Elanor and the ACA (updated)

Update—

Today the Supreme Court chose to uphold the ACA.

Today is a Thursday.  What that usually means is that we have a sitter to give me a break and Ravi comes home late.  Tonight he was home before 10, specifically so we could watch the decision come down.  Ravi and I watched the SCOTUSblog live feed, knots in our stomachs.  When we heard that it was upheld, we cheered (likely scaring our babysitter in the living room).

Please excuse me while I do a happy dance and resist the urge to go wake up my child, so I can hug her and tell her she actually has a future, and she really can be anything she wants to be.  After that I’ll be donating to the re-election campaign (again).

************* original post below*****

I try to keep the political stuff, particularly the American political stuff to a minimum here on the blog.  I generally feel like there’s a time and a place for it, and that it generally doesn’t jibe with the spirit of what I’m trying to do here.

I would like to one day be able to say that the most important piece of legislation passed in my lifetime was a Marriage Equality Amendment.  It is the Civil Rights issue of my generation, and I am deeply committed to seeing it through.

However.

The most significant piece of legislation that has been or will be passed in my lifetime is Healthcare Reform.  This weeks marks the second anniversary of the Affordable Care Act in the US, aka Healthcare Reform.  People spend a lot of time trying to tear it down, and bitching about its many imperfections, but it is a life altering piece of legislation for our family, and for thousands of families like ours.  Until it happens to you, it is impossible to understand that without insurance everyone is just one health care crisis away from financial ruin, no matter how well-off they might be.

This is not going to be a post that takes on the entire ACA.  Rather, it is the story of how the ACA gave Elanor a future she would never have had otherwise.

Warning–This post is going to be long, and it will contain graphic details and photos.  It may serve as a trigger, particularly if you’ve ever dealt with a child who has a life-threatening illness.  I’m going to strongly encourage some readers (my parents, my inlaws, friends with young babies) to stop reading now, as what Elanor went through is the stuff of nightmares for parents.


Elanor’s Illness

I remember thinking at the time that the most dramatic part of Elanor’s birth story was going to be the pain I felt due to a bad reaction to my epidural (one too many top-ups had caused fluid in my spine, resulting in agonizing pain across my shoulders and into my neck) and how my OB had been yelling at me that I had exactly 3 pushes to get this baby out before she gave me an emergency C-section.

It wasn’t.

Ellie was born with the cord around her neck.  Every movie, every tv show, every story had prepared me to be ready to hear my newborn crying out from the shock of entering the world.  Elanor made no sound at all.  I remember that she looked blue, and that her first apgar was low.  I felt very lucky that a NICU team was in the room (I needed a vacuum assist and it was hospital policy that they be there), and they got her breathing fairly quickly.  However, I was only allowed a brief look and hold (not more than a minute or two) before she was whisked away to the NICU.

Initially we thought that we’d gotten off lucky when she only needed oxygen blown at her face via a tube for 3-4 hours.  We were told that they were going to give her some antibiotics until blood work came back to clarify that she was healthy, and that it was standard procedure in a case like hers.

Antibiotics are given via IV for babies.

The first tests came back contaminated, so they had to be repeated, causing what should have been a two to three day hospital stay to become a four day hospital stay.  During those four days (Monday-Thursday morning) Elanor somehow managed to knock out four IV’s (one or two may have been that the veins blew, a common occurrence in babies this age, but at least two were her doing).  We all laughed and shook our heads in mock exasperation.  Our baby wasn’t going to stand for such nonsense as an IV!

I remember breathing a sigh of relief that the second set of tests showed a healthy baby.  We took her home Thursday and thought that the biggest challenges that lay ahead of us were sleep deprivation and helping her and I figure out how to breastfeed.

On Friday she met her pediatrician for the first time, who noted that she had “mottling” of the skin.  It could be a sign to worry about, she said, but it’s also not an abnormal condition in newborns that could mean absolutely nothing at all.

Looking back with the eye of a more experienced parent, she was so clearly losing ground that weekend.  But we were first time parents, and everyone told us that babies are often quiet on days 5 and 6 of life.  She was so hard to feed…I had to practically force feed her by pushing on the end of the playtex drop-in, and I was stressed about that, but things seemed okay.

Then Elanor stopped eating on Sunday night.  I called the 24 hour nurse line for our pediatrician, and they told me that as long as she was peeing and pooing (she was) that it could wait until morning. She wasn’t running a fever.

We were exceptionally lucky that we were able to get an appointment first thing in the morning.  Our pediatrician, a former ER doctor, didn’t sugarcoat her condition.  Elanor was running a very low temp.  The mottling had spread.  Our baby was very, very sick.  We were told to go straight to the emergency room.  Her exact words were “Don’t stop for red lights.”  At the time we took it to mean “don’t stop and grab some coffee and donuts,” but we later realized that she actually meant “don’t stop for red lights.”

