applying, totally unheard of in many states.

were from Utah, and they suck.

I would LOVE to hear one of the political campaigns come up with a solution for getting states to stop with the waiting lists for mediciad. If you qualify you shouldn't be placed on a 7 year waiting list. Some states are really good, some stink, so obviously it can be done correctly.

I think the British system totally stinks. Some parts of Cananda's is not too bad, although complicated but like Ontario, totally sucks. Formula is not covered (and i'm not talking about baby formula), hospital beds, other adaptive equipment totally not covered. I also have seen both in Canada and Britian that the dr.'s openely discriminate against though severely disabled children. That there is no urgency, if they have an accute problem and your severely disabled, it's like they hope that if they make you wait long enough you'll just die and no longer be there problem. And when they talk about waiting for a test. They don't mean hours or days or even weeks. They talk about months. As an example, all of the sudden your on oxygen, when you did not need it before. The wait for a ct scan of your chest is 6-9 months. Um crazy!!!!

I personally think massachutes has the best system. Did you know there, if you are losing your health coverage because of a job loss, they will actually arrange to pay your cobra. Why? Cause it's way cheaper for them to pay that cobra, then to have to foot your medical bills, brilliant. You can still get mediciad, but they make your former employer insurance foot much of the bill.

they also have programs to help pay your insurance premiums, again brilliant.

Texas stinks, Utah stinks, some parts of california stink, Florida not so good.

Heard good things about Washington. Idaho is good.

Sis Sarah said...

One other thought.

equating one's medical care as groceries or lawn care or using an attorney.

If I don't or can't buy groceries, There are means to get food otherwise ( I know cause I live this life currently).

If I can't afford the attorney I can represent myself

If I don't like the lawn care I can fire the mower.


If I cannot afford my son's health care. If I cannot afford my son's hospital bill, while he is there I WOULD NOT BE ALLOWED TO JUST TAKE HIM HOME.

I would be arrested if I tried. When my daughter was in the NICU, she was a 33 weeker, there would be no way on earth I could of just picked her up and taken her home. If I tried, The hospital would of gone to court to stop me.

Because of this unique situation where in most cases we are not allowed to let our children die, or go without extremely needed health care, the hospital vs patient relationship is different.

terri w/2 said...

Emily said "I think this is a very important topic and one that is no doubt getting a lot of media attention right now with the upcoming presidential election."

Interesting that you brought this up in the first post to this thread - one of the news shows were looking into Sarah Palin's background as governor of Alaska - they said that she cut services to the disabled and their families by 62%.

Imagine just how much damage she could do as president. Or, the fact that McCain picked her speaks volumes as to his mindset as well.

Anonymous said...

From Helen Harrison to Terri w/2:

The apparent 62% cut to special needs children, it turns out, had to do with the removal of half of the funded programs in this category -- a "boot camp" for adolescents -- into another category in the budget.

What a "boot camp" was doing in the special needs kids' category in the Alaskan budget is another matter.

According to the New York Times, Palin has so far really neither raised nor lowered funds appropriated by her predecessor. She did sign (but had nothing else to do with) a bill that *may* raise spending for special needs children, but it is currently tied up in lawsuits claiming the bill does not do enough for children with autism.

Meanwhile, many seriously disabled children in Alaska must be sent to the lower 48 states for the special residential and educational care they need.


Anonymous said...

Helen Harrison writes:

I've been busy with Ed's birthday and much else, but I finally downloaded the articles about the study at UNC that Joan linked in a previous post.The study documents "chilling" hardship rates among families raising disabled children.

The study tells us what many of us already know: that *middle income* families are "struggling to keep food on the table, keep a roof over their heads, and pay for needed medical and dental care."

For example, 40% of middle income families with disabled children experience "food hardship" in which they run out of food and have to go hungrybecause they don't have enough money.

These families, earning two to three times the federal poverty rate are ineligible, of course, for most government assistance programs, according to the study.

These findings, the authors state, are particularly troubling in light of the recent economic downturn.

Please read these articles and pass them along to all those neonatologists/politicians/people who resent spending tax money for the disabled.

