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The Cost of Childhood Cancer

on November 5, 2011

This picture was taken the day we found out Alexander had cancer. We were still in the ER at that point, and I think we were waiting for results.

Alexander spent 250 days as in inpatient during his 389 days of fighting cancer.  Many more days were spent as an outpatient for long days at the clinic.  On the days we were home, he almost always had a nurse visiting him to check his blood pressure.

Just before Alexander got sick, Richard’s insurance company had their “open enrollment” time.  We had the top plan. However, at this time, that plan price was going to go up significantly.  Since I was not working yet, we looked into the next plan down as it was the same price we were currently paying.  Everything was the same, except that the co-pays were slightly higher.  We figured that even if Alexander went to the doctors every month, had a few trips to the ER, and if I had another baby that year, we would be saving money.  Just about 6 weeks later, the “C” word entered our lives.

For some odd reason I have been getting “this is not a bill” statements from our insurance company. What is particularly odd, is that I have only been getting them since he died!  He is still listed on our insurance web site, so I have been able to find out how much was “Billed” for the services he received.   The total amount that was billed by the hospital was:   $1,997,290.88   This number does NOT include pharmacy bills!!!!  One of his medications was $2,400 for 10 doses!!! (our co-pay was $50) He needed this medication after every round of chemo (however many were in the hospital, so we didn’t need to get it every 3 weeks as many others do)

The actual amount PAID by the insurance company was:  $761,036.90

How the whole billed vs paid thing works is beyond me!  Some charges were paid in full, for some less than half were paid.  One thing that is very interesting however, is how much MORE it cost for him to be treated at Children’s hospital for the few days he was there vs how much it was at the Floating Hospital.  For 2 full days, 2 half days, a they billed the insurance company, $128,537.98 (this does NOT include the charges for the doctors in the surgery).  In November 2010, Alexander had another big surgery, one that was half as long as the last one.  However, he then spent 45 days in the hospital, 18.5 of those days were in the PICU.  The Billed amount for that stay $376,542.26 (again it does not include the doctors for the surgery bill) 

Why the difference you ask?? Good question.  Recently we went to an event for the hospital, and learned that because of the “deals” made with the insurance company, Children’s hospital is actually able to receive twice as much money as the Floating Hospital.  Sure, Children’s is a good hospital, and they have kids coming in from all over the world to go there.  Yes, they have good doctors.  But, Floating has wonderful Doctors too, doctors that came from excellent hospitals, and choose to come to a little somewhat unknown Children’s Hospital.

One of the wonderful things about Floating is the fact that it is so small!  We really felt that we got wonderful care, and that all of the staff from the housekeepers, to the Department heads really cared about us and Alexander.

But, I digress from the topic I started out to talk about, and that is Health Insurance.   Here, in Massachusetts it is required that everyone has some sort of health insurance.  Many do not like this, but I think it is a wonderful idea.  I can’t not imagine why anyone would NOT what to have health insurance.  I understand that for many people Health Insurance is very expensive, and it is hard to afford. But I ask those people to look again at the numbers I posted, and think about how expensive THAT is.  As I wrote, there was the “billed vs paid” amount.  That is great when you have insurance, but when you DON’T then hospitals and doctors want the WHOLE amount!  It is a messed up system!!!   Some people go with a plan that covers 80%.  Again, do some math, and see just how much 20% of almost 2 million dollars is.

I heard someone once say “But I am young and healthy so I don’t NEED health insurance”.  Well, Alexander was YOUNG and healthy too!  No one PLANS on getting cancer!  Or, what happens if you are like a friend of mine, driving along minding your own business and get hit by a drunk driver!?!  Then what will you do?  You aren’t young and healthy anymore!  And if you didn’t have good car insurance, and if the drunk didn’t have car insurance, who will pay the bills?

In Massachusetts we have MassHealth for those that can’t afford Insurance because of their financial situation   Sure, there are people that take advantage of the system, and stay on it long after they need to be.  But for us, and many other cancer families it is a saving grace.  We were apply and receive MassHealth which covered all of our co-pays.  In addition it also offered a premium reimbursement to us.  If for some reason Richard lost his job, and we had to switch to COBRA, it would have helped with that as well.   I am grateful to the State of Massachusetts and its tax payers for this program! It helped us, and many others we know a great deal.