Americans know that hospital waiting rooms usually mean a ridiculous wait time.  We were heading to Mass General Hospital in Boston, a busy urban hospital, which should have meant an even longer wait.

We were triaged immediately, and rushed into a room, where doctors immediately asked me to remove her sleeper and they started trying to IV her.

They couldn’t.

We were moved into “acute emergency”, and our corner of the room was suddenly flooded with doctors, residents, and nurses.  One nurse was assigned to Ravi and I specifically, to try and handle us as the seriousness of what was happening began to really set in.

source

The picture above is what is known as an intraosseous system.  It looks, and sounds, like a woodshop drill.  When a team can’t get an IV via normal methods, they use this to drill a hole into a bone (in Elanor’s case, her left shin) to get fluid into the body that way.  I’m not a doctor so I don’t fully understand why this works.  What I do know is that it has to enter the bone perfectly.  It took them two or three tries to do it properly.  I also know that the sound of this machine entering her body is something I will never be able to forget.  Without looking, my fingers can find the scar that her shin still bears.

Heat lamps were aimed at her body as they tried to get her temperature up.

People swarmed around her, trying to stabilize her to the point where she could be taken up to the PICU.  Ravi and I stood off to the side, both of us sobbing, holding each other.  Yes, we thought she was sick, but this was so far from what we had imagined as a worst case scenario.

This was the first time I realized that my daughter might die.

Ellie was stabilized to the point of being able to be transferred and she was whisked away to the elevators used for patients and doctors.

The nurse whose unfortunate duty it was to deal with us had to take Ravi and I up to the PICU (Pediatric Intensive Care Unit) through the public elevators.  She pushed the empty baby stroller, while we numbly followed her.  I was clutching the sleeper I’d removed in the first room like a lifeline.  In the elevator journey to the 6th floor, a well-meaning woman glanced into the stroller and said “where’s the baby?”  I crumpled against Ravi, moaning.

We were led to a private room and given water.  That day was a blur of waiting, crying, fear, doctors who couldn’t answer the most important question of all “Will our baby live?”, my father in law sitting with us, and pumping.  Pumping was the only thing I could actually DO.  The only time I put the sleeper down was when I needed my hands to pump.

About six or seven hours later, we were led to a private room in the PICU.  Elanor was alive, but they weren’t sure if she would make it through the night.  I’ve read her medical file since and I know that she went into cardiac arrest and stopped breathing.

If we had waited even one to two more hours to get to a doctor, she would have died.

Maybe five people have seen the photo below before today because it is so graphic.  Elanor has never seen this photo, although she will one day when she is ready to hear the full story of her medical history.

I took this picture of Elanor that night because I was terrified that I would never have the chance to take another picture of her again.  Dreams of birthdays and graduations were reduced to one…that she would live through the night.

November 10, 2008.  PICU, Mass General Hospital

The long and short of it is that somehow she had gotten an infection that had turned septic.  Sepsis is when your blood becomes infected.  Infected blood circulating through your body means that all your major organs take a hit.  When Elanor got to MGH, she was in septic shock and early stage organ failure.  At that point in the illness, sepsis is fatal in somewhere between 20 and 50% of all cases.

In Elanor’s case, their priority was to hit her with a ton of broad spectrum antibiotics because they didn’t have time to wait for a blood draw and tests.  As a result we do not know exactly what bacteria it was that infected her, how she got it, or why it almost killed her.  The most likely scenario that the Infectious Diseases team could come up with is that when Elanor dislodged those four IV’s after she was born, they created four perfect entry points for bacteria.

It was, basically, just bad luck.

November 11th and the morning of the 12th were good days.  It seemed that the antibiotics were doing their job and that she was bouncing back with a vengeance.  There was even talk of removing her from the ventilator on the 12th.

Then an ultrasound of her brain turned up bad news.  There were two small bleeds in her brain; she had had a stroke.  For several days she was put on anti-seizure medication as they did more detailed imaging (CT Scan, and then on the 13th an MRI) and tried to figure out how bad things were and whether they were getting worse.

On November 15th, they were able to take her off the ventilator (she’d been kept on it longer in case she were to have another stroke, I believe…I’ve reviewed my carepages updates from those days, and I’m not completely clear whether she needed it for other reasons or if it was discovering the stroke and waiting to see what happened). Apart from about 10 minutes while they changed her bedding on the 13th (when I was allowed to very carefully hold her), it was also the first time that we were able to cuddle Elanor since her admission.

Testing over several days, such as a spinal tap were able to rule out a few potential illnesses (for example, the lack of white blood cells in her spine ruled out spinal meningitis), and she was weaned from five antibiotics to either two or three.  Elanor was put on a feeding tube (a tube inserted in her nose) and my breastmilk was given to her slowly via that tube.

