The real cost of healthcare

So, I know that you are not a typical patient, Miss M. But, I’m thinking we could make a research study out of your healthcare bills. You just turned 14 months old, and your total medical expenses paid out to date is around $300k. The majority of that cost (I’d estimate 95%, without actually looking at the itemized lists) is composed of hospital bills.  The doctors receive very little.  We are sometimes astonished by how little they receive, and how many of their bills are denied by insurance. I really don’t know how they manage to make a living at it (I guess that explains the long hours…). Your dad calculated that the hospital charged $5 per mL for your saline IV transfusions during your most recent stays. If you need a non-metric reference – a mL is less than a 1/4 teaspoon. For saline.

I know there is a lot of discussion about health care costs in our country these days.  I don’t know enough about the economics and realities to understand our own hospital bills, let alone the entire nation’s hospital bills.  But from a personal perspective, I don’t feel that quality and value = expense.  Meaning, the most highly skilled and valued tasks/people/resources are not the ones who get the most money from our insurer. It’s the mundane things, like saline, that seem to cost ridiculous amounts.  Oh, I know, the saline doesn’t actually cost that much.  The hospital is charging us for something else, wrapped up in that saline bill.  Whether it is to pay for illegal immigrant’s hospital bills, or to pay lawsuit insurance, or maybe to even line their own pockets, is irrelevant.  It’s broken.  Smart people need to study this (I’m sure they are) and somehow get through the political rhetoric and media circus to get the general public to understand what is going on (because I don’t understand it).  I think it would take me 4+ years of multidisciplinary study to understand it.  But I wish I did, so that we could make certain we are being as economical as possible in your medical care.

As things are now, we feel that we don’t have a choice.  There is one children’s hospital in town.  All of the pediatric specialists in our town operate out of that hospital – there are no other options.  I’m sure the doctors feel the same pressure – if they want to work in our town, with children, they have to use the local children’s hospital, because “every” other pediatric doctor uses that hospital.  It would be difficult to coordinate care if they all worked at different hospitals.  My thoughts on this are likely also influenced by the fact that Miss M has not received the best care at this children’s hospital.  It’s staffed by young nurses, with minimal experience, who are more interested in texting than in looking after their patients.  Miss M has almost died twice under their (insanely expensive) care.

Early Intervention

I’ve written before about my strong belief in early intervention.  But, actually, today I’m talking about the formal program, Early Childhood Intervention.  Your Dad and I pay nothing for these services.  Depending on your family income and other factors, there is a “family cost share”, but that amount is covered by our medical insurance.  It is a “state and federally funded” program.  Like Medicaid, or similar social services programs.

At first, I thought maybe this wasn’t the place for us.  We could afford to pay for these services on our own, though obviously that money would come from either our retirement or college savings for the kids (sometimes I view money like the ball under the cup of a street magician – slide the three cups around really fast and guess which one has the ball – lift it up – no? – lets slide them around the table again and move the ball into a different cup).  And I have to say, being a perfectionist, I always wonder if there is something “better” out there.

I’ve spoken with people recently who paid for these services on their own, and in fact, we did meet with a specialist physical therapist who is a PhD and professor, in addition to running her own clinic, and did pay for her services (friend of your Nana and Papa’s).  For various reasons, our insurance did not pay much of that visit.  It’s amazing how freeing it is to obtain the services your child needs, rather than considering the cost/benefit of every visit.  Because, even though we could afford as many visits as she needed, we’d be considering the cost/benefit each and every time.  Adding to our stress.

Right now, Miss M, you receive both physical and speech therapy through these programs.  Physical therapy is once a week, speech therapy is twice a month.  You’ve been in physical therapy for about 7 months, but have just started in speech.  Results from physical therapy, so far, have been fantastic.  Even though you are getting very close to walking, you are still continuing to develop upper body strength because of the therapy.  So, even though you aren’t crawling, I continue to see you become more comfortable and stronger when on your hands and knees!  All of this work will pay off later when you have a strong core and upper body to support your fragile spine.

Judge, Much?

I’ve had a very judgmental moment and am trying to reform.  I visited the blog of another family with a young child with KFS, and saw that they were trying to raise funds for their child’s medical treatment.  The total amount they needed, to cover the last 2 years worth of copays and deductibles (they did have medical insurance), was the equivalent of about 2 weeks of my family income (pre-tax).  My immediate first response was to judge.  I admit it.  I wondered why they had another child if they couldn’t afford what I thought were pretty minor medical costs?  I thought the “average” American family would have at least that amount in their rainy day savings?  Or at least could conceivably pay off that amount in within a year or two, by cutting back on other financial choices? What financial choices had led them to this place?

Financially, our family lives very conservatively.  The compelling argument in our family for not having a 3rd child is that we wouldn’t be able to afford a healthy, happy retirement AND college for all 3 kids.  So we’re sticking with 2.  We generally buy 1-2 year old cars and drive them for 10+ years.  Our mortgage payment is about 1/4 of what a mortgage broker would approve us for.  We saved hard for our retirement before having kids so that we could relax a bit now.  We stymie financial planners, since they have nothing to offer us, ha, ha.  Point being, we live well below what we could afford.  Luckily, that is still a comfortable amount, since we have 2 working adults.  But obviously, we still make some important sacrifices for financial security.  For us, the result is that our finances haven’t taken a major hit, even though we are likely to reach our out of pocket max on medical insurance every year for the next 20 (+?) years.  So the thought of having to ask strangers, or even family, for financial help has never even crossed my mind.

I am so grateful for medical insurance – I know we would be totally screwed if we DIDN’T have coverage.  Ironically, I’m totally for health coverage for all – the public option, if you will.  In principle, I want everyone to pay for everyone else’s medical care.  Why was I so judgmental about this one family’s unconventional method of getting co-insurance for their child?  In theory, I’m willing to pay for anyone’s medical expenses.

Maybe ultimately it comes down to fear.  It makes me so frightened to think of not being able to afford your medical care, Miss M.  If for some reason, at some point, laws change, you are held to a pre-existing condition clause – wow.  Our lives will change, not just the emotional, physical, and mental challenges we’ve had to endure so far, but also financially.  Everything we’ve worked so hard for will be gone, in an instant.  That fear is incredibly overwhelming.  I just sit here, kind of letting waves of it pass over me, imagining that possible future.  Such a helpless feeling.

So, I’m going to try to reform, in a “pay it forward” kind of way.  Fellow family with a young child with KFS, this stranger will support your cause and hopes my small contribution will help ease your worries and fears for your child.  Because I truly do believe that how to pay for your child’s medical condition should never be something that you should have to worry about.