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The ACA and Children with Cancer

It looks like the Affordable Care Act (ACA), aka Obamacare, may be repealed soon.   And I wanted to point something out to everyone that already has health insurance through a reliable source, and thus are not likely to be immediately effected by the repeal.   I’m not going to talk to you about preexisting conditions, though that does factor into my child’s future.  I’m not even going to mention the ability to keep my child on my insurance until she’s 26. Why?  Because the Republican party  has already stated they want to keep those two provisions intact.  What I’m going to talk about is an aspect that may make my daughter 100% uninsurable in the future, through no fault of her own.  The lifetime caps.

For those of you that aren’t aware, most health insurance policies (not all, but every policy I’ve ever had) had a lifetime payout cap before the ACA prevented insurance companies from placing them in policies and enforcing them.   What is a lifetime payout cap, you ask?  It’s a provision in your insurance policy that says that the insurance policy will pay for claims, but only up to a certain maximum amount, a cap, that cannot be exceeded in the insured person’s lifetime.  Most of the time, this cap is some astronomical number, like $2 million. Meaning, the insurance company will pay for your illness, but if your illness costs it anything over $2 million, the insurance company stops paying.  The ACA said that insurance companies couldn’t have lifetime caps, so *poof*, there they went.

The ACA was signed into law in March of 2010.  The major provisions went into effect in 2014.  And it was a fiasco.  I’m neither blind nor dumb, and yes, I acknowledge that the government failed to provide a smooth, seamless roll out.  But eventually, like most governmental entities, HHS got it all ironed out and got a plan in place with insurance policies rolling out and people started being insured.  It generally did what it said it would do.  It’s most definitely not perfect and yes some parts of it were ineffective and didn’t work for some individuals.  It has it’s pros and cons, like many fresh bills.  It’s kinks hadn’t been worked out and some people got a raw deal.  Prices went up for some, but it gave insurance to others that never had access to healthcare prior to the ACA.  So there were pros and cons.  This happens with every new HUGE policy creating behemoth bills.  But I was uneffected, as was my family… or so I thought.  So I didn’t really pay attention.

You see, I was at the time, and still am, on an insurance policy through my job.  I didn’t need to rely on the ACA to get access to healthcare.  And in the middle of 2010 we were slowly coming down from an adrenaline rush that started back in 2008 with my daughter’s liver failure, cancer diagnosis, eventual remission and multiple liver-related emergencies.  So I was a bit busy with her to care about a law that I didn’t think would change my life. By 2012, she was in the clear and I finally got around to reading the ACA.

And you know what I did after I put it down?  I ran to my insurance company’s annual (year end) report.  Why?  Because I wanted to see what they’d paid out in my daughter’s lifetime up to that point, with her at the ripe old age of 18 months.  Because I hadn’t even known about the lifetime caps up until then.  I had no idea.

By 2012, our insurance company had removed it’s lifetime caps, so I had to go back through the years to find one on my policy.   My insurance policy, one of the best I could get being a state worker, had a $2 million dollar lifetime cap before the ACA was signed into law.

Sounds like a lot, right?  $2 million.  I’m never going to see that in my lifetime, so I didn’t freak out.  Until….

I looked at what the insurance company had paid out to fight off cancer and deal with the many liver-related emergencies Sophie had had by 2010.  $1.2 million.  Yes.  $1.2 Million.

I was relieved the ACA was in effect.  Why?  Not because I thought she’d keep having emergencies.  She has had relatively few since 2011 and has tapered off in her check-ups and hiccups, and is really a rather healthy kid with an enlarged spleen that can’t ever drink alcohol or play soccer.   Big picture: she’s doing GREAT!

But that was $1.2 million back in 2010.  It’s been 7 years.  I have no idea where she’s at now with yearly MRIs for the 10 years post remission and the ultrasounds and the random endoscopies and all the shots and typical kid stuff.

If you have insurance, you probably think all that stuff isn’t going to add up to another $800,000, right?  You might be wrong.

The average cost of her yearly check-up related stuff is as follows (estimates based on google search):

MRI:  $2600
CT: Between $1000 and $6800
Abdominal ultrasound $200-$1000 (at hospital)
Specialist Doctor appointment(oncologist and liver and orthopedist and all the specialists she’s seen) $200 per visit.
Endoscopy: $800.