On the evening of November 15th, Elanor’s blood pressure began to go up, and she was put on labetalol, a drug that would be part of a major drug shortage starting in 2011 (story here) and if this is correct, is still not easily available (a fact that scares the hell out of me).  She would remain on this drug until March or April of 2009.  A nephrologist was brought in, as high blood pressure in a baby of her age almost always means that there are kidney issues.  It wouldn’t be until February that imaging would show that one of Elanor’s kidneys had failed permanently-the hypertension was caused by her body trying to keep it alive, basically.

Elanor was moved to a regular pediatric floor on November 22nd.

Nov 22nd, 2008 Mass General Hospital.  Notice the hand going for her feeding tube.

On November 23rd she started drinking milk from a bottle.  She drank expressed breast milk, which they added calories to.  This allowed her to drink less and get the same number of calories, as she was still a bit weak.  On November 25th they removed the feeding tube as she’d been able to drink all her milk from bottles for two days.

On November 27th, which coincidentally was also Thanksgiving that year, Elanor was disconnected from constant IV medication.  It marked the first time I could pick her up and walk more than a few feet from the IV pole with her (which had still allowed us to cuddle her while sitting in a chair or laying on a cot next to her crib in the room). I remember carrying a sleeping Elanor down the hall and describing the paintings on the wall to her, thrilled to have the freedom from the constant IV’s.

Thanksgiving 2008, Mass General Hospital.   You can see the connection points for the IV’s under her leg, but they were only given every x hours, rather than continuously

In a stunning blow of irony, Ravi and I both caught gastroenteritis that week.  Ravi had to stay away from the hospital starting the 25th because he was ill.  I came down with it the evening of Thanksgiving, and ended up in the emergency room of MGH myself.  I was admitted for observation for about twenty hours, and received a number of bags of fluid rehydration (as I was pumping through the whole thing).  This is only relevant because Ellie would likely have been able to go home on either Friday November 28th or Saturday the 29th, but with sick parents, they elected to keep her until the 30th when both of us were healthy again.

November 30th, home again, sharing a moment with her Daddy

However, being released from the hospital was only the start of her journey.

What were her medical needs after the initial illness?

Elanor’s medical care was my full-time job for over a year after that (by which I mean driving her to appointments, attending early intervention sessions, reminding everyone about what medications she could/couldn’t have, and just trying to stay on top of everything).

  • Home Nurse–For several months she had a nurse come to our home to check her blood pressure three times a week, then twice weekly, then once weekly and to weigh her as her dosage had to constantly reflect her blood pressure and be adjusted for weight.
  • Nephrology–Elanor saw her nephrologist regularly, and her kidneys were monitored closely until we were able to determine that one had gone necrotic (failed permanently) and the other seemed to be healthy.
  • Neurology–Elanor had muscle tone issues and there were concerns about how she would do in terms of developmental milestones
  • Pediatric Stroke Team–Elanor was followed closely by a pediatric stroke team to follow the progression of her bleed and to monitor her for issues
  • Gastroenterology and Nutrition–Ellie lost weight while in the hospital and she had trouble gaining after being released.  Eventually we would discover her food sensitivities and put her on prescription formula at about 5.5 months.  She only stopped being followed by them at age 2.
  • Early Intervention–Having a stroke qualified her for EI services automatically.  For her this meant a weekly visit from a nurse who specialized in helping babies and assessing developmental progress
  • Physical Therapist (from EI)–When Elanor began crawling at around 8 months, it started to become clear that she wasn’t using both sides equally, so a PT was brought in to work with her.  After she began walking, her PT noticed that she had motor dysfunction (her right foot basically pointed in and down, and was not moving properly) and referred us to the Orthopedic Surgeon/CP specialist.
  • Orthopedic Surgeon/Cerebal Palsy Specialist–Although Ellie walked at 10.5 months, she had motor dysfunction, her PT noticed that there were issues.  Our Orthopedic specialist was able to asses her early enough that we were able to put her in a brace early on that corrected the problem by age 18 months.
  • Occupational specialist (from EI)–Every few months the occupational therapist would come in and help assess Elanor.

Oh, and of course she had the usual pediatric appointments with her pediatrician for well baby visits and vaccinations.

Elanor ended up needing two pieces of medical “equipment.”

Portland Children’s Museum, Maine, December 2009

Her first piece of medical equipment was a helmet as she learned to walk.  She was at increased risk of a repeat stroke if she were to fall and have head trauma, so she was helmeted from the time she started walking until about 14/15-ish months, when she was determined to be a skilled walker.

Foot Brace, taken January 2010

The second piece of equipment was a foot brace to correct her issues with her right foot.  She wore this from 14 months of age until around 18-24 months of age (with less and less time wearing it daily once she was 18 months).

