A Health Economist Confronts His Family's Medical Costs

Facing high drug and doctor bills, this expert struggled to ensure quality care at an affordable price

By James Lee
Originally Posted On May 13, 2013

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James Lee is Vice President, Integrated Business Development for the Altarum Institute, a nonprofit health systems research and consulting group.

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In my life as a health care economist, I’ve grown used to contemplating complex scenarios and navigating difficult solutions to the nation’s medical problems.
 
But until recently, I haven’t had much reason to apply those skills to my family’s well-being since we’ve generally been healthy and have had excellent care providers when we needed them.
 
The Challenges of Real-Life Health Costs
 
Things changed dramatically for us this year, though, when my wife, son and father faced difficult financial and clinical decisions. The experiences were eye-opening.
 
With a $10,000 annual deductible on our health plan (excluding preventive services), I realized that the choices we needed to make about medical treatment would have a real effect on our lives. Weighing the costs and benefits was no easy task, though.
 
$234 Per Month for An Acne Remedy
 
My story starts with my teenage son’s case of minor acne. Having had severe acne myself, I was sensitive to the awkwardness it adds to an already awkward age. So I quickly got him an over-the-counter product, which cost about $10 per month.
 
Being a normal teenager, he questioned my remedy. We agreed to talk about it with his pediatrician during his annual preventive health checkup.
 
Although the pediatrician agreed with my treatment plan, he also knew that acne can be a big deal to a teenager. Consequently, he prescribed a well-known gel. We didn’t think to ask about the price; even if we had, the doctor was not likely to know.

It turned out that a 30-day supply would cost $234.
 
Looking at the medication label, I recognized that its ingredients included one found in the OTC medications my son was already using, combined with a generic antibiotic gel.
 
I emailed the pediatrician, asking whether he could prescribe the antibiotic only, which would be far cheaper, and if applying it and the OTC product would pose any problems.
 
He said the major stumbling block would be getting my son to use two medications, not one.
 
But my son agreed to put up with a bit of inconvenience and save our family more than $2,200 per year. (I decided to not press my luck and tell him just to go with Dad’s original $10-per-month solution. As a father, I’ve learned to pick my battles.)
 
Was a $15,000 Annual Prescription Necessary?
 
The clinical and financial stakes grew even greater when my wife developed gastrointestinal issues that were leading to malabsorption of some key vitamins.
 
It took more than $11,500 in diagnostic tests, of which we paid $8,000 out of pocket, to rule out life-threatening troubles.
 
My wife’s gastroenterologist said she had a “pooped-out pancreas” (technically known as idiopathic pancreatic insufficiency) and recommended a prescription that would cost upwards of $15,000 a year — most likely for the rest of her life.
 
With some investigation, though, I learned that the prescribed medication had been on the market for only a short time and was actually a reformulation of three enzymes readily available separately.
 
I was not particularly impressed with the clinical trials that led to the Food and Drug Administration approval, though. They showed that the medication was safe and relatively effective at improving one clinical marker, but there were no measures of patient outcomes.
 
Our primary care physician and the pharmacist confirmed that a substitute for the previously prescribed drug was available for about $480 per year.
 
The gastroenterologist hesitantly agreed that the substitute could be an acceptable alternative, but expressed vague concerns about its safety.
 
When my wife pressed her about switching to less costly alternatives, the gastroenterologist objected. She preferred my wife stay the course with the brand-name pharmaceutical for at least a year to see how it worked.
 
Easy for her to say!
 
In the meantime, we’ll shell out $10,000 in 2013 to continue the medication, even though my wife and her primary care physician and nutritionist aren’t convinced that she’ll get much benefit from it.
 
Our proposed substitution would have saved us about $14,500 a year, which would obviously appeal to us and to our health insurer.
 
My Dad’s End-of-Life Wishes
 
Then there’s my father. He survived a mild heart attack, has been living with locally metastasized prostate cancer and has kept his diabetes under control.
 
The heart issue was of greatest concern to his physician, who felt the prostate cancer would likely respond to therapy and noted it has very good five-year survival rates. In fact, the oncologist said my father would likely die of heart disease before the cancer got him.
 
This conversation was a wake-up call for our family. It led my father to revisit his will and update his end-of-life wishes after having several meaningful conversations with us about his hopes and preferences.
 
While talking about my role as his backup medical power of attorney if the primary one was unavailable, my dad and I spoke about the cost of end-of-life care.
 
Dad said, “Well, I would want to spend $1,000 a day for a couple of weeks to extend my life, assuming I could interact with people and achieve some life closure. But, after that, it would not be a good use of money.”
 
He wasn’t even talking about his money. He would be relying on Medicare and retiree health insurance financed by his former employer.
 
Above all, I came away realizing that we need to be fully engaged in decisions regarding our medical care and its cost. But we can’t do it alone.
 
It is not for lack of trying that people are defeated by this system.
 
Like me, most are well-intentioned patients who, when faced with difficult medical and financial decisions, discover that they can seldom get the answers they're searching for.
 
We need insurers and health care providers who can help us make wise choices by providing transparent information on cost and quality.
 
Without this kind of data and an accompanying dialogue, we’ll continue seeing the inexorable rise in unsustainable health care costs. And that’s a national ill we can’t afford.