These clueless people seem to think our families are already well taken care of by existing programs. They need to hear the truth. or



Kyrsten said...

'Haven't had time to leave my "two cents."

Joshua's bills were mostly covered by my then-job's insurance, *and* we came through the NICU experience relatively "unscathed" (relative being a... well, relative term!). However, what couldn't be foreseen was the loss of jobs (first hubby, then a forced switch to p/t for me).

We've never recovered financially. Any savings is gone, and we're paying bills but putting groceries and gas on the credit card this month, until my odd-schedule paycheck comes in.

In the meantime, it was determined -at renewal time, might I add- that no one at the Social Security office had "begun our file correctly" (how is that our fault, I asked?). Therefore, we made too much last year (made too much?! Are you kidding me? We live in a family-owned home and pay lower rent because we'd be out on the street otherwise!). Our case is in review; we're waiting to see if we have to pay back the $6000. in SSI Joshua received last year.

Meanwhile, according to our hospital rules, we qualified for 90% charity care for J.'s eye surgery this past June. What exactly is "poverty" to our government these days, anyway?

We're paying $300./month for COBRA until hubby's new job (yay!) insurance kicks in... and while some say that amount's not bad, the continuing coverage is not worth the paper the policy is printed on. We're currently on payment plans with several health companies and the pediatrician(including a lab company, for recent tests on me to determine how to [try and] prevent another preemie birth).

BTW, we live in NJ, so we're already paying among the highest taxes, car insurance, etc. (and don't believe what they say about our incomes being so great!).

So (sigh). What to do?

Anonymous said...

I'm not trying to be mean, but how about starting with not having another child since you obviously can't afford it?

Tamara said...

Anonymous, while you are indeed trying to be mean (I love when people decide that because they put in a disclaimer they are "allowed" to say what they want and you can't take offense to it) no one chooses to have a child born with a disability. The point of these comments and this blog post have nothing to do with a debate on someone deciding to have more children or not. Which is why your comment is odd. We are talking about the children we all ready have that came into this world premature and because of that have disabilities.

I don't care if you make $30k a year or $230k a year, a child with disabilities is expensive and there's no possible way to "foresee" the financial hardship that comes with it.

My husband and I both work, we have good jobs, good wages. We pay hundreds of dollars a month into the system, but I spent just over $1200 on my son's therapies, special formula, medical supplies, co-pays, and hospital bills last month. I HAVE excellent insurance. I don't know about anyone else but $1200 is a house payment for a lot of people and I'm paying that in addition to all my other bills and mortgage. There's no assistance available to me, I make too much. I can't qualify for any state or federal program, if it gets to be too much I have to start paying for groceries with my credit card.

We've cut back on a lot of the frivolous things we used to spend money on... vacations are a thing of the past. Can't even consider it. Even a simple "date night" with my husband is now 4+ months past because of our finances. I think the misconception that a lot of people have, including the medical community, is that there is a program there that will help and cover people if they need it. That's just not the case. Which makes it even more frustrating because only those who are experiencing it can truly understand while the rest of your neighbors, family and friends are oblivious and sometimes can't believe that there wouldn't be a program there if their own family needed it.

ThePreemie Experiment said...

Great comments everyone! I apologize for not being here to add my comments along the way. I wasn't getting any emails alerting me that any comments were being left under this topic. I thought that everyone was just being super quiet. (silly me-lol)

I don't have time to comment right now but I think that Tamara said it best when she wrote:

"I think the misconception that a lot of people have, including the medical community, is that there is a program there that will help and cover people if they need it. That's just not the case. Which makes it even more frustrating because only those who are experiencing it can truly understand while the rest of your neighbors, family and friends are oblivious and sometimes can't believe that there wouldn't be a program there if their own family needed it."

Perfectly said!!!

ThePreemie Experiment said...

Anonymous wrote: "I'm not trying to be mean, but how about starting with not having another child since you obviously can't afford it?"

I'm not sure if anonymous is referring to me or the other person who left a comment who is currently pregnant. But I will assume you are talking to me and explain my situation.

You may be shocked by what I'm about to say but... you are right.