Where is Ellie today?

Ellie, age 3. Photo taken March 2012 by Kirsten

We are lucky.

Three years later, if you were to meet Elanor, you would never guess at her history.  She is an active, social and bright little girl with a passion for life.

We are lucky.

Ellie still sees her stroke team annually.  There are potential issues down the road, such as learning to read.  Some stroke patients have trouble with their vision when reading left to right (crossing the mid-line), so they’re keeping annual tabs on her for now.  She’ll get another neuropsych work-up at age 6, after which she may be released.  I don’t know at this time.  Her risk of another stroke is low, but not 0%.

We are lucky.

Elanor had her first neuropyschological assessment last September.  While the stroke did cause some white matter damage (white matter controls the muscles and such, so it’s no surprise that she did have some motor issues early on), her grey matter is intact.  She is developmentally where she needs to be with no signs of any sort of development/emotional/behavioral/learning disabilities.

We are lucky.

Elanor has one working kidney.  It is growing at an accelerated rate and she should end up with 60-75% of normal kidney function.  She will not be allowed to play contact sports (and for lower contact sports like basketball, she will need to wear some kind of guard/vest/thing).  Should she ever become pregnant, she will need additional assessments, and may need high risk care, depending on the the toll clearing both her and the baby’s waste takes on her kidney.  At this time, her nephrologist does not think she will ever need a transplant.  She will, however, need annual kidney checks for the rest of her life.

What does any of this have to do with the ACA?

While Ellie was sick, if we had been uninsured, I don’t know that we would have gone to the doctor as quickly as we had.  However, if we had waited to see a doctor because of lack of insurance, even waited two or three hours, Elanor would have died.

We had good health insurance at the time of her illness.  We paid a relatively low co-pay ($250 USD) for her hospital stay.  However, the bill for that stay was 250,000USD, not counting Dr’s fees.  Obviously an insurance company doesn’t pay 250k, but if we had been uninsured, we would have been on the hook for all of it.  Even though we were fairly financially stable, the bills for that stay would have bankrupted us.

When Ravi parted ways with his former employer in November 2009, we are lucky that we were in a place to afford COBRA insurance.  Had we let our insurance lapse, Elanor would never have been able to get coverage again.  While you and I might look at Elanor and see a triumph of medicine and her own stubborn spirit, insurance companies see nothing but a pile of pre-existing conditions that they want no part of–they see a potential transplant or dialysis, stroke, more expensive pregnancies, and a thousand other potential complications.

When Ravi was considering his current job with GNB, insurance was an issue that almost tanked his acceptance.  Had we not been able to get insurance that the US accepted, Elanor would have been considered without insurance for 60+ days and therefore everything would then have been a pre-existing condition.  We could not accept a job, dream job or not, if it did not include access to quality (US accepted) health insurance.  With the passage of the ACA, insurance is one less consideration for potential expats.

Before the ACA, Elanor would have needed a job with insurance within 60 days of graduating college.  Once we could no longer cover her, Elanor could not go more than 60 days post graduation without insurance.  This meant that no matter how talented, she could never think of pursuing a career in the arts (unless she had a day job with insurance) or any other career without immediate insurance.  It meant that her FIRST criteria in picking a major and finding a job would be insurance; not happiness, not location, but insurance. While we love her and would do anything we could to support her dreams, we are not wealthy to the point where we could just pay for her medical care out of pocket for the rest of her life…and a transplant or dialysis would bankrupt us.

Look, insurance companies are scum, and I will be the first person to say that the ACA doesn’t go far enough.  BUT, thanks to the ACA and the fact that my daughter can not be denied insurance for pre-existing conditions, her future is now in her hands.

Now I’m not lying to her when I tell her she can be anything she wants to be. 

Unless…

Unless the ACA is dismantled.  There is a Supreme Court challenge coming up.  The Republican candidates are using dismantling it (among other divisive issues) as part of their platform.

The ACA is modeled on my home state of Massachusetts’ health care reform.  While it is has not been perfect, one thing you can say about it is that post health-care reform in MA, we have the lowest rate of uninsured children (and adults) in the country.

We still have so far to go, but I urge you to contact your elected officials and urge them to support the ACA.  Healthcare is not something that anyone ever goes their entire life without using, and you never know when the unexpected will happen.  The consequences of the unexpected can be devastating.

I edited this entry the day after I wrote it to clarify a few words, and fix some awkward phrasing.  I finished it and published it at 5am originally, so it needed a few fixes.

