How a family emergency renewed my focus as a benefit adviser

Late last year, our 13-year-old daughter, Hannah, complained of bruising and bleeding a bit more than usual. Our direct primary care physician drew blood, then called my wife and I and told us to take her to the ER immediately. Turns out, her platelet count was dangerously low: normal levels are 150,000 to 450,000 platelets per microliter of blood; Hannah's were at 7,000. The urgency was possible internal bleeding or failure of a cut to clot. 

All the ER did? Refer us to a hematologist.

As a benefit adviser, I'm passionate about helping my employer clients and their teams arm themselves with enough potentially life-saving information to navigate the mind-numbing maze that is the U.S. healthcare system. But this personal experience still served as a massive wake-up call for me. Even I can get played by what I often describe as the "cartel." If my cautionary tale helps you and your clients stay out of harm's way, then all of the stress and chaos we had to endure would have been well worth the trouble.

After the failed trip to the ER, my wife, Emma, started to do research. We concluded the most likely diagnosis was idiopathic thrombocytopenic purpura (ITP). We went to the hematologist, who was attached to a Children's Cancer Hospital, with fear of a leukemia diagnosis looming. Luckily a quick blood test showed normal white blood cell counts and other results that led the doctor to conclude it was indeed ITP. 

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He told us he wanted to infuse her with an immunoglobulin called IVIG, which has a rapid platelet uptick response and would allow us to determine if this was acute and likely to go away, or chronic, which would require long-term management.

While my daughter's health and well-being is always paramount, Americans unfortunately must face the financial consequence of our decisions. Of course, I wondered how much this would cost and learned that the $13,000 price tag would be cut in half if we paid cash. 

"How much of that $6,500 is the drug versus administration of the drug?" I asked. The nurse I spoke with noted that all but $410 was traced to the cost of that drug. "Great, I already priced that drug out, and I can get it for $2,300," I explained. "So I will buy it at a local pharmacy and bring it in to have you do the administration." 

I already knew what she was going to say: "I'm sorry, but we do not allow that." I asked her why, and she gave me a litany of reasons from liability to hot cars and more. Mind you, this is a "nonprofit" hospital system. I reminded her that it is a shelf-stable drug requiring no special temperature controls. But she was nonplussed and said, "I have been working here 16 years, and we have never allowed it." I pointed out that it sounds to me like this nonprofit hospital system is trying to profit from a drug it didn't make, research or do clinical trials on. I even offered to double their administration fee. She was unfazed. 

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Let me tell you what I wasn't given the opportunity to do: It's called informed consent. I was never told the side effects or alternative options. Had I asked for that, the path would have been very different.

The next day, my wife drove our daughter to the Children's Cancer Hospital for this infusion, which dripped for more than four hours. The following 36 hours were miserable. She was violently ill and could not leave the bathroom. But once we got through that, she felt okay. A week later, her blood levels were 151,000, just barely inside the normal range. However, one week later they plummeted to 6,000, below where they were pre-infusion.

Back to the hematologist we go. He said he wanted to start her on a series of oral corticosteroids, or generic Prednisone. That costs $3.48 — perhaps, I thought to myself, we should have started with that? 

Quicker than expected, I get the bill for the infusion, but it wasn't $13,000 minus 50%, it was $22,000 minus 50%. I posted this online, and am grateful to the clinical community I've cultivated on social media. Two different doctors sent me papers, both of which said that in the case of a pediatric patient, absent life threatening bleeding or urgent surgery, the steroid should be first.

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So after the overpriced infusion, we started her on a course of steroids. This is not meant to be a long-term solution, but if this is acute, as in more than 80% of pediatric patients, it should get her platelet counts up long enough to see. So far, the steroid has had a greater and far longer-term positive impact on her counts than the infusion did.

In our haste to address potentially serious medical issues amid the inevitable backdrop of high anxiety, it's easy to follow doctors' orders and not question alternative treatments. But with the potential for eye-popping price-tags, we cannot afford to be complacent. Experiencing this ordeal reminded me that without access to critically important information, including key resources such as an informed consent agreement or a healthcare advocate, even those of us who know the perversity of industry better than anyone can fall into dangerous traps that can place our loved ones at great risk. 

The only possible solution is to be prepared for these worst-case scenarios before they happen and be sure that the right checks and balances are in place to seed the vigilance necessary to protect our health and safety.