Hubby and I did not plan on having more kids. Not only were we afraid that we would have another preemie (since we didn't know why my water broke with Paige), we also knew that we couldn't afford to have another child with disabilities. Also, every time we had talked about trying again (a few years after Paige was born), we both knew that we would not be able to live with the guilt if the 2nd child ended up with long term issues secondary to prematurity, just because we wanted more children.

When I became pregnant with our son, hubby and I were quite surprised. Without getting into too much detail, let's just say that we used many methods of birth control. I still got pregnant. My children are 7 1/2 years apart.

My tubes are now tied. There was no way that we were going to risk getting pregnant a 3rd time.

Our decision to not have more children was OUR decision. I know many of you will not respect that decision. Some of you will applaud it.

Let's not get off topic and spend the rest of this post criticizing others decisions. I do not pass judgment on you if your choices are different than mine.

Kate K. said...

I'm curious about some definitions. How does the federal government define "special needs" and "disabled"? Do those definitions vary from state to state?

In thinking about long term costs of prematurity, what sort of "effects" of prematurity are not covered on those definitions?

Kyrsten said...

Anonymous, like Tamara said, one of my points was that some things are unforseeable!

We'd been married 9 years, both stable jobs, good medical insurance, etc... We had no idea that in the space of a few months we'd find ourselves pregnant with twins, have a premature birth despite excellent prenatal care, and suffer the loss of one son and the "disability" of another.

The question posed was, how have you dealt with costs, and how/if government healthcare should assist with same.

I have a much different perspective on "don't have children if you can't afford them" than I have had in the past.

Besides, speaking in general terms, the "American Dream" is beyond many of us today: the gap between wealthy and "working poor" is tremendous. The old adage to "pull yourself up by your bootstraps" is laughable to many.

Should only the wealthy have children? Or, for that matter, have access to good healthcare?

On the other hand, I *do* resent those folks who seem to have a knack for "cheating the system," who brag about living off the government's checks. I'm not generalizing, but they are out there...

IMO, the point is that the system is broken. Why must healthcare or government assistance be an "all or nothing" situation? Why was Stacie told to divorce hubby in order to get assistance? Why would we have received unemployment only if my husband had been fired, not renegged on a job offer?

BTW, I am the one expecting again -and the one to whom you initially responded, I think.

This pregnancy was unexpected, but not "unwanted" (DH and I have profound faith that our children will change the world -for the better- in one way or another). So to echo Stacey, *our choice*; and while we don't expect anyone to pay our way, we certainly don't think hard-working, willing-to-do-what-it-takes families should have to face tragedy alone-- or have to make a choice regarding a pregnancy (ie., to terminate) simply because of what may happen.

There are too many scenarios in life to prepare ahead of time for all of them. Our healthcare system needs to be restructured, and we need discussion, not pat "don't have any children" soundbites.

Anonymous said...

Well said Kyrsten.
I agree the whole system is out of whack. I think most people have become too cynical to picture themselves in someone else's position. We judge others before we even listen to them. Unfortunately, a lot of people believe that helping others in need costs too much but funding an illegal war, bailing out businesses and allowing business to legislate our country is totally acceptable. If we don’t fix these major problems in healthcare and education, then sadly the United States will be headed for economic crisis (worst than current) and our great nation will fall.
I believe there is hope.

Best wishes for a successful pregnancy.
Mom to Daniel, age 6 (24 wker)

Anonymous said...

Helen Harrison writes:

For a look at what might lie ahead try this link (hope it works):



Anonymous said...

The real problem is treating healthcare as a business. Insurance companies lose money if they have to cover anyone with severe acute or chronic medical problems. To be profitable, they have to deny coverage of many necessary treatments, or have relatively low lifetime caps. Hospitals and physicians have a different problem - they often WANT to treat patients, but can't afford to when the insurance companies refuse to pay, unless they raise the prices for your out-of-pocket expenses. Yes, R&D costs for developing new treatments are high, but passing these on to the consumer means that many cannot afford the healthcare they need. IMO, the current system of trying to make a profitable business out of anything healtcare related is more than a bit immoral - at the extreme, only those with high incomes or those with almost no income are allowed to live.