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15 Responses to Elanor and the ACA (updated)

  1. Tonya says:

    Boy oh boy, that was a heart-wrecking read. I knew only a tiny portion of what you went through and my heart reaches out to you. It also brought back memories of Anthony and his four week NICU stay. Our bill was over 100k, but with health insurance we had to pay approximately $600 and that was for two different hospitals and at least two different pediatric doctors. Health insurance is vital and is the one step between financial destruction for most families (who don’t realize the value of it). Thank you for pointing out exactly what the ACA does for us and our children.

    xo

    • Crystal says:

      People really don’t realize exactly how big those bills get and how fast. You are absolutely correct that most Americans are one health crisis away from financial ruin. Most people also don’t know about lifetime caps, or even the small scale scummy stuff like each leg brace just happens to cost 750 USD, which is the limit most insurance companies will pay…so if you need two (one per leg) you’re on the hook for 750 dollars, which for someone like my mom is almost half her take-home pay for a month.

  2. Carlie says:

    Far out! You had told me she had some problems when she was born but I didn’t realise to that extent. Your right thou, if you ever met E you would never realise what she went thru to survive. I have to think thou that her will to live and your unwavering love for her brought her thru and the medical was just the back up.

    Makes me so greatful and appreciative of living/growing up and birthing my own babies here in Australia. I swear I will never take for granteed our medical system again.. even thou it could be improved so much more. If any of us need to go to hospital we have no out of pocket expenses, except for added things or extras. There is a huge waiting list for things that are not life threatening however it will be done eventually for free.

    Ive only been hospitalised twice (due to giving birth) and only been to the ED perhaps three times in my life and the boys never. However I know i can go and be fixed and not charged an exorbidant amount to take that road. I had no idea there were other countries out there that you couldnt just go to hospital and be fixed and not have to think abou the bill. Same with our GP, you pay $80 and as we have Medicare you get 48.7% (or some such amount) refunded back.

    I have to admit I was shocked at the American medical system being the way it is for the country that it is and especially compared to Australia.. I guess there is a lot more people in the States then here but still, doesnt that mean more people paying into the system??

    Its is a credit to you as parents how well E has turned out and if anyone is able to care for whatever happens in the future im sure its you guys. She is one beautiful little girl!

    • Crystal says:

      The thing is that health insurance is a FOR-PROFIT industry in the US. So there are all kinds of things like lifetime caps (they’ll only pay X dollars over your lifetime and too bad so sad for you if you need more than that), or refusing to pay for certain types of cancer treatments, or charging women 50% more for insurance by virtue of their sex (being a woman is apparently a pre-existing condition). Insurance companies have deals with particular hospitals, which results in “in-network” and “out-of-network” care. You pay X (lower cost) for in-network and significantly more out of network because the insurance company doesn’t have discounts with those out of network providers.

      The conservative wing of the American political system has done a phenomenal job of getting Americans to think of health insurance and health care as a priviledge and not a right as it is seen in most of the rest of the developed world. They’ve managed to convince a large number of people the universal health care will lead to (or IS) socialism…these are people who don’t actually know what socialism actually is, so they believe it. It’s pretty disgusting, actually.

  3. bookjunkie says:

    I would have had absolutely no idea about Ellie’s health issues if I didn’t read this and your previous posts. She looks like a bright beautiful vibrant child in the pink of health.

    It was heart wrenching to read what you and Ravi had to go through. Any parent would have been completely shattered and it’s not surprising that you both fell really ill after holding up under such distress for so long. Just looking at that photo of the drill …..and baby E all bandaged…… Just so glad she is doing so well now.

    I did not understand about the US medical system before…had no idea. I understand a bit more of the issue about insurance and pre-existing conditions. Hope that current status does not change and ACA is not dismantled.

    Had no idea too that E’s choice of vocation would also be clouded by the insurance factor.

    Medical costs worry me too….it’s a scary thing that one illness or injury could totally ruin you…it’s extremely stressful and worrying. In a way I’m glad that in Singapore we have medisave and some form of insurance in place. Even then, I often feel nervous about it.

    • Crystal says:

      The US Medical system is a complete disaster, and everyone agrees on that. But there are radically different approaches to how to deal with it…many people have an attitude of “I have mine, screw you” and think that people are entitled or impinging on their freedom because we think that everyone should have access to affordable health care.

      The major difference that I can see between American and Singaporean health care is that in teh US, no one is asking you about payment until afterward. They HAVE to give you care in the emergency room regardless of your ability to pay. Which sounds good until you get a multi-thousand dollar bill that you can’t pay. This is one of the major flaws in the ACA opponent’s argument…they try to argue that the government is forcing you to buy a service that you may not use–but no one manages to go their entire life without partaking of the health care system.

  4. katrijn says:

    That must have been such a horrible time. It’s such a blessing that she’s doing well now! And there you were, telling me Ellie hadn’t fallen ill through her first year – but we were talking baby fever and ear infections, and I get the difference 🙂 (good thing though, that she didn’t get those as well!)