So this is what we had on top of the $1.2 million paid out.  Post remission (dated February 23, 2009), she has a yearly MRI for 10 years.   Abdominal CTs with contrast at least once a year,  twice a year anytime her numbers were off and they suspected relapse, but that was really early in remission and hasn’t happened in about 5 years.  She has a yearly appointment with a liver doctor and one with her oncologist.  She has had a psychological evaluation per the oncology protocol and blood work every 6 months because of her enlarged spleen.  And don’t even ask about endoscopies.  She was having those every 6 weeks for a while there to prevent a massive GI bleed.  Another one, I should say.

And that doesn’t count in the number of inpatient stays she had when she’d spike a fever while on the chemo for 23 months.   Kids get fevers, but a kid on chemo with a fever is an inpatient stay for at least 48 hours.  Then the in hospital stays whenever she’d have a massive GI bleed.  And the helicopter ride covering nearly 100 miles and the 2 1/2 hour ambulance drive to Shands related to those to GI bleeds.  The helicopter ride alone was $38,000 and that was 100% covered by insurance.   So you can imagine, we are likely getting up there.

I’m not sure where we are in the big picture for the lifetime cap, though. I’m waiting on this year’s annual review.  But I don’t think we are at the $2 million mark yet. I hope. That begs the question, will she hit that $2 million cap?  What’s she going to cost in the future?

The oncologist doesn’t want to do CTs anymore “unless there is a symptom that is worrisome.”  It’s been years since she had a worrisome symptom.  He’s not even sure he wants to do the ultrasounds, though he does want to keep up the blood work just to monitor her platelets and white blood cells because they are a little low.

The MRIs are still yearly, but she only has two more to go.  And the oncologist yearly appointment stops at the 10 year mark too, so two more of those.  The liver doctor visits will likely continue because she will have permanent, life long liver damage.  But so far it’s been uneventful.  I’m hoping they hit a point they term her stable and just tell us to come back when she experiences anything odd.  Big picture, she’s not going to cost *that* much in the future because of her cancer unless something unseen and unpredictable happens, like it comes back 7 years after remission.  Which is unlikely.

So realistically, why am I worried?  She’s not going to cost that much money to the insurance company in the future right?

Wrong.   She’s a woman.  So she will have yearly female related doctor visits.  That’s $200 for those.  Any urgent-care visit for a cold or twisted ankle or weird rash or continued fever.  She’s a kid.  We have a lot of those.  Yearly physicals with her doctor.  Immunizations she needs to participate in life.  The hospital if she breaks a bone, as kids do.  A car accident.  Getting pregnant and having a baby when she’s older.

Just take a look at some common costs for some common medical conditions that we all deal with in life (estimates based on google search):

Prenatal care and delivery of a baby:  Between $30,000 and $50,000 with insurers paying out between $18,000 and $28,000.  Per pregnancy.
Urgent care visit: $100
Broken Bone: Between $2500 and $16000, depending upon whether there’s surgery involved.
Gallbladder removal surgery (depends on where you are) between $14000 and $26000.
Car Accident Injury $15000 (based on average liability claim for injuries, 2015).

At some point in her hopefully long life, she’s going to tip over the top of that $2 million dollar mark because she was so sick as a baby, and then what?

She would be dropped from her insurance company.  And you can be sure another one won’t pick her up.  Insurance companies are not known for their compassion.

So she’d be a relatively healthy 9 year old.  20 year old.   30 year old.   Uninsurable because she was born with cancer that has been in remission since she was a toddler and has liver damage that is stable and not really effecting her life.  Uninsurable.

And we’re the lucky ones.

So many children out there are fighting permanent, life-long, life-altering diseases.  They need equipment and therapy and help and years of treatments to survive and become productive members of society.  And trust me, we would rather they be productive members of society once they beat this disease.