BTW, my only experience with a preemie is my mom, born at around 7 months almost 60 years ago. Dunno if her severe autoimmune disease has roots in prematurity, but it's given us a lot of experience with insurance companies!

Kate K. said...
This comment has been removed by the author.
Kate K. said...

I partially but respectfully disagree with Emily on business being the problem.

There are problems when services aren't treated like a business. Governmental institutions are often inefficient when there is no competition in place. When there are no checks on services, the problem is that there is no incentive to try to keep costs down (other than "doing the right thing"). Unfortunately, a lot of people don't do the right thing.

Have you ever waited for several minutes to be served by a cashier while she chatted on the phone with a friend? Obviously, such poor service means that the cashier either doesn't feel the need to to do a good job and/or doesn't feel threatened at the possible loss of her job. My husband was commenting the other day on how much more efficient and friendly service in stores is now that the economy is not doing as well. Business know that the can't take customers for granted, and employees know that they have to do a good job in order to stay employed.

Same thing with health care. As I mentioned in a previous post, I do think that there should be universal health care for children. However, competition has to be built into the model in order to keep the quality of services high and the cost low.

B Vila said...

Regarding cost of micro preemies,heres a kicker (we had a 23 weeker via forced resus. or more blatatnly medical rape as I see it). Emanuel was enrolled in a catholic school recently, after relocating to another part of town. He previously had been attending a relatively wealthy suburban public school with a good reputation. The Catholic school kicked him out because his needs were to great for them to pay for. Of course I couldn’t help but notice the hypocrisy. It was a Catholic hospital that basically decreed all of the medical experimentation done to him that practically assured his outcome. Nancy tells me she performed a parent observation the day before it was determined that he did not meet the criteria for enrollment and was appalled at the way they treated him, or rather did not treat him. He was basically isolated and not given any attention at all. I suppose the thinking must have been why waste our time on the disabled. I have to wonder if this is the lesson they think Jesus taught?

Anonymous said...

TPD Here. I do understand the irony. But I don't think it's an inconsistent approach the Catholics take. The private schools (including Catholic schools), just don't have the money to successfully address most learning disabilities in the classrooms, especially given the socioeconomics of the areas where they are in operation. The only "Catholic" school I know of within 20 miles of me costs $22k per year per child and only provides limited speech therapy...the true Catholic schools in the nearby city charge about $2k per year per child, and I doubt that parishioners could afford to subsidize the costs of accommodations for multiple kids. The public schools are mandated to educate everyone, and in most cases will (or can be legally forced to) use taxpayer money to provide accommodations to children living within the area served by the school system. I do think this is a decent system, despite its many flaws.

I only have one more comment (sorry but the issue of who pays for ongoing medical care and the individual financial devastation under the current health care system is not a topic I could begin to intelligently opine on)...

my comment is regarding the "if you can't afford it don't have children" post...although some gave the topic respectful discussion I don't think it deserved any response at all.

Anonymous said... has something to say about medical care costs for kids and SCHIP.

Chris and Vic

Anonymous said...

Helen Harrison, here:

Hi, Brian!

I have forwarded your message to one of my favorite priests.

I'll keep you posted about any responses I get.


terri w/2 said...

I would have to agree with Brian above on the "Catholic" issue. There does seem to be a high level of hypocrisy. .the general consensus is unwavering support of the pro-life movement, however little to no support of those who survive with disabilities.

Anonymous said...

From Helen Harrison to Terri w/2:

It isn't just the Catholic Church but the anti-choice movement as a whole that engages in this sort of hypocrisy.

They insist we have to torture severely impaired babies to life, but then...well..the survivors and their families are on their own.

One of our presidential candidates is running on an extreme anti-choice platform while promising to "make health care more like the financial industry."

(Given the events of the past few days, I have to wonder if this might mean, in fact, that socialized medicine is right aroung the corner?)


B Vila said...