    Even though I’d read a bit about the American health care system, I had no idea it could play such a big role in deciding what people can do with their lives. The US is known to be the land of the free and endless opportunity!

    I suppose I just assumed that if your job didn’t cover you, you could get an (expensive) private insurance to cover you for a while. We are so blessed in Europe – even though we have to pay for our own health insurance the companies are obligated to accept every individual for the basic policy (the government determines what is covered by the basic policy – crucially “unaffordable care” is always covered and paid for by the government).

    I saw Sicko, but knowing Michael Moore’s activism I discarded much of what he said. What a great thing this new Act is! I’m keeping my fingers crossed for you and all other medical miracles that it’ll be upheld and hopefully amended into an even better law!

    • Crystal says:

      Yeah, I tend to think of head colds and ear infections when I think of “getting sick” in the first year with Elanor. Honestly, most of the time, I put this experience in a little box and repress it unless I’m at a doctor’s office and need to make sure that medications are safe or I’m giving her medical history.

      I’m going to quote wikipedia as health care in teh US is incredibly complicated to explain…

      Doctors and hospitals are generally funded by payments from patients and insurance plans in return for services rendered (fee-for-service or FFS).

      Around 84.7% of Americans have some form of health insurance; either through their employer or the employer of their spouse or parent (59.3%), purchased individually (8.9%), or provided by government programs (27.8%; there is some overlap in these figures).[53] All government health care programs have restricted eligibility, and there is no government health insurance company which covers all Americans. Americans without health insurance coverage in 2007 totaled 15.3% of the population, or 45.7 million people.[53]

      Among those whose employer pays for health insurance, the employee may be required to contribute part of the cost of this insurance, while the employer usually chooses the insurance company and, for large groups, negotiates with the insurance company.

      In 2004, private insurance paid for 36% of personal health expenditures, private out-of-pocket 15%, federal government 34%, state and local governments 11%, and other private funds 4%.[54] Due to “a dishonest and inefficient system” that sometimes inflates bills to ten times the actual cost, even insured patients can be billed more than the real cost of their care.[55]

      Insurance for dental and vision care (except for visits to ophthalmologists, which are covered by regular health insurance) is usually sold separately. Prescription drugs are often handled differently than medical services, including by the government programs. Major federal laws regulating the insurance industry include COBRA and HIPAA.

      Individuals with private or government insurance are limited to medical facilities which accept the particular type of medical insurance they carry. Visits to facilities outside the insurance program’s “network” are usually either not covered or the patient must bear more of the cost. Hospitals negotiate with insurance programs to set reimbursement rates; some rates for government insurance programs are set by law. The sum paid to a doctor for a service rendered to an insured patient is generally less than that paid “out of pocket” by an uninsured patient. In return for this discount, the insurance company includes the doctor as part of their “network”, which means more patients are eligible for lowest-cost treatment there. The negotiated rate may not cover the cost of the service, but providers (hospitals and doctors) can refuse to accept a given type of insurance, including Medicare and Medicaid. Low reimbursement rates have generated complaints from providers, and some patients with government insurance have difficulty finding nearby providers for certain types of medical services.

      Charity care for those who cannot pay is sometimes available, and is usually funded by non-profit foundations, religious orders, government subsidies, or services donated by the employees. Massachusetts and New Jersey have programs where the state will pay for health care when the patient cannot afford to do so.[56] The City and County of San Francisco is also implementing a citywide health care program for all uninsured residents, limited to those whose incomes and net worth are below an eligibility threshold. Some cities and counties operate or provide subsidies to private facilities open to all regardless of the ability to pay. Means testing is applied, and some patients of limited means may be charged for the services they use.

      The Emergency Medical Treatment and Active Labor Act requires virtually all hospitals to accept all patients, regardless of the ability to pay, for emergency room care. The act does not provide access to non-emergency room care for patients who cannot afford to pay for health care, nor does it provide the benefit of preventive care and the continuity of a primary care physician. Emergency health care is generally more expensive than an urgent care clinic or a doctor’s office visit, especially if a condition has worsened due to putting off needed care. Emergency rooms are typically at, near, or over capacity. Long wait times have become a problem nationally, and in urban areas some ERs are put on “diversion” on a regular basis, meaning that ambulances are directed to bring patients elsewhere.[57]

      Elanor could not get private insurance as an individual because of her pre-existing conditions. On an individual basis, an insurance company is under no obligation to cover anyone. They can reject you for any reason whatsoever.

      Going more than 60 days without insurance makes any health problems you had prior to that a “pre-existing condition” that your new insurance (whenever you get it) does not have to pay for. So if E went more than 60 days without insurance, everything kidney related (and anything they could potentially blame on her kidney/stroke) would be hers to pay for 100%, no discounts.

