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Required Reading Posted February 24, 2013 by Jackie Dooley



Today was a good day. Ana was feeling well and seeming more like herself than she has in, well, months. She was down nearly 2 pounds from yesterday, and she said her stomach felt a lot better. She is really rocking this low sodium diet – taking charge and feeling very proud of herself. Emily has also declared she’s “on a diet” and is refusing to eat salt. This is just so sweet. Sometimes the girls don’t really communicate well with each other, but they definitely support each other on things like this. It would be so much harder if Emily complained loudly and insisted on eating big bowls of pretzels in front of Ana. I’m really proud of both of them.

I wanted to write some advice on navigating the healthcare system in the midst of a healthcare crisis, but it’s after 11:00 p.m. on Sunday night and I just don’t have it in me right now. I’ve been thinking about writing about this for a while. I mean, I’m still figuring all this shit out myself, but I know so much more than I did five months ago. Plus now I’m REALLY inspired by an amazing Time Magazine piece called, “Bitter Pill: Why Medical Bills Are Killing Us” which was brilliantly written by Steven Brill. It’s about 37 pages long.

I learned about the article by watching The Daily Show (sadly, my main source of news these days). It follows the money trail for seven people who had various health issues that landed them in hospitals either for emergency situations (e.g., a slip and fall) or critical health issues (e.g., cancer, heart attack, etc.). Some of these people were under-insured, some did not have insurance at all – the scary reality for all of them was the incredibly high cost of all services and supplies they encountered in the hospital setting. Most of us are shielded from these costs by our insurance companies who negotiate the “sticker price” of procedures and supplies. But when your insurance coverage ends (or doesn’t exist at all) you are billed at this un-discounted price which, according to the article, is arbitrary and extremely inflated.

I have a $9000 deductible plus another $1000 to hit an out-of-pocket max which, when met, means everything is covered. This is above and beyond the $500 monthly insurance premiums that I pay. So, for $16,000/year all four of us are covered 100% for hospital services and prescriptions (although this does not include anything that’s not part of the healthcare plan – like vision and dental).

Before Ana got sick, my healthcare plan was a bargain at $500/month. We paid for maybe $2000 to $3000 in out of pocket expenses, including prescription drugs, on top of the $6000/year in premiums. That’s actually not too bad. But Ana’s illness pushed our out of pocket expenses to the maximum our plan required before our benefits kicked in. Still, that’s a drop in the bucket. I got one explanation of benefits that totaled about $250,000- just ONE. I have a folder filled with EOBS that likely total another $100,000 or more. So, I’m lucky it only cost us $16,000 in 2012 and will cost us the same this year.

Many of the people in Brill’s article weren’t so lucky. They had health plans that paid maximum benefits of $60,000 per year (for example). Ana’s 40-day stay at Westchester Medical Center was nearly six times that amount. That was just for that one hospital stay – she was hospitalized two more times in 2012 and also had outpatient chemotherapy about four times. So, as much as I ranted and raved about CDPHP’s refusal to let Ana get her transplant at Westchester, I am EXTREMELY grateful that they covered as much as they did, particularly after reading this article.

So – my first piece of advice is to read it. My next piece of advice – well, that will have to wait for now. Must get some rest.

We will find out the results of Ana’s most recent blood tests tomorrow and also get the final word about the needle biopsy which she is scheduled to get on Tuesday. She may not need the biopsy…but, honestly, I don’t think we’ll be that lucky. I do want them to be thorough though, but I hate to put her through yet another invasive procedure. I’ll post an update when I have more info.


  • Aunt Amy February 25, 2013 at 12:42 pm

    It was so good to see you all last night. Ana seemed closer to herself than I have seen her in a long time. She actually seems a better self. She seems more grown up and comfortable in her skin than even before her illness, now that she’s had the surgery and is starting to feel better. I don’t know if I’m explaining it right but it feels to me like there are positive changes that go beyond just the physical healing. I know she’s going to be great in the end and have a wonderful life and I am so happy to be her aunt and share a part of that with her. Whatever happens with this blood test and all the others she will have to have, she grows stronger and more capable of dealing with it which will transfer to so many things in life. She is inspiring to watch.


  • Nita February 25, 2013 at 10:03 am

    There’s a sparkle in her eyes and a healthy glow to her cheeks!! Ana, you look “mah-vu-lous”!


  • cindy February 25, 2013 at 5:23 am

    Adorable picture of Ana! So glad to hear Ana had a good day!


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