To think that just because one branch of government mandates that another branch pay for something and to assume that actually happens, is, I’m sorry to say, very naïve. Indeed it is often the taxpayers that refuse to pay the taxes that the schools need to function. The Politian’s get elected by promising not to raise taxes thus not properly fund the programs that are needed. After all, who wants to pay this tremendous cost of disabled people? .I’m sure you don’t, the taxpayers don’t, and the Catholic church doesn’t. So who is left? Well first in line is the individual families hence a source of much justified resentment. This cost is actually produced by the field of Neonatology and passed along to the rest of society , and this my friend is a very lucrative business for neonatology at the cost of the rest of society. So while the fundamentalists demand the experimentation on human life is necessary according to their belief system, they are unwilling to pay for the consequences subsequent to their demands. The inconsistency Is easily enough seen If one considers how the belief system supposedly values human life and then when it comes time for them to affirm this value with their own pocket book, they cut and run. I guess they only value it if they don’t have to pay the cost.

Tamara said...

You know, I have to post on a related topic but it will seem unrelated. There's a new article up on about Alabama linking premium costs for health insurance to worker's health. Now I now that this article is covering the angle of obesity but the whole thing terrifies me.

This is a jumping off step for what we can expect down the road. In 15 years, when my son is grown, is he going to be turned down for a job because he has health problems? I can all ready tell you that my husband, while searching for a new job, was reassured by friend that was looking to employ him that while all of his workers were relatively healthy they would make sure to get us an insurance plan that would cover my son.

This is, of course, an ideal scenario and we were grateful but the fact that an employer was bringing up the "health insurance" question at all was scary.

I know that there are numerous problems with the high cost of insurance to any employer these days and that our health care system is in trouble. But while reading this article I reflected back on this post and I'm very nervous about what the future holds when articles like this pop up. Just the idea that a corporation/government is linking health care premiums to a worker's health or medical condition is setting the tone for more companies and state governments to jump on this bandwagon to save money. Penalize anyone that will up their cost. Except (maybe not at this moment but imagine a decade from now) now they are going to start adding medical conditions; history of heart disease, women of childbearing age (pregnancy is very expensive to cover for companies), cerebral palsy, MS, etc. It's opening the doors to pretty soon include a whole new set of people with the employer yelling "you're too expensive for us to cover".

dee said...

tamara - that is completely terrifying?

Do you not have labour laws that would protect against this kind of thing? In my country (South Africa) it is completely illegal to even ask about medical conditions or pregnancy (or even the intention to one day have children) in a job interview unless it is directly relevant to the job. So, a deaf person applying for a call centre job could legitimately be turned away etc.

Don't get me started on the state of the public health system though... I do have good medical insurance, but its expensive and most people in this country can't afford it.

However, my employer pays 60% of the premiums for it (I work for local goverment). Importantly, if you are forced to switch medical plans due to a change in employers, the new medical plan is legally required to waive waiting periods related to pre-existing conditions. Additionally, my employer requires all of its employees to have medical insurance, as they have found that it dramatically reduces absences from work and dismissals due to ill health. My father is a manager at a large manufacturing company, and they have a nursing sister come into the factory once a week, and all the employees can see her for free.

While there are flaws in the Canadian and British systems, I support the idea of socialised insurance or socialised medicine. Without the NHS, my father would not have received glasses, braces and other dental care, vaccinations, and would probably have died of scarlet fever as a child.

What do your taxes go to in the US?

Kristie McNealy said...


As far as where our taxes go, we have that "little" war we've been fighting that has cost something like $872.6 billion. See for reference.

And to everyone on the anti-choice issue:

After all we know from our collective preemie experienes, I am horrified by the fact that my state (Colorado) is trying to make a fertilized egg a special class of person with inalienable rights. That would pretty much give Coloradans no choice on pregnancy complications, resuscitation, etc.

Talk about scary.


Anonymous said...

To b vila,
I see the irony in your Catholic experience but want to clarify that Catholics believe in respect for life but not at all costs. It is unfortunate that you were forced to resuscitate because according to information that I obtained on the vatican website, the following is their official stance on this:
Discontinuing medical procedures that are burdensome, dangerous, extraordinary, or disproportionate to the expected outcome can be legitimate; it is the refusal of "over-zealous" treatment. Here one does not will to cause death; one's inability to impede it is merely accepted. The decisions should be made by the patient if he is competent and able or, if not, by those legally entitled to act for the patient, whose reasonable will and legitimate interests must always be respected.
I am sorry for your experience and hope you find a school that can accommodate your son's needs and a place where he can thrive.
Best wishes,
mom to Daniel 6, 24 wker

Anonymous said...