      Insurance is usually provided by all professional employers (teachers, professional employment, etc).

      If you work for retail or a restaurant or a “blue-collar” industry, you need to work X hours for a company with X employees before they are required to give you insurance (and that varies state by state).

      Some states charge women up to 50% more than men because apparently we’re more expensive…a sex bias premium.

      Many states only cover part of a pregnancy or don’t cover any infertility treatments.

      There are all sorts of scummy things they do to kids, too. Kids in a wheelchair can only get a new chair every X years, regardless of how much they’ve grown. If a child needs a brace like Elanor’s the pricing is such that the company usually will only cover one of the two braces. If you’re financially stable like us, the other 750 USD is affordable, but for someone who makes a low wage (like my mom) that 750 is almost half her monthly take-home pay.

      When I needed an expensive anti-nausea medication during my pregnancy, they would only pay for 10 pills at a time, requiring me and my doctor to have to push through a new prescription twice a week.

      The ACA is the first (of many needed) steps to reform these sorts of scummy practices.

  5. Erin says:

    The biggest problem with American health care is not spending money. We spend more than twice as much per person than any other country in the world even those with “free” public health care. However, we don’t get better life expectancies or outcomes. We also have so many uninsured people. Why? Here is the perspective of just one lowly family doctor from Massachusetts.

    Ok start with two big issues high US drug costs and lack of transparency on what you spend…Crystal you said your Dr. had to fill out paperwork to get you the anti-nausea drug. The most popular drug for severe pregnancy nausea in the US is zofran which works pretty well and is generally considered safe in pregnancy but costs a fortune. However, is it the best drug?

    GlaxoSmithKline made the drug exclusively until recently when it went generic. They spent a lot of money trying to prove the safety to the FDA, US doctors and patients. The drug company also lobbies like mad to make sure the government does not change their profit margins. The drug lobby is one of the strongest if not the strongest lobbing force in Washington. Democrats and Republicans are guilty of using their funding a lot!

    The American College of OB and Gyn (ACOG) states vitamin B6 which is over-the counter and dirt cheap is safe and effective and the first choice but yet I remember my OB gave me zofran first why? The costly ads say zofran works a little better and prescriptions are generally perceived by patients to work better. The doctor and patient don’t really “pay” for the drug so the Ob gives the zofran. Happy patients and less phone calls is a good thin. The only roadblock is the paperwork the staff must fill out so the drug company thinks other options were thought of in the first place. However zofran must be the best prescription drug, right?

    Not necessarily…Most of the world i.e. Britain where their health care is cheaper uses a combo of doxylamine and vitamin B6. This works probably as well as zofran and at a fraction of the cost. This is not sold in the US because it was blamed on some birth defects in the past. The medical evidence did not support the defects and no case was won but but no company wants to bother with the cheaper drug (i.e. they won’t make money so why hassle of being sued when you can sell the fancy expensive stuff).

    The ACA does make some important steps and I hope it passes because someday we will need real reform which means everyone, even the young healthy ones who don’t want to, have to be part of the pot. This change unfortunately is a very weak effort. The proposals are very PC and it increases our already crazy costs another 1.1 trillion with no way and there is no real way to pay for it.

    • Crystal says:

      Erin, I appreciate a dr’s perspective!

      You are right that I was on zofran. However, that was after the B vitamin and reglan failed. During this pregnancy I was also on phenergan and another drug too. Zofran tended to work the best, but only for a short period of time. I spent most of both pregnancies combining drugs and still walked away 20+ pounds lighter both times and was constantly getting IV’d to rehydrate me both times. So in my case, the zofran and the accompanying bs with the insurance company was a necessary evil to try to keep me from being hospitalized. The irony, of course, was that we were going through all that nonsense for the generic, not the name brand zofran.

      I absolutely agree that the ACA is imperfect.

      However, without it, no insurance company is going to do things like ignore pre-existing conditions or lift a lifetime cap. They’re for-profit entities.

      The ACA also does things like eliminate the ability to discriminate against pre-existing conditions, which gives E a future she would NEVER have had access to. There are incentives for people who want to become GP’s…we have a major shortage of your type of doctor as people go into specialties to pay off high med school bills. It ends lifetime caps (something we might have come up against if E were ever to need a transplant). It does do a lot…I wouldn’t say that it’s weak…I’d say it just doesn’t do enough.

      When E had to get medical equipment, it struck me as conveinent that both the helmet and the brace were 750 USD and that our cap on medical equipment was 750 USD per year (we got helmet in 09 and the brace in 10). If E had needed a brace on each foot, one of those braces would have been out of pocket (which we could absolutely afford, but someone like my mom could not). Had she needed a wheelchair, the insurance company would have only paid for one every X years, regardless of how much a kid grows from age 2 to age 7 for example.