Not all of those in the Cancer word are so lucky.  As I mentioned, one of his medications would have cost us $2,400 if we didn’t have insurance.  I read one story, of a family in California that did have insurance, but didn’t have a prescription plan, and that medication wasn’t being covered.  If that child had to go through 8 cycles of chemo, it would have cost them $18,400!!!

I know there is a lot of controversy regarding “Obmacare”.  I will admit, I have not read the 8,000 page document (have you??) so I am sure there are many flaws to it.  But after having lived through Childhood cancer, I can tell you that something HAS TO BE DONE to help people!!  Healthcare should not be a PRIVILEGE, it should be a right!  Not just as citizens, but as HUMAN BEINGS!  I think it is our responsiblity as a society to take care of each other.  No one gets ahead in this world alone.  At some point in time, everyone gets help, even if in some small way.

(a final picture of Alexander)


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4 responses to “The Cost of Childhood Cancer

  1. Erin says:

    I am 100% for health insurance. Mainly because the tab for treating those who refuse to buy insurance is paid by our taxes. Yes, I have been through hell trying to get my insurance to cover things I need, but these same things (surgeries, meds, orthotics, etc) would be FAR out of my reach without it.

    Our country’s health care system is FAR from perfect, but it may be the closest there is. Some of us look idyllically at countries like Canada with their free managed care. Yes, it seems to work great for the average person, but there is a reason that the very sick flock to the US from there and from all over the world. Our system, though driven by money, allows doctors to sub-specialize and companies to finance trials for research and drugs and technology that, in the end, improves the health and saves the lives of so very many.

    I communicate with patients all over the world who suffer from my rare medical condition. Those in Canada and England, for example, are on waiting lists for years, in a triage system similar to bank tellers: when their number is finally called, they go to the next available surgeon, no matter what that doctor’s experience may be. Their only hope, really, is to raise private money to travel to the States.

    And so yes, I fight my legal battles to see certain doctors, but I remain thankful that these specialist doctors are here, for now. I fear measuring the cost of health care only in dollars. The true cost, if these physicians will be forced by managed care to take on every “next” patient instead of those who need them specifically, is more than our country, more than the world who relies on our country, could afford.

    • Carolyn says:

      Erin, I”m not sure about England, but what you say about Canada is NOT true. Canadians who are very sick do NOT “flock” to the US, and our system is not at all like bank tellers. The “years long” waiting lists you claim are for sugeries that are not life-saving, and even then, it is incredibly rare for a wait list to be as long as a year. Perhaps for your rare condition there are longer wait lists, but then, that is probably because there are not many who treat it.

      Our system here in Canada is an excellent one, and it works well. It is not perfect, but please do not perpetuate the American myth that Canadians flock to the US for “better” or “faster” treatment. Yes, some Canadians do cross the border for treatment, but vast majority do not, and receive timely care in our own country.

      You have never personally experienced the Canadian healthcare system, and unless I am much mistaken, you have not conducted research studies into the current wait times for surgeries or to see a specialist in the various provinces of Canada. Because of this, please refrain from making statements regarding the nature of healthcare in my country and repeating the American Myth that Canadian care is somehow sub-par to American care.

      Thank you.

      Nancy, I am sorry for my above vent, I am just beyond fed up with listenting to Americans who read an article one time, or talked to a patient from Canada who think it gives them the right to make broad, incorrect statements regarding the nature of healthcare in my coutntry.

      I could not imagine not having health insurance, and I agree with you 100% that it is a human right to have health care, not a priviledge.

      • Erin says:

        Carolyn, I am very glad that you have received wonderful health care. I may not have been clear that I wrote on behalf of specific individuals with whom I correspond, eight of them in Canada. Their stories are true to what I wrote, and the metaphor was written by one of them. In my journey, I have met many international patients and heard their stories– again, individuals from different countries, not the countries as a whole. Again, I am sure that the system works great for the average person, but I am not average patient, nor are those who come to America seeking care.

        If nothing else, I know that we agree on this: we loved Alexander, and support his parents.

  2. […] you know, we found out the hard way the importance of having medical insurance.  About 2 months before Alexander got sick, we had to adjust our medical insurance.  The premium was […]

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