TPD Here. I don't think anyone has suggested that these issues are simple. But life and money/services are not inextricably intertwined. Both can exist without the other. There are strong themes of blame and entitlement that permeate these discussions. If we stop and blame and entitlement, I think there is no way to have meaningful discussions on issues like who pays for the ongoing cost of medical care, pro-life vs. pro-choice, religion, etc.

Anonymous said...

TPD Here.

Quoting from a previous post:

"And to everyone on the anti-choice issue:

After all we know from our collective preemie experienes, I am horrified by [pro-life legislation]."

Ugh. Please do not lump me in with those parents who are pro-choice "from ... preemie experiences". That may summarize YOUR feeling and position, but it is certainly not mine.

I think that pretty much sums up what The Preemie Experiment comment area has become - a forum where people who came to their pro-choice positions after having a premature child can commisserate, blame, share conspiracy theories, and feel entitled in the company of like-minded individuals.

terri w/2 said...

TPD said "I think that pretty much sums up what The Preemie Experiment comment area has become - a forum where people who came to their pro-choice positions after having a premature child can commisserate, blame, share conspiracy theories, and feel entitled in the company of like-minded individuals."

Actually, I was pro-choice prior to having my twins - the experience did not cause me to change my viewpoints, but rather, solidified them. I was appalled to find that we had no choices on resuscitation/discontinuation of tx, thanks to the Baby Doe Laws (pro-life legislation).

As far as surmising that TPE has become a place for like-minded individuals to commissurate - hmm. .and if that were true, that would be a problem. .how? There are support groups for everything, why not those parents sharing concerns and viewpoints related to the caregiving of survivors of prematurity?

Certainly, we do not all share the same viewpoints here, and that is very clear to those of us who have been with TPE since the beginning. Although it does get heated at times, I would like to think that there is respect for all viewpoints.

Kyrsten said...

Wow. And I thought the discussion was going so great!

I was surprised by the comment that TPE is simply a place to confirm pro-choice thoughts, etc.

I actually come from a strong pro-life background, but have chosen to respect the fact that we live in a free society; to leave some of these issues aside and discuss health care, preemie care, etc.

In addition, I am an activist for "put your money where your mouth is;" it is extremely disturbing to me that others of my faith continue to push "choices" that are simply beyond one's reach without offering real help or alternatives.

That's all I'm going to say, because I don't want to get mired down in a philosophical/religious/ethical debate... but I did want to kind of repute your labeling of everyone here.

Anonymous said...

I am going to leave comment as anon. Although truth be told I bet they would know who I am if someone nosed around. I live in a small town in KS. I have aspergers and many other ailments. I want to go back home but my Mother won't have me due to the health care here. It is amazing. I am fully covered. The state pays for a nurse 60 hours a week for me, transportation covered at 4 dollars a trip and doctors to and from are free. plus Food stamps I get way more then Florida. Meals delivered for lunch. Available for deliver for dinner just so much. Jobs are not so much here though. The house I live in is huge and 425 a mos. I live alone. I can't afford it. Though I need to move somewhere smaller and that will be solved also. So yeah I would die in Fl for all the help they give. And I hate KS but love the snow. ratspeak @ Gmail dot com if any questions. Kandi

karl said...


Can anyone recommend insurance providers for a preemie? Our son, on my policy, has maxed out his lifetime coverage for preemie related conditions? Any guides of quotes that we should expect would be greatly appreciated. We presume that an insurance company will say that his condition is a pre-existing condition, and will refuse to insure our son. Our son as born at 24 weeks.



Karl said...


Can anyone recommend insurance providers for a preemie? Our son, on my policy, has maxed out his lifetime coverage for preemie related conditions? Any guides of quotes that we should expect would be greatly appreciated. We presume that an insurance company will say that his condition is a pre-existing condition, and will refuse to insure our son. Our son as born at 24 weeks.



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