But if you remove their access to healthcare, then what?  They don’t get the treatments they need.  They can’t go to school because they aren’t healthy enough.  They can’t get a career or a profession.  They don’t add to the tax based to help pay for our society.   Instead, in order to get healthcare, they either don’t work, or they have low wage jobs so they can qualify for Medicaid.  Because that is the only way they can get healthcare.  Through Medicaid. In order to get that therapy or wheelchair, they would have to be unemployed.

Perfectly capable individuals that could be incredible additions to society and add to our society’s wealth and prosperity, not doing it because even if they are successful engineers or veterinarians or doctors, they can’t get insurance.  So why bother?  If the only way you get healthcare is to live off Medicaid, what does that mean we have done to these children?  We’ve taken their futures.

As dramatic as it seems, the ACA opened the door for so many children. And that door is about to slam into their faces again.  And that should not be allowed.

Contact your Congressman or woman.  Get his or her contact information here.

Email your Senator.  Put in your state in the top right of this page for his or her contact information.

Tell them how you feel about lifetime caps.  Tell them about all the children fighting cancer, heart disease, liver disease, autism.  Tell them about their future without the ACA.  Let them know that lifetime caps must not be permitted to be placed on insurance policies again.

8 thoughts on “The ACA and Children with Cancer

  1. Queastion, only because the state rep inquired from me. Where did you get the information about the repeal act, and the lifetime caps being reinstated. Again only to pass the info on to state rep. Thank you.

    Liked by 1 person

    1. Click to access ppacacon.pdf

      That’s the link to the Affordable Care Act (enacted in 2010) on the HHS website.

      Page 33 of the act, Subpart II – Improving Coverage.

      SEC. 2711
      42 U.S.S. 300gg–11

      Replaced by section 10101(a)
      (a) PROHIBITION.—
      ‘‘(1) IN GENERAL
      .—A group health plan and a health insurance issuer offering group or individual health insurance coverage may not establish—
      ‘‘(A) lifetime limits on the dollar value of benefits for
      any participant or beneficiary; or
      ‘‘(B) except as provided in paragraph (2), annual limits on the dollar value of benefits for any participant or beneficiary.

      We are going to be dealing with the (a)(1)(A) provision above.

      It’s a long read, but there’s some descent stuff in the ACA that are NEEDED. Than you for giving this information to the state rep. What state are you in?


  2. My son Alexander was diagnosed at 8 months old. He died after a 13 month fight with neuroblastoma. he was treated at one hospital – an almost 3 week stay in the ICU was close to $200K. He died at a different hospital where he had, had a surgery. 3 days in the ICU at that hospital was $150K give or take $1K I am sure he was over the million dollar mark, if not the 2 million. I guess that is the “positive” thing in it all – I don’t have to worry about him ever getting insurance (of course, I would be happy to worry about that and work 20 hours a day to pay for his healthcare if it meant still having him with us!
    My youngest spent two weeks in the hospital, and then had open heart surgery at 6 weeks old at the “expensive” hospital. Never did figure out the cost of that one….but I wouldn’t be surprised if she was up to $500K. Oh – she has Down syndrome. I have heard horror stories of kids with DS NOT getting covered because it was a “pre-exisiting condition”. SMH and praying for the future!


  3. What costs will the insurers use to tally the cap? Will they use the actual hospital cost or the negotiated cost, which is much less than the actual cost billed by hospitals and medical professionals?
    Also, if a child is on their parent’s policy and has expenses while on it but gets their own policy when they are grown, wouldn’t the amount start at zero because it’s a new policy?


    1. Good questions. I believe the cap is the amount paid by the insurance company. And we were at $1.2 million paid by the insurance company per their own annual report. And even the insurance company has to pay huge bills for some things like 2 month stays in the hospital (which we had) and helicopter rides between hospitals. I think we’d be well over the $2 million mark if we were going by what the hospitals would charge us without insurance.

      As for your second question, I’m not sure. But we were told she would be “uninsurable.” I’m assuming that means for life. I think it might be something much like the preexisting conditions problem that existed before the ACA, where you can get a new policy, but the new policy may have small print that excludes payment if the insured comes into the policy with a preexisting condition. It’s likely the new policies would refuse to pay if the insured’s previous policy was paid out to the lifetime cap.

      gotta love the small print “we can deny your claim if ______ ” that exists in most of health insurance policies.


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