      I paid 90 dollars for an ER visit here in Singapore for Ellie’s stitches after she lacerated her finger. That included the dr, the x ray, the sedation, the stitches and the bandaging. In the US, my co-pay for the ER visit would have been more, and the entire thing would have been high 3, low 4 digits…which says to me that the US is guilty of price fixing and overcharging by a LOT.

      I don’t know much about malpractice laws here…but I do know that my OB told me that the first 200+ (?) babies she delivers each year are just to pay for her premiums, which is ridiculous. The first question a lot of people ask when/if I share E’s story is why didn’t we sue Beth Israel Hospital where she was born and likely infected (especially after a newstory about a major MRSA outbreak there around the time of E’s birth broke a few months later). If there were stricter guidelines about what was just cause for a malpractice suit, perhaps that would help? I have to imagine some of the higher costs/not better outcomes is that, which seems to be a uniquely American way of dealing with stuff.

      You also touch upon another issue we have in the US, and one that I struggle with constantly here. In the US if you go in for complaint X, they will do a billion tests to rule out every possible explanation, no matter how slim the chance. Here in Singapore, they tend to do far fewer tests (which makes me feel less safe–because I’m so programmed to be probed to death to rule out everything and anything). Ironically, here in Singapore they’re much faster to admit to the hospital for observation…something that almost never happens in the US because of insurance companies who don’t want to pay for it.

      In my perfect world, we would pass a universal coverage program and kill the drug lobby. People could get the care they need, and the drugs they need without cost to them. And we would pay for it by doing things like eliminating the bush tax cuts, raising taxes on the 1% (and I say this as a member of the 1%). But the ACA is a start…if it survives, I see us eventually moving to single payer, which would have been the better choice this time around.

      • Erin says:

        The system is so broke. Again we spend a twice as much as any other country and get very little in return. The reform needs tons of cost control or there won’t be money for our children no matter what we try to dictate out of insurers.

        Raising taxes on the rich won’t cover another $1.1 trillion. The reality is the super-wealthy find ways to avoid it. Tax reform that would really help is likely in the in the form of a VAT tax and “wealth” tax. Maybe Warren Buffett should decide how much of his billions he really needs to keep while he is alive. Ask him to give his worth over a billion to the US government and that might help a bit.

        Raising income taxes doesn’t do it. The super rich don’t have income they have investment properties and capital gains. Problem is push too hard an the superrich will move their yachts to Monaco. You and I can’t pay that much more.

        As the world gets smaller with technology and the US looses her world status how much is citizenship worth. I have friends abroad who are contemplating giving their citizenship and they are not that rich. The Brits don’t pay income taxes to the mother country while they are in Singapore or Hong Kong do they? Why? I think GB figured out a while ago then the rich would just leave. The US was sheltered for this for a while but how long will that last?

        As for your daughter’s infection. Not sure why everyone thinks you should sue. Hospital acquired infections are a big problem and unfortunately quite common. As far as I know not usually true malpractice but maybe there is more to the case. There is strict criteria for proving malpractice and only a very small number of cases results in a settlement. Unfortunately there is a lot of money spent by lobbying groups again to keep the horrible system in place.

        Regardless what people should want after a mistake is change in protocols to improve safety and compensation if they are truly harmed Massachusetts and other states are looking at ways to help doctors say they are sorry and human and compensate people for poor outcomes. Now we all live in fear and many “accidents” that are malpractice are not reported out of fear so nothing changes.

        FYI Since 2009 Medicare has stopped paying for complications from hospital stays like nosicomial or hospital aquired infections Other insurers are following suit this has helped change hospital infection control. Hospitals like to get paid. This is beneficial for us all.

        I wish I shared your faith in government but I think they are way to bribed by special interests to make real change. There are some great ideas out there that would actually would help. I contemplate leaving practice to go into administration but I am not sure I can tolerate the red tape. I have been blissfully “ignoring” these problems while here. It was a nice few months 🙂

      • Crystal says:

        Not everyone thought we should sue. But many did. I brought it up to highlight that Americans are a particularly litigious people and to wonder aloud about the cost of malpractice insurance as one of the driving forces as to why equivalent care in the US is so much more expensive than it is in Singapore.

        I fully own that I am very very left in politics. I’m not *quite* a socialist, and I’m certainly right of Kucinich, but I deeply believe that the government should be responsible for things like universal health care, taking care of the poor, ensuring high quality low cost education for all, and so forth. I would never vote for a Republican, no matter how much their economic policies would benefit me–their social politics, particularly those that apply to women and the LGBT community are reprehensible, as is the barely disguised racism. That is obviously going to color my politics and I own that.

        The ACA has it’s problems, but I’ll take a problematic piece of legislation that helps over nothing and the hope that one day something better might come along. Even with the hefty price tag.

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