Mom of boy with rare heart condition puts a face on health debate

Nothing can disrupt a political debate like a human face put on the issue.

Alison Chandra did that this week. This face. Her son:

It started on Friday when she tweeted the image of the bill she got from a Boston hospital for her son’s open heart surgery in February.

“My fear is that this bill comes into play and suddenly essential health benefits are no longer covered, like hospitalization, prescription medications,” she told CNN. “He will rely on prescription medications for the rest of his life. He is functionally asplenic and will need to take prophylactic antibiotics the rest of his life to prevent and protect against sepsis, a huge risk of death for our kids in the heterotaxy community.”

Related: Medicaid caps in health care bills could push more special needs costs onto schools (Milwaukee Journal Sentinel)

From birth to death, Medicaid affects the lives of millions (NPR)

  • Jay T. Berken

    Welcome to the real world Republicans and President Trump. Your actions has consequences.

  • crystals
  • Ralphy

    I met a pro-Trump guy (an assumption, based on the anti Clinton t-shirt he was wearing) at the grocery yesterday.
    He had a heavy duty brace on his wrist. I asked him what happened.
    He said his tendon tore. And that it had happened in his other wrist two years ago.
    Work related?
    Nope. His Dr told him it was genetic.
    I said that could be a pre-existing a condition and might not be covered under the proposed TrumpCare.
    He said huh? What do I mean?
    I suggested he ask his Dr what that means and about the Trumpcare.
    He looked at me like I was from outer space.

    • Barton

      My cousin couldn’t get health insurance until the ACA because of his mental health issues. And not having insurance nearly bankrupted his family. But once they were able to get insurance under ACA (and really not with too much premium/above average cost for his area due to his condition) all he did was complain. Even when it meant that a two week stay in a facility cost him less than $300 instead of the billed $15,000, he complained.

      He now wants the proposed AHCA to pass, even knowing that he will no longer be able to get insurance and that another episode could/probably will bankrupt his family.

      It lacks logic.

      • AL287

        People are angry and when they are angry, they make bad decisions.

        The 2016 election is proof how voting in anger is a very, very, VERY bad idea. Nothing good can come out of doing anything in anger. It’s kind of like being too drunk to care.

        The frog in the boiling pot of water scenario.

  • Jim in RF

    Page 33 of CBO estimate: $3 billion in savings because earlier deaths result in fewer benefit payments (WaPo). How many aircraft carriers do we need? (Not that we can’t afford defense + saving lives).

    • Jim in RF

      I looked it up. The newest carriers cost $13 billion to design and build, plus who knows how much to staff and operate.

      • $3 billion would buy ~30 F-35 fighters. So, there’s that (money pit). 😉

        • Ralphy

          $3 billion
          About 4 1/2 days of war in the ME (per the CBO and a study published by Brown University).
          Or 3 NFL stadiums.

    • jon

      Now I want a CBO score on right to die legislation.
      I don’t recall exact numbers but I think it was 25% of all medicare expenses are accrued in the last year of life.
      That’s 135 billion right there…
      I think 20% of all medical spending happened in the last year of life…
      So figure a total of ~$200 billion (maybe higher) of federal spending that could potentially be trimmed up through right to die legislation. Sure you aren’t likely to get all of that money, but even 5-10% will be very close to the total deficit reduction in the house or senate bills are offering…

      • AL287

        The real fly in the ointment started 52 years ago when Medicare was established.

        Average life expectancy was just under 70 in 1965. It has risen to 78 in 2017.

        Depending on body mass index at age 50 the average age of onset of Alzheimer’s is from 77-83 years of age. Average survival time at diagnosis—8 years.

        In 1965, people didn’t live long enough to get Alzheimer’s disease or age-related heart disease or if they had it, it was likely early onset (before the age of 65).

        What the Republicans are saying with this heartless repeal of the ACA is it is no longer worth it to keep elderly people alive or as Ali so correctly stated in her Twitter post, “Sorry, you’re not worth keeping alive anymore. You’re just too expensive.”

        Perhaps we need to adopt the ancient Eskimos style of elderly healthcare. When their elderly tribe members became too frail to care for and used too much of scarce resources, they shoved them out on an ice flow for the polar bears to take care of.

        Cruel but no more cruel than a slow death by emphysema, severe heart failure and a host of other potentially fatal illnesses that will go untreated if the Republicans have their way.

        Makes Republican opposition to funding Planned Parenthood and right-to-life stance look just a tad more than hypocritical.

        • When I turn 70, I’m buying a carton of Luckys and a motorycle. I won’t wear a helmet but will carry an open bottle of bourbon, stopping only long enough at a bar and grill to load up on trans fats.

          It’s as logical an approach to health care as what’s being proposed.

          • jon

            Septuagenarians who haven’t lost their mind, but know they are old enough to get away with anything are the coolest.

            I hope you can find a motorcycle gang of like minded seniors to roll with… I suspect there will be a great deal of them riding around hassling shop keeps at that point.

          • AL287

            Sounds like a reasonable plan to me and that is coming from a nurse with 22 years experience.

            From all appearances, it looks like consuming all the vices you mentioned above is the way to go. You’ll die sooner and won’t be a burden on the government.

            The medical community is rather fickle when it comes to healthy living advice. I think they keep changing their minds just to maintain their social circles and extravagant lifestyles (for some).

            There is no money to be made from healthy people.

          • Jim in RF

            Thought I was with you until I got to the second paragraph.

          • Ralphy

            A one man “death panel”.
            Better than rusting away!

          • theoacme

            With my preexisting conditions, I can’t wait twenty years til I turn 70, I can stand neither smoking (makes me violently projectile hurl) nor Pepto Bismol (also makes me violently projectile hurl) (although I can sing L-S-M-F-T!), prefer a snifter of Grand Marnier, would have a sidecar on my Harley (and wear one of those WWI German Army spiked helmets, while channeling Baron von Raschke), and I’ll have a grill in the sidecar to do bratwurst, Italian sausage, and kielbasa so I can have the transfats while riding (do you want Gulden’s, Grey Poupon, or Plochman’s, Bob?)

            Or I could keep trying to cross the street to catch the bus to downtown Minneapolis (I am up to three figures in near fatalities when legally crossing the street, Zane Ave North at 69th Ave North, hardly a dangerous spot compared to anywhere near Hamline!)

        • jon

          in 1965 the leading cause of death was heart disease and cancer, in 2010 the leading cause of death was heart disease and cancer.

          While cancer has grown and heart disease has shrank they haven’t changed positions and they make up for about 50% of all deaths in both eras.

          While people are living to old ages the quality of life in those older ages has also improved.

          What has changed is the treatment for cancer, and heart disease.
          They’ve gotten much better, we can keep people alive for long periods of time… maybe not always with the best quality of life, but certainly alive! They’ve also gotten much more complicated and much more expensive.

          We can get into why they are more expensive and what can be done about it, none of that appears to be included in the health care bills…

          • AL287

            Looks like a lot of Republicans are having second thoughts or they have realized railroading the bill would not serve them well in the 2018 midterm elections.

            They have postponed the vote until after the July 4th recess.

            Maybe there is hope for the ACA after all or somebody realized the numbers just didn’t add up.

            Two more weeks of holding our collective breaths.

          • Veronica

            Or they keep hoping we won’t notice when they try next time.

  • kevins

    I could post a pic of my first son, now in Cardiac ICU since Friday with some mysterious form of heart failure. He has been on Medicare for several years due to Tourettes Syndrome and a complex of other psych issues related to that. We don’t know if he will live, but are certain there will be a sizable bill.

  • AmiSchwab

    grab mcconnell and his gop loonies